I don’t open up a lot about my disability or what it’s been like or what we’ve been through. I need to open up because a lot ways on me. So this is going to be part 1 of a series about it. I feel the need to let my story be known
There is a misunderstanding sometimes of acceptance. I watched a Hallmark movie that was on last night where the guy had suffered an aneurysm three years before and it destroyed his short term memory. So he could remember what happened before the aneurysm but every night when he went to sleep it erased his memories of that day so he was never able to build new memories. Movies like this hit me hard. As someone who suffered a brain injury and knows what it’s like to deal with the limitations that come from a brain that has had damage. I will briefly describe what happened to me for those who don’t know and explain what I mean by there is a misunderstanding of acceptance.
For me personally what took place is that the stroke caused a disruption of oxygen to reach the right part of my brain for a period of time. We don’t know how long because it happened when I was sleeping. A large portion of my brain effectively died during the night between February 1, 2010 and February 2, 2010. According to the scans I’ve seen of my brain it’s a big part of the right hemisphere of my brain. The reason that I am doing as well as I am and am so high functioning is that this took place when I was 25. The younger your brain is the better it can typically recover from damage. Really 25 is about the time when it begins to become harder to recover. That’s why so many elderly people die of strokes because their brains are unable to deal with the damage or find new pathways around the damaged sections.
The thing about brains is the left half controls the right side of your body and the right half controls the left side of your body. So because the damage was to the right side of my brain I struggle with the left side of my body. My left hand lacks a lot of control especially fine motor movements with my fingers. I was left handed so that has made it basically impossible to write. It is hard to switch which hand you write with so I type a lot or have others write for me if that’s an option. Luckily in today’s world electronics are available so writing isn’t as important as it once was. I can write sot of legibly with my right, enough to kind of write a check out or sign in some where but that’s about it. Also I have to wear a brace on my left leg it is from my foot to a couple inches below my knee. People, even those I’m close to struggle with understanding the purpose of this brace. It’s not there because my leg is not stong or unable to support me. I don’t just need to strengthen the muscles. My leg can support me. I can walk from room to room without the brace but I can’t walk long distances or in the dark or low lighting, or go up and down stairs on it. The reason is that your brain sends signals to your feet and leg to adjust your balance and keep your muscles engaged while standing. My brain doesn’t do this and without these signals my balance causes me to be unsteady and my leg and ankle give out on me. You also use the toes on your feet for balance I don’t feel those so I can’t walk without looking at my feet with each step, that’s why lighting matters.
This is where the acceptance comes in. I know that based on the time that has passed, there is almost no chance of recovering these signals to my hand and foot. It doesn’t mean I don’t want them back I would love it but I can’t go through everyday wishing and hoping for something that can’t happen. People assume I could train my body to get these things back and I can’t. My doctors are already amazed at what I’ve been able to recover and get out of my body. I can improve my stamina and build up my strength but I can’t get these things back and learning to accept that makes me strong not weak. I needed to move on from this in someway and sometimes people don’t get that. They want me to keep trying to be who I was. That would damage me further. I won’t wake up tomorrow being who I was before the stroke anymore then I could wake up tomorrow a size 2 and look like a supermodel. Asking for the impossible and accepting who you are is part of life. I fought my way back from being in a hospital bed, using a wheelchair, learning to move my arm and hand to do tasks like dishes and laundry. I need people to stop thinking that because I’ve accepted my limitations for what they are that it means I gave up. I didn’t give up. I fight like hell to be as whole as possible everyday. I push myself to go to street fairs like I did yesterday with my daughter so she could go, walking almost a mile and a half. Getting a blister on my foot from my brace and being in excruciating pain from putting my body through that. Giving up would be laying in bed everyday. It would have been refusing to get well enough to leave the hospital, refusing to move out of my parents house, where we lived after the stroke, I may not be who I was before but I am so sick of being treated like I didn’t fight to get well and don’t continue to try. No one truly knows how hard I’ve worked and how much I try. I’ve accepted who I am but I’m not necessarily happy about it but really I can’t change what happened to me. I just have learned that moving on feels a lot better than dwelling on it.
My girl and I at the festival. Only she is worth the pain I feel after a day like that.
So if you know someone who has an illness of disability please realize that you have never been in their shoes and you don’t really know their battles. I will share more of what I’ve been through and the people good and bad who have been a part of it.