Ten years ago I found myself in a place I thought I had left behind, and it made me think that regardless of how far
I had come, I still had a long way to go in my post-TBI travels.
Our family business, in it’s sixtieth year…the one I had been able to lean on, to gradually learn to function in with family support, with not too much asked of me…closed.
My life had seemed almost normal, protected as I had been over the previous twenty five years, and having the business close was a shock to my system. I quickly learned that my life was far from normal, and was confronted by the reality that I had, through good fortune and family support, been able to escape the full brunt of my circumstances. In fact, I realized I had been in complete denial and ignorance about my abilities and how much my family covered for me.
Sure, there were things that were problems…such as processing and remembering conversations, reading books, following instructions, and being subjected to bright lights and loud noises, but essentially, I didn’t dwell on the stuff I had problems with, and, instead, focused on the stuff I could do. That was how I got by, and I found it would work until something new came up and I would get completely flummoxed. When that would happen, I would question myself, and then get angry and depressed.
Generally, though, I pushed forward as though I was oblivious to what was going on. I kept on trudging forward, stooped over, as if continually walking into hurricane force winds. This was the only way I knew how to survive.
But things changed when our family business closed. I was almost 50 years old and I no longer had that protection. My brain injury was, in many ways, ancient history, but its effects were as present as that day I walked out of the hospital.
The big lesson for me was that I was going to have to accept my disability in order to move forward; because that was what I was, Disabled. Accepting that was hard. I hated being referred to as “disabled”, or referring to myself that way; it just didn’t seem human. I had spent 30 years trying not to be disabled; even thinking that sometimes I was doing a decent job at it.
This was something I couldn’t escape from. Although “disabled” was a label I didn’t like at all, I was going to have to learn how to live with it and start over as a disabled man.
Even as I tried to accept this new status, there were others who didn’t understand; for they looked at me and couldn’t see. I thought about the times I looked at myself and was unable to see or understand, and thought, “How can I blame them?” How can I expect them to accept the fact that I was disabled when I am having difficulty with it?
We experience a great upheaval in our life when realities and definitions change; especially when these changes are thrust upon us, and don’t occur as a result something we planned or sought. Adapting and evolving to life changes, whatever they may be, are difficult but necessary skills, and, unfortunately, there is no way to adequately prepare ourselves in anticipation of these occurrences; we’re all just thrown into the fire.
So, into the “disability fire” I went, forced to deal, not only with my new reality. but also with any preconceptions I had concerning the word disabled. This new reality, on its own, is hard enough, but the preconceptions, or the way I reacted to what the word meant for me, were hard also.
The first thing I had to get through was that, regardless of what kind of shape I was in, being “disabled” was a blow to my pride. I had to hold my ego in check and accept the word for what it was, a label other society used.
Eventually, I saw that I couldn’t let my life be defined by a word other people used to describe how I did, or didn’t, function in society. What was most important was not the way other people referred to me, or the relationship I, personally, had with the word “disabled”, but the relationship I had with myself and how I fulfilled my role as a human being.
Calling myself disabled, or having someone else call me that, didn’t mean the vital roles I played as a father, son, brother and friend were any less important, or that I was any less valuable as a human being. Even though, at times, I could feel as invisible as my disability; and the way I defined and valued things changed, what I couldn’t do was let that impact the way I felt about myself, or let my disability affect how I valued my contributions.
In the final analysis, it didn’t really matter what anyone thought about the way I was able to function in “their” world. My sense of self was based on the knowledge of who I knew I was, and how I was able to “be” in the world when measured against my own expectations and not the expectations of others.
This is so spot on with what my daughter is currently going through. I had to ask her to move back home to the country, leaving the city behind. Thus, she had to start really admitting to those that she grew up with that she is in fact…’Disabled’- no longer that really smart girl that went to college and graduated with honors. Her ‘label’ has changed and I think as long as she was in the city among strangers it allowed her to hide. Also I think that the Neurologist didn’t really prepare either one of us for what she had in front of her.
Currently, she is learning to not label herself or allow others label’s to effect her. We are living the ‘4 Agreements’ and she is accepting that each day allows her to be, for she finds that the weather directly effects the pressure on her brain, her brain fog, dizziness, and migraines.
It is hard for her to see her friends getting married and having children, moving forward with their careers…and they still ask what have you been doing for the past 7 years? I think now that she is 30 and is finding some comfort in being honest with them and seeing them either disappear or become closer. She too has begun to blog about her feelings, challenges and dreams.
Thank you for being so inspirational.
