[Re-posting each and every post is draining my brain bucks fast, so, I figured I would simply do three huge posts for each year. They are in order from top to bottom so you don’t have to continually scroll up. I thought this should make it easier for us all, and less confusing for me. Thanks for your patience, I have one speed and it’s not fast!]
Back to the Beginning: A Life Filled with Questions (posted Aug. 15, 2008)
It was a beautiful summer day June 2002, I was heading to a volunteer orientation on the other side of town. I’d left work in plenty of time to go home, change clothes, get my dog and be on our way. We were just about to our destination when I noticed the freeway traffic ahead of us stopping suddenly.
Because I loved Traffic Safety in high school, I remember the teacher’s words, “Always look for a way out.” I saw the car in front of me struggle to stop in time, the hitting of the brakes causing the back end to rise and fall. I knew I would swerve to the left as there was enough road ahead I could end up parallel to the car in front of us, and avoid hitting them. As I turned the wheel to the left, bam! Out of nowhere a car struck us from behind and forced us off the pavement into a sharp, downward facing embankment. The force caused my big dog to be thrown from the back seat into the dashboard. Dazed and shaking I got out of the car to see if the driver that hit us was okay. Traumatized, my dog didn’t want to stay in the car, but being in the embankment between oncoming traffic, I had to force her to stay inside.
The gal whose car I swerved to miss left the scene! Someone said they’d called 911, there had been an accident up ahead like the one we just had, the state patrol were already on their way. Wow. The gal who hit me asked to use my cell phone, and I said yes. In time, the state patrol came, took our statements and towed the gal’s car who hit me. Her car was totaled, I’d learn later, mine would be too although drivable, it would no longer have resale value.
I still went ahead to the orientation, but had trouble following what the speaker was saying. We were supposed to find a partner and roll play, but heck if I understood what he meant by that. It was odd, I just couldn’t understand what he was saying. During a break I called the chiropractor I worked for at his home, we had been close friends. He asked where I hurt and I said I didn’t know. I noticed my muscles were stiff all over. He offered to come into the office the following day (his day off) to get x-rays and check things out.
The following day after the x-rays he showed me the damage, the centimeters my neck was out of alignment demonstrated the amount of force my neck sustained. For each centimeter he said you can add ten pounds of pressure. It was a lot! Spinal adjustments which I’d had for years suddenly became very painful as we tried to correct that which had been undone in a split second. He said basically, my back looked like a corkscrew, I had been twisted when I was hit and then whip lashed. Wow!
In time, I began to feel like my head was heavy, like if the wind blew too hard, I’d be knocked over! I remember saying my body felt different, like a sardine that no longer fit in the can and I felt like a Brontosaurus, like I had sprouted a tail! It was the oddest thing, I felt like my hips would not cooperate to work together. I remember saying I think they’d work better if they could be separated!
Although my bodily injuries could be measured and documented, I felt “different.” I mentioned it twice to the chiropractor asking if he could refer me to a neurologist, but he said they wouldn’t be able to tell me any more than I had a Concussion and it would take time to heal. The chiropractor could acknowledge I had “a lot of things going on” in his terms, meaning I had a lot of injuries, but never once was Head or Brain Injury brought into the equation. Somewhere deep inside of me, I knew I’d changed, but didn’t know how.
Everything seemed so much more difficult. I’d had injuries before, but something here was very different. In addition to all the body pain, I found my behavior changed, my emotions different, I couldn’t fight this nagging fatigue and exhaustion, I would become tremendously tired after things I used to be able to do fine. I couldn’t follow conversations, I got confused easily, I seemed to get agitated and anxious when I had confidence before. I was making mistakes at work, I could not remember the scripts I had previously memorized. I couldn’t keep up with changes that were being made in our procedures every week. I thought I was going crazy. I began to feel like the office’s problem.
Our family had previously scheduled a big reunion and my accident was just two weeks prior. I had to catch a plane, and at that time, our airport was being remodeled, the lines were incredibly long. I remember trying to say some intelligent, amusing comment to the person in front of me and it didn’t come out at all as I had thought it out. I was embarrassed and didn’t say a word after that. I remember being so tired I couldn’t wait to get on the plane to sleep. It was not a lack of sleep that was causing all this…
At the family reunion I could not recall names of the people I’d met and me, a people person, could not think of a single question to ask anyone! It was the oddest thing, I was there, but not completely. I remember having to take naps…okay, are they naps when they last eight hours?!! I would sleep but never felt rested. What was happening to me? Why couldn’t I make myself be myself?
After the reunion, I returned home exhausted and again slept a lot. I figured all of it was due to the physical injuries from the accident. I’m not sure if it was when I returned to work that the doctor’s wife had to come into the office and help me run the front desk or not. But at some point in time early on it was obvious I wasn’t able to do my job like I had before. The confusion, forgetfulness, fatigue, etc., were all bewildering to me.
In time, the mistakes and un-selflike behavior caught up and I was fired from my job less than two months after I purchased my first home. My bosses, who had been dear, dear friends, who even helped me move, thought I had chosen my behavior. Why would I change like that? Who would choose to be a certain way and then polar opposite after a car accident? For some reason they could not see the inner struggle nor recognize I wasn’t the person I had been only because of the accident. Oh how I wished I could just flip a switch and be my old self!
…more to come!…
Tags: brain fatigue, deficits, exhaustion, living with traumatic brain injury, Realities of living with TBI, rest, traumatic brain injury
Back to the Beginning: Destination: Diagnosis (posted Aug. 18 2008)
With my ongoing struggles, I still knew somewhere deep down inside that I had changed, something about me was, well, ‘different.’ Having lost my job with the chiropractor and my spinal care was not complete, I went to another chiropractor. I asked her too, would she please refer me to a neurologist as I knew I was different. She said she would refer me to one an hour and a half away, it never happened. I didn’t find I was getting better under her care so I went to another chiropractor. With this third chiropractor, I posed her the same question, she said we needed to get my x-rays and we’d go from there. Fortunately she had an employee who suffered a Traumatic Brain Injury so she had first-hand knowledge, and her answer to me about a referral? She said that would be the prudent thing to do. Thank God.
In March 2003, after a visit to a neurologist and struggling to figure out how to draw a regular non-digital clock and many other tests, I was diagnosed with Traumatic Brain Injury. I was referred to Occupational and Speech Therapy, and if need be, there was a Social Worker I could speak with as well.
It was there I learned about Brain Injury, that I wasn’t going crazy, and in fact, many of the things I was dealing with were considered ‘normal’. Instead of rejection, shunning, or judgment, I walked into what I call “A Garden of Understanding,” and that I “walked amongst angels” there. They understood. They treated us with dignity and respect, that all we were experiencing was normal. They didn’t laugh at me for not being able to mark my own appointments down on the calendar they printed out for me because I couldn’t figure out where I needed to write them. They didn’t laugh at me when the wires in my brain got crossed and I showed up for my appointments on the wrong day. They didn’t criticize me or tell me to cheer up when I was depressed from this dark, bewildering world that now surrounded me. It was there the real healing began, a deep validation of this jagged path, and where I learned about real ministry. They had a plan for me, but if I came in struggling with something else, we dealt with that. I learned how often we fail at trying to help people because we have agendas of our own (often well-intended, but well mis-directed!)
In many ways, I had to start over learning the things I once knew and took for granted. I had to learn ‘compensatory strategies’ to help my brain cope with these new found and validated losses. I had to re-learn balance, I would get this weird whoohoo kind of feeling, like being dizzy if I moved too fast. I had to re-learn how to be able to do two things at once like exercising and trying to count. It was the oddest thing for this Go-Getter who had been quite the multi-tasker.
I distinctly remember my neurologist telling me I would do much better in a slower-paced environment, that if I could learn a new language, living in a foreign country would be best. Living in a quieter, slower paced world would now be where I fit in best, but the transition? Well? I didn’t really understand it would be for my best to go willingly!
At this time I was working for friends in real estate, they had known me from before the accident and they said they definitely saw a difference in me. It is a strange thing to be the same before everyone, some seeing the changes, some denying them or saying I had chosen to be different, or whatever. I wish it were that simple. It took me years to figure out the firing from my job was more personal than professional, and that hurt a lot. They had been my friends, or so I thought. Even a patient I knew outside of the office who also had a Head Injury knew, she had seen the difference in me while I still worked for the chiropractor. It was a terribly painful loss, it had been my ministry and purpose, and I would later learn, it was a very valuable part of my routine, and once that changed, my world would not ever be the same. The brain needs routine, consistency, and not a lot of change when it’s healing. That routine, being accepted and a part of a system, as well as community were my foundation. But I had struggled there, made mistakes and really did feel like the office problem.
I continued rehab for just a couple of months until my auto accident insurance coverage ran out. I had been discharged from chiropractic care, was still seeking alternative medicines when I was rear-ended a second time. I had just started back into my old routine and was giving myself a day off to sleep in before going into work. Up until that day, being rear-ended again was one of my greatest fears.
This time, twisted and turning to the right, not on the freeway, it still managed to do some damage. All that work I had just done at rehab, gone. Once again, my memory had been lost as if someone took a magnet to the hard drive of my computer. I cried calling 911, I cried telling the poor officer that arrived on the scene, this babbling woman trying to tell him this was my greatest fear, I so didn’t want to go back to rehab and start all over again.
I did not know until much later after working my tail feathers off again at rehab that Brain Injuries are cumulative. While there would be some progress, after two years, that would be the majority of progress I would see. There would be little bits of progress, but after that, plateau.
I did everything everyone told me to do, diet, exercise, brain exercises, more compensatory strategies, rest, taking breaks, hydration, vitamins, joined support groups, everything. Despite my trying to do everything humanly possible, I could not undo the injury to the control center of my body. And this time, I would have something new to deal with, being sensitive to indoor and outdoor lighting.
I now work from home as an accommodation to my extreme sensitivity to noise, movement, lights, distractions, etc. All that used to energize me in my old life now exhausts me. I learned an injured brain has to work three to four times harder to do the things it used to do without any effort at all. Between that and over-stimuli as mentioned above, I can get tired tremendously easy. I have joked in the past that me going from a Type-A Go-Getter to the lifestyle of a Monk just isn’t going to be a smooth transition!
Because of short-term memory issues, relationships are difficult to maintain. A part of relationships is shared experiences to which I am now limited, and remembering those shared experiences. I have missed out on church, concerts, traveling, even my high school reunion because of my disability. It has taken me literally years of saying to myself, “I am disabled” or “I have a disability” for it to sink in. It was terribly difficult, and still is at times, to accept. I have no troubles with anyone else being disabled, but for me, I struggled. We grew up with strong work ethics, if something didn’t go right, you just worked harder! Good honest hard work always paid off. Until this.
I wish I could candy coat this and say it all turns out great in the end, but I can’t. I have more questions than I do answers and currently my energy and focus is on one of the last things that remains from my old life, that is, my house and pets. How do I function in this world where I’m not fully-abled nor am I fully-disabled? My intellect has remained, and if you saw me on the street, just like many other Brain Injured folks, you wouldn’t be able to tell the difference. But the grand struggle, the great Catch-22 is I can no longer work full-time. I can’t do the work I used to do and due to short-term memory loss, can’t learn a new job and actually remember how to do it. I’ve been doing the work I do now (piecework, real estate) for five plus years now. I still don’t have the job down, and yes, I do get laughed at (ridiculed) for my mistakes.
I have been turned down by Social Security the time I applied years ago, and figured I just wasn’t disabled enough and I’d have to go back to working harder. I did that, and it didn’t work. It’s not that I don’t want to work, but I’m learning that I have a tremendously small balance scale. Either I can have a house and a job and watch my health fail (oh the joys of stress!), or I can have a life and watch my health get better.
It’s tough, because in so many ways, the limitations I have are unseen. If I overdo, I can spend the next several days unable to get out of bed, too tired to even eat, waiting for my brain to recover (I read years ago it can take an injured brain up to ten times longer to recover than a non-injured brain.) Or, I can have migraines, or, as is the current deal, other body parts start to act up or shut down because of continued ongoing financial strain. I’ve been doing this deal for six years, trying to keep my home and the only stability I have in life right now. And, to keep my pets. I don’t get to have much of a social life, so my pets are my family, they help me feel connected and more human.
And it’s not that now I’m disabled I stopped desiring the normal things of life, happy home life with a marital partner, making a difference in the community and world. I still dearly miss being connected. I miss volunteering!
What would you do in my shoes? You’re down to your last six months of savings, you haven’t had health care insurance in years, your ability to work full-time is gone, the prospects for learning and maintaining a new job are dismal, the concept of moving is about the same for you as would be moving an elderly person.
So many choices have been taken away from me, the basic things I dearly wish to keep are my home and animal family.
Where do you turn? Where do all the disabled people go in this world? What do you do when you’ve exhausted all the resources you can find?
How do I express need without sounding needy? How do I express desperation without sounding desperate?
But most of all, what are the long-term solutions where the six years of struggle and decline of health end once and for all? And I can get on with the blessed gift of truly living?
Tags: TBI, Traumatic Brain Injury, mTBI, diagnosis, PTSD, auto accident, MVA, Neurologist, help, disabled, home
Back to the Beginning: New Stormfront: Disability Attorney
(posted Aug. 22, 2008)
Yesterday I met with a Disability attorney to see if I can get on Disability, I have to at least try. I hit my wall of fatigue last fall knowing full well I cannot continue to devastate my body and life by the continued, ongoing struggle to just merely survive.
For over two hours she asked questions and I tried my best to dig into the “deep storage” of my brain to answer her. I found it quite gracious all I had to do was answer her questions, instead of having to fill out the paperwork too. That was a huge help for me. I was already on day two of a continuing migraine, so that coupled with an injured brain, any and all help is greatly appreciated.
She said we may have difficulty proving my case in that I have been able to work in the past. I explained that’s just it, I hit that wall last fall and I’m still a Go-Getter, Type-A Personality inside, but I can’t continue living at this pace. I’ve already undone some of my own health by trying to continually works so hard. It’s not like I want to be rich or famous, I just want to have a good life. Losing my house and everything, including my pets, just doesn’t feel like part of a good life.
My options are few, because I have some resources I’ve been saving for a long time, I do not qualify for certain assistance. It is a Catch-22 being neither fully abled nor fully disabled.
A disability hearing will probably be in eighteen months. I’ve already done everything else everyone has suggested to me, everything. I’ve gone through the systems I once thought were there to help people only to learn systems exist for systems themselves, not for people. I don’t think I take this personally because I know others who have struggled in the same system. And I can’t help but wonder what happens to people’s psyches when they fight so hard to do the right thing, live an honest life, and find there is no help for their situation. It is almost as if the world speaks to those who are disabled that they deserve to lose everything that matters to them. I always had faith there were systems in place to help people. Maybe they’re out there, but finding them, being eligible, and not being put on an endless waiting list seem difficult to find at best.
