[You don’t have to look very hard to see my Brain Injury results…LOL…like copying and pasting this blog I forgot to include some posts. Ah yes, I get confused and am forgetful. But, I’m still here and I wanted to link to this post in my “Why” page I just added.]
Saturday, February 25, 2012
Farewell to a friend: RIP Thomas William Weese AKA Totemwood Tommy
[This post, this blessed, difficult post has been a long, long time in coming. I have wrestled with it, mulled it over in my head, let it rest, wrote and re-wrote countless times. As with all things TBI, emotions zap us of precious energy. Oftentimes, the feelings just need to be until the TBIer finds strength.]
My first recollection of Tommy was at Brain Injury support group in Bremerton. He, with the help of the group facilitators, led the group on an interesting exploration of Personal Data Assistants (PDAs). He emphasized the importance of having good tools to help us function better. He had handouts and even passed his own new PDA around so we could see one for the first time. I did not know it then, but this was just the beginning of many things he would freely teach myself and others.
Later on, when the group moved to the new location it was he who approached me and we visited for a little bit. On the outside, Tommy looked like everyone but used a cane, it’s only after talking with him you’d begin to hear or see his Brain Injury.
Admittedly he didn’t make me feel welcome in my new TBI world because he said he didn’t size me up as a person with TBI. Great! I didn’t fit in the ‘abled’ world, nor did I fit in the ‘disabled’ world! That would be my first of many encounters with the two worlds I don’t quite fit in – partially abled and partially disabled.
It was seeing how he was in group that I caught first glimpse of my new self. When group got to be too loud, he did not get agitated, angry or loud, he shut down. That’s exactly what happens to me! The energy has been zapped and we’re pretty much toast. Bummer is, we still have to get through the rest of the meeting (or whatever activity it may be) and get ourselves home! Times like these Tommy would say his brain budget was low and he needed to take a break.
He also termed the phrases his ‘brain went hikey’ or his brain ‘went out for a hike’ and he would have to take a break and wait for it to come back.
In time he came to see more of my deficits (I wore a pretty convincing mask; I already knew the piercing rejection of being my true self.) Tommy invited me to join his online group where I was able to share my woes and more often than not, glean experience, strength, and even hope, from others further along the path.
Tommy had troubles of his own but he also had an open heart, willing to help those who were bewildered and lost in the TBI wilderness. If people truly wanted to get better and do better in their TBI world, Tommy would make the investment in offering to help them if he could.
He taught me SO much and his death caused all those things to come to the forefront.
He always talked about ‘workarounds.’ I’d never heard that word before, he emphasized with TBI we need to find different ways to do the things we did before without even thinking. Oh how I would bemoan “compensatory strategies”, which we could all see was about as smart as trying to live without oxygen! LOL! 🙂
He talked about the harsh realities of having lived in a group home and how tremendously hard he worked to get out of there. He was not a person who was overly dramatic, so you know when he said things were hard or bad, that was probably an understatement.
He taught me about having “to do surgery.” That was his way of saying I needed to cut away parts of my life that I could no longer manage…I can’t tell you how dreadfully painful that was to hear. It was a crystal clear truth I fought like hell to avoid. But, he was friend enough to be straightforward and honest.
He talked of having to give away his little dog he loved so much because he was afraid he would hurt her. He hadn’t, but he also knew he was capable as a TBIer. That, my friends, is love at its finest and another piercing truth for all of us pet owners to consider soberly, honestly, and maybe with the help of an objective third party.
He showed me how to do things like set up a web page even though it was very, very taxing for him, but I learned it was okay to take breaks when our brains ‘went hikey’ because that’s what I saw him do. It was/is a challenge for me as a former Type-A personality.
He taught me about having a payee which is what I have now too.
He would describe his coming out of the coma and into a world full of molasses – what a great analogy.
Coming from him, simple encouraging things like, “Hang in there, Kiddo,” meant a lot even though there wasn’t a generation gap…LOL…or at least one I didn’t see! 🙂
He would often talk about feeling like he was 8-years-old going on 80.
He always talked about adapting to fit the situation, and, his coming from a strong 12-step background, so much of what he had to share was indeed rock solid.
He said there were many times he would start to write an email but was unable to finish it, so he would just save it on his computer and leave it until he had more brain bucks. He stressed the importance of THINKING and giving ourselves time before we hit the send button!
Hearing him encourage me or others, “It does get better” meant the world.
Tommy was the inspiration for me trying my first latte because he’d tell group about his rare treat when he’d travel via ferry to Seattle. Those long and exhausting trips of his to Seattle, by the way, were to go to the University of Washington’s Brain Injury Program and be a living example of TBI. Awesome!
I spent time with Tommy because we lived in the same city, and, when he talked about lighthouses, his eyes lit up. I got to drive him to the Point No Point Lighthouse a time or two where I felt his spirit was light and free; it was a great feeling to give back to him. It is no small coincidence in my mind he loved lighthouses. He was a light for many of us TBIers walking in such a profoundly dark and scary place.