Jeff Sebell says
Thanks for reading and responding. I hope things continue to improve.
I too, see myself in your story. I am 4 years out and hid my deficits as long as possible at work. I finally couldn’t any longer when the office was reconfigured and more light and noise made me face my challenges. The mayo clinic is working with me and pulled me from work 7 months ago. They believed I shouldn’t work and I know they are right. I am working to get DI through the government, this is where the label has entered my life and having trouble dealing with it. Especially knowing I will probably be denied. Thank you for getting it.
You are so lucky to have so a wonderful family that have supported you for so long. I personally believe we place far too much emphasis soon being able to work although I do understand the challenges associated when one partner cannot work again. My partner is nearly 15 years post stroke and is disabled. It was hard for the first two years we both worked very hard trying to get him back where he could do some of what he used to do at some level. He was a Lecturer in Philosophy of Education pre stroke. Post stroke he cannot read and write, is hemiplegic, aphasic and has cognitive changes. Being in education and health I could help him to a degree but originally pre stroke he was far ahead of me intellectually and it was not until we had to have an independent neurological assessment two years post that we were told he would never have the capability to return to what he used to do and were told very implicitly he would be permanently disabled. That was when our goal setting etc. changed. For a long time it was a spiral of mental health issues with the loss and grief associated with the reality of the future. It was a bumpy road and still is at times. The role reversal we have is that he and the carers do the house and I work. The house work etc., shopping is his job. It is a treat now for me to go into a supermarket about once every 3 or more months.Dealing with the health system is a challenge as I have to be a continual advocate for him. Many years ago the psychological services available today were very scant. I hope you and your family are getting support from them to help you with this life transition. Remember labels can be applied to anyone. You may be disabled but you still have abilities. My partners speech continues to improve slowly and he manages an iPad 15 years on which is not bad for someone who they told me will not live very long. Try to stay positive. Some days are diamonds and some days are …..
Jeff Sebell says
Thank you for your comments, and for all the work you do for your partner. Sounds like you’ve all had a rough go of it, and have found a way to make your lived work. Good luck.
Thank you for sharing. Your partners story really resonated with me. I use to practice medicine and am no longer able to. I was a Stanford graduate. I had a very successful career and was very goal driven. Post TBI I’m “disabled” and struggling with all the associated loss (me, career, life as It used to be)….
in addition My partner is also grieving over the loss of “the old me” I guess I’m in a bit of a discovery stage and its been tougher than anything I’ve ever experienced. It’s a harsh reality to be the patient and to navigate this journey of acceptance regarding what “is” instead of what “was”
I can’t deny my disability because I live on disability insurance and SSDI. I had to leave my job because of the brain injury that resulted from neurosurgery. Sometimes I think it would be easier if my disability was visible because I wouldn’t have to explain it when I can’t follow or remember a conversation, participate in a group activity or cancel a date because my head hurts so much or I’m exhausted. I wish I didn’t have to explain TBI to family, friends, even someone I’m talking with on the phone when I have to ask them to slow down or speak more clearly. But sometimes I do if I want to interact with them.
Powerfully said. This is a keeper. Long after the scars have healed and we’re “interesting” patients with fixable problems and long after we have made “meaningful improvement” we still are coping with our invisible limp.
I recognize a lot of what you are saying. I didn’t have a family business, but my own company (1 person) and I needed to redefine it, which I did after 2 years. My disability is part of my ”product” now. I have Experience. Therefore I function as a patient-member in the researchcommittee of the rehabcenter where I was 2 years ago. I comment on research design, and the communication towards patients. I am an equal member as the doctors have their knowledge but they never had first hand experience themselves. It provides me with the satisfaction that I can take my CVA and make it into something useful, so that it didn’t happen to me in vain.
And yes, it is a journey with ups and downs. And the contacts I have with fellow survivors help me to continue on my journey. Thank you very much for this post and greetings from The Netherlands!
I believe that if you train your brain everyday..every second , no matter what the “shortcoming” is, the brain WILL always fill it up with parallel system within it. Scientists say that we use just 4% of our brain… what can be done with remaining 96%….? limitless…!
Sarah Hillmert-Gallitz, MS says
I had difficulties too accepting the title disabled. However, I tend to think of myself as challenged with challenges that are more than the average person but at least I can identify with others because they have challenges too. When I recently was in school for my master’s in Counseling my disability status afforded me accommodations. I would not have made it to graduation without those accommodations and so I accept the title of being disabled willingly and proudly because I know that there are so many other people out there with disabilities who very capable in many ways and who meet their challenges head on.