I find this all tremendously embarrassing. A couple weeks ago I had to go to DSHS for assistance, all I could qualify for was food stamps, but I’ll tell you, I’m grateful for any help I can get. At least for now, no worries about where the next meal will come from. But I did struggle all the same with having to go get help. Perhaps it’s pride. Perhaps it’s being fiercely independent, I don’t know. I was not quite sure if I wanted to cry or throw up! I do know we were raised to have strong work ethics and to not be able to work myself into being better, or let me rephrase that, being able to work myself out of a disability, feels like failure. It feels more like a life out of control instead of all the planning and preparing we were taught to do as children. We were taught to save, plan for retirement, etc., planning for being disabled just wasn’t on my list and honestly it’s a struggle. I just never imagined this as part of my future.
I’ve often said that early on in the discovery of my Brain Injury that it felt too much like I was the center of attention. I didn’t want to go walking around like there was this big arrow over my head pointing at me. And, it often felt like I was in a group of strangers, I was pulling open my chest cavity and everyone was pointing at my mistakes and the things I was struggling with so much.
It feels embarrassing, bewildering, and like everyone is constantly taking a microscope to my life, and I don’t get to do the same to them. So the vulnerability of all this has never become comfortable in the last six years. Some people are in this to help and have the best of intentions, but oftentimes those who rush in are the very ones who will take advantage of a disabled person who has hit rock bottom.
And I think, most of all, I just wish more than anything to get back to more of a life that isn’t so constantly threatened by the loss of everything that looms on the horizon. I haven’t known for six years if I’d be able to keep the house or not and I’ve been fighting like mad to keep that major loss from happening. I have seen what happens to other people in my shoes, they lose everything, and I have fought like crazy to keep that from happening here.
I encountered all this loss of life and purpose because of one person’s inattentive driving. If I had caused this to my own life through recklessness or substance abuse I think I could stand letting my life and possessions go.
Isn’t it enough relationships were lost, the ability to go to concerts, church, fairs, any loud event, being able to handle groups, heck, just being able to work in a normal environment. All other aspects of my life have been lost to this, must I lose my house and pets too? It is not easy for a social butterfly to be caged, but once her cage is gone, what is left?
I want to get back to being able to make a difference in this world. I miss teaching, ministry, volunteering, having friends, being connected to a community.
Just because I’m disabled now doesn’t mean I care any less about this world we live in or wish to no longer make a difference. I want my life to matter, to count for something other than this struggle no one sees.
I want to, as one of my heroes,
Mother Teresa said,
“To do something beautiful for God.”
It is tough to go through this entire process of going from being fully abled to partly abled/disabled and keeping my heart and spirit open. It is tough because the news is not often good, so much so I became accustomed to the bad news, and would be surprised and unbelieving at the good news! Yes, it is a tough journey, not for the faint of heart. So, getting help often feels more like bringing more bad than good…
Hope for the best, but be prepared for the worst…
Tags: assistance, attorney, challenging the status quo, disability, disabled, dreams, DSHS, getting help, grief, head injury, hopes, humanity, letting go, life questions, loss, PTSD, purpose, questioning the system, rehabilitation, resources, shut-ins, statistics, suicide, traumatic brain injury
Back to the Beginning: Bob Woodruff’s Excellent Video “To Iraq and Back”
(posted Sept. 7, 2008)
This riveting report by Bob Woodruff, who sustained a Traumatic Brain Injury reporting in Iraq, was sent to me on DVD by a dear, fellow TBIer. I recently found the video online at ABC News and am glad to be able to share. It is a compelling and honest look at Bob Woodruff’s Traumatic Brain Injury and fight to recover:
The second part Bob gives voice to the lives of our beloved soldiers returning from Iraq with TBI. It is a call to awareness, action, and compassion.
We must continue to support our troops as they return from war and in their ongoing battle living with Traumatic Brain Injury. Those who died did not die in vain, we must assure those who live with TBI do not live in vain.
Tags: Bob Woodruff, living with traumatic brain injury, post traumatic stress disorder, supporting our troops, To Iraq and Back video, traumatic brain injury
Back to the Beginning: Birth Pains of a Solution or a Flippin’ Crazy Idea??!!
(posted Sept. 8, 2008)
I received comments regarding this odd concept of a fundraiser to pay off the mortgage. I’ll tell you how it came about if you will grant me a few minutes of your time and an open heart. Please, if you’re moved to speak in response to this, speak sweetly. It is a raw moment in recent memory, and sharing it is about as comfortable as opening my chest cavity.
My Heart’s Cry/The Birth
During what I needed to be my last time bawling over losing everything and a disability I cannot make better, in desperation and exhaustion I cried out to God asking Him to do SOMETHING, anything! I felt I would have a nervous breakdown or heart attack, I could no longer bear the ongoing financial strain and stress. It’s hard being the old go-getter now with limitations. At that rock bottom moment, God spoke all we need to do is pay off the mortgage. Where in the heck did that come from? In unbelief I jokingly said, “Oh, that’s all!” He then gently reminded me of the Scripture He owns the cattle on thousands of hills. I still thought it was the craziest thing I ever heard. For some reason the Scripture settled my aching heart into rare peace, able to stop crying, I tried to wrap my brain around this weird new concept. I wondered how in the heck He would make that happen. It was something I would never ask for. I’m the giver! Not the given to.
Over time the stirring in my heart refused to settle. I wondered if it was indeed meant to be, so asked God how in the heck this could be done. In time, He reminded me of a friend with disabilities in a care center over a hundred miles from his church congregation. I used craigslist and an online group to ask for web cameras, and sure enough, I received several folks weren’t using! I happily sent them on their way and felt blessed being a part of connecting this man to his lifeline of old friends. I had no problem asking on his behalf, the people were gracious angels. What an awesome blessing for us all to be a part of! The thought entered my mind, heck, if I had a friend going through hard times for so many years after becoming disabled, I knew she had done everything she could do, I would start a fundraiser to pay her mortgage off. It was far simpler thinking of this for someone else than for myself.
I’m not waving, I’m drowning
It may be the craziest thing I’ve ever done in life, but I have to try one last time. I can’t give up without one last fight. My Dad was a Navy Seabee in WWII and I think I have that fighting spirit! I do know I can’t do this on my own, I need help, for a fiercely independent and private woman asking for help is as attractive as getting a root canal…I think I’d choose the root canal!
Can we turn the Titanic around?
I need help. I’d gotten to the point where I started a letter to service organizations and churches in the area asking to be adopted as their charity. I couldn’t send it. It didn’t sound right to me to send something from me for me, I couldn’t do it. I was able to re-write it as though I was writing for a friend, that felt better. There is much more power in a story where friends or family are supporting the person in need.
Even if you think I’m crazy or flakier than a box of Corn Flakes, please keep me in your prayers. Maybe I am crazy, maybe this is a fly-by-night goofy idea. I’ve been a fool for lesser things! If God does want for me to lose my house, this will be a most upsetting time. People with my disability don’t do well with change. Our homes are tools for thriving, they are everything to us because we are shut-ins. They become our sanctuaries as we are so sensitive to noise, light, movement, etc. My house and my pets are all that remain from my pre-disabled life. My special lifelong connection with animals is one more thing that has kept me afloat these last several years. Being a shut-in and having their angelic companionship has saved me.
Thank you kindly for taking the time and for listening to my heart.
I’ve never been disabled before, been without a way to earn a living, and never faced losing my home before.
I don’t know what God has in store with this. Maybe it works out, maybe it doesn’t. It would sure do my heart good to be a catalyst of change and be an encouragement to other folks in my shoes. Wouldn’t it be something else to change the world for those the Bible calls “the least of these” and for so much has been lost? Yet, have you ever been around disabled folks who are so loving they would give you their very life? That’s what I would like to do. Give with my life.
My all-time favorite song is “Secret Ambition” by Michael W. Smith. He sings that nobody knew His (Jesus’) secret ambition was to change the world with his love by giving His life away.
Blessings, dear reader, blessings on you.
Thank you for choosing to be here. Knowing I’m not just writing to the wind helps me feel more connected to the world outside these walls and gives me the strength, hope, and support to carry on.
Tags: asking for help, help, hope, mortgage, navy SeaBee, needing assistance, struggle, support, TBI, WWII
Back to the Beginning: Dealing with Unemployment (posted Sept. 9, 2008)
Okay – here we go on this crazy journey of dealing with Unemployment. I was told I was eligible for an extension of benefits early last month – yeah, I thought.
I received the paperwork, sent it in right away. Nothing happened.
I called. They said I was eligible for a new claim. Okay…I guess that’s good. I received the paperwork, sent it in right away. Nothing happened.
I called again. They said there was a question about my availability. Yes, you guess it, more paperwork. I received it, sent it right away. Nothing happened.
I called. They said because of this issue with my availability they needed to know why I wasn’t seeking full-time work. I was, I said, but I cannot work full-time. They need, yes, you guessed it, more paperwork, this time from my doctor.
I received the paperwork, sent it immediately to my doctor and waited. She was to have returned it to Unemployment by August 28. Yeah, I thought, this was over.
I called last week as I’ve been unable to file claims, I can only check on my claim status which hasn’t changed from the middle of last month.
I called. This has taken over a month for them to fiddle around regarding my benefits. I can’t help but wonder when we will have to get attorneys to go get our Unemployment benefits for us!
Today I received more documentation in the mail, and get this, there is a six-page questionnaire asking why I “voluntarily quit my job.” I didn’t quit! All told, I received ten pages from Unemployment! Insanity! Insanity, I tell you!!
I only have a cell phone with limited minutes and trying to get through to the department is like playing Russian Roulette. You can go all the way through pushing the buttons, even entering your SSN only to get to a recording saying “Due to high call volumes we’re unable to take your call at this time, please call back later.”
Oh my gosh! I just tried calling again twice, same thing. This has been over a month without benefits. This is just crazy. If I’m eligible, fine. If I’m not, fine. Why the crazy rat race???
Oh my gosh, I am SO frustrated!!!! It takes me a tremendous amount of energy to make phone calls because of my slowed processing. Oh joy, oh bliss…my brain is fried!!
Tags: brain budget, Brain Injury, mTBI, processing speed, Realities of living with TBI, TBI, unemployment
Back to the Beginning: Unemployment and Incredibly, Incredibly GREAT News about Dad (posted Sept. 9, 2008)
I Spoke with a Human at Unemployment!
What a relief, after nearly 20 minutes on hold, I got to speak to a real person, and one with a sense of humor too. Thank God! I don’t have to fill out the 6-page questionnaire and they’re determining whether I’m actually eligible to receive benefits or not (even though earlier I was told I was eligible for an extension and later, a new claim.)
Due to the high unemployment rate, she told me they’ve been swamped and apologized for the horrible wait and the confusion with the paperwork. She said the extension of benefits added a lot to their workload. She was really sweet and helpful and I told her how much I appreciated her help. I also asked for the best days or times to call as I’m calling from a cell phone with limited minutes. She was dear, she said Thursdays are the best days to call. Thank God that’s over. If I don’t receive word from them by next week, call them back then, this typically takes 4-6 weeks for them to make their decision.
Deep breath in, deep breath out. Onto the next task!
Incredible, Incredibly GREAT News About Dad!
My Step Mom just called and put my Dad on the phone. Not only did I get to talk to him for only the third time via phone since his surgery in June, but, get this – if everything goes well, he will be going home the end of next week! They’re targeting Friday the 20th!!!
Is that awesome or what?! Considering there was a point where the doctors didn’t think he would make it, this is a precious miracle.
Thank you SO very much for your prayers. He will still have a long recovery ahead of him, but thank God, he will get to be back in the comfort of his own home.
It’s been three months since his surgery, most of it he spent in ICU on life support. Phew. I am elated, tremendously grateful and in awe.
I was so excited at the news I was jumping up and down like a little child at Christmas. This…is the greatest gift ever. Let’s par-tay!!!
Tags: dad, gratitude, miracle, thank you for your prayers, unemployment, update
Back to the Beginning: This Made My Day! (posted Sept. 11, 2008)
Tags: change, making a difference, misfits, rebels, round peg, square hole
Back to the Beginning: Butterfly Courage & Thank You For Believing Me Well (posted Sept. 12, 2008)
BUTTERFLY COURAGE – Beautiful “Chicken Soup for the Soul” story
by David L. Kuzminski
Walking down a path through some woods in Georgia in 1977, I saw a water puddle ahead on the path. I angled my direction to go around it on the part of the path that wasn’t covered by water and mud.
As I reached the puddle, I was suddenly attacked! Yet, I did nothing, for the attack was so unpredictable and from a source so totally unexpected. I was startled as well as unhurt, despite having been struck four or five times already. I backed up a foot and my attacker stopped attacking me. Instead of attacking more, he hovered in the air on graceful butterfly wings in front of me.
Had I been hurt I wouldn’t have found it amusing, but I was unhurt, it was funny, and I was laughing. After all, I was being attacked by a butterfly!
Having stopped laughing, I took a step forward. My attacker rushed me again. He rammed me in the chest with his head and body, striking me over and over again with all his might, still to no avail.
For a second time, I retreated a step while my attacker relented in his attack. Yet again, I tried moving forward. My attacker charged me again. I was rammed in the chest over and over again. I wasn’t sure what to do, other than to retreat a third time. After all, it’s just not everyday that one is attacked by a butterfly. This time, though, I stepped back several paces to look the situation over. My attacker moved back as well to land on the ground. That’s when I discovered why my attacker was charging me only moments earlier.
He had a mate and she was dying. She was beside the puddle where he landed. Sitting close beside her, he opened and closed his wings as if to fan her. I could only admire the love and courage of that butterfly in his concern for his mate. He had taken it upon himself to attack me for his mate’s sake, even though she was clearly dying and I was so large. He did so just to give her those extra few precious moments of life, should I have been careless enough to step on her.
Now I knew why and what he was fighting for. There was really only one option left for me. I carefully made my way around the puddle to the other side of the path, though it was only inches wide and extremely muddy. His courage in attacking something thousands of times larger and heavier than himself just for his mate’s safety justified it. I couldn’t do anything other than reward him by walking on the more difficult side of the puddle. He had truly earned those moments to be with her, undisturbed.
I left them in peace for those last few moments, cleaning the mud from my boots when I later reached my car. Since then, I’ve always tried to remember the courage of that butterfly whenever I see huge obstacles facing me. I use courage as an inspiration and to remind myself that good things are worth fighting for.
THANK YOU FOR BELIEVING ME WELL – “Chicken Soup for the Soul at Work”
by Judy Tatelbaum
As a young social worker in a New York City psychiatric clinic, I was asked to see Roz, a 20-year-old woman who had been referred to us from another psychiatric facility. It was an unusual referral in that no information was received ahead of her first appointment. I was told to “play it by ear.” and to figure out what her problems were and what she needed.
Without a diagnosis to go on, I saw Roz as an unhappy, misunderstood young woman who hadn’t been listened to in her earlier therapy. Her family situation was unpleasant. I didn’t see her as disturbed, but rather as lonely and misunderstood. She responded so positively to being heard. I worked with her to start a life worth living – to find a job, a satisfying place to live and new relationships. We hit it off well, and she started making important changes in her life right away.
The records from the previous psychiatric facility arrived a month after Roz and I began our successful work together. To my complete surprise, her records were several inches thick, describing a number of psychiatric hospitalizations. Her diagnosis was “paranoid schizophrenic,” with a comment on her being “hopeless.”
