I really didn’t have a choice at 8 years old. This is my life, the only one I have, and I’m gonna live it. At the time I didn’t really know what all that would entail. I knew I’d always felt weak, I knew my body had issues and that I was different from other kids. But where do I go from here? How am I going to live now, with this, like this?
I awake in bed around 6am to my alarm. I sat up groggy and sleepy-eyed, and swung my legs around the side of the bed… No, wait, they didn’t move. What the…? (Little fact: I wasn’t allowed to say “what the anything” but I sure thought it a lot!) I’m telling my legs to move, maybe they are still asleep. I rubbed them down a little, I can feel them. My brain is shouting for them to move. Why aren’t they moving?
“Momma! Daddy! Something is wrong, I can’t move my legs! L (my older sister currently age 12), go tell mom and dad I cant get out of bed!” Like I said, I really don’t remember crying. I wasn’t in pain, I just couldn’t move. A part of me was worried and scared because this had never happened but, I wasn’t actually surprised. I knew about disabilities, I was a very bright kid. The fact that I’d been so weak ever since I could remember coupled with the pain and muscle protein loss of recent, it almost seemed logical. I was more concerned about missing my test at school than being unable to move my legs.
My parents took me in to see Dr. B that morning. I really loved Dr. B. He was a doctor who genuinely cared for his patients no matter the insurance coverage they carried. I never felt like a “low-income child” when he tended to my needs. He did everything in his power to give me proper care, even if it was more paperwork or having to make extra phone calls. I remember how he looked at me when my dad wheeled me in. And come to think of it, it’s how my parents were looking at me too. I’m honestly just now remember their faces. Strange how they didn’t translate when I was 8 but now, now I see it and I can’t help but feel a strong emotion. All of their faces read concern, deep concern. They were looking at a beautiful little girl, with a very bright mind and the sharpest wit who very well could be robbed of all her hopes, dreams and aspirations. Their hearts were breaking for me, the worry etched too clearly on their faces and in how they held their bodies and I was completely oblivious.
I’m so grateful I didn’t see their worry. Had I known what was facing me, had seen their worry, or known that I had a cause to be worried, I don’t know that I would have exercised as much strength as I did. I know this is silly, but I didn’t want to worry them. Hahaha, I was being strong FOR THEM. Lol. I’m sorry I am literally laughing as I type this out. Really though, it’s amazing what children are capable of doing for another person. How they can be strong, how they can persevere and hold to hope blindly.
That day Dr. B recommended I see Dr. N.B. He was the doctor who diagnosed my Aunt P. with Mitochondrial Myopathy, and he might be helpful to us now that I was exhibiting so many symptoms. I’m sure this was no easy feat scoring an appointment with THE BEST DOCTOR IN THE WORLD for Mitochondrial Disorders (No really, google Dr. Neil Buist he’s a rock star). But I had 3 things working for me, 1) Dr. B would do anything for me to get the appointment 2) Dr. N.B. was very much intrigued by an 8-year-old with a possible Mito and last but definitely the most powerful 3) God.
We went home, it had been around 4 hours since I woke with paralyzed legs. And then I felt it. A strange sensation in my toes. Not really a tingling, more of an awareness. Life, I could feel life coming into them. I began focusing like a ninja to wiggle them. Got it! A wiggle! They were coming back it seemed. This made us all happy. Of course, there was still an issue to be addressed but we had the hope of seeing Dr. N.B. soon and now, they are returning! The feeling began to move from my toes up to my knees and then from there up through my legs and into my hips. But as the ability to move returned, pain replaced the paralysis. The most excruciating pain I had ever felt in my entire life. I really don’t know how to explain this pain to you. In my 24 years of life I have never felt anything like it. If someone offered to cut my legs off, I may have taken them up on it. The pain lasted for hours. My parents gave me as much Vicodin as I as they could but it didn’t cut it. I cried now.
This is when I wondered if I could play this hand. Is this pain going to last forever? Are my legs going to do this often? Can I live with this pain and still feel happiness? Why me God? This is when I realized more would be expected from me in my life than I ever thought.