I swim laps at the Y as well as take an intensive water aerobics class. This morning I was going to take the class but when I got to the Y, I decided to swim laps instead. I have a lot on my mind and my body needed to do some hard swimming. Plus, I didn’t want to talk to anyone or worry about hitting someone accidentally as happens in the class. I jumped in my lane and began saying my mantra as I swam: “God is here. God is here.” (see Feb. 16 ) I actually couldn’t remember why I had that mantra so I had to look back at my blog entries until I found the story buried in my post on disease. I need to figure out a way to keep track of where I write things since I often cannot remember the stories!
There is a television set in the locker room which drives me crazy since I cannot filter out noise (see May 9). Why do people feel they always need to have a television on? I never watch T.V. at home. We have one to watch DVDs on but right now, we have a picture leaning on it. We haven’t hung it on the wall yet so now it serves as a shield for our T.V. Whenever we want to watch a DVD we simply move the picture aside. Frankly, I like the looks of the picture better that the T.V screen!
I cannot carry on a conversation with someone with the T.V. noise in the background. When I visit someone in a nursing home or even their homes, I always have to ask them to turn it off because I can”t concentrate on what they are saying when it is on. I understand people who use hearing aids have the same problem. And it seems today T.V.’s are every where. There is even one in the post office so folks who wait in line have something with which to pay attention. I wonder when people have become afraid of their own thoughts?
I drove somewhere new today which meant I needed to use my GPS. I always like to have some idea of where I’m going so I don’t rely completely on it. Nevertheless, I become really spacey when I’m going to a new place. At least I’m prepared for it now so I kept telling myself, “Okay, remember you’re going to feel out-of-sorts until you find the place but you’ll find it so relax.” Fortunately I didn’t have a specific time when I had to arrive which took some stress off.
I do not like the term “brain injury victim.” Yes, I have a traumatic brain injury but no, I am not a victim. The word “victim” sounds weak and not in control of the situation. The truth is, I am a survivor. I’ve survived using another word if I’m unable to find the word I want to use. I’ve survived my over stimulation and have learned how to leave a room and put my ear plugs in when the noise in the room becomes to much for me. Many brain injury survivors have learned how to live with various aches and pains. Other survivors have learned how to live with vision problems. Some survivors have learned how to express themselves when they are unable to use their voices.
I’ve been reading a book by Arthur Frank called The Wounded Storyteller: Body, Illness, and Ethics. He suggests “witness” rather than “survivor.” He writes that he has no quarrel with this term but “becoming a witness assumes a responsibility for telling what happened. The witness offers testimony to a truth that is generally unrecognized or suppressed. People who tell stories of illness are witnesses, turning illness into moral responsibility.” While I do not consider TBI an illness (see 2/16/11), this statement applies to me and all TBI survivors.
He writes about a woman named Gail who has chronic pain. She comments “and all these people in pain…all these people with aches and all these people suffering. We walk in different dimensions. We have access to different experiences, different knowledges. And there are so many of us too. What would happen if we all knew what it really meant and we all lived as if it really mattered, which it does.” Frank goes on , “Gail claims different knowledges, but what would her answer be if she were called to account for such knowledge? What if a group of professionals were to examine her and ask, what exactly do you have to teach?”
I ask Brain injury Survivors, “What do we have to teach?” I’ll have to think about this some since I do get frustrated with all the things I cannot do that I sometimes don’t see what this
TBI has given me. I have often heard “survivors” or “witnesses” says they are glad they have a TBI for they have learned so much. I’m not glad I have a TBI but I have learned quite a bit and God has been with me all along this journey. I would have preferred to learn things a different way but sometimes this life throws us curve balls and we have to run for them!
If you have a brain injury, what do you have to teach? See above right for commenting instructions or contact me directly at firstname.lastname@example.org Since I changed email addresses, I can’t figure out how to respond to your comments on this blog so untill I get this bug worked out, know that I’ve read them!