That had not been my experience with Roz at all. I decided to forget those pieces of paper. I never treated her as if she had that “hopeless” diagnosis. (It was a lesson for me in questioning the value and certainty of diagnoses.) I did find out about the horrors for Roz of those hospitalizations, of being drugged, isolated and abused. I also learned a lot from her about surviving such traumatic circumstances.
First Roz found a job, then a place to live away from her difficult family. After several months of working together, she introduced me to her husband-to-be, a successful businessman who adored her.
When we completed our therapy, Roz gave me the gift of a silver bookmark and a note that said, “Thank you for believing me well.”
I have carried that note with me and I will for the rest of my life, to remind me of the stand I take for people, thanks to one brave woman’s triumph over a “hopeless” diagnosis.
©1996 Jack Canfield, Mark Victor Hansen, Maida Rogerson, Martin Rutte, Tim Claus
Tags: blessing others, changing lives, Chicken Soup for the Soul, healing, making a difference, thank you for believing me well, the power of listening, unconditional love, wholeness
Back to the Beginning: A Beautiful Evening with Habitat for Humanity (posted Sept. 13, 2008)
I had a blessed evening Friday with a friend, we attended a Habitat for Humanity Dinner Fundraiser, she used to be the Volunteer Coordinator so she knew a lot of people.
(Little did I know it was formal – I wore clean jeans, nice western shirt, nice belt buckle, and dirty boots. Oh well, sometimes without a lot of time to rest in anticipation, I either have the energy to go or get dressed up, not usually both. I didn’t even wear makeup. Sigh. A funny little thing about Brain Injury, because I process things slowly, I do not wish to draw attention to myself. I was afraid if I dressed up I would stand out. Instead I stood out for not dressing up!)
It’s nice having someone else drive, especially when you have a Brain Injury because of the mentioned energy/stamina budget. I prayed God would sustain me. I knew I could excuse myself to take a break if need be, it’s a lot of stimuli to absorb.
It was wonderful getting to be social, to be around positive energy of good people gathering for the greater good. My spirit soaked it all in like a bone dry sponge!
There were times I wanted to cry. It’s strange – wanting to cry because I need help, but more so because I dearly miss volunteering. I took for granted I used to be able to go where I wanted to when I wanted to. Now I pace and plan everything. Even this evening out, I had to rest before we left and then could not get out of bed the following morning.
I appreciated the pastor who spoke of people regaining their dignity when they have a place all their own and will not be taken away. It made me wonder, if Habitat is set up to sponsor people, why couldn’t another organization be set up with accountability built in for those who have homes but are struggling to keep them. It’d be a case by case basis where all of the person’s financial standings are brought to light to verify need. Just thinking…still…how to change not only my life, but lives of countless others.
I am glad I got to go, to be a part of something beautiful and experience that wonderful energy! It did make me feel perhaps I’m not asking for too much by needing help with my house and all. I still feel very embarrassed I am in need of help. I am frustrated I cannot work full-time, frustrated more by all my limitations and lack of resources available to me, one who has fallen between the cracks. Were I able to manage any other way, I would not be posting my needs to the worldwide web.
I just want to have more life than survival, and, get back to giving again and being a part of something greater than myself.
If you’re interested in learning more about volunteer opportunities with Habitat, they are international and their website is http://www.habitat.org/. You can make a world of difference and get that great feeling a fellow TBIer shared with me, “That’s the Master’s wages, the good feeling you get from helping someone else.” Go get some Master’s wages for yourself! 🙂
Thanks for listening dear readers.
Tags: beautiful, community, greater good, Habitat for Humanity, helping, housing, making a difference, Master’s Wages, volunteering
Back to the Beginning: Update on House (posted Sept. 16, 2008)
One of the resources that initially turned me down (and like so many apologized they couldn’t help more) contacted me about my roof. He said when they inspected the house they noticed the roof needed replacing. If funds were available and the bid would come in within their budgetary limits, they would replace my roof.
I signed papers today authorizing them to do the work as well as track my heating expenses because it should make a difference over the long-term. As far as I know, it’s a go, but as always in situations like this I am cautiously optimistic. I’ve learned the hard way about having too much hope when one is in dire need.
Also, the gentleman from support group who said his group may be able to help me gifted me with a small amount to cover some utilities. I am truly grateful for any and all help as awkward and embarrassing as it is. But, because he is in our Brain Injury support group, he knows very well this long arduous path we face, so help from a fellow trench-mate comes with deep validation and understanding. Fellow sojourners just know the struggle so there’s no retelling my story, explaining things over and over again.
I will not cash the check until I have a thank you note (or letter) written and in the mail. I don’t want anyone thinking for a split second that I have any sense of entitlement or any of that other yucky stuff that can come along when people help others. I want them to know I am truly grateful.
This is very helpful, especially since DSHS cut my food budget over $60. Ouch. So, I have to stretch things a little farther than initially planned.
That’s about it so far for today, I am taking a bunch of items I researched on eBay to see if they would sell and since they won’t I’m taking them to a local charity thrift store. I don’t feel like I have much to give these days, but it does feel good to give to them because they really do a lot to help folks in this community. It’s one of the few ministry-driven second hand stores I know of in the area.
Thanks so much everyone, for your prayers and support. I am encouraged and strengthened by your blessed help and friendship…more than words can convey.
Tags: angels of kindness, assistance, getting help, gratitude, housing, repair, roof
Back to the Beginning: Holding On and Letting Go (posted Sept. 17, 2008)
Before I donated the items to charity, I went through the house making sure I had everything. A process I’ve repeated many times, often with a good feeling knowing my donations are sold to help their ministry serving the community.
I thought of all the things I’ve had to let go of in this barren desert after becoming disabled. A job which was my purpose and ministry as well as a sustenance; a relationship with a man who said ‘his love for me would never die;’ my own identity, friendships, relationships with my family, my social life, the ability to go to church and Bible study, the ability to visit friends, travel, the ability to serve and volunteer, and probably the most painful of all, having to let go of my deepest desire of marrying and being a mother. I have cried over that the most. (Brain Injury has one of the highest divorce rates 85% – 90%). Simply put, I miss having a life! It’s hard to not look at others and see how they get to live, and feel jealous.
In the continual process of letting go, sometimes it’s an emotionless ritual. Have I become numb from losing so much I won’t or can’t allow myself to feel? It is difficult living day to day not knowing if I will get to stay here. That has been the deal since I lost my job in 2002, never knowing month to month if I’d get to keep the house.
So much out of control, rapidly spiraling downward and despite my best efforts and cries for help, it continues. I envision my life as a speck spiraling down the drain, out of control to stop or divert it, the path seems inevitable. I hate it because all I have lost and the little that is left. Does it have to be this way? Is this how the story ends?
I have cried so much the last six years and have wondered often, what’s the point of fighting so hard if you end up losing the things that matter most in the end?
I need wisdom to know when to hold on and when to let go. Letting go feels like the disability has control. I hate my personal choices were stripped away the very moment that other car struck.
What in the world do all us disabled people have to look forward to if we lose that which is most treasured and necessary for survival? Do we ‘look forward’ to a life of poverty, being shut-in, no longer making a difference or mattering to the world? I have yet to meet one disabled person who doesn’t want to still make a difference or be a part of the community.
I cannot yet get to the point of getting rid of some of my late Mom’s estate, it’s heartbreaking. I finally decided to sell her sewing machine. I’d spent most of last year selling what wasn’t nailed down on craigslist and eBay. I finally realized these are only temporary fixes to a much bigger ongoing housing problem.
God grant me the wisdom to know what to hold on to and when to let go.
Tags: dealing with loss, grieving, holding on, housing, letting go, wisdom
Back to the Beginning: Blessings (posted Sept. 21, 2008)
I’ve mentioned requesting help from the city through their county resources department, to which there was no help the could offer me. They apologized, like so many, and I sighed. They did call me back, however, saying they may be able to replace the roof. He said all those taxes I’ve been paying for years is what goes into that fund, if a roofing quote could meet their budgetary guidelines a new roof would be installed. With that, I let it go, knowing I’ve been down this road before, getting my hopes up.
Well, the gal from the roofing company called to schedule work to start tomorrow! There is a break in the weather we need to take advantage of. I was granted a choice of colors, I chose black to match the detached shed out front.
So I rest in the knowledge of a blessing is on its way tomorrow. If I get to stay here, I’ll have the benefit of a new roof, if not, the new owners will.
At any rate, I am deeply grateful knowing I couldn’t afford anything like this now that my resources are earmarked for survival through the winter. This is a relief, one of the things I wrestled with having a home was some of the “deferred maintenance” as it’s called in our industry. I want to take care of this home as God would have, and I am so relieved!
I haven’t cashed the check for utilities yet, I sent the thank you letter last week and wanted to give it time to get there and passed around to the organization before cashing it. I wanted to make sure they knew I was grateful, not greedy.
Thanks dear friends, for being here, and for your continued support and prayers.
Tags: getting help, gratitude, housing, roof work, TBI, thankful
Back to the Beginning: Roof Work, Brain Injury and Noise
(posted Sept. 22, 2008)
This will be brief because the roofers are working, although I am exhausted, this is a good example of Brain Injury and noise sensitivity.
The roofers arrived around 9:30 this morning and while I expected a lot of noise, I was ill prepared. I found myself shaking and becoming agitated from the noise overhead. I ate breakfast and returned to my bedroom (my safe haven).
To say I’m sensitive to noise is an understatement. It’s polar opposite of how I used to be. You see, I grew up with a brother who played drums yet I was able to ‘tune’ that out, pardon the pun, was able to concentrate, read and study.
An injured brain isn’t able to filter or tune out noises, it hears everything. Realizing I was getting into a panicky state, I put in my highest decibel protection earplugs. They helped calm my nerves. I often say post-injury it feels like my nervous system is on the outside now.
Excessive noise can affect my balance, make me feel dizzy, feel like I’m experiencing an earthquake. I did have one incident this morning where the pounding (before earplugs) had me “furniture surf” as we call it when we use furniture, walls, etc., to steady ourselves. I have seen other TBIers shake and sway when there’s too much noise and they have to go to a quiet place until they can function again.
I am grateful, I just wish I had the foreknowledge to ask if I needed to be here and would have gone to the library or someplace quiet.
This is typical for me, one reason I am a shut-in is I’m highly sensitive to movement, lights, sound. I’ve had people ask me if I have considered a roommate, and I have, but I know I would not be able to handle it. Even with these earplugs in, as I type this, pound, pound, pound, pound, pound, pound overhead is starting to affect me. I’m getting that flight response, glad it’s flight, not fight!
A good illustration (and funny too!) is the Far Side comic strip where the student has his hand in the air, and asks the teacher if he can be excused, his brain is full! Our brains do get full, and for us, we often need a lot quiet and rest to recover.
I’m off to definitely try to rest as much as I can.
Tags: earplugs, noise sensitivity, Realities of living with TBI, stimuli
Back to the Beginning: What is the Benefit of Judging Others?
(posted Sept. 23, 2008)
I’ve been thinking about judging…
I know a part of life is judging other people’s character to determine whether that person would make a good partner, husband, wife, employee, tenant, apprentice, babysitter, etc.
We discern whether a person is suitable for the need we have. But what about harsh judgment, the kind that tears the very soul of a person apart? We judge these unfortunates because they’re different than us (note we never say I’m different than they are), the blame is on the subject to whom our judgment is cast.
Have we become so television indoctrinated we no longer think for ourselves? Has the negative media, the smear tactics of slanted journalism and God-forbid, our ‘democratic’ process so shadowed our minds we’re no longer able to consider people as individuals? Even our elections to select a trusted and suitable public servant are filled with slander and hatred.
In our highly televised world, sitcoms full of degrading humor have overtaken the media, where slapstick, silly humor once was. It was a humor that drew people together, a humor that would help us laugh at ourselves or a silly situation, not ostracize. This ‘new’ degrading, spiteful humor puts the other person down, makes fun of them, and it is considered ‘humor’.
We see well-scripted crime shows where, within the allotted time, perpetrators are brought to justice and the streets are safe once more. Television shows where actors recite lines they did not write, expressing feelings they did not feel, that is called entertainment, but we soak it up like it’s education.
Have we become so closed minded we cannot accept that which does not fit inside our nice little boxes of how televised life should be? I can’t help but wonder during this awkward process of going from abled to disabled why the loss of relationships is so staggering. Not just for me, but others on this Brain Injury path, and for most every other disabled person I have ever met. This is real life.
Can we not accept a person for who they are? Why not? Is it because we fear our own humanness and what we will find if we look inside ourselves? What is so frightening about people with disabilities? Is it we are transparent and real? Are we all so stereotyped we should all be shut out of society not to be seen or heard from? Would everyone be more comfortable? I’ve never done this before, walking through life able and then suddenly disabled. Where is the manual?!
What about compassion? What about looking behind the eyes? What about our dreams? Just because we’re disabled doesn’t mean we’ve lost sight of having dreams. And just because we’re disabled doesn’t mean our dreams are of lesser value than yours. We still matter. We still have dreams. And maybe, just maybe, if you listen to us, you will find we are more alike than different.
Judgment without compassion or love behind it is detrimental. I can only imagine the oppression and judgment movers and shakers in our history have faced. They had dreams too, some closed-minded individuals thought they were crazy, with hatred and judgment in their hearts committed the crime of murder. The harshly judged persons were gone, but the spirits, the dreams, the hopes, live to this day. And those who committed the crimes? Well, they have/had a much bigger judgment to face!
Our dreams matter. Our lives matter. Every life deserves dignity. Every life is infinitely precious to God. But for the grace of God go I. By judging, we create distance, discord, disharmony when we could be learning valuable lessons from each other if only we tried.
We could grow, into the greater spiritual beings God meant for us to be.
In the entire history of man, have we not exhausted the categories by which we judge, and thereby shut out all the ‘different’ people? Haven’t we learned that doesn’t work? Judging or hating those who are different diminishes us all.
I have yet to meet any person who has lived their life without another person judging, shunning, or otherwise not accepting them for who they are. We all bear the scars. It doesn’t work. We can do better.
Tags: criticism, different, disabilities, disabled, Diversity, housebound, Inclusion, judgment, mTBI, shut-ins, TBI, traumatic brain injury
Back to the Beginning: Roof Work Continued (posted Sept. 23, 2008)
The roofers arrived around 9:00 this morning for another full day of work. I left to go to the farmer’s market and run some errands briefly. I juice fresh veggies and fruit for myself and my dog (who has Cancer), so the fresher the better and nothing beats the local farmer’s market.
Goofy me, not realizing still how much of a toll yesterday’s noise had taken, made a couple faux pas. First, I thought the farmer’s market opened at 9:00 so I cut my morning routine and left the house as the roofers arrived. You do have to get there early before they sell out, but not that early before they open! [Sigh.] One would think I hadn’t gone to this farmer’s market before, I had, every week last summer and this summer, the last time I went was two weeks ago. Oh brother!
I decided to run my other errands, but none were open either, so I went to bide my time by going to McDonald’s drive through and then eat at the parking lot of the next destination. Okay, I know one day I’ll find a lot more humor in this, I ordered a Croissanwich. That would have been fine if I had been at Burger King. Oh my gosh, I was so embarrassed.
