Monday, August 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 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 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 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?
Friday, August 22, 2008
New Stormfront: Disability Attorney
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…