Drawing a Map: How We Found Our Way Without Guidance
So I was in Texas now. The weather was just fine, and I was miserable in my own skin. Why? Because I had a brain and body that didn’t work together. That being said, I was also grateful and hopeful for a chance to recover.
Now that we were in Texas, my mom and I no longer had “a map” as my mom says. A map: a clear outline of how to navigate through my recovery. We were winging it. I’d hear my mom talk to John or her friends about her anxiety about how to proceed now.
My body was in pain as I built the minimal strength needed to walk… and talk… and even eat! And all of these were activities that I was newly recovering. My brain and my body were uncooperative which was shown by how my extremities on my left side (arm and leg) where both terribly uncoordinated. I’d need to really focus on any activity. Walking, for example, took a lot of concentration and effort to will my left leg to shift my weight to my right foot and then to lift and bend my left leg, move forward, and place it gently, heel to toe, back down to the ground. It feels ridiculous explaining the small nuances of walking as if you’ve never done it, but that was still just a few of the details that I had to think about with every step. All while trying to keep my balance throughout, and I didn’t have much balance.
In fact, I had only recently started to shower on my own without a shower seat. I was showering one morning in Texas when I lost my balance. I remember it vividly. It didn’t happen quickly. I knew that I had lost my balance and had plenty of time to catch myself if I was in better mental health. It seems like it was a while that I was trying to will my body to move in a way that would prevent me from falling, but my entire body wouldn’t cooperate. I looked around for something to hold onto and tried to get my arms to reach for support, but they were unresponsive as well. As I was falling out of the tub, I did manage to grab the shower curtain which ended up falling on me as I pulled it down with my fall out of the shower, and I hit my nose on the side wall of the tub.
So there I lay on the outside of the tub… wet and naked with a shower curtain draped over me as blood poured from my nostrils. I mustered the strength to pull myself up, wipe the blood from my nose, get dressed, and go downstairs to tell my mommy that I had a boo boo. She cleaned me up further like a good mama and told me that brain injury survivors were much more susceptible to sustain another brain injury. She was truly concerned that it may happen again only worse: I could hit my head and have another brain injury! I assured her that I would be more careful and not let it happen again. She put a grip mat at the bottom of the tub to further prevent a disaster.
My left hand had a pretty severe tremor as well. I spilled countless glasses of water, juice, or soda, and several cups of coffee. We realized that I needed food cut for me after I attempted to cut a steak and ended up tossing it on the floor.
I still had to pee at least once every hour as well. I had no strength to even hold my bladder. I remember numerous times while being driven, I would demand either my mom or John to pull over so I didn’t pee my pants in the car. We kept a wide mouth plastic bottle in my mom’s car in case of emergencies, and I filled up a bottle while my mom was driving numerous times every week. We constantly were trying to get wide mouth beverages for this very reason.
Thank god I didn’t need a bedpan when sleeping like I did in the hospital. I have lots of embarrassing stories of accidents that I had in the hospital or in the early days out of the hospital that I didn’t reveal and I don’t intend to. But I will tell you that they do exist.
We also started looking into local therapy, and even yoga. My mom contacted the TBI foundation and found out about Comprehensive Rehabilitation Services (CRS) in Texas and worked on getting me an interview and qualified. Because of PPACA, I had to be uninsured for six months before I could get health care with my preexisting condition of my brain injury and all of the resulting complications like ataxia… without PPACA I never would have been able to get health insurance after this. We were also trying to find an eye doctor who worked with my type of brain injury, which caused Diplopia (double vision). My mom took out a loan from her sister to pay for this very expensive therapy out of pocket. We found The Austin Center for Vision Development, and I was first evaluated on October 19th, 2011. I left New York with a pair of glasses that had a 7 diopter prism and now I was reassessed at a 9 diopter prism. The idea is to get to zero. This evaluation verified that I was losing ground fast.
I would run errands with my mom and try to get out and walk as much as I could… which wasn’t much. I remember when we were in NY and I just began to use a cane, my mother would walk quickly leaving me in the dust. She would tell me to hurry up because we were going to be late. I’d wave my cane and attempt to yell at her that I can’t walk that fast and if she really wanted to, she could just go and I’d meet her there as soon as my weak little legs could take me there. She’d tell me to stop it! and that I looked like a crazy man waving my cane at his mother. I told her “Nobody cares. This is New York. People see crazy men waving canes and yelling all the time!”
A lot of things had changed for me since the moment I rejoined the human race when my memories begin in June, 2011. Things had been far from stable and we humans don’t handle change well until we’ve come to accept a change. And I had had months of doing just that because I had to. Now that we were back in Texas, things had calmed for my mother… she was finally at home after 5 months, which calmed me. We had a lot to learn and it was a long road with toll booths at every turn and so many stops along the way. We didn’t know what even one half of what we needed was. It was new charted territory for us, and it was territory that we didn’t want to be in… but we were there because we had to be, and we were prepared.
It’s been a hell of a year, but I’m mentally prepared
To do a dance around the next couple medical scares