I’m writing this at 6:00 pm and honestly, I have to go lie down to rest. It’s dinner time, but as can be the case, I can either eat or sleep. And right now, my brain bank is out of brain bucks and I need rest.
Blessings dear readers – thank you kindly for your prayers and support. I am feeling a strange sense of peace despite how things look to these human eyes. I feel your prayers, support, and warm thoughts.
The roof is really coming along, they pretty much finished the back half of the house, and it’s beautiful. I doubted my color choice yesterday, but I am liking it much more now that it’s up there. What a blessing and a relief this house is being taken care of.
Oh well, my ongoing brain injury jokes are, “I learn something new everyday, but only God knows how much I forget each day!” When I make mistakes I can sometimes joke, “It’s not that big of a deal, it’s not like I’m going to remember it.” There are a couple of benefits of memory loss, I guess, humor helps.
Tags brain fatigue, Brain Injury, forgetting, humor, living with traumatic brain injury
Back to the Beginning: Bankruptcy (posted Sept. 27, 2008)
Thursday I had an appointment for what I was told was the “Distressed Homeowner’s Class” at our local HUD office, which I quickly learned was about bankruptcy. Gulp. Panic. I was in the right class, but I was looking for resources for disabled folks looking to keep their homes. I figured if I could handle the class I could then meet with the facilitator one-on-one.
Financially-speaking, I have some savings, still fighting with Unemployment to unleash my benefits, owe less than $500 on credit, my only debt is mortgage. I’ve never been late on a payment; I have excellent credit, etc.
The class, like most classes I attend post-injury, was over my head. She gave us a lot of handouts and went through things very quickly, so quickly my head was spinning. I did, however, manage to stay so I could talk to her afterwards. She would meet with us individually for about 20 minutes to open a file and ask us questions.
I told her I was hoping to keep my house if possible, avoid foreclosure and keep the excellent credit rating I’ve worked all my life to maintain. She asked what she could do to help me and I asked if there were any resources for disabled folks who are in between a rock and a hard place. I explained I can no longer work full-time, I can’t just go get another job, I’ve gone through DVR twice, I’m on DSHS and they just reduced my food allowance, and I have hired an attorney to obtain my Disability benefits.
I told her how much I paid for the house; she asked how much I could sell it for. I told her and she said how much I would walk away with. That wouldn’t be enough to buy anything. She was stumped. She talked about Section 8 and I said as understood it, I would lose my house and pets and live in subsidized housing. I mentioned I lost everything else; I wanted to hold on to the two pieces that mean the most. She said there are resources for people with disabilities looking to buy, but none she knew of for current homeowners.
She asked the size of the house and said people in my shoes she usually recommends getting a roommate. I nodded saying I’d thought about that too, but having someone live with me would be too much. I illustrated by telling her how it was having the roofers at the house, how I started shaking, had to put in earplugs, and when that wasn’t enough, had to put the big commercial ear protection muffs on over that.
I said I can’t be the only person in the state, let alone the entire country who has experienced this. I shared that others who have walked in my shoes with my disability end up losing everything and I said that’s why I’ve fought so hard, budgeted down to the dime, etc., in an effort to keep that from happening. I said there just has to be resources for people with disabilities trying to maintain their independence. She was stumped.
I mentioned I know Congress has been passing legislation for home owners, but that I didn’t know what that was yet. She said she didn’t either.
She saw the brochure I picked up in the lobby for people with disabilities who want to buy a home and she suggested I tell them everything I told her and see what they say, and then forward that message on to her. Other than that, she really couldn’t help me unless I decide to file for bankruptcy. Wow. I sure can’t be the only disabled person in the history of the United States facing this!
This is frustrating, I am looking for resources, I am trying to do everything I know to do and am coming up empty handed time after time.
I did call Unemployment again, this time they said they never received the medical authorization from my doctor! Last time I called they said they received it and it would take six weeks for them to make a decision. Grrrrr! I called my doctor’s office, they do have it, but because I’m not an active patient (my insurance ran out years ago), my file is off-site, they don’t go there often. Often?! The form was sent the middle of last month and was noted to be returned to Unemployment by August 28. I’ve been waiting all this time…the saga never ends.
This was a very sobering and somber meeting at the HUD office, another opportunity to look reality in the face, should things come to that. There are times on this path one has to look at the lesser side of how we would like things to turn out. This was one, and it has taken me a long time to let this settle in my spirit and be okay with blogging about it. It is depressing, heartbreaking, and has made me considerably sad. The funny thing about the rest of society experiencing this now is that every disabled person I know has faced this very path. It’s not a matter of society’s economy, but the individual’s economy has changed and they have faced this. It is not pretty, it is not pleasant. I do not favor it for myself. I have yet to meet a person who can say they’re all the better for going bankrupt or for losing their home, possessions, pets, etc. These hard times may be new for the country, but they are nothing new to anyone with a disability. Why must we be relegated to lose everything and then live in poverty, or below poverty?
As I drove to a friend’s house to pick up some surplus apples, I stopped at an intersection waiting for the light to change. I felt that little nudge, a reminder from God, “Streams in the desert.” It is a promise from the Bible God will give us streams in the desert, fitting in light of the dark skies and rain.
Tags: asking for help, Bankruptcy, credit, depression, despair, disability, distressed homeowner, foreclosure, help, HUD, looking for solutions, losing home, TBI
Back to the Beginning: Tying Up Loose Strings (posted Oct. 2, 2008)
I haven’t written in my blog for a couple days because I am overwhelmed. Here are some updates…
Roof: Done, signed off, and it’s beautiful! It was a miracle as their funds have dried up and will no longer be able to help people needing roof help. I am blessed, it wasn’t a need I even realized and am ever so grateful. The house matches the detached shed now, it looks much nicer, and I am relieved. What a blessing, indeed!
Unemployment: I am hoping today’s call will be the last. This has been going on since August. If things go through, I will be set for winter, I will let DSHS know as soon I hear so they can discontinue food benefits.
Housing resources: I am still on my own with this, and it is exhausting me. I met with the Social Worker at rehab yesterday and honestly – we’re all doing the same thing, looking high and low for resources to help myself and others with disabilities keep homes. Hard to believe the path hasn’t already been cut by someone ahead of me on this journey.
Weather: The weather here is changing so I rented a pressure washer Sunday for my deck. It was too much for me, just the pressure washing wore me out and I am still recovering. I stained it, but not as well I would have liked.
The cost of overdoing: Exhausted beyond belief, making mistakes like locking myself out of the house. When I’m stressed, my brain and body go back to how they were right after the car accidents, can’t think straight, I can’t even walk straight, a LOT of body pain, all too much, too much, too much. Just the very vibration of the pressure washer undid me, despite the high decibel earplugs and heavy duty ear protection muffs over them. If ever I can afford it, I will have to have someone else do. I am still recovering! Yes, that exhausted. Amazing, isn’t it? Pressure washing is such a simple thing!
My plans: I have to get rest in order to be able to get anything productive done. Then, I will be back to the computer searching online for resources.
I am glad for the change in weather, that means no more yard work, and more time for rest in between work and getting things sold on craigslist and eBay.
Tags: Brain Injury, craigslist, eBay, fatigue, living with TBI, mTBI, overwhelm, rest, TBI, weather, work, yard work
Back to the Beginning: Short Note about Brain Overload
(posted Sept. 30, 2008)
With a Brain Injury comes lessened stamina, fatigue, and well, it’s just easy to overdo it.
In Brain Injury support group, we talk about having a ‘brain budget’. Prior to our injuries, none of us had to ever budget our energies, we did what we wanted when we wanted, went where we wanted when we wanted, fatigue was not an issue.
When you’re in flight of fight mode constantly, you can guarantee some symptoms may be pronounced, migraines occur, sleeplessness is common, as is fighting the depression. This has been my experience.
Tags: brain, depression, fatigue, head injury, mTBI, overload, rest, self-care, symptoms, TBI
Back to the Beginning: On Blogging in General (posted Oct. 5, 2008)
One of the things bothering me lately as I Stumble Upon many blogs is I sense everyone is fighting for the spotlight, writing to be the latest guru, the most popular blog on the block.
That stirring, that feeling is worth following. What is my motive, my purpose? To get a lot of hits? To get a lot of followers? Money from ads? No. This blog is my last resort, I’ve done everything I know to do, talked to everyone, prayed and cried my heart out, etc., and still come up with no long-term solution…other than face the dismal possibility of losing everything.
Does becoming disabled mean I deserve to lose my home and pets. Who decides that? Who on earth has the power to decide the worth of another human being and what he or she deserves?
I think it’s like the stirring I felt tonight watching TV. I wasn’t particularly satisfied, I let that stirring be instead of dismissing it. When I follow a stirring or feeling, it leads me to the truth.
I don’t usually watch much TV, but tonight, just felt like zoning out. With an active conscience, zoning out is the last thing to occur! Instead I wrestled with values I do not uphold, relationships and selfishness I simply cannot relate to. I want it to be an escape but feel it is a reminder. I see commercials for vacations I may never get to take, sitcom situations my disability disallows me to tolerate, and my spirit is disquieted within me as though I’ve been subtly assaulted. Perhaps I am fortunate to live alone with my animals, I can hear my voice and when God speaks, I know enough at times, to pay attention when something isn’t quite right…and stay with it long enough to learn from it.
I don’t want to be someone else’s guru. I don’t need to win any popularity contests. If I can, I would like to be an encouragement, but in the midst of just surviving, life is very raw. How much can I offer this world when my own world is so unsettled?
Would my animals be better off with someone else? I’ve had them all since they were babies, we know each other, we speak each other’s language. They’re not just pets, they help me feel more human and a lot less alone in this quiet world I must now live in. They have loved me through my unlovable times which is more than I can say for most people after my disability. Loving them and taking care of them give my life meaning and purpose. They don’t give me advice or tell me I am wrong, we just listen to each other and adjust. They are my angels and I believe I would be lost without them.
No, I’m not here to be anyone else’s guru (God wouldn’t let me anyway, that’s His job!), I’m sure not here to win a popularity contest, I am just here to help myself through this, feel less alone, and maybe somehow, by God’s good grace, turn this Titanic around…
Tags: animals, blogging, disabilities, disabled, meaning, pets, purpose, television, unconditional love, values
Back to the Beginning: Hi (posted Oct. 14, 2008)
Forgive me for being offline, I think I have a sinus infection and thought I was getting better, but was in bed the entire day again today. I’m doing what I know to do, but this is a strong bug.
Thanks for being here.
Tags: sick, offline, blog, rest, infection
Back to the Beginning: Petrified! (posted Oct. 7, 2008)
I have only recently become aware of my fear – and its magnitude – at this potential loss of house and pets. Sure, it’s something I’ve faced since losing my job in 2002, but now, it is up close and personal. (Thinking of “objects may be closer than they appear” on rear view mirrors.)
In a lot of ways, working hard to keep from losing my house is a good distraction from having to face that very reality, maybe if I work hard enough I can change things, make something happen. In all honestly, I don’t have a hard and fast plan. Thus far no one who walks this path does…just as those who have helped others walk this path do not either. That, is unsettling, to say the least. Most of us have a certain amount of comfort or sanity that comes with having control over our lives. I’ve kept my nose to the grindstone hoping I would get better or something would change. It is a life lesson for me to live with what is, not what I would like life to be. The comfort or gift of having control over my own life stopped the split second that other car rear ended me on the freeway and changed my life forever.
I think this is why I’m hoarding food! I am adrift trying to find security, stability somewhere. Hoarding is not part of my spiritual practice so I can see why I’m off balance, feeling out of sorts. These needs are basic according to Maslow’s scale. I guess for me hoarding food is the next best thing to the comfort of having stability and certainty with my home.
It’s a fear thing whether I’ll have enough to eat for myself, and my pets. They don’t deserve this. My dog has Cancer, I give her a raw foods diet in the morning to keep her healthy and strong. I saw a bump on her nose and feared Cancer…and the dreadful knowing I can’t help her as I would like to if it is. I can’t afford the vet and that breaks my heart. I struggle to do the right thing. She has loved me with her life, I have to give her my best in return. Everyone has advice, but advice is not helpful or reasonable unless it is realistic, suitable or attainable.
I think a lot of people put advice where their help, love, or faith in action should be.
And holy heck, their advice is based on their experience, expectations and lives, they can’t measure my life and fathom life with a Brain Injury. To them, it is merely advice or opinions. To me, this is my life we’re talking about! They can make mistakes with words, but mistakes with my life cost me dearly. I cannot afford to have anyone be reckless with my life.
I really believe if people knew how difficult this path really is, they couldn’t go without helping in a powerful way.
This is not about me, it’s not a personal issue, poor planning, or anything we can place judgment on. This is real life. Things happen. People become disabled and can no longer work. Then they fight the very same system they paid into that was created to “help” them. The resources just aren’t there, the system is not built to support people, the system exists for itself.
I have wondered why people give up. I’m a natural born fighter, so have some fight left, but wonder about those who have to give up (notice I say have to, not choose to). I believe the system beats them down so much because they don’t fit in the system they believe they don’t fit anywhere. That’s a lot of heartache and pain to take and I can see why a person would be beat down. You’re in honest-to-God hard times, you go to get help, you’re a square peg trying to fit in a round hole, God knows what these people have said to you, and you walk away a little smaller each time.
The author of “Head Cases” said anyone thinking positively of living with Traumatic Brain Injury is simply not realistic.
This is no picnic or vacation. It is why my blog is titled The Fight of My Life. And honestly, I wonder, if I am to live this life with continual, staggering struggle, wouldn’t it have been better had I died?
We have some harmful preconceived notions about life with disability. I had no flipping clue the difficulties people faced with disabilities, I knew discrimination, etc., but the reality of the day-to-day struggle to survive and constant fight to get help is daunting, discouraging, disheartening, and exhausting.
Having to dive into my savings as last resort opened up two emotional paths, one of great fear, and one of a “go ahead, make my day” kind of attitude as I step closer to this reality. I think the fact I don’t have a solid plan terrifies me most.
I realized this week while buying more groceries I’m not alone in having to use food stamps and in this financial struggle, you see it on the faces of people in the stores. The elderly woman I saw had that look of someone who stretched her dollars farther than anyone thought imaginable. The despair, the concern is obvious. If you think these economic times are hard for the average American, ponder in your heart and prayers those on limited incomes.
We had hard times growing up, my Dad had been laid off, Mom, who decorated cakes and made crafts helped us stay afloat during those tough times. I do not disdain economic hard times now, I think as Americans we have become too self-absorbed and self-centered. We have been blessed to be a blessing, not benefit ourselves with bigger televisions, cars, and homes. Those things are ill-suited for fulfilling our heart’s deepest longings anyway, sometimes the tough times serve to remind us what matters most. The Greatest Generation served in WWII, made due with food rations and unthinkable tough times. I doubt they complained like people today, those very same people who struggled so much served and gave of their lives until they received their final reward.
I realized I’ve been living with a sinus infection for the last several weeks maybe months, thinking it was allergies. We TBIers pay a high price for stress, it causes the rest of the body to shut down.