Tommy often spoke of the importance of finding a passion. He said he didn’t quite understand the connection between having a passion and how the brain works, but said you can find a TBIer who can’t talk about much, but when they get talking about their passion, it’s like the circuits all light up. Suddenly they have something to talk about AND they CAN talk about! That was certainly something I could NOT relate to at that point in my life. My life for many years was survival, nose-to-the-grindstone mode, but it means a lot to me now.
Think about what brings you joy, what makes your eyes light up, what makes all your senses feel alive? You don’t have to know right now, today, this month or even this year, just keep listening to your heart, experimenting, and find a passion. You too are a lighthouse; as I’m sure Tommy was completely unaware of being, you might just not know it yet. 🙂
In time, Tommy outgrew group, as often happens for high-functioning TBIers. I had grown to feel the same way – we go to group to help the newcomers by giving the support and encouragement we received but we really needed a group for high-functioning TBIers to talk, brainstorm, and reason things out.
By the time Tommy left group, he had sold his truck after suffering a seizure while driving. That was one very, very tough loss on him. One thing you may learn with TBI, it is oftentimes a continuous series of losses even many, many years post-injury, as was Tommy’s case. He worked through the grief and feelings and decided he no longer wanted to wait for a bus in the rain or have to deal with the difficulties of scheduling and riding the less-than-courteous transportation for us disabled folks. Tommy saved his money for a recumbent bike.
He showed me a picture of the bike of his dreams, and I was concerned for his safety. He reminded me we all have to die somehow…but he was so excited, and like Tommy, when he had a goal, he would go through the fires of hell until he achieved it.
With him no longer getting rides from me to group and my moving, we lost touch. It wasn’t until last summer (or fall?) I learned of his passing and it hit me hard. I remember him saying he saw himself dying homeless and alone and I told him his God wasn’t big enough. I regretted saying it then and still do. And I regret not being a friend at the time he spoke with excitement about his bicycle because I do understand feeling caged and missing one’s blessed personal freedom.
Tommy passed away July 5, 2011, alone in his single wide trailer, one day after the anniversary of my Mom’s death. It was his heart, same as my Mom. Whether heart disease or heart attack I do not know. It is a sad reminder those of us living at or below the poverty level often do not have the healthcare we need. I have to wonder how many TBIers die from heart-related illnesses or prematurely due to lack of quality care. TBI can take a terrible toll on our hearts, literally and figuratively. And, as oftentimes happens, we don’t take the best care of ourselves anymore either because everything is much, much more difficult, money is tight, or depression. Brains may be changed, but our bodies still need good nourishment, exercise, rest, fresh air, etc…
I learned after his passing that Tommy had joined an online group of folks who share the same passion for recumbent bikes and I’m delighted to tell you he made some good friends there too. It was they who hadn’t heard from Tommy, concerned, they drove all the way from Enumclaw to Bremerton, WA and found him.
How do you grieve for that pivotal someone who comes from such a deep place of understanding and validation, who shows you you’re not going crazy, has gone through so much, and still has so much to offer the world? His life was like so many TBIers, always a struggle, always swimming upstream, but, he still managed to care for other TBIers.
I still get teary-eyed because he was a good friend. He was no saint, none of us are, and knowing Tommy, he’d be the first to admit it! He would want to be remembered honestly, warts and all. He did rub some people the wrong way, like we all do, he had his issues or demons (as he called them) of his own to deal with, as we all do, but, he would always look introspectively and find his responsibility and make amends if needed or was possible. How many people even without TBI have that kind of transparency and courage?
So Tommy, this is for you, for the difference you made in my life, and in the lives of many, many others. You were nothing less than a real friend when I or anyone felt groundless, adrift, or crazy on this hellish path. You showed us what perseverance, acceptance, never giving up, being real, and courage were in 3D. Pun intended, you did ‘carve’ out a good life for yourself! (Tommy was a wood carver at the time we met so even with the cane you might not suspect TBI as it was one he’d made himself).
And this is for you, dear reader. I get to share the story of one fine person with foibles like all of us, who chose to define his own life, honor and respect and accept his limitations. It is not easy, it is not like anything you’ll ever see on TV or could have imagined, I will tell you that straight up.
I don’t share this story so you’ll try to emulate Tommy or to make you feel like you’re not doing your TBI right (LOL – no such thing!) I share this to encourage you to be 100% authentically you. No one is perfect, but it is vital to still find meaning & purpose in our post-TBI lives.
Of course it’s easier to give up, or at least it feels that way, but in reality we are cheating ourselves and others. I have gotten stuck in the “I can’t” or “I’m no longer a productive citizen in society.” Yes, our roles have changed, no doubt, but we can still make a difference, or as Tommy did so well, bloom where we’re planted.
We have work to do, to be a light to those joining us on this same, well-worn hellish path…to tell them from a place of deep validation and understanding when we too can say from experience, “Hang in there, Kiddo” and “It does get better.”