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by Greg Goldberg
Autobiographies serve a purpose, and this one’s purpose has a goal. The goal is to share with you how my traumatic brain injury now twenty years old, has affected my life, past and present, and to hopefully allow me to share my inner emotions with you. Thus you, the caretaker or the survivor of such a life changing injury can share it with others, or share it with your own feelings at this time of change and uncertainty.
I can’t of course, literally take you inside my healing brain, but my objectives of capturing emotion and atmosphere of myself, a brain injury survivor, comes directly from my heart. I hope it helps with healing.
I can’t believe that it has been over 20 years since the accident happened. So much has changed and the places I have been to both cognitively and physically since that time would never have been visited if the accident had not happened.
Things Were Not Supposed to Be This Way
I distinctly remember being on a lonely patio of the house I was living in with my now ex-wife. It felt like the world had left me behind. There I sat, in physical pain, alone with not a soul around. Usually at that time of the day, in regular circumstances, I would be at work teaching kids and living my “dream come true life”. But not here and not on this day. I was alone. My wife had left me. I had lost my job because of my present situation. I was involved in a very serious legal battle against the truck company that hit me and currently using all my sick days from work until I was put on full-time disability, which is exactly what the lawyer wanted. You see that would increase the value of my settlement and thus increase the value of his share of the settlement for the lawyer’s benefit. With all considered, my lawyer at the time was a wonderful man who treated me with lots of respect and had an incredible reputation of being one of the best lawyers for brain injury in the country. He had a reputation to uphold. I was lucky and fortunate to have him representing me. But still, I sat on a small backyard balcony feeding birds with the side of my body that could move without discomfort, and worrying about my future.
Things were not supposed to be this way. I had everything. A beautiful wife, fantastic career and a life full of promise and great things to come. One of my biggest dreams was to have a daughter, but unfortunately that never came to be. Of course, we tried to have kids before the accident happened but the timing just wasn’t meant to be and our bodies did not comply biologically with our parental wishes. Now, all this time later, I do realize that it would have been extremely difficult to have been a father as a brain injury survivor due to my inability to lead a normal life again. Especially one hampered by all the limitations that were now present in my life. Not to mention that my temper, along with my sense of fatigue and inability to retain information were the real enemies. I would not have been a good father at all. My values were not at the right place and my teaching strategies as well as my sense of patience were well off the charts of a healthy person. The one thing that saved me from feeling so terrible about not having the ability to be a father was that I have always made sure that kids have been a part of my life. Luckily my healthy brother and his beautiful wife have had three healthy kids that have all done quite well as productive members of society, have great social lives and are all simply wonderful individuals that I’m blessed to be related to. Of course, time does travel quickly and they have grown to new heights in career and relationships. I miss them as kids but will always be there as an uncle to provide inspiration and advice to them if needed. My ex-wife was certainly not game for kids when we met. Her career and individual accomplishments (one being a great wife) were too important for her to sacrifice and she didn’t. When you are presented with a beautiful gift that will enrich your life and you don’t share all the same desires that is OK. Together we made a beautiful life for ourselves understanding each other’s needs and wishes and were always there to support each other. I am glad that the possibility of kids was not even an issue because it would have possibly sacrificed the incredible amount of love that we had for and always will have for each other.
Life Is Fragile
Living with a brain injury makes you really dive deep into almost any situation that you are experiencing. Very aware that life is so fragile, you have this need to look at your present life in incredible detail and almost analyze every move. Much more than you ever did before when you thought that this could never happen to you. By examining your life stages as close as a surgeon operating on a precious organ, it gives insight to how you as a person are thinking and exactly why you have taken the strides you have to achieve something. Your curiosity about yourself and how you function is much more sensitive, I believe because you constantly are pondering how your brain is working. It is the organ that makes you who you are and you seem to want to understand its workings just a little more. For something that has had this effect on your entire life, both present and future, your most important organ is owed immense respect.
Presently, I miss things terribly. I don’t have the same physical ability to resume what was a healthy and enjoyable athletic career. Cognitively, things have resumed after all of this time to being close to normal. I think that is because of the tremendous effort I put in with years of rehabilitation, from physical to social to cognitive and speaking. I had a terrible case of aphasia[i] that I was so determined to get over. And with hard work, I did.
Giving Back Is Important To Me
I grew up Jewish and did all the things required of me that my father requested. Going to Hebrew school and having a Bar Mitzvah were his wishes and I proudly accomplished them. But ever since then, I have never really been into religion and just concentrated on being a healthy and creative nice person who gives back. Giving back since the injury has been so important to me because so many people helped me along my long journey of recovery, it was only right, after healing as much as I must help others that are going through the same thing I did years ago. Thus, I was quite eager, when I had the opportunity to work with brain injury survivors. Helping them socially, cognitively, and learning to get back on their feet, and to hopefully one day live independently has been something that I have committed myself to for several years now. For me, this is a way of giving back, in a spiritual sort of way. A part of me feels like it has accomplished something worthwhile when I see other survivors smile or simply accomplish a feat that they never thought they could do after sustaining their injury. To make myself smile I tell my wife that I am ‘just a gate keeper to happiness.” Spiritually this sustains me with a feeling of giving a thank-you to whomever or whatever gave me the strength and spirit to continue living the life that I love so much.