Grey’s Anatomy recent episode was timely. Meredith is getting counseling and she said it’s a horrible world, how can people be happy in a horrible world? The counselor said it is not possible to be happy in the horrible, but need to feel the horrible, to be okay with feeling the feelings. This resonated with me with all the advice I’ve been given to ‘be happy’, when in all reality, this sucks. Telling a person to be happy when they’re experiencing ongoing trauma sends the message you can’t accept them where they’re at, and, you are communicating the person’s way of handing their personal trauma is wrong. These are heavy, destructive messages from a person who hasn’t experienced what they have.
Update on Unemployment: After two months of phone calls, paperwork and waiting, the good news is I will receive Unemployment, the bad news is, because I’m unable to work full-time as a result of my disability, they are cutting my compensation to that of a part-time worker. I will continue to have to live off of savings, despite my hopes otherwise.
My food benefits have ended, the dire, exhausting struggle continues…
Tags: fear, fight of flight, groundlessness, judgment, mTBI, no help, post traumatic stress disorder, PTSD, resources, stress, surviving, TBI, trauma | 2 Comments | Edit
Back to the Beginning: Disability Catch-22 (posted Oct. 6, 2008)
Okay, so, following the advice of the Social Worker I met with last week, I called my lender. The SW said she had another client in my position, he called his lender and they worked things out, that’s all it took. I called, was then transferred to the Collections Department to speak with someone about a Disability program or services if they have any.
Since I’m still current on my payments and have not yet gone into foreclosure they can’t help me! People! This is what I am trying to keep myself from. I want to keep my house and excellent credit but run into this same issue over and over again as though I am living in Bill Murray’s “Groundhog Day.”
The Collections lady tells me to call HUD, and gave me the 800 number. I was relieved, since the local HUD agency certainly didn’t help me at all other than give me a depressing look at bankruptcy I didn’t expect.
I called the 800 number and the automated service referred me back to the same agency (HUD) where I attended the Bankruptcy class and who had absolutely no resources, or any idea of resources.
Holy cow, where to all the Disabled people in my shoes go? I am not the first person to experience this!
Calgon, take me away!!!
Tags: disability resources, housing, HUD, is there any help?
Back to the Beginning: Embarrassing Moments (posted Oct. 16, 2008)
I never get used to making mistakes.
I had my phone off the last couple of days while I got through this bug and had a message from a co-worker of some errors I’d made. This particular co-worker was not being unkind, it still does not feel good. It took me a couple times of listening to the message to understand. It surprises me I make mistakes after five-plus years at this job, and I still don’t see them myself. The old me would never do such a thing.
I don’t miss working in the office being embarrassed in front of our small office, my errors big as elephants spotlighted for all to see. There was a time I had comebacks, and then, as time wore on, none. It was as if my heart caved in and my shoulders slumped to protect an empty torso. There are a lot of heart piercing facets to being disabled, having others point out my shortcomings in an unkind manner is a least favorite.
Sometimes I wonder what they say about me now at the office, am I the office joke?
There is a lot of self-talk we folks with TBI do. In the beginning it is often not very kind, patient, or understanding. It is a process to accept ourselves in light of all the mistakes we now make and how we are different. Nobody I know enjoys having a TBI, but we have to get to the point where we grow strong in the broken places because a house divided will not stand, and really, a lot of times, the only person we have left is ourselves. It is a process, one that usually is a mix of tears, disappointment, grief and frustration when I’ve hit the walls of my limitations and cannot ‘make’ myself be someone I’m not or do something I can’t.
I have had people question me why I can’t do this or that, and I’m sure it is out of a frustration that does not pale my own. If I could do better, I would. I wish I simply had the choice.
I never get used to making mistakes or having people point them out.
“Every man has his secret sorrows which the world knows not;
and often times we call a man cold when he is only sad.”
– H. W. Longfellow
Labels: acceptance, embarrassment, mistakes, self-talk
Tags: acceptance, embarrassment, mistakes, mTBI, ridicule, TBI, tears, work
Back to the Beginning: Storms of Life and Seasons Change
(posted Oct. 19, 2008)
It has been a beautiful fall weekend, sun shining, I think it’s been warm too. The view of days is often from my bed looking out the window into the trees. Two sheets of clear plastic distort the view some, in hope of adding insulation to the single pane. I can still see movement of birds and squirrels, though it takes a little figuring sometime.
It was a little breezy this weekend. The wind blew the loose hanging maple leaves tempting them to let go, fall free. From time to time, leaves gave in and gently danced on the wind until resting upon the green grass. Nature’s own symphony ushering a season of change.
Dad called today, he is doing well with his recovery post-open heart surgery. He has a long list of medications to take and is still getting out to walk almost every day, although he does get winded easily. His life storm took him to the edge of death and back. We are all grateful he is still with us. From my own limited view from rehab after my car accidents, I know his recovery is not easy.
I was saddened and shocked to learn my brother lost his house. At an earlier time when I was fearful of losing my home he and my Dad said they’d ban together and buy my house if they needed to so I wouldn’t lose it. Hard times do not discriminate, do they? Now Dad has a huge mountain of medical bills and my brother, faced with his own life storm, went into foreclosure, and is living in a friend’s basement.
Considering my own life storm more seriously, what will happen with my own house and belongings? I am considering selling or taking the old truck off my insurance and not drive it at all. I haven’t decided, it’s a great tool for big jobs.
What will I do with my late Mom’s belongings like the Hope Chest she had intentions of giving to me later, but her death interrupted? I think of her cake decorating kit, the Victrola I loved so dearly as a child. I had hoped, if things got bad, I could ask my brother to store them for me. My Dad and Step Mom sure don’t have room in their tiny house, especially now with Dad’s mobility changed.
Perhaps, it’s time for me, like those little leaves, to let go.
It is frightening. I feel I’m free falling and I don’t know where I’ll land. I hate that I am much more vulnerable being disabled, and the uncertainty is an energy drain beyond belief. I wish I had a plan, I wish I had a safe place to land.
I don’t feel I’m letting go because I want to or because it’s right, or because I believe disabled people should lose their homes and everything they own. I think I’m letting go because like the leaves, I’ve been hit hard by the storms of life, held on as long as I possibly could, and no longer have strength to hold on to some ideal of how life could be if I could only find the help.
Everything was done right, I bought a house I could afford, didn’t go overboard in credit card debt or owe on vehicles. I lived within my means and I still lose it all as though I was an irresponsible steward. It doesn’t make sense. All because of a disability I did not cause.
I don’t know how to do this. I don’t know how to be disabled, I don’t know how to lose everything, and I sure as heck have not figured out the magic combination it seems to take to get the help I need if it exists.
Tags: fall, grief, letting go, mTBI, seasons change, storms, TBI, winds
Back to the Beginning: Jill Bolte Taylor “My Stroke of Insight”
(posted Oct. 22, 2008)
For me, these past couple of days have been a blur. I am struggling to form words, and say things properly rather than mash them together. I tried to say I need a better couch, and it came out as I needed a better pouch. My word recall has been slow, and my concept of days is lagging again too. I thought today was Thursday.
I would have to say yesterday was a bad day – I won’t go into the details only to say enough happened that I scared myself. I forgot something very important and could have done tremendous harm or loss. Frightening in light I had no recollection. Behold the power of stress and a person with a Head Injury. It’s doing that kind of stuff that would get me fired from a job. I am fortunate for a positive outcome, and am also banking on a phrase I think it goes like this, “God takes care of fools and little children.” And know that was me, and I am grateful and relieved.
At any rate, in this midst of this cognitive confusion, I did happen upon Oprah the other day when she had Dr. Jill Bolte Taylor speaking about her stroke experience, you see, she has special insight, she’s a Brain Scientist. She has had a lifelong fascination with how the brain works, and when she suffered a stroke, she marveled in being able to experience it from the inside out.
There were many insightful things she mentioned about stroke patients (please keep in mind, a lot of these are same from brain injury as well).
I do hope it is okay to post these here, they were so helpful to me, I thought for other folks dealing with brain injury from stroke, accident, falls, etc., this may be of considerable help. Again, every injury is different, but these cover some excellent points.
One thing I recall her saying, I remember this with clarity surprising to me, “I’m in here, come find me.” I have a strong belief the true spirit of the person remains despite trauma.
*Recommendations for Recovery: Forty Things I Needed Most
(By Jill Bolte Taylor, PhD)
1. I am not stupid, I am wounded. Please respect me.
2. Come close, speak slowly, and enunciate clearly.
3. Repeat yourself-assume I know nothing and start from the beginning, over and over.
4. Be as patient with me the 20th time you teach me something, as you were the first.
5. Approach me with an open heart and slow your energy down. Take your time.
6. Be aware of what your body language and facial expressions are communicating to me.
7. Make eye contact with me. I am in here-come find me. Encourage me.
8. Please don’t raise your voice-I’m not deaf, I’m wounded.
9. Touch me appropriately and connect with me.
10. Honor the healing power of sleep.
11. Protect my energy. No talk radio, TV, or nervous visitors! Keep visitation brief (five minutes).
12. Stimulate my brain when I have any energy to learn something new, but know that a small amount may wear me out quickly.
13. Use age-appropriate (toddler) educational toys and books to teach me.
14. Introduce me to the world kinesthetically. Let me feel everything. (I am an infant again.)
15. Teach me with monkey-see, monkey-do behavior.
16. Trust that I am trying-just not with your skill level or on your schedule.
17. Ask me multiple-choice questions. Avoid Yes/No questions.
18. Ask me questions with specific answers. Allow me time to hunt for an answer.
19. Do not assess my cognitive ability by how fast I can think.
20. Handle me gently, as you would handle a newborn.
21. Speak to me directly, not about me to others.
22. Cheer me on. Expect me to recover completely, even if it takes twenty years!
23. Trust that my brain can always continue to learn.
24. Break all actions down into smaller steps of action.
25. Look for what obstacles prevent me from succeeding on a task.
26. Clarify for me what the next level or step is so I know what I am working toward.
27. Remember that I have to be proficient at one level of function before I can move on to the next level.
28. Celebrate all of my little successes. They inspire me.
29. Please don’t finish my sentences for me or fill in words I can’t find. I need to work my brain.
30. If I can’t find an old file, make it a point to create a new one.
31. I may want you to think I understand more than I really do.
32. Focus on what I can do rather than bemoan what I cannot do.
33. Introduce me to my old life. Don’t assume that because I cannot play like I used to play that I won’t continue to enjoy music or an instrument, etc.
34. Remember that in the absence of some functions, I have gained other abilities.
35. Keep me familiar with my family, friends, and loving support. Build a collage wall of cards and photos that I can see. Label them so I can review them.
36. Call in the troops! Create a healing team for me. Send word out to everyone so they can send me love. Keep them abreast of my condition and ask them to do specific things to support me-like visualize me being able to swallow with ease or rocking my body up into a sitting position.
37. Love me for who I am today. Don’t hold me to being the person I was before. I have a different brain now.
38. Be protective of me but do not stand in the way of my progress.
39. Show me old video footage of me doing things to remind me about how I spoke, walked, and gestured.
40. Remember that my medications probably make me feel tired, as well as mask my ability to know what it feels like to be me.
Dr. Jill Bolte Taylor’s Internet Site is also quite informative & it’s listed on “Oprah’s Soul Series Webcast,” as well, under ‘Related Resources’ (Guests From Season #1- Dr. Jill Bolte Taylor).
These were borrowed from Oprah’s website, for more information, please go to oprah.com and search for Jill Bolte Taylor.
Please also enjoy learning more at http://drjilltaylor.com/
Tags: acceptance, Dr. Jill Bolte Taylor, mTBI, My Stroke of Insight, Oprah, stroke, TBI, understanding
Back to the Beginning: Behold the Power of Stress (posted Oct. 23, 2008)
Support group was last night and I can’t tell you what a comfort it is to be around people who understand from a deep place of knowing. There were quite a few newcomers which is sad on the one hand, but I’m glad to be there to be able to give back as others did for me when I was just starting out on this journey.
I spoke with the Social Worker beforehand to see if she’d received my email. I’d learned about a local construction company looking for a family needing a roof, the Social Worker mentioned before she has a client with a tarp over her roof. She had hired a roofing company, they turned out to be fraudulent. Oh my gosh, wouldn’t that be something if she applied and was selected? That would be neat to pay-it-forward since the City had graciously replaced my roof.
Chatting briefly with the Occupational Therapist about my faux pas the other day, I mentioned how that frightened me, when I overdo or get too stressed I go right back to the days immediately following the accidents. She reminded me again this is because I still have a Brain Injury and warned me of the long-term ramifications of pushing the limits.
Not wise on my part at all. I think it’s the fear, anxiety, uncertainty…fight or flight. We pondered together why is it people have to lose everything and also acknowledged the intensity of the financial stress.
Candidly I shared I’ve asked five people to start a fundraiser to help me pay off my mortgage, each one declined! She asked their reasons, I told her, and she was blown away. I am left feeling like I’m not good enough or whatever, and in the process explain over and over again my situation, fully exposing my heart only to be shut down. Reopening that wound is profoundly painful. I don’t know how this will all pan out, there are so many times I feel like I can’t even breathe. I don’t wish to be rich or famous, I just want to have a good life and not be a burden long-term to anyone.
I know that even if I do get approved for disability benefits I wouldn’t be able to afford my mortgage, that’s why there’s this crazy idea to have it paid off. I don’t know how to market myself, get the media attention or whatever it takes. As much as we berate the media, it a tool that looks surprisingly attractive in seemingly hopeless situations such as this.
I did ask at the end of the meeting if the OT would email me with the contact at rehab who used to work for the local paper. The OT had spoken to us quite a while before about having our TBI stories published, and asked for volunteers. I hate the idea of reopening my wound, and this time to perfect strangers, even my neighbors would know, grrrrrr! It’s all so daunting for this woman who was once so fiercely independent and a very private person. I think it is enormously painful for most anyone to ask for help, but I know I can’t do this alone. Ha! We’ve seen the extent that my trying to fend for myself does. Potentially having my story published is solely dependent upon whether its newsworthy or not.
I am also still doing online research to see if there are organizations, ministries, grants, etc., for people in my shoes. There have to be a lot of us who owned our homes prior to becoming disabled. We shall see, all I can do is try.
The OT shared this when I first mentioned possibly doing a fundraiser to help save my home and belongings, she agreed I have already lost a lot. It is a quiet, gentle reminder, no matter what happens, I may not be so crazy asking for help after all!
“Some people see things as they are and say why.
I dream things that never were and say why not?”
George Bernard Shaw
Tags: Brain Injury Support Group, disability, housing, mTBI, Occupational Therapist, Pay-it-forward, support, supporting newcomers
Back to the Beginning: Hilarious! (posted Oct. 26, 2008)
I received some documentation in the mail from DSHS, since it was a reasonably sizable envelope, I was afraid there was something wrong and would have to pay them back for an overage on food benefits. I didn’t know if that could or would happen, but why else was I receiving correspondence? I had called and canceled, telling them I made too much this month and asked if I should return the card (food stamps are no longer used, they’re more like debit cards complete with pin code.)
At any rate, I was surprised I’m still on food benefits, but they’ve dropped for the entire month to $14.00! Hilarious, they spent $.42 cents to tell me that!
