In July 2009, I celebrated my 60th birthday surrounded by our adult sons and their wives and playing on the floor with my four wonderful grandchildren. My wife and I will celebrate our 40th anniversary this year.
I say that to assure you that, despite TBI, my life has been very fulfilling. By sharing my story I hope to give others the confidence and inspiration to build their lives based on whatever realities they may face.
My story began on a rainy day in 1964 when the car I was riding in was broadsided by a bus in downtown Detroit. My head was caved in; my eyeglasses forced into my eyes. Rushed to a busy hospital, emergency surgery saved my life, but I lay in a coma for 17 days. I regained consciousness without the slightest recollection of what had happened to me. As soon as I could eat, void, and walk, I was discharged from the hospital and sent home.
My family and I believed we had been granted a miracle. The ordeal was over. I was fine. Although I couldn’t do everything I could do before the accident, we were sure that was temporary.
After several months of additional recovery at home, I returned to school. (See? Nothing but progress!)
Then one night I woke up on the floor with a dislocated shoulder. How had that happened? When it happened a second time we began to figure out that I was having seizures. Strange as it sounds to me now, we did nothing about them. They just became a fact of my life: I had seizures.
Five years later, I married a wonderful lady who had no inkling of the journey we would travel together.
Over the next 40 years she would learn to deal with nocturnal grand mal seizures, hundreds of shoulder dislocations (“I don’t care if you don’t want to pull on it, just pull!”), urinary tract scarring caused by an improperly sized catheter; what to do when I awoke from a seizure with a ruptured lumbar disc; how to understand slurred speech, and how to be supportive through innumerable vision problems, as well as chronic sinus issues.
Although pain was a constant feature of our lives, I had learned to live with it. I went to sleep on ice. When the ice melted, I would awaken and start the next day. My wife not only had to endure my struggles, she had to put up with my obnoxious optimism. After all, I had been given a second chance at life. Whatever inconveniences I had to accommodate, they were a small price to pay for having cheated death. I was convinced I was living life at its fullest.
It was many years before three experiences finally changed my perspective:
Getting into a cab in Tokyo, I rested my arm along the top of the seat back and my right shoulder dislocated. I jumped and dislocated my left shoulder. Screaming in pain, I yelled to the cabby to stop, got out of the car and draped myself over the hood to allow one, then the other, shoulder to slip back into place. Because I’d already had two shoulder surgeries—only to seize and pull them out of place again—I’d decided “to hell with it!” I’d live with shoulder dislocations.
The Tokyo cab ride changed my mind. Arriving back in the U.S., I proclaimed my wife to be correct and asked her to make an appointment with a shoulder doctor.
Getting my shoulders fixed did not alleviate the pain in them, however. In fact, I was in constant pain in my shoulders, hips, back—just about everywhere. But again, my attitude was, I’d been given a second chance at life; what was a little pain? Increasing my pain medication was not an acceptable option.
After all, it was my pain and my choice; I was the one who had to deal with it. Then I came home from work one day to be informed that my wife had hired a gardener. She could no longer stand to watch me mow the yard in pain. I’d had no idea that it bothered her! She than asked one of the best questions of her life: “Mark, if you are this hampered by pain at 45, what will your life be like at 55? I want to be able to enjoy life with you. Would you please take responsibility to help yourself?”
It was pretty hard to argue with a wife who had been through 13 surgeries with me, pulled my shoulders back into place hundreds of times, and kept the household running during each of my recoveries. So, reluctantly I asked the family doctor to refer me a specialist who would look at my pain from a broader perspective. This doctor reviewed my history of pain, surgeries, massage, and physical therapy, and said that I did not have a shoulder problem; my shoulders hurt as a result of their attempts to compensate for pain. He then looked me in the eye to tell me that I “could probably compensate for most of my brain damage with the right level of commitment to improving myself.”
Here I was, 34 years after the accident, hearing for the first time that I had brain damage, that it was affecting the loved ones around me, and that it was my responsibility to deal with it.
But I thought I had been dealing with it!
Maybe I had been dealing with denying it.
Wow.
I started on the doctor’s plan, which included hooking me up to a Tens unit to confuse pain signals to the brain; physical therapy three days a week, which involved relearning how to use my muscles starting by crawling; massage therapy once a week; Rolfing once a week; and a visit to the doctor every two weeks to review my progress.
The second year we dropped the massage therapy and add five days a week of personal training. By the third year the tens unit was for occasional use only. Although I will spare more details here, let me say that these few years were life- changing for me. I began to get my body back.
Five years into the plan, I decided that learning to swim would be a challenging but realistic goal. Today I can jump into the pool and swim a mile. That was so satisfying, I decided to go for inline skating. Yes, I can now roller blade.
Over the next 10 years I added the disciplines of EMDR, acupuncture, Pilates, and somatic experiencing. Ten years ago, my therapists told me I was still holding my head to brace for the bus impact. Today that is no longer true. Some of these disciplines have become so essential to me that I have made a personal life-long commitment to maintaining them—because when I stop, pain levels return, their impact on other family members increases, and after all, I really want to be able to continue playing on the floor with my soon-to-be-five grandchildren.
Taking the responsibility to be the best that I can be was the best decision I ever made. It completely changed my life—and the lives of my loved ones.
As I share my story, I hear comments like:
I never knew!
What do you mean you slur your words?
I was not a very good friend for not helping!
You should have told me!
You much not have been hurt as badly as I was. (Unfortunately, I know of no answer for that kind of comment)
What I have learned from the process is that denial, or failing to accept and take responsibility for the reality of my injuries and limitations, prolonged the suffering for myself and for those around me. The more I tried to ignore the pain and muscle my way past the disability, the more twisted and wracked with pain my body became.
Ironically, the day I surrendered and finally accepted responsibility for my actual physical condition NOW, which is to say the day I finally accepted my “new normal,” is the day I began to work my way to freedom. That freedom has not been just for me, but for my loved ones, as well. Today we are enjoying a lifestyle far richer and more satisfying than the one we lived 15 years ago. That is a realistic hope I hold out for everyone.
I have shared my story in a book Realistic Hope: Aspirations for Survivors of Traumatic Brain Injury. I have built a website for others to share their story.
