That’s Just the Way
My Traumatic Brain Injury is constantly (even 24 years later) at the back of my mind, but occasionally it creeps to the front, and I become distressed because it affects all that I do.
When I look in the mirror to shave I am reminded because my left eye, more often than not, is floating around. That’
s the reason for never looking directly into the camera.
When I open my mouth to speak I am reminded because the sound is so nasally, the words slurred, if I can find the correct one; I sound as if I were drunk.
And when I walk even a short distance I am reminded because of being unable to bend naturally, my knee, or to stop my hip from dropping, or to uncurl the toes on my right foot, or to swing my arms in cadence with my steps because my feet do not and cannot move at a regular pace.
I am reminded when my right arm sticks out like a bent flag. And for 24 years, my right arm has tingled as if it were asleep. In other words, I am constantly reminded. The TBI will not leave me be. It never heals or goes away.
When my therapies began in late September of 1988 the therapists, doctors, family and friends marveled at my progress. I was always eager for my sessions to begin and sad when they ended. I though, was never happy with the small gains I was making. I had the love of many ie; family and friends so I kept striving.
My progress came to an abrupt halt while staying, temporarily, in a nursing home when I received a phone call from the wife of 16 years and she said, “Steve, I saw an attorney today.” The gains have been minimal since that time, though, I do continue to plow ahead. The harvest of great gains had been reaped long ago. There are still seeds of hope that spring eternal and it is a good thing because without at least a little progress I would probably just kill myself, teasing!
Will the remainder of 2012 be more unrelenting sameness? I while away hours, writing… and cooking, and continuously cleaning, doing laundry and making meals and that is only inside the home.
My daughter also has Sunday School/church on Sundays, karate on Monday nights after school, violin/guitar lessons on Tuesday evening, Spirit Club Thursdays after school, rehearsing
cultural dances with the Cultural Society of Filipino Americans on Thursday evenings, which resulted in a performance of, Pamada IX at the, Burnsville Performing Arts Center. She has swimming on Friday evenings. I try my best with Stephanie and introduce her to as many things as possible – oh – and horseback ridinglessons
every other month on Saturdays.
In January she will begin regular meetings with Girl Scouts on Monday evenings replacing the karate. Though a current member of G S’s the scheduling conflict only permits her to attend special events with them, like tomorrow’s rake-a-thon event.
I continue striving to move forward, to reclaim normalcy. Though with my nasally sounding speech, partially dead right side and uneven gait I know that by the standards of the world, I will remain an oddity.
I no longer care if I have friends because I have learned painfully well that, when the going gets tough, friends get going! I now have only acquaintances and I think it better that way. “Friends” are always telling me that, “This guy doesn’t have arms, or legs and look at what he’s doing.” Now I am not denigrating their disability in the least when I say this: “I wish I had only lost arms or legs for there are prosthesis to alleviate that disability and more importantly a fully functioning brain to show how to use them.” Well, there is not prosthesis for the brain and the brain is the controller of the human body. How can my disability, the invisible disability (TBI) even be remotely compared to losing a limb? In effect, I have lost all limbs or at the very least, reduced movement in each. Plus, I have lost my mind, oh no, I do not mean, crazy.
The mind loss of which I’m speaking deals with improper signals sent to the nerve centers. My nerves are also disabled, or disconnected. I oft time receive such incredulous looks when I attempt walking and even my talking is hard to understand. I know that, and don’t you think I am embarrassed each time I open my mouth or take a clumsy step? I hate it when the door is held open for me or when somebody tells me to go ahead of them because then I feel their eyes upon me watching my every piteous movement.
Why don’t I care to build friendships any longer? Well for one, friendships are made during young, productive years and I am older and not very productive. I have lived through branding by so-called friends, but they have since been forgiven for they did not understand what happened to me. I have become so use to being alone that now I prefer it.
After 20 years I had reached the point where I grew tired of always being the one to initiate the introductory conversation. I now wait for others to make the first move but that rarely happens. I really do wish there were others that would call or stop by occasionally if only for my daughter’s sake. I know that Stephanie wishes there were people around.
It is clear that I am the problem, but I have tried being as natural as possible and that has not worked, in part because of things outside of my control. There are actually times when I wish I were still in the wheelchair and back at the nursing home because then people took the time to listen, of course many were in the same situation as I was.
I try to maintain a sense of respectability and happiness, but I now realize that neither would be possible to achieve without the love of my life, my angel, Stephanie.
I sometimes wonder how life can be so cruel, but it is and for everybody at some point in time. My mother told me during one of my lowest points, “Nobody gets out of this world without enduring some pain and misery, everybody hurts sometime,” oh so true mom. And that’s just the way it is.