Tags: DSHS, food benefits, funny, hilarious, humor
Back to the Beginning: A Dream House Built from a Nightmare
(posted Oct. 26, 2008)
I happened to have come across this article this morning, it warmed my heart and encouraged my spirit so much I wanted to share it here. Please click on the link below for the full story.
It is also deeply validating to hear a person without TBI speak of our needs from a place of knowing and accepting, instead of judging and condemning. I am grateful to hear these words at a time I’m struggling to keep my own home. Yes, we do still have dreams and aspirations…
A Dream House Built From a Nightmare
Peggy Harris Turned a Personal Tragedy into a Home for Brain-Injured Adults
October 23, 2008
By NANCY MYERS
Special to the Palisadian-Post
‘Build it and they will come,’ says former Palisadian Peggy Mallett Harris, 59, who last month completed her dream house: a home for brain-injured adults in Ventura.
Tags: dreams, home, hope, independent living, Realities of living with TBI
Back to the Beginning: To the World Outside of Brain Injury
(posted Oct. 26, 2008)
[I wrote this in some time ago…all rights reserved, copyrighted, yadda, yadda, yadda…more so this is my heart…please be kind. If this should happen to resonate in your heart, or others you know, please share, thumb up on Stumble Upon or vote up on your favorite bookmarking site that this may come to bless and encourage others.]
To the world outside of brain injury:
Please learn we have changed from who we were to who we now are by an accident, an injury, illness, a stroke, a coma. We have NOT chosen this path or behavior we ourselves find foreign. The intense struggle, bewilderment, and pain we feel on a daily basis are all internal, at a magnitude that causes even the strongest hearts to want to perish.
Most of us don’t clearly understand this new path we’re on either. We are still as intellectual, insightful, intelligent, smart, it’s just the hard drive has been damaged and retrieving, storing, organizing information is much more difficult.
Please be kind.
We are doing the best we can, often fraught with social foibles, errors in judgment, decision making, and processing speed. Our hearts remain the same as yours, in great need of human compassion, companionship, acceptance, and truly unconditional love. Know our hearts behind our actions.
We are hurting and in deep need. Please care for us and our needs as you would yourself or your most deeply beloved and cherished friend or family member. Most of us feel painfully lost and alone, please warmly, softly, safely embrace us in the wings of your heart.
Your heart. Your time. Your gifts and talents. The recovering and relearning process can take years or a lifetime. We need you to help us find our feet. We want to do as much for ourselves as we can, but need help until then, if indeed we get to be fully independent again.
We are greatly imperfect, as all humans are, but we can’t hide it like everyone else and some may take offense by our blatant honesty and unmistakable human frailties. We may offend or even hurt you, please know this is not intentional…our brains, our emotions, our hard drive have been damaged, and we can sometimes be unpredictable.
Please love and support.
The success or failure of our getting better, truly getting better, relies solely on the support around us. I have often felt I have pushed the envelope of unconditional love, but if I could have done differently, I would have. It is not easy learning to rely on others.
Please be open.
We often bear the weight of our own expectations of how we “used to be,” “should be,” or “wish to be.” As far as it is entirely possible, please do not impart your own expectations for how we should or could be. If we could do better, no one wants that more than we do.
Please take care.
As outsiders, care providers, friends and families of anyone with a disability, please do take excellent care of yourself. Accept the amount you can and cannot assist, get support if you need, and please take time out to nurture and refresh yourself.
Please let go.
Of how we used to be, how you would like us to be, the past, and the future…live in the moment with as much courage, integrity, and authentic positive spirit as you can.
Please be yourself.
Be honest. Be yourself. We know when promises are not kept; little do those folks know the hope of those promises is the oxygen we live on. Not being able to do for ourselves leaves us vulnerable, exposed, scared, and again, often feeling very alone. You can do a lot for us just by still being yourself. You don’t always have to be there giving everything, but like a patchwork quilt, a little bit can become a treasured heirloom of priceless beauty when others share themselves too.
Though we may not always show it, we are immensely grateful for your loving kindness, companionship, and understanding. Many a brain injured person has been pulled from the brink by someone on the outside who took a step toward them and brought them back from the edge. There are simply no words to thank someone for saving another person’s life. I only hope the satisfaction in your heart lives as a daily reminder.
Thank you for listening to our hearts, and making up a vital part of this net we are caught by lest we fall too far.
Back to the Beginning: Selling Things (posted Oct. 30, 2008)
Hi dear readers,
Recently I re-listed a bicycle trainer (turns a street bicycle into a stationary bicycle) on Craigslist after a couple of unsuccessful attempts at selling. I initially bought it on eBay to help me rehab my injuries. I was asking $50 less than what I had paid for it as it was still new in box, but when someone offered $75 – $100 less, I had a crazy, gleeful idea.
I told him I would make him a deal and sell it for $100 less if he wanted to, and could, make a donation to his favorite charity. He agreed! I did a little research and found shipping it to him would save him money and time, more money that could go to charity, so I shipped it yesterday, and he received it today.
He is training for a charity bike ride to raise funds for Breast Cancer. Isn’t that just the coolest?
It worked out he got the like new trainer for a good price, I got a little cash flow, and Breast Cancer will benefit too.
A nice, feel good win-win-win situation even in a tough economy! 🙂
Tags: craigslist, decluttering, letting go, selling | Leave a comment | Edit
Back to the Beginning: Applied for Assistance – Good News
(posted Nov. 2, 2008)
This week I had an appointment with our community services and much to my surprise, I qualified. From what I understand, I’ll be receiving a little financial assistance, if I understood correctly. She also said there is heating assistance I will qualify for so I need to reapply for that this month.
What a relief as my paycheck and part-time unemployment compensation are not enough to cover my mortgage.
I am grateful…and, as I’ve learned, cautiously optimistic!
assistance, getting help, gratitude
Back to the Beginning: It’s a Small World After All
(posted Nov. 3, 2008)
I was going to title this Asking for Help, but this feels more appropriate.
I’ve been struggling emotionally with a lot of things as I again try to do something to change my life from being between a rock and a hard place. Our lives become tremendously small, when disabled or with a long-term illness, and everything, everything focuses on our illness or condition.
Life continues to be myriads of appointments and stacks of paperwork asking questions and I relive the details of the trauma. I feel trapped and helpless in a downward spiral I did not create. Depressed, I am frustrated by my own limitations, and that resources and choices aren’t the same for disabled people as they are for the abled.
I’ve spoken with another person “in the know” who previously offered help now saying proving my disability to SSDI (Social Security Disability Insurance) will be tremendously difficult because I have worked – I worked because I needed to keep the house damn it! I have and continue to make A LOT of mistakes at work. What in the world am I to do? I don’t fit in the abled world and sure feels like I don’t fit in the disabled one either. I feel I’m at my wit’s end. I have lost so much and it seems there is no stopping the rest of the loss. Is there really no help for us in this situation?
How does a person stay sane in the midst of all this? Any wonder why TBIers suffer with depression and suicidal thoughts? If the TBI doesn’t kill you, going through the system will. I wish I had a plan! I wish I had a life that was far more manageable and allowed me to have a social life, friends, activities, hobbies, church, etc. Oh to simply be able to live…
If I do not get SSDI, I will have attorney fees to pay on top of all this. To go through all this struggle, all these years of hard times due to a disability and not be able to go onto disability is insane to me. I would never have chosen this life for myself! Like many people, I loved to work, I loved being active, having a social life, ministering and making a difference in this world. Sometimes the loneliness itself is staggering.
I emailed several organizations two weeks ago regarding resources for keeping my home and I’ve not heard back from one. I’ve asked the Occupational Therapist at rehab twice to send me the name of the person at the local paper to get my story out, haven’t heard back from her either. Maybe I don’t have a story to tell? I hate being this desperate! I feel like I’m pulling people down, oh but if I could have changed this path, I would have by now! This is real life. I’m used to being a giving and independent person, this new life is totally out of character for me.
Our work place has been audited and now I have to keep track of my hours even though it’s piece work and I don’t get paid by the hour! One more thing to fry my little brain, I don’t know how much longer I can hold on to this crazy life.
I am frustrated and so-o-o-o-o bone and soul tired. The fatigue has been ongoing pretty much since last fall and I don’t remember the last good day I had. Dang this stress!
I made another appointment with the social worker, I have to talk to someone and God help me find people who can and will help. I have chatted with a couple of TBIers online, despite chat goes too fast for me, it’s helpful to know I’m not alone. Some of them tell me to hang tough, fight for what I need for my life, and others say sell and move into an apartment, another says it’s criminal people lose their homes. I think all this is much easier when you’re not doing all this alone, and have support of friends and/or family, which I do not. I think always having been the giver, the one to make people feel good about themselves people still need me to be that way. My entire person has changed and I guess maybe that means people ‘loved’ me before for what I did, or how I made them feel, not who I am.
I don’t know who to turn to in these really bad moments. I’ve tired of telling my story over and over to those who cannot help nor understand. Why is this such a difficult path?!!!
I feel stuck, the emotional pain and suffering intensely etching my soul.
Please pray for me.
brain fatigue, depression, despair, desperation, disability, grief, housing, losing hope, needing assistance, seeking help, stress
Back to the Beginning: “Most People Lose Their Homes”
(posted Nov. 5, 2008)
I met with the Social Worker today and it was tough. She asked how I was doing and I said I was struggling to find resources to keep my house. She apologized for there just not being resources out there, said I’ve done more research than most people she knows facing this situation, and that I’ve done well advocating for my needs.
We talked a lot about the right thing to do, living with a clear conscience and living true to faith. I said it seems as if the system calls us into ethical and moral conflict if we do the right thing, like me telling unemployment about my disability, we pay a high price in our survival…more stress, more fight or flight reactions, and the more our overall health suffers.
She said most people lose their homes. This is not the first time I’ve heard this and I told her that is why I fight so hard, to keep that very thing from happening, and I don’t understand why it has to be that way.
She cautioned about my expectations for going on disability, it is not very much money at all, and it may not provide me with the rest or peace of mind I think it will. But alas, the great Catch-22, I cannot work full-time and I cannot live off part-time income, no benefits, etc. I’ve worked my tail feathers off the last several years trying to get better and it hasn’t worked, and again, other areas of my health suffer because of it. What I’m doing simply isn’t working, I am acutely aware of and feel the stress taking its toll, aging me.
I started to cry when I said what is the point of fighting so hard if you end up losing everything that matters in the end?
disabilities, housing, living with traumatic brain injury, social worker
Back to the Beginning: I Dream in Horses (posted Nov. 12, 2008)
Some people dream in color, I dream in horses!
I had another dream of horses again last night. Of all the things to dream about in this world, my dreams oftentimes revolve around horses. I’ve loved them all my life, so much so I used to joke about ‘horse’ being my first word.
In my dream I was with a gentleman I think I was involved with and I asked him to take me to where the Vaqueros were riding their horses. The Vaqueros have a history of being excellent horsemen, they knew horses well and were known for being gentle hands with horses. I’ve had a passion for Vaquero horsemanship ever since I learned about it from Buck Brannaman and Greg Eliel at clinics years ago.
I’ve heard it said that a person who finds their passion finds the spark of life. And with Brain Injury that is probably never more important as our brains work a little differently now. But the neat thing about passion and that spark is it provides a different type of energy. If you can get a Brain Injured person talking about their passion, their face lights up and they can tell you much more about that subject than any other. Somewhere there must be a tie to that which the heart loves and how our brains work.
I’ve not had much to update my blog with this week as I feel I’m in a tunnel of appointments and trying to get things sold on Craigslist. I have worked hard to get better from this silly Brain Injury and after burning myself out last year, all I desire is to get on with the business of living and get to have things like a social life, hobbies, etc.
It was not too long ago when I asked the now retired Social Worker at rehab if anyone would ever want to be around me again. We lose a lot along this jagged path of TBI. I think my question surprised her, but she said she believed even with a disability that I could still have a good life.
That is all I want. Not riches, fame, material stuff, just a good life with trustworthy people, dreams and a passion.
Tags: dreams, horses, mTBI, passion, TBI
Back to the Beginning: Sold (posted Nov. 13, 2008)
Much to my surprise, I sold my Christmas tree on Craigslist last night after re-listing a time or two. I used to love Christmas, but honestly since losing my job December 5, 2002 from a Christian chiropractor, well, Christmas hasn’t been the same since. The tree was taking up space in my basement all these years. I finally got to where I could let go of that part of my old life knowing someone else may enjoy it.
Christmas changed for our family since Brain Injury and my job loss years ago, it was the end of us exchanging gifts, a difficult change after a lifetime of giving. I used to stock my closet with gifts, it was something I did all year long when I found things I knew they would like. Some changes you just make without really getting used to them or feeling comfortable.
I gave a lot of my decorations to charity since I basically only put up a front door wreath I made out of an old wire hanger and some garland. Simple, but it works. I kept some ornaments, the stocking my mom made, and other stockings I bought as decorations. I guess there’s still a part of me that hopes for someday having someone to share it with, and the stability to know what I can keep for good.
The gal I sold the tree to has a beautiful three-month-old baby boy, this was her first tree she’s ever bought, and it was the first one I’d bought too. So while there is always some sadness in letting go, I’m hoping the tree will become a part of their traditions, bring them much peace and joy. One thing I’d always loved was having the house lights off and just sitting by the tree in the glow of the lights, relaxing in its peace and quiet.
I also had a beautiful brand new hand-blown glass diffuser with pine scented oil that I gave her as well. It was a gift I’d received with a purchase and I thought it would be neat to have the scotch pine tree and the scent too!
Will Smith said on Oprah the way of nature, the way of God is there is birth, death, and there is ALWAYS rebirth. He said it again, that there is ALWAYS rebirth. That stuck with me. I admire him not only because he is a gifted artist, but because he is focused on life-giving priorities. It is awesome and rare to see a man like that. He and his family are living a very full, meaningful, authentic life and are not distracted by success.
There is a lot of death along the path of long-term illness and/or disability and it can be quite daunting, to say the least. It is not for the faint of heart. It will break you in ways you never thought you could be broken, keep you broken longer than you thought you could stand it, make you weaker than you ever thought possible…
So, here is to death and rebirth…
Christmas, dealing with loss, death, letting go, loss, rebirth, selling things, Will Smith, Oprah
Back to the Beginning: Thinking on Rebirth (posted Nov. 15, 2008)
With Will Smith’s quote still fresh in my mind, the Scripture from last night’s devotional is timely:
“Except a grain of wheat fall into the ground and die,
it remains a simple grain,
but if it dies away in the ground,
the grain is freed to spring up
in a plant bearing many grains.”
– John 12:24
The once vibrantly colored fall leaves have made their way to the ground and are turning the same shade of drab brown. The earth prepares itself for what seems to seasonally be a time of slumber or death. Many plants die back or go dormant during the fall and winter to be brought into new birth in the spring. Not many people rejoice in the dark days of fall and winter, but I’ve yet to hear a complaint about the beauty of spring!
As Will Smith said, after death there’s always a rebirth, that is the way of nature, the way of God. This is healthier acceptance than to think of death only in the terms of loss and sorrow.
