Does Recovery Ever End? A Survivor's Story

by Gary and Elaine

We used to think recovery was a more tangible object with a beginning and an end. Our way of thinking has been changed.

GARY: Seventeen years ago I had a brain hemorrhage. It was an AVM (Artery Vein Malformation) which was removed via two brain surgeries. The physical aspect of my recovery went well, all things considered.

ELAINE: I remember receiving the "dreaded phone call" at lunchtime. My mind went blank and my body went numb. The doctors initially said there was nothing they could do for Gary--that he was on his own. These were not the words I wanted to hear. Two and a half months passed from the time of Gary's hemorrhage to his release from the hospital after his surgeries. Not only had my emotions been taxed, but so had our finances. When I left the hospital with Gary, it was finally over and things would return to normal. In essence, it was only the beginning.

GARY: After the first surgery, I was paralyzed on my left side. Following two weeks of intense physical therapy I was able to walk with a limp, using a cane. They did another angiogram and it indicated the necessity for a second surgery. I was physically OK after that one; however, later tests indicated some visual field loss. I was released from the hospital in Canada, where the surgeries took place, and we all went home. The six week stay certainly granted me life, but substantially altered it as well.

ELAINE: The neurosurgeon checked Gary's incision to make sure it was healing properly and was very pleased that the AVM had been successfully removed. Gary was physically fit as a fiddle. The doctor couldn't understand why we both weren't as optimistic as he was, and instead complained at each visit about seeing something different. Eventually he recommended that we see a neuropsychologist. This doctor was the first one to acknowledge the memory deficit Gary had received as a result of the hemorrhage and surgeries. We saw him and felt that our prayers were answered.

GARY: My wife explained how I literally got lost in our own home and was afraid to go anywhere for fear of losing my way. Also how I would simply forget every thought from one moment to the next. The combination of home study exercise and six months of sessions, one to two per week, helped immensely. My recovery, though, went only to a point and hit a brick wall. My wife and I grew to be masters on how to cover-up our problems. We thought life was to be the same as before--nobody told us otherwise. ELAINE: All our personal affairs were up to me now. Gary offered little support in our finances, housekeeping, or socializing. Gary didn't want to be around anyone, and our friends weren't sure what to say or do around him. I felt myself close down. Fights weren't finished as Gary would forget what we were fighting about and I simply didn't have enough energy to bring it back up and still continue on with all of the family responsibilities. All of my efforts went in to trying to minimize the mounting frustrations Gary kept experiencing on a daily basis.

GARY: A futile attempt at college, frequent job hopping, relocating several times, and the birth of two children occurred over the next seven years. Shortly after my second child's birth, which was two years after the first one was born, I plummeted into a deep depression with strong suicidal thoughts. I went back to the neuro-psychologist very confused and embarrassed. I thought I was cured and felt to be a failure because I just couldn't cope with life's obstacles. The visits with him lasted for about two months and another aspect of my recovery began to take place. He explained that a natural human response to a very personal loss (i.e., memory and some brain function) was the grieving process. I wasn't aware of the mental calm and cleansing this process resulted in. Consequently, I cried all the way home since I was alone in my car, and found several other opportunities afterwards to do so as well. Was my recovery now complete? No, it's just that we were able to overlook it for another ten years.

Now we find ourselves visiting with a neuropsychologist again. The memory problems seem to manifest themselves as different levels and intensities. So seventeen years later, we find ourselves reminded that head injury is an issue that has to be continuously dealt with in order to cope and achieve piece of mind.

An important aspect of recovery is to realize that families also have issues to deal with. This is the first time my wife has ever been in on the sessions with the neuropsychologist as more than just an observer or one to fill in the blanks. This time her recovery can really begin too.

Each day my wife, family and I learn a little more about how to effectively live with head injury. Our recovery is a continuous evolution of change and adaptation with the ever-present tug to slip into the denial mode of expecting life to be as it used to be. However, we have found that with time, life after head injury is great!