I Give My Day Shape And Purpose
Now, living this life that I love comes with much more worry than I had ever had before the injury. I am very aware just how fragile life is and how it can be taken from you at any time. Today, and all days, I try to learn something new, give back in some way, and do a physical and spiritual activity. This gives my day shape and purpose. Prior to having a brain injury, I was most content to just go through the motions of every day and not really appreciate the simple and beautiful things that every day has to offer. I was always extroverted, social and a broad thinker but today I make sure that my days are full of potential to better myself as a person. Again, with life being so fragile, it is important to make the most of what you have when you have it. Just look around every day at your environment, other people, your loved ones and so much more. Flowers really do smell fantastic. It’s ok to stop and smell the roses, even if you never have before. The time taken to pause will be well rewarded. It should not have taken a near death experience to make me realize this. For any time wasted prior to the accident, enjoying beautiful things, I am sorry for missing.
Optimism, Attitude & Faith
Regardless of how much help that you acquire, how good those services are, the effort you put into your physical workouts and cognitive therapy, there is one thing and one thing only that will get you through such a horrible injury. And that is attitude. Yes, your attitude is such an important tool that you must use. Without optimism and a positive attitude, you will never even get past the early stages of your recovery. The first couple of years are so taxing on you emotionally that you need something, anything even remotely stable to lean against when your fatigue sets in and you want to lie down and cry.
One must not forget about faith. As well as a good attitude, a faith in something, whatever that may be, religious or not, will help guide you through periods of uncertainty, which there will be plenty. It may be the confidence you have in your doctors, therapists, friends or rehab team that will pull you through. The most important thing to realize is that regardless you can’t fight this battle alone.
Build Your Own Village
“It takes a village”? Well, there is no better proverb to use than this. The brain injury survivor must realize and accept that they need help from a variety of individuals. Once that important concept is learnt, the journey will be much easier if you are open to having others hold your hand. In your community, there is help available. Get help to find it or find it yourself. It will be the best treasure hunt you ever went on.
You must also find the key to your own ‘new village’ and enter it with an open mind and one that is full of patience and optimism. The result will be the rebuilding of a positive attitude. Without a positive attitude, you don’t even stand a chance in the resuming of you, the person who you loved before the accident. I specifically remember one of my many doctors telling me… ‘Greg, you are not going to get better tomorrow, you are not going to get better next week or next month. This injury is going to takes years to get back parts of your old self. There will be many new limitations on your life but you must learn to first heal to the best of your ability and then be proud of who you are and what you have accomplished.’
There Is A Choice To Make And It’s Simple
One exercise that all brain injury survivors should consider taking up is the writing of a journal on a daily or weekly basis. It certainly improved my attitude as I could vent with a pen and paper, not be blamed for anything and really express how I felt in the moment. When I went back and read and saw the progress I had made from that point onward, I was proud that I didn’t let this one small obstacle thwart my desire to get to the finish line.
Again, to state another one of my doctor’s lines (very memorable and therapeutic I may add), she said, “Stay angry and negative and be a miserable grouch for the rest of your life or accept what has happened to you and move on. The choice is simple…one or the other.”
I took the second option.
Another important, yet hard to understand, stage in recovering from brain injury is to realize that one must learn to first accept his limitations before he can succeed much higher than he ever thought he could go.
We all have limitations but the brain injury survivor has new ones. It could be from physical exertion to not staying up past a certain hour to being too cognitively active to simply not being allowed to have any alcohol or use of things that were pleasurable pre-brain injury. If we exceed these limitations we will certainly pay the price and I did.
Fatigue Could Lead To Regretful Actions
Personally, I suffered from terrible fatigue. If I did too much or didn’t get my rest (naps were so important) then I would experience a real buzzy sensation throughout my entire body, not be able to think clearly and become agitated quite easily. When I was tired, I got angry very quickly and lashed out sometimes, even violently, to individuals I loved and cared about. This even happened with innocent bystanders who I didn’t know at all. When fatigued, I lost the ability to think rationally and absorb the information given to me to act in a proper manner. I had a very short fuse.
This short fuse, when lit and not put out in time would explode and be the catalyst to many horrible things I said or actions that I took towards others I had a very difficult time taking those words or actions back. For many of them now, years and years later, I still regret my actions.
However, as time moved forward and I began to heal, I understood the importance of living with and not exceeding my limitations whatever they may be. Once you accept and learn how to not exceed this personal demon, life can become much more enjoyable. You will see yourself succeeding in things that you never felt possible because you felt that this particular limitation was holding you back. But by playing by the new rules given to you, the brain injury survivor, this limitation actually becomes a valuable aid and tool that will get you through many difficult situations.
Enjoy And Challenge The New You
The most precious thing that brain injury survivors are afraid to lose is their identity. Who they were and how people relate to them will certainly change. I believe that much changed within me both during and after my recovery. I looked at the world in a much more simplistic way and learnt to appreciate everything because I knew that life is extremely fragile and could take all that you have at any time. Of course, your identity will change because of you lacking the abilities that you had both cognitively and physically and because of your new set of limitations that you cannot exceed thus negating negative consequences.
But here is a chance to enjoy and challenge the new you. For your friends and family to know and love the new you. If you strive to return to the person you used to be, albeit with a few dents, they will be hardly noticeable when those who love you see you for who you are now and what you have become, a brain injury survivor.
Eventually, and I mean eventually, healing from a serious TBI takes time. You will plateau. Get to the level where you are stable and probably won’t improve too much beyond that. But this is your opportunity to stay on the peak of the mountain that you have worked so hard to get to. If you want to stay there and live the best life that you can as a brain injury survivor that means you are going to have to work at it. Don’t let a day go by without doing something to improve your condition. Be it something physical, cognitive or spiritual, anything that you can do to stimulate the brain and get used to the new limitations that you set for yourself, things will start to make sense again. I always remember my doctors telling me, “Greg, surviving and thriving after a brain injury after is a life time commitment. One day at a time.
Smiles and well wishes-Greg Goldberg
[i] Aphasia is a communication disorder resulting from damage to the parts of the brain that contain language
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