When you look at me now, you would not guess that one morning I woke up paralyzed on my left side, blind in one eye, and barely able to speak. I look normal now. I don't look like someone who spent weeks in the hospital and months relearning how to walk, talk, and think. For many years I have been very proud that I recovered from my brain injury enough to pass as a normal person to the public. But there is another side of a visible recovery that many people don't see.
I have spent over a decade practicing little strategies every day that keep me looking functional. If I don't have a strategy, I ignore it or try to downplay it.
1. My entire left side has dulled feeling. It's like I have a layer of latex coating my skin, organs and muscles. If I am handling a knife or am around a fire, I need to keep my eyes on my left side, I can't multi-task. I don't know how badly I injure myself. Securing a seatbelt when I am on the passenger side of a car is hard too. My family knows enough to offer to help. It depends on how I'm feeling driving with others if I ask for help. I have gone without a seatbelt to avoid the feeling of shame in asking for help.
2. Since I was paralyzed on my left side, the entire weight of my left arm was hanging from my shoulder for a week. That week stretched out my shoulder tendons and ligaments so my left arm does not sit correctly in the shoulder socket. I avoid dancing to YMCA and keep heavy items on lower shelves. I also have difficulty putting on my bra and blow drying my hair. I always put coats on left arm first.
3. Cognitively I still have a high IQ and can learn things quickly. My memory is not what it used to be. Before I order coffee, I need to rehearse it in my head so when I order it, I look like I am reciting something someone else told me. Sometimes when I am asked to remember a particular detail about something, it's like my memory is of an empty suit jacket. I can remember where I was, what the page looks like, the scene around me but not the actual thing I need to know. The more I try to find it in my memory, the farther away it gets. I have trouble writing capital E's as well. I also sometimes completely forget to rinse off my left side in the shower.
4. Motor skills bounced back really quickly for me after my injury but recently my doctor informed me that I relearned how to walk when I was 24 and now that my body is aging, I might need to pay more attention. I was very upset hearing this but I had just told my doctor that I felt like one leg was shorter than the other so learning to walk in a 38 year old body is the better option!
There are many other OCD like rituals I have to keep it together and this is what they mean when they say that you really never recover fully from a brain injury. It's not the end of the world but it is a daily reminder.