In July of 2010, Ken Sehested, co-pastor of Circle of Mercy Congregation, wrote a litany, using Zephaniah 3:19; Romans 8:19-24; Psalm 126:5, in honor of the wedding of Annika Williams and Justin Bass. We used it as a Call to Worship in church on their one year anniversary. Even though it was written in celebration of a wedding, it really spoke to me as a brain injury survivor. Here it is:
May you store up patience, for life is not always kind, and you need to persevere. Remember that regret is not the last word.
Despite life’s disregard, the last word is this: One day every cup will overflow.
May you store up affection, for sometimes the heart grows cols, and you need to persevere. Remember that bitterness is not the last word.
Despite every cold-hearted season, the last word is this: One day the sun’s warm embrace will thaw every brittle hand.
May you store up mercy, for life is not always gentle, and you need to persevere. Remember that enmity is not the last word.
Despite life’s brutal stain, the last word is this: One day pardon will trump vengeance.
May you store up forgiveness, for life is not always charitable. Remember that judgment is not the last word.
Despite all cruel reproach, the last word is this: One day grace will have its way.
May you store up hope, for life is not always buoyant, and you need to persevere. Remember that despair is not the last word.
Despite all dismay, the last word is this: One day the meek will inherit the earth.
May you store up faith, for life is not always devout, and you need to persevere. Remember that infidelity is not the last word.
Despite life’s treacherous grip, the last word is this: One day creation itself will shed its decay.
May you store up praise, for life is not always jubilant, and you need to persevere. Remember that lament shall not have the last word.
Despite every mother’s grief, every father’s sorrow, the last word is this: One day those who sow in tears will reap with shouts of joy.
Sometimes I need a reminder that “one day creation itself will shed its decay and one day grace will have it’s way.” In small ways, I’ve seen this happen. Sometimes there are long periods when I dwell on my challenges and it’s hard to see joy in my life. Then I read something like the above litany and I’m reminded that “grace will have it’s way.” Not just tomorrow but even now in the midst of my challenges.
What comes to your mind after reading this litany? Do you see the hand of God in your life? See above right for commenting instructions or contact me directly at email@example.com
Tom Swift is a minister here in Asheville who contacted ALS when he was in his early 50’s. He now lives in a nursing home because his condition deteriorated to the point that he needed more help. It really is a horrible disease. It has affected his body so he can no longer speak or use his muscles. He writes a column for our local paper about living with ALS. I visited him several times a few years ago and he is an amazing man. Although our situations are very different and he is going to die from his disease, I learned much about how to survive as traumatic brain injury survivor from him.
I invite you to read his latest column: http://www.citizen-times.com/article/20110703/OPINION04/307030011/If-you-don-t-mind-think-ll-go-crazy-now?odyssey=modnewswelltextOpinions. It was published this past Sunday and I really could relate to it. He describes an incident when he was trying to communicate to several heath care professionals that he needed his BiPaP mask, which he wears at night to help him breath, adjusted. They kept asking him questions but they were misunderstanding his nodding motions. It really was quite comical and I hope you’ll read his article.
It got me thinking about how traumatic brain injury survivors are often misunderstood. I think I was more senstive to it in the very beginning and I often took it personaly and got angry inside. Now I’m used to it and I just accept it as a fact of life. This is one reason it is so important to talk with other survivors because they really understand all the challenges.
Just this past week I had an experience that happens all the time. You would think I would be used to it by now but this type of experience always make me angry although not like it used to. Now it’s mostly just an annoynance. I had a meeting that I’ve had for about a year in the same place. I lost my directions and I swallowed my pride and called a couple folks for directions. Even with the directions I still missed the right street and had to turn around and come back! When I got to the meeting, I had to remind myself that no one knew that I got confused on route and I tried to simply forget about it and concentrate on the meeting.
What sort of challenges do you have and do they make you angry? Did your injury happen in the past few years or are you like me, a more long term survivor? See the above right for commenting instruction or contact me directly at firstname.lastname@example.org