Our nation, in general, is getting a feel for what almost all disabled people experience of losing their jobs, homes, not being able to afford heat, electricity, medical care, and food, etc. Perhaps this is for a greater good that those without disability would know and feel one aspect of the path we deal with all the time. I know of no disabled person or persons who are financially well off.
Perhaps this season of tough economic times will bring about a rebirth we could not have had any other way. Perhaps we’ll understand one another more, have more compassion, and return to values we left along the way to materialism and pride. We are all human, equally as vulnerable to becoming disabled and encountering a string of painful losses.
It has never been us and them, it’s always us and us. That which we do to someone else, we do to ourselves. Diminish another human being, we diminish ourselves. We free others, love others, we free and love ourselves. I think most people, given the choice, would prefer to be the grain of wheat that produces the greatest good.
Tags: acceptance, death, fall, mTBI, perspective, rebirth, spring, TBI, will smith, winter
Back to the Beginning: Mental Exam for SSDI…and Overload
(posted Nov. 16, 2008)
Last night was my Mental Exam for SSDI, Brother Frank drove me to and back, and that was a great help. I do not drive at night due to light sensitivity from those glaring headlights, I know it’s not safe, and I very much appreciated the ride.
I felt present for the event although I’ve been nervous and scared since I learned about this test. I used to be on the Honor Roll in college, but now test taking is not something I look forward to post-injury. It is embarrassing and frustrating to the point I want to cry when I can’t figure something out.
I was asked questions like current and former presidents, I couldn’t remember who was in office before George, Sr. I was asked to count back from 100 by 7 and that fried my brain. I have trouble enough figuring out basic math going forward. A lot of mental gymnastics. I was given a string of numbers to recall and had trouble remembering. I was also given three items to recall at a later time, I blew that too. I have no concept of time so keeping us to the 45-minute time slot was entirely up to the doctor. When we went past that timeline, he started filling in the words I could not recall. I need time, I process things slower now.
Today I woke with a throbbing headache. Brain Injury specific because of location, it feels like someone jammed a rod in my head from the crown, through temple, jaw, into shoulder. Definitely injury stuff. I am way, way slower as if sedated. Slept most of the day. This is precisely what overload does to a Brain Injured person. A simple 45-minute test for most people rendered me unable to get out of bed and function today. No question abilities changed drastically post-injury.
This is the tough side of Brain Injury, I may be able to go and do something giving impression I’m high functioning but it’s the aftermath no one sees. I pay dearly for everything I do. I have a very small life balance scale, if I add one thing, one or more things fall off. At this time, the balance scale has no room for social life, friends, hobbies, etc.
In rehab, we learned “Planning and Pacing” and I won’t tell you how much I hated that phrase as a formerly Type-A personality! As humans, we generally don’t like limits. No one enjoys being sick in bed, and this is like that, but to a greater degree.
Tags: brain fatigue, exhaustion, mental exam, overload, recovery, rest, SSDI
Back to the Beginning: Overload Continued (posted Oct. 17, 2008)
Today was another day of recovery, testing my limits of what I can and cannot do. Goofy thing about Brain Injury, every day really is different. What we were capable of a day or two ago, we may not be able to accomplish at all today.
I thought I was doing pretty well, all things considered. I was sort of upset with myself for the questions I couldn’t figure out or got wrong, even the details that bug me now will soon fade away very quickly. Life with Brain Injury.
I decided to go for a walk this morning, and am glad I had sense enough to turn around once I started feeling dizzy and light-headed. Something as simple as a short walk I would have taken for granted before is too much for me now, such a stark contrast from the very active, busy life I once knew and loved. I had to lie down afterwards and let myself recoup. Today is definitely a day of self-care and listening to my brain.
After resting, I decided to go to a church that offers food and clothing at no charge, and since I have wanted to go for a long, long time and every time Monday comes and goes, I never realize it until it’s too late. I have terrible difficulty with the concept of time. As my friend Brother Frank says, “time stands still” for me. At least I was consistent at forgetting! So I wrote it on my calendar and created a map online. It’s in my city, and I know, I’ve lived here a long time and the streets confuse me, I get them mixed up now.
Going to a new place can be quite overwhelming for a TBIer and in retrospect, I wish I had simply opted to go next week. It was way too much for me, a screaming child was upsetting everyone and I didn’t remember I not only had earplugs with me, they were hanging around my neck on a string tucked inside my jacket. Only later when I looked in the mirror did I see them and remember using them for my walk. At any rate, I misunderstood thinking they had food we could take with us, rather than a meal to sit down with others and enjoy. They offer bread and produce when it’s available, and since I’m allergic to wheat, bread is out for me.
I came home and had to rest. I did bring home a few clothes to hopefully help me stay warm this winter, the items that donn’t fit will be donated back to them or other charities.
This evening I was simply working on photo editing for things maybe for eBay or Craigslist and I noticed I kind of checked out for a second. I’ve had vertigo many times before and this wasn’t it. Did I just have a seizure? I did online research, it is entirely possible I did have a minute seizure, and yes, I’m well aware of the price we pay when it comes to stress and TBI.
But moments like these are reminders that Brain Injury can’t be ignored when I have other plans! Whether I think I’m having a good day or not, little things like dizziness and later ringing in my ears can tell me a lot. I chatted online this evening asking about my experience, one person said I could have indeed had a seizure, the other person said he thought it was overload.
Perhaps I was overloaded and still recovering from the Mental Exam.
Tags: living with traumatic brain injury, overload, Realities of living with TBI, rest
Back to the Beginning: Still Recovering (posted Nov. 20, 2008)
Par for the course, sleep is off, sense of timing is way off, migraines have been common this week, more stubborn and pervasive than usual. Simple routines like remembering to cross days off the calendar are crucial since I have no concept of time, when overloaded even that falls to the wayside. I often talk about my life balance scale being very small, add one thing, another thing falls off.
Tuesday morning I realized that was the day appointments were to be ‘opened’ for next month for heat assistance. Instead of getting rest, right at 8am when their offices opened, I was calling and calling, getting a busy signal and messages the number wasn’t in service. I tried scheduling online, and the appointments were not available.
I decided to exercise for a bit, staying active helps manage pain, so it’s important to keep moving, plus this time of the year I’m cold all the time, exercise is a good way to get warm for a little while! I returned to the computer not much later and the first appointment I could schedule was December 23! Oh my gosh! This is so odd since I was in there October 30, they said I qualified, and now I have to wait until almost Christmas to be seen. This is not what I expected or hoped for, especially since I was approved for financial assistance on October 30 and have not received anything. Sigh. These things, if they happen, take time. I think we believe people in need are taken better care of than they actually are.
I still don’t know if what I experienced was indeed a seizure or not. What I can tell you is this, after that happened I had “almost memories” coming frequently. I say almost because they were like a millisecond flash, not enough for me to recall a specific memory, just enough to make me feel weird. I didn’t know if it was a good thing, maybe my brain was making new pathways, perhaps a good sign, but honestly, when I sat down and timed it, it was happening every minute to minute and a half without trying to recall anything. It was the strangest thing because I pretty much live in the present, flashbacks are not something I’ve experienced post-injury.
I prayed and asked God if these were signs, if there’s a warning I’m missing, or if there’s something common in all these almost memories. No answer, so after a day or day and a half, I took some sleep medications to rest my brain because it was too much! Since I rest, I haven’t had them since. The brain is a strange thing!
Tags Brain Injury, flashbacks, memory, seizures
Back to the Beginning: Advice (posted Nov. 25, 2008)
I’ve spent a lot of quiet time pondering why the advice of others often times is more offensive than helpful. I think it depends on who is saying it, what their experience is, how they say it, and how well I know them.
I believe beyond a shadow of a doubt people mean well, but I also realize common psychology does not reach the depths of a person with a Brain Injury. I am completely different from those who are giving the advice and I think in the core of my soul I know they do not understand, and it is my intuition I rely on most.
I think some of it is raw frustration of people not hearing me. I’m sensing lack of respect for me and for my boundaries, and an underlying nagging feeling they’re really telling me how I’m living my life, what I’m doing, who I am now, is all wrong.
I feel people are where they are for a reason and if someone else goes into ‘fix her mode’ I sense that. Being vulnerable, far more vulnerable than I ever dreamed I would be, I don’t like it. I think I’m pretty reasonable in accepting advice from people I know and trust, but it must always be filtered through my discernment. I don’t want to alienate people into thinking I will reject all their advice.
I would not be hesitant or guarded had all advice from people on this path been healthy and helpful, people make mistakes in their judgment and I pay a big price. We know it’s not just the good-hearted who rush in when someone is down and out.
What would you tell someone who is lost and does not know the way? Think positive, know if you’re on the right path with God you feel joy, give them a list of directions they cannot follow? Have more faith? I don’t think so!
Maybe simply, lovingly show the way knowing the person may be scared, lonely, bewildered.
Tags: advice, boundaries, discernment | Leave a comment | Edit
Back to the Beginning: A World Away (posted Nov. 22, 2008)
Last night was a belated birthday dinner for a friend of mine, a friend of hers called and invited me to honor our friend. I paced and planned so I could go.
It felt good to go out and be social, good energy, but found myself frustrated by an invisible wall that separates me from the normal world outside of disability and survival. I was told every time I tell my story I’m putting negative energy out into the world and my body is reacting negatively to that. I wondered why people were talking at me, giving advice when frankly I don’t recall asking for it.
The friend we honored hugged me at the end and said I was a beautiful person, I jokingly said, “Aw, Gawrsh” like Goofy does to Mickey Mouse. They said I need to speak of the beautiful person I am, I am a person with a condition, not a condition. I said I was joking, they didn’t hear it. I felt like everyone there was taking my inventory when I’m not equipped to do the same for them (maybe a good thing.)
I felt alien, like I wasn’t on the ‘feel good bandwagon’, but honestly, who feels good when going through stuff like this? A gal talked of God’s promises and I wondered if she’d ever experienced this kind of stuff I’m experiencing. Outside of the loss, I told her what I experience is like early Alzheimer’s surely that didn’t sink in her memory as she told me what to do and things I need to remember. She’s newly married with five acres on waterfront and is going to have a house built this year. She said they have three cars they have to sell, “toys.” At some point I got overwhelmed or brain fatigued and I struggled to speak, I got to where I was unable to engage anymore. She continued talking. She apparently works for a company that gives monies to the banks that give lenders money or something to that affect. At any rate, I told her where I’ve looked, the research I’ve done and there are no resources for people like me in my shoes.
I knew I was getting to a bad brain space when I was struggling to close the lid of the food container I was given for my leftovers. It was embarrassing!
Yes, my body is experiencing stress because currently life is stressful. My being there took a lot, I got there before everyone so I could look at the menu and try to decide while I still had brain energy to do so. It was loud and in hindsight I really wish I had decided on a menu item and ordered before everyone got there. With all the noise, brain fatigue and everything, something as simple as trying to decide what to eat becomes a challenging test.
I just don’t think people understand. Yes, when I’m not in survival mode I can take better care of myself, but who can losing everything with a smile? I don’t know. The gal was talking about how with God there is joy. And if you don’t have joy you’re on the wrong path. Wow, and I began to feel like Job!
The last thing I needed was more people telling me what I wasn’t doing right. One day I’ll be stronger, but in moment, their words brought no comfort or encouragement.
It is easier to try to fix the person than it is to get involved and make a difference. I guess I resent that, I didn’t go looking for advice, they simply asked how my life is going and it’s messy, people! I am still looking for an answer and wondering why it is either you’re fully self-sufficient or you’re fully disabled and lose everything, I’m talking about this because it’s my life right now, it matters, and I’m not the only one who experiences it.
Sometimes I think maybe I should write an open letter to the world apologizing that my humanity, openness, honesty, and disability makes them uncomfortable. We are told to live authentic lives, I am living one. It’s not pretty, it’s not fun, but it is real life, and real life is what I want.
It is times like these I can be right next to a person or sit across the table and yet feel a world away.
I am a person to be loved, not a problem to be fixed.
Tags: advice, pacing and planning, social gathering, TBI
Back to the Beginning: Thanksgiving (posted Dec. 1, 2008)
I am proud for taking extra good care of myself planning and preparing for the journey to be with family. In order to be fully present for any event post-injury, I have to be prepared ahead of time and then right before, rest…a lot!
I had parking and ferry fare set aside so I wouldn’t have to worry about that. I always park in the same place because forgetting is such an issue for me, it’s very helpful to have a routine.
I had my earplugs in the entire way on the ferry, and allowed myself to just rest. Surprisingly, I fell asleep not once, but twice on the way over. I try to maintain this routine each time I go to be with family. It helps me have a little more energy, a precious commodity.
This was my first time seeing my Dad since he was in rehab from his heart surgery last summer. He uses a walker and has a wheelchair he sits in at home, he did GREAT at getting around. I was both proud and delighted. That man is a miracle!
My Step-Mom shared my wayward brother, who will be 43 this month had called my Dad three times in quick succession trying to get gasoline money out of him. Grow up!
We ate out for this first time ever, the restaurant was packed and even though we had a reservation we still had to wait a half hour. Wow! It was too loud for me, I tired very quickly.
Dad asked my brother at dinner if he accepted Jesus Christ as his savior. I didn’t expect that! Dad faced death and needs to know his kids will be okay. In typical dysfunctional fashion my brother lied and my Dad accepted it. I wasn’t ready for any of that. I was a little teary-eyed Dad asked.
Back at their home for birthday cake for my oldest brother, Dad was trying to give us his family Bibles. I wasn’t ready for that either. I turned them down knowing I very well may not be keeping my home and wouldn’t have place. It was hard to hear him giving them away!
Dad said I would get his car and as nice of a gesture as that is, since I’ve been driving the dent-mobile for years, I didn’t like it what that meant. It was reminiscent of when Mom died when I was sixteen and got her car. Tough stuff to think and talk about since I finally got to the point where I have to sell my Mom’s sewing machine. Mom was always sewing, and all in all, it’s a heck of a lot of loss to be looking at right now, and yes, I guess that should make me sad.
I got my paycheck today and I did not even earn $300 last month, worst month ever. I continue to list things on Craigslist and pray I don’t have to dive into savings again, if things don’t sell, I will have to. I have listed four things on eBay and have no idea how they’ll do. eBay is labor-intensive and can be quite costly.
Still have considerable lingering concern about my future, how this will all pan out. I so wish I could work full-time, have a job with benefits, paid vacation, sick leave, stability, and security. I already have memory problems, but due to genetics and two Brain Injuries, chances are I am likely to develop Alzheimer’s.
More than anything, I want a less stressful life, because this stress, especially the financial stress is the worst for us with TBI.
I sold some batteries and a charger on Craigslist to someone I met at a local grocery and he must have thought I was drunk, I couldn’t think clearly, got confused talking and I lost my balance in front of him. I can seem completely competent one moment and not the next. How embarrassing! At any rate, it was nice to have that little bit of money to buy produce.
Dad called yesterday and said he had been looking at his finances and asked if $1,000 would help. I said yes, but told him to hang onto it, he needs it more than I, I have savings if I need. Jiminy! I couldn’t take his money, it’s just not the right thing to do.
