We love those uplifting, feel good stories about survivors who have battled adversity to create a life following brain injury; who have proven doctors and doubters wrong by raising themselves from the ashes.
These stories are good for the human spirit and good for the soul; handing us doses of confidence and inspiration by focusing on the best of our human qualities; demonstrating, for all of us, the possibilities in life.
However, there are TBI Survivors who find it difficult to relate to these feel good stories. These survivors are the “silent ones”, who we don’t often hear about because they don’t make movies or write books or articles about these brain injured individuals who struggle to find a way out of the rut they are in; who can’t get themselves to make meaningful progress; who flounder and feel unsuccessful despite having the best intentions.
The battle back after brain injury is long, hard and frustrating. It takes an enormous amount of mental strength and fortitude, not only to bring yourself to the fight, but to stay in the battle day after day. There are many who desperately want to get better; who want to keep fighting after brain injury, but they get bogged down, unable to find the will to make it happen day after day.
What Do We Mean by Will?
The Free Dictionary defines Will as, “The mental faculty by which one deliberately chooses or decides upon a course of action.”
The will to positively affect our lives is one of those things that, as human beings, we all like to think we should have. And it’s not only us. Often, others expect us to be able to exercise our will with ease. They say, “Just make up your mind and do it,” or “Where there’s a will, there’s a way.”
There is no denying there can be value in these oversimplified sayings…for some people. However, in our messy lives, making “choices” and exercising our will is not always clear cut, especially when brain injury is involved.
There are those among us who are doing their best but find it hard to keep up the fight, who face hardship daily, and who want to shake their head and scream when people tell them to “Just do it”, as if all we have to do is flip a switch and we can find the will .
As Yoda would say, “Easy, it is not.”
Why/Why Not– Me?
My college roommate would ask me how I was able to do what I did after my brain injury: relearn how to walk and talk, go back to college, graduate and work, while he was unable to get off drugs. I didn’t have an answer. I wish I had some answers for him or even some hints because he might still be alive.
Two of my roommates died too young. One kicked drugs. One didn’t. Both had the desire and the want to get their lives straight, but only one had the will to follow through and complete the task. My other roommate couldn’t find the will, and you know what? It wasn’t his fault. He didn’t know where to look.
Where Do I Buy Some Will?
What makes it super complicated for us who have experienced a brain injury is that the ability to exercise our will can be compromised by some of the things that go hand in hand with brain injury; distractedness, short span of attention, depression, physical ailments, judgement issues, motivation, etc., and the situation can be made even tougher by financial or familial difficulty.
Finding the will to persevere can be elusive, but maybe we can find ways.
Understanding Your Will
Just wanting something doesn’t guarantee we have the will to get it. If we try to understand that having the want is different from having the will, perhaps that will help us because then we can develop a better understanding of what it takes to actually find the will.
In order to begin to find the will we have to discover what drives us and what motivates us to accomplish things, and it is important to understand that this is a process. Why some of us are born with a personality that keeps us driving forward, always in action, is a mystery to me, and, for many of us, our will is not going to magically appear to lead us to the promised land. Our will may need to be manufactured and nurtured.
Manufacturing and maintaining our will starts with having the ability to look forward and seeing that the future can be better than the present. Then we must want that for ourselves so badly that the want blossoms into the will. We must see that there is some benefit that will come as a direct result of, not only, putting in the work now, but also continuing to do it day after day with little immediate reward. You almost have to relish the idea of taking baby steps and persevering with a goal in mind, and as difficult as it is, learn to accept and appreciate the exquisite slowness of your progress.
Having the will and exercising it is not glamorous or sexy: there are, most likely, no celebrations or public acclaim. This is just hard, lonely work, and in order to work that hard you have to accept and be comfortable with yourself and your situation.
The journey can be rocky. There may be times when you’ve had enough and you don’t want to do the work anymore; it can all be so overwhelming and might even seem pointless. It is enough to make you want to stop, but remember, no one has the will all the time and there might be times when need to take a break. You need to be good to yourself. You are in it for the long haul.
That is what having the will is all about.
Joanna Dalton says
A thought-provoking read Jeff, thank you.
For me the Will was never previously an issue. The fact that I didn’t know what food/music/clothes I liked after TBI was an opportunity to find out again & probably like new things.
The silver lining of the struggles with attention, memory, spatial awareness etc was the resulting empathy & desire to help others who felt lost in their new selves.
I struggled through 15 years of work with various medical results until a seizure got me one day. The MRI I finally got showed the actual extent of the damage to my brain; DAI, shearing & white and grey matter damage. My doctor told me I should not work any longer.
Since then I’ve set up a FB group, appeared on local radio & TV & spoken at a school on TBI prevention.
Then I was assessed. And told I’m unlikely to get any more money – there is a nice chart used by insurance companies here in Switzerland which tells you the amount of support you are due. For brain injuries, 35% disabled. For losing a leg 50%.
