Ken Collins, a regular reader / commenter who’s got an amazing TBI recovery story posted this comment the other day:
Ten years may seem a like a long time for most people, but for those of us who live with a brain injury everyday- life really only starts being less of a struggle after the first ten years. For most of us, life will never be the same and for some the struggle will never end.
It took me 13 years before I could start to smell again, and because after the first year of not smelling I forgot what things smelled like – now I have to relearn all over again. It took me 18 years before the numbness on the left side of my body went away, however the limp is still there when I get tired or have a long day.
It took 20 years for me not to have to look on the calendar or my day planner to know what I was going to do that day. Now, at night when I sleep I can dream again. It took me 25 years before this was possible.
Recovering from a brain injury is a slow process – it took me decades before I could regain my self-confidence and feel comfortable in my own skin again. Recovering from a brain injury begins by finding hope to get better and finding meaning and purpose to motivate you to get on with your life. There are many peaks and valleys along the way to deal with during this process. In the early stages of my recovery process it was like taking one step forward and two steps backward for many years, but these issues lessen as time goes by and you start to regain your self-confidence and improve your self-esteem.
Along the way there were many obstacles to overcome – some of these obstacles were placed there by me, as I tried to get my life back on track. If you are like me – we try and fail many times along this journey – some of the first casualties are our friends and family.Without the support of family and friends the journey back will take longer than it needs to. Taking care of yourself doesn’t mean doing what you used to do – but rather finding new ways to adapt to situations that confront us after our brain injury.
Taking care of ourselves, setting up a routine and being responsible for our actions is the key to finding meaning and purpose in your life after a brain injury. Being accountable for the decisions we make is very important to the recovery process and our well being – giving up isn’t an option.
Along this journey back to what people call “reality” – it is very important to be responsible for our actions and hold others accountable for theirs as well. This is especially true when it comes to service providers, the state and federal government during these times of budget cut backs and program uncertainty. Getting involved with community organizing, public service and political action helped me to get better and I think it can help you too.
It took me many years to regain old skills and learn new ones after my brain injury in 1976. Being motivated to learn new skills made the road to recovery smoother and less rocky – this wasn’t easy! Having the ability and discipline to get up and go to work every day helped me feel productive and worthwhile. Even though there wasn’t a paycheck at the end of the day, I still felt good because I was doing something productive instead of setting around hoping things would get better.
In the early years of my recovery, I made decisions that weren’t in my best interest. I didn’t know any better and hope the knowledge this experience over the last 35 years will provide you insights and ideas to make your life easier and more fulfilling.
Living with a brain injury can be a burden on us and the ones we love. Our family and friends want to help us get back to our “old selves” – but they don’t know how. I hope this information will offer you examples of what I did – so that your journey will be less difficult than mine was.
This is an excellent reminder about the realities of TBI / concussion recovery. (I’m reluctant to use the term “concussion”, because not all concussions result in lasting brain injuries, but enough people have problems in the long haul, that it’s important to include them.)
When your brain is injured, so many things are involved. It’s not just the wiring in your brain… it’s your entire system’s function. Your nervous system. Your senses. Your coordination and sense of balance. Your sense of self. You can have issues with light and noise sensitivity, as well as risk assessment and judgment problems — which can make your balance and coordination issues downright deadly. You can become extremely tired… all of the time.
Your social world can get messed up, as you find out who your real friends are, and/or your impatient, under-educated family gets fed up with your “faking it to get attention”. You can also see your social life dissolve because you can’t keep up with the pace of the rest of the world.
You’re so tired… why are you so tired all the time?
The mainstream, regular world is not a friendly place for those of us with TBI issues. If your difficulties aren’t obvious to everyone around you, it can be a long, lonely slog to some semblance of normalcy. And there are many, many difficulties and challenges along the way. Many baby-steps forward… followed by long slides back… and then it starts all over again.
But it’s worth it. I have said that I’m feeling more like “myself” than I have in a long, long time. Some days I wonder if that’s just because I’ve forgotten what the old me was like. That’s entirely possible. The thing that I look for is a Sense-Of-Self that tells me without words that “I am me” and I am comfortable in my own skin. It’s a level of comfort that reassures me that I can say, do, or experience something and be reasonably certain that I recognize the person who’s having the reaction to the situation that results from those words, deeds, or experiences.
It’s the times when I don’t recognize the patterns of reaction… the sense of who I am… the specific combination of internal responses… that I feel so separate — remotely separated — from my life and my identity.
I’ve been hoping that I could just get back to a place where it’s constant, but that may be an unrealistic expectation. This feeling of being comfortable in my own skin comes and goes. It sometimes crops up at the most unexpected times — and then it brings tears to my eyes. I don’t have to WORK at it. I can just be. Other times, when I fully expect to feel secure and confident and comfortable, that sense of ME is nowhere to be found.
And I am a stranger in a strange place all over again.
This whole TBI recovery business takes a long time. And if you’re like me and you’ve had a lifetime of TBIs to contend with over the years, things can get pretty convoluted. I’ve counted 10 consciousness-altering impacts to my head, as well as rotational and acceleration/deceleration scenarios, and those are only the ones I specifically remember. There were probably many, many more. But I can’t remember.