That man served in WWII, served and given his entire lifetime, donated blood, served at church, I appreciate his wanting to help, but I really have to do this. He has to focus on getting better and taking care of himself, he need not worry about me although I know parents do. We should all be at a place in our lives we can be counted on to be there for our parents, not the other way around.
I had taken my CD player to Dad’s hospital room when he was in Critical Care, because my hands were too full when I was returning home from Thanksgiving, I told them to hold onto it a little longer. Dad said he listened to the CD of Fernando Ortega I left in it and he said he thought he remembered hearing it play when he was in the hospital!
That lit my heart, he had heard and remembered! Never underestimate the healing power of music, even when folks seem unresponsive!
I believe if we ministered to people’s spirits instead of what we see with our own eyes, we would change the world in a heartbeat.
Tags: family, mTBI, pacing and planning, rest, routines, TBI, Thanksgiving
Back to the Beginning: Denied (posted Dec 2, 2008)
Had an Unemployment appointment this morning to go over my job search log. I asked if they changed my benefits because I’m only able to work part-time. She said no, the calculation for benefits is denied purely on the hours worked for the quarters I am requesting assistance.
I was relieved but now have to wonder why it is less than before. She said it was entirely based on what my employer reported.
On my way home I stopped by my Post Office box. The first envelope I saw was Social Security. According to them, my disability it not severe enough to keep me from working. Well, that was simple. Inaccurate, but simple.
Trying to comprehend their denial letter I’ve felt this way before, struck numb by more bad news. Driving home I started soul crying. The kind where you weep deep sobs as if the very marrow in your bones was crying out.
Why does it have to be this way? I’ve gone through hell, lost my very life, trying desperately to hang on to my house and then this. I could not stop crying, I could foresee losing my house, but my pets, not my pets. How do I explain to them I love them with my life but may not be able to keep them? Oh my gosh how I hate this with every cell in my body.
How in the world can anyone understand not only my Brain Injury but this convoluted journey life becomes while simply trying to survive storm after devastating storm. To top it all off, this Friday is the anniversary of my losing my job/ministry because of my Brain Injury. Hard times indeed.
This is real life. I want a simpler, less complicated, manageable life…one farther from this tragedy and close to the good things of life. I want a good, deeply rooted and meaningful life.
One of the things I walked away from Thanksgiving with was how I have lived in the shadow of people who have served with their lives, I got to see that in my grandparents and parents, and for much of my adult life I was able to as well. I miss being able to serve and give.
How does a person manage in the midst of ongoing storms that threaten the very foundation of survival?
Tags: denied, disability, helplessness, losing hope, mTBI, ssdi, TBI, traumatic brain injury
Back to the Beginning: Surviving (posted Dec. 13, 2008)
I’ve not posted because I’ve been exhausted listing things on eBay and Craigslist, trying to sell what I can to help make ends meet. Craigslist is easier, not as safe, and I’ve been hit by scammers who I recognized early enough to not get scammed and wasted my brain energy.
This month I will have to dive into savings again, and will have to continue selling as much as I can the next several months too. Sad times.
I went to Brain Injury support group, shared I was denied benefits. Knowing this is common does not make it any easier, I thought having an attorney in neurological issues would be enough to get me through. The Occupational Therapist agreed.
The denial letter had more than half a page length of medical doctors, clinics, individuals I have seen for my Brain Injury, still it’s not enough. I don’t look disabled, I don’t sound disabled either, but that’s because my lesser days I’m completely unable to get out of bed and/or function.
According to them, I still have some skills and can be retrained, but I went that route twice through DVR and they said until I got “my act together” they couldn’t help me. Gee, isn’t that why I was getting help?!
The Occupational Therapist asked what I am going to do, other than reapply, or whatever the next step is, I don’t know. There just aren’t resources out there for people like me and I’ve given up every other part of my life. We chatted with other attendees about people with Brain Injury that we know who have lost their homes, and it wasn’t a good thing. No happy endings.
I wish I could apply the adage that what we worry about rarely happens, but this is different! Denying the path of us disabled folks doesn’t make it any easier or change the reality. The Occupational Therapist said there probably aren’t resources in this county to help me keep my house. What do I do?
All I know to do now is hope for the best, but try to prepare for the worst. It tears at the very fiber of my soul, but I know no other way. To go through so much struggle, loss, heartache for what? To lose my home in the end? Wow. And then what?
I’ve heard it all along, from everyone I’ve talked to, whether DVR or doctors, fellow TBIers, whomever, the bottom line is most people with TBI lose their homes. The Occupational Therapist said we’re at high risk for being homeless, something I learned reading a Canadian research study that showed half of the homeless population had Traumatic Brain Injury. Wow.
Where do we go, what do we do? Where is our place in this world?
I am exhausted by this injury and my efforts to keep my house from slipping over the edge of irretrievable loss. The stress and exhaustion alone are daunting, but to not have any good come from my efforts is disheartening, to say the least.
Tags: home, homelessness, housing, living with traumatic brain injury, Realities of living with TBI
Back to the Beginning: Home (posted Dec. 17, 2008)
Life these days is about home, whether I get to keep it or lose it.
Home is not just a place to live, a house to own, it means a safe place to be myself, where my animals and I can just be. No pressure, but an ability to take care of myself and pets which has been high priority since the accidents.
Home. I think of warmth, comfort, safety, familiarity, peace, stability. It is not a place to acquire possessions or impress, it is the foundation of my life.
Home is where I wrestle with issues people never see, safely cry, be who I am without fear. I am accepted here. My animals loved me before and after I was disabled. Though sometimes this home feels like a prison, it is one constant in these arduous years.
As a person with a disability, my home is a tool. I can control the lighting, movement, noise. I am free to wear earplugs without anyone commenting or judging. It is where cupboards and drawers are labeled because I forget their contents. It is where the stove burners are labeled because I forget which is which and minimize potential hazard. Things are organized in ways to help conserve my brain budget for bigger tasks like working, and maybe one day, have a social life and be more active again.
It is also where I exercise. I’ve been active all my life, but especially after the accidents, if I do not work out I experience increased pain and loss of mobility, and the nagging, irritating thing of my hips having a mind of their own and painfully dislocating. Not fun! Exercising at home is a very important part of my life because I can no longer tolerate noise and movement of a gym.
I can darken any room if the sunlight is too bright or if I need to rest, everything tailored to my needs and it works for me.
Having a home is one of the most important things I could ever ask for. I grew up with domestic violence, when old enough, got out as much as I could, that wasn’t enough so I house sat. While it was helped, life was constantly nomadic and tiring. All I wanted was a home of my own. I rented for years, usually Mother-in-Law apartments, I never liked complexes. I doubt I’d like them any more now with uncontrollable noise.
After moving three times in quick succession due to each being put up for sale, it was time for me to look to buy a home and grow roots! I needed stability, having landlords deciding to move and having to find another place added stress.
After a long search, this home was one I could afford, a far cry from the 50+ others looked at all over the county! My home is a place for me to lovingly care for as God would have.
It is where I planted a rose garden in memory of my mother who loved roses. When a special person passes away, they have a beautiful rose planted in their honor. The last one planted was the Peace rose for my grandmother.
Home is a place to sing, dance, exercise, be silly, play with the cats and dog, and be as free as I can possibly be. All other connections to this world have been given up in this arduous journey of disability, must I also lose my own home?
Do the disabled have any less need for the safety, security, comfort of home? Need we be segregated out of society into densely populated disabled-only communities?
Are we excluded from the American dream? Everyone needs a home to call their own.
My home is where I thrive, dream, love, hope, laugh and cry. It is where I continually try to help myself get better, help my brain. Maslow said shelter is one of man’s most basic needs. Right now, I need one sure thing in my life. I need one place where I do not feel lost or that I do not fit in. A place to call my own without the slightest threat of it being taken away.
I feel if I give up the fight for my home and what I believe is right I am condoning what society says is the outcome for most with TBI – losing the right and ability to home ownership and be tossed into a merciless system that cares nothing for the spirit and soul of those who pay into it.
I would be as adrift as I was when I had to house sit, but worse, with a disability and health that will only continue to worsen in that type of undeniable, ongoing stress.
Just because most people lose their homes doesn’t mean it has to be that way or that it is the right thing, it just means that is the best we can do thus far…
Tags: disability, home, homelessness, mTBI, Realities of living with TBI, TBI, the meaning of home
Back to the Beginning: Heat Assistance…Contradiction in Terms?
(posted Dec. 23, 2008)
Today I had an appointment scheduled for heat assistance as I was told on October 31 I qualified for but would have to make another appointment. No big deal I thought having just been seen…
Well, I learned they only open up appointments on ONE day of the month and if you don’t get through that day via phone or online, you have to wait another month just to TRY to schedule an appointment for the following month if you’re so lucky as to get through.
November 18 they opened up appointments for December and today, the 23rd was the earliest I could get.
We have 12 inches of snow here, I have no snow tires, no traction devices, so I haven’t left the house since last Wednesday night before the snow and ice settled in. It’s not like any of it has melted. I did go for a short walk this morning to test the road conditions and it was slick even on two feet. I’ve heard the postal folks can’t even get through their routes and UPS is trying to do its best to make it from place to place.
I called the heat assistance office yesterday and left two messages, I emailed them Sunday and heard nothing back until 1:00 pm today. She said she didn’t know why I had called. I explained.
She said today and tomorrow morning are the makeup days for the appointments missed because of the snow. I laughed and told her my car is buried and more snow is predicted for tonight. She said the only other thing I can do because I had an appointment is when I can come in just come in and wait.
She said there is no telling how long I would have to wait to be seen. Nice. What is the point of making an appointment and having to wait two months then when I had already been told I qualified? Oh how I hate these systems that do not make sense.
All appointments for January are already taken, as I learned when I left my message.
I always understood if you couldn’t make an appointment, you called and would be rescheduled for another time…not left to just go and wait in hopes they can see you. Wow. That would be very tough on my Brain Injury, I already know that.
At this rate, even once I go in for the appointment it can take several months before you actually receive assistance, so it may be spring before I actually get the help I need right now. Sigh.
Maybe heat assistance really isn’t that…maybe it’s a different type of heat like how mad they can make people by their lack of compassion and logic! Just another number in the system…
Life is tough in the big woods!
Our family canceled Christmas Eve dinner because travel is difficult for everyone.
Tags: denied, disability, disability resources, heat assistance
Back to the Beginning: Escape (posted Dec. 28, 2008)
I escaped today! I tried to get out of the house yesterday but with snow, even in an old pickup truck, I ended up slipping, sliding, and then sinking into the mud underneath the slush.
I was able to rock the truck back and forth yesterday to get it unstuck and then promptly parked it back in its bare spot. I then put down some salt, wished it away and let it be.
I’ve been housebound since December 18th when all the snow started. Initially it was quite beautiful and fun because it wasn’t the typical wet, heavy snow like we have now, it was light and there was a lot of it.
Today I took the car, it is front-wheel drive, I’ve driven in the snow before my car accidents and it was hilarious. I kept sliding and slipping and backed up into the bare spot to get a little run at the incline to get out and then would get stuck, again and again I did this not knowing if it would work or not and giggling like a little girl.
Fortunately I made it out and did not end up getting stuck in the middle of our street! I got to do a little shopping at Target and at Costco. Exhausting, but very nice to be out of the house. I also went to the Dollar Tree, and the music there always interferes with my brain waves. LOL! Where are my earplugs?
I bought some kitty litter there in the event I got stuck coming back up my hill. I didn’t get stuck so I went out and poured in into the tracks that were made because I had a good run at that hill before I got to my house.
Funny thing was, I didn’t exactly drive straight into my parking space, I sort of slid sideways and somehow ended up straight. Again I was giggling like a little girl. Hilarious and grateful to have made it home and not have to worry about abandoning my car and walking (slipping!) up the hill. Last thing anyone with a TBI needs, is to fall and risk further injury.
I don’t feel too bad finally getting out today, I overheard a gal at Target saying the very same thing, she couldn’t get out until today. And on the news garbage pickup has been delayed for all this time. I shudder to think of trying to get my garbage can to the bottom of the street.
It felt good to get out and get to the Post Office finally to get my mail. I was getting a little stir crazy staying home all that time, working on eBay and craigslist, but honestly, struggling with being bored to the bone.
Our street is in the shade so it will take some melting yet, I also more sprinkled salt to hurry the process! Hopefully the kitty litter will help my neighbors get by, one got stuck in front of my house the other day.
I have often wondered how other friends I know with TBI do staying home almost all the time, they use public transportation they have to schedule in advance, but now I know what it is like to be housebound and really stuck at home. It is not easy.
Lesson learned, I gained a lot of appreciation for those who can be at home and not go a little stir crazy. It really is a different world we live in where too much stimuli from music, TV, movies, trying to read, retain, recall, etc., makes times like these just a little more challenging and restless.
Sometimes our homes really can feel more like prisons than a nurturing place of peace, rest, hope, etc. We take a lot for granted, like being able to be social, and having the freedom to come and go as we please.
I am relieved to have had a chance to get out and about, it felt great! Escape is good for the soul every once in a while.
Tags: cabin fever, driving in snow, getting out of the house, housebound, snow freedom
Back to the Beginning: Christmas 2008 (posted Dec. 29, 2008)
This Christmas was probably one of the most difficult I recall. Being housebound due to the snow, I did not have any sort of special Christmas dinner, the first in my life. It was rather strange, a change I had not planned on.
Our family canceled Christmas due to weather. We’ll get together in March for Dad’s birthday. Hopefully I can go visit before then, that’s a long time.
I don’t own a lot of movies because I’m not one to sit and watch movies. I have been trying to read “The Story of Edgar Sawtelle” and love the subtleties of dog training, but because of Brain Injury, I can’t retain details necessary to understand and link the story, previously a relaxing hobby is now strenuous.
Overall, I guess I felt out of sorts, not knowing what to do with myself and the loneliness I experienced, feeling guilty for not having much Christmas spirit. What to do when housebound, Brain Injured, alone?
I did happen to watch Oprah and see a great story about her O Ambassadors. They’re teens who are making a difference around the world. This story highlighted 12 teens who went to Africa to build a school. None of these students had construction experience, and their training took form of a 30-minute lecture, then they were told to go build!
The U.S. students got to see and experience real poverty, beyond their beautiful handiwork of building the new school was their beautiful heart work as they connected with the incredible African children. I cried! It reminded me what one in our Brain Injury support group said, “That is the King’s wages, the feeling you get when you help another person.”
These teens were doing what I used to love, it’s that connection with people, the priceless part of helping others, my gosh, I miss that so terribly much!
It was such a beautiful story to watch and feel that positive, healing spirit and energy when people reach out to others in need. This group was so touched by those children who pray to be able to go to school, they returned at another time to dig a well so the children would have safe drinking water. It was one of the most inspiring things I have seen in a long time, and don’t we need more of that these days?! Those teens raised all the money for building the school and digging the well. Awesome!
If I ever get to volunteer again, I have to do something to change the lives of others. My heart, my love, have to be set free in that manner, to not do so is to not breathe! I still have that need to make a difference in this world and do something, be something, that matters for the greater good.
Tags: christmas, disability, disabled, giving, making a difference, mTBI, TBI