With most tragedies, so much of the devastation is found in the days and years after the initial event. Long after the visitors go home and the get well flowers die, the real recovery begins.
For so long, it seemed we lived and breathed brain injury. Our entire lives became devoted to my husband’s recovery. Even though the rest of the world had moved on, we were still struggling to find our baseline…to find our “normal.”
The first year was devoted to his cognitive abilities and getting him back to a “functioning” level. Whatever that means. So while other families were dividing their time between dance recitals and basketball practice, our family was shuttling from one therapy to another, hoping to one day get back to normal.
There was speech therapy where flash cards were held up with pictures of everyday objects and my husband’s job was to simply name the object. I remember he always got stuck on the one with the picture of a strange contraption with two wheels, a seat and peddles.
It was a bicycle.
There was occupational therapy where he was asked to get dressed on his own (which took him a while), count money (which he couldn’t do) and read early reader books (which he could do). There was physical therapy where he was asked to toss a balloon in the air back and forth with a stroke patient to test his reaction time. It was better than the stroke patient’s.
We also had to divide our time between vision therapy (because surprise, surprise, the eyes are connected to the brain), and psychiatric therapy where they were waiting for the depression to hit. But that’s an entirely different post.
Through this all, it was my sons who suffered most. Their lives had been turned upside down, their routine shattered. There was no more family dinners or camping in the woods. No more books before bed or just a lazy day around the house. There was no more normal.
The guilt of this hit me when my oldest son, K, was staying the night at my moms. He had spent a lot of time with my mom since the accident. I just didn’t have it in me to balance both caregiver for my husband and attentive mother to my boys. But K had had enough of Nana. He started to cry and demand to go home. He wanted his own bed, his own house, his own normal. It occurred to me then, that in my quest to “fix” my husband, my son had lost both parents.
I realized I couldn’t keep the injury from K anymore. We had a marathon of recovery ahead of us and we needed to do it as a family. So I decided to get K involved. At that time, he was just learning how to read. So I had him read to Dadda. They both took in the visual words and helped to strengthen their comprehension skills. We played a game called BLINK that focused on multitasking in the brain. You must match numbers to numbers, colors to colors and shapes to shapes. My husband and son were on the same multitasking level at that time. We started a gratitude journal, where each night we would sit down as a family and name the best thing that happened in our day. My husband would then write it all down in the journal and my son would draw a picture of the events. This helped to strengthen my husband’s memory by recalling the day.
Doctors have said that the most significant recovery from brain injury happens within the first year. I don’t agree with this. Each year my husband has recovered, but in completely different areas. The first may have been devoted to making him “functioning,” but the other years were devoted to his emotional, spiritual, and societal recovery.
Brian injury is a life sentence and recovery never really stops. There has never been a day when my husband woke up and said “I’m cured!” And honestly, the most significant strides in his “Self” recovery have been in the past year or so.
We never did find our normal, not like it was anyway. But we found a new normal. A normal that told us everything changes and not all changes are bad. Where brain injury is concerned, change is a sign of growth. Change is normal.
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