That’s why my will has currently abandoned me. I hope it returns.
Nicely said. My story has many twists and turns but one thing I find difficult it to blend in with everyone and hold my job as a science teacher. One of my students also suffered from a TBI and he understood. With the TBI I think differently than others. Why? Parts of my brain normally not used were called upon to help me function and think “normal.” At least to excel in what I liked to do best and at the time it was getting my college education and competing monthly in martial art competition with katas. One day I told a co-worker and he was wondering why I got distracted so easily as I taught Earth Science. I have never told an employer, but I now am struggling to hold a teaching job longer than a year and I need to finalized my credential. I should have gone into Special Education as I instantly can identify those students with an IEP in my classes.
I’m rambling, but I really do not know if there is some protection or security of employment because of my TBI. I have so much time and money invested in my education. I have a Master of Education degree from 2014, but the credential still is incomplete. It is difficult to not feel like a failure because no one will keep me employed long enough.
Jeremiah Grant says
keep pushing man. i am only 33 with a BA in Psych and 50k in student debt. i was mugged in florida while on vacation and now have plates and screws in my head…alone with the inability to taste or smell because my olfactory bulbs were detached while beaten….point is…I’m working at Walmart and still pushing myself and I know you can too- You have already accomplished so much- keep going with me and “us” <3
Dennis Ray Hageman says
A wonderful article! I am fortunate to somehow have had a will to do my best and be my best ingrained in me from an early age. That has definitely helped me over the last, almost, nine years. My wife always being by my side and pushing me to be my best has been my biggest driving force.. As we all know, our circle of friends definitely changes with a TBI. I have learned, all of life is therapy in one way or another, noticeable or not to anyone else or myself at the time. I always kid about, ‘If I had patients, I would be a doctor’, even though it is spelled differently. Patience, deep breath and slow and steady wins the race. Thank yo u for putting this in print. I am going to borrow at some point if that is alright.. Have a marvelous Monday and rest of the week! Dennis Ray Hageman
Thank you for your articles. They are inspiring, esp this one on finding the will to keep fighting. Although I am mostly optimistic, there are times when I feel hopeless. Your writings remind me to keep moving forward.
Leslie Relle says
Thanks for sharing your story. I am one of those survivors who never published a book, made a movie,or gained a lot of notoriety from having overcome the trauma of life with a brain injury. I am very lucky to have survived the accident in 1970 that could have left me for dead. I was not quite 13 years old then. It has been over 38 years, But life has been a struggle. It is very difficult for me to find a support group with other women with TBI. Doctors do not understand. We have issues that men can not help with.
Great read! Spot on.
I have a nephew that is trying to find his will after a TBI. Please write to inform us how we keep in in the fight.
Would love to hear your thoughts
My son is 10 years post. He ended up with sever diffused axonal shearing after being hit on his motorcycle. He has several physical deficits but it’s the mental deficits that are so difficult. Paranoia, religious and sexual fixations, bizarre thoughts and beliefs. At certain times some of these are not as bad as others and all of a sudden everything is horrible and couldn’t be much worse. He will likely never work, marry or have children and for this I am deeply sad. So many others are far worse as in being in a vegetable state and I’m so damn happy my son progressed so much further but then I read about so many others that went on to college, got married or at least had a significant other and my heart bleeds for my son.
If there’s one thing I was consistently told after my brain injury (stroke) is that positive attitude is everything. People conflate a positive attitude with will. When I show a good attitude or will, I am given much more positive feedback. If I dare to have an off day; be tired; get down about my situation, well, suddenly I have the sense that it’s my fault I’m not improving,, since I failed to keep that positive attitude. Yes the attitude and will are important tools, but don’t diminish my need to mourn, to rest, and to figure out my next steps.
Jeff Sebell says
Martha, You bring up some very good points. We seem to have reached a point where people now think you can do anything if you put your mind to it. Probably because it makes them feel uncomfortable if you’re not, they always want you to be positive and to be moving forward, and they are unable to accept the fact that in order to be positive you must go through a full series of emotions. A lot of times people aren’t ready to deal with the reality and the magnitude of what you have to deal with just to be able to get through every day. Best, Jeff
💗 this is what I needed to ‘hear’, to know it IS part of the process. I believe that, for the most part, I have a very positive attitude and ‘will’. I do not have much of a social network so my biggest critic is me.
Thank you for expressing and putting into words; sometimes we just need “to mourn, to rest, and figure out (my) next steps”.
Randy - West Texas TBI Survivor says
Thank you so much! It is quite hard sometimes! My wife and I went to see our son and his family in Florida recently (March 2019). Before the trip ended; my son and I got “cross-ways” because of my TBI situation. I became angry and frustrated over traveling circumstances.
Unfortunately, I will lose my memory of this trip within 10 days.
I sincerely appreciate the “Positive Comments” relayed by you!
West Texas TBI Survivor
March 16, 2019