And the recovery I’m experiencing is a lot like the injuries that necessitated it — it’s varied, has ups and downs, peaks and valleys, and it’s pretty consuming. If I weren’t so hyper-focused on my recovery, I’m not sure I’d be making much headway, it’s that much work.
But I am focused. And I am determined. TBI stole my peace and my future from me, when I was a little kid, a teen, and an adult. It’s been a regular problem with me — a person who everyone (including myself) expected to go far. And it has screwed me up enough. It’s caused enough pain and suffering for my family, it’s robbed me of enough friends, and it’s made my life difficult enough.
So, yes, TBI recovery does take time. It’s not a straight line trajectory, and it’s not predictable. Even when I think I’m doing so much better… all of a sudden, I’m not. Or, maybe I am, but I just can’t detect it. What-ever. Bottom line is, despite what people on TED Talks tell us, getting over concussion in the space of a couple years isn’t always the way things turn out. For some of us, it takes a long, long time.
And those “some” who struggle most — I’d bet good money — were once top achievers who got thrown by brain injury, and struggle the most, precisely because we were once at the top of our games and accustomed to peak performing on a regular basis. But we can’t anymore. We’re not OurSelves anymore.
Crushing.
The good news is, if we keep on and we keep at it, we can rebuild our lives in ways we never dreamed possible. We can recover beyond where anyone thought we could. And we can achieve amazing things. Especially if we put the focus on others, and we dedicate our lives to the service of something greater than ourselves, we can truly rise. And others can benefit at the same time.
It’s a process. It takes time. It’s worth it.
Nine words that mean everything to me. I hope it does for you, as well.
Onward…!
Broken Brain - Brilliant Mind 
WOW – THANK YOU AGAIN BROKENBRILLIANT – YOU HAVE JUST MADE MY JOURNEY EASIER AND THE WEIGHT WORTH BARING – I REALLY APPRECIATE THIS!!!
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Again, you’re most welcome. Thank you again – for all that you do for the sake of others, to lighten their load and smooth their journey.
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Listening to my wired-up neighbor last night as he discussed his day with his brother, he explained how happy and proud he was of his brother who is a four-time stroke survivor, they enjoyed their day on the golf course, survivor-brother driving the cart while wired-up brother and golf partner played the links. Two months ago, when survivor-brother and neighbor had a brief skirmish I had intervened in the event when calling 911 from my apartment next door due to the serious disruptive noises and resulting issue I saw in play from outside my window. Knowing there was a serious event occurring between two loving brothers one of whom was a previous stroke survivor, I thought there was a misperception of events occurring at the time. Indeed there was as we discovered upon arrival of emergent service personnel and subsequent transport of survivor-brother to the ER that night. (As it turns out, all of my years of working in the critical health care industry, rehabilitating a husband that was a five time stroke survivor before his own aneurism surgery prior to losing his life from an MI, then subsequently having my own brain disabling illness with brain surgery fourteen years ago, allowed me the ability to read all the social and health cues that were missed by the entertaining younger brother that night two months ago of what was happening to survivor-brother.) Police first arrived and surveyed scene next door where survivor brother had collapsed on floor, was grabbed by entertaining brother to roll on side but upon doing so survivor brother reacted in shock and fear he lashes out and hits brother I later learn, he walked out front door with younger brother following. There was a knock on my door. I go to the door to look out peephole, seeing no one I look through window. I see my neighbor yelling at another, “Are you okay?” The point I saw both men from my window, the survivor brother stares blankly at younger brother, turning from his brother he limps away from front-door patio to leave and wanders off onto front parking lot. Younger brother looks to me through window with blood on his lip, I call for police and ambulance, while younger brother comes to my door for ice. Police came and retrieved brother that wandered off. I told them he undoubtedly needed medical attention, as evidenced by his history of stroke and what had occurred that evening between two loving brothers. The report the next day from the hospital confirmed an additional stroke had occurred that night after both brothers had eaten dinner, the younger brother was, as yet, unfamiliar with signs and symptoms. The survivor brother had choked on a piece of steak, the younger brother performed the Heimlich maneuver at which point survivor brother’s doctor believes brother’s brain had been w/o oxygen due to choking which may have elicited another small stroke. After spitting up steak, brother had gone to the bathroom. It was when he came out that he collapsed on floor, that the skirmish began.
Recovery is long and arduous for differing tbi. While family members continue to be part of our lives they may not always be aware of all signs and symptoms. Community support systems are equally necessary and does fill in the blanks where love resides.
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That’s quite a story. And yes, those of us who have experience with these things are often in a better position to help than family members who may not know. It’s a hard one, because you want to educate people, but unless they see the point of it, the information doesn’t always “stick”. Maybe response to stroke/TBI should be taught in schools, in health classes, so people know from an early age how to handle things. People are living longer, so there’s more of a chance that kids will see their grandparents stroke out or have another sort of issue. Education is key — as is stepping up, as you did. So, thanks for that. I’m sure it helped the situation, which could have ended up much worse. Well done!
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