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As part of MG Awareness Month, I wanted to share some personal stories written by individuals with MG.

I am including several of these personal pieces throughout the month of June, because all of us with MG are affected in somewhat different ways. I hope to shine a light on how MG impacts the lives of the people dealing with it. 

The following was written by Valerie P. Allen.

A photograph of Valerie, symptom free.

It was October 1999. I was 13 years old and in 8th grade. I was an avid basketball player and was being recruited by a high school to play on the varsity team. I had dreams of playing in the WNBA. I may have been 13, but I was pretty darn good basketball player! Then life hit. At 13 I had to end all my dreams and grow up. What 13 year old should grow up and act like an adult? I never thought it would ever happen to me. I was healthy. I was fit. I was on track to growing up to be something big. I had potential.

Then it hit me. I had droopy eyes and double vision. How could I possibly play basketball like this? Then I started slurring my speech. Then I couldn’t hold my head up. “What’s wrong with your daughter’s eyes?” My coach’s wife asked my mother. Complete shock to her. How did she not see this happen? How did I not see this happen? Did it just happen right then during practice? Even my coach noticed something wasn’t right with my eyes.

The next day my mother made an appointment with my doctor. He had an intern with him so I was questioned and questioned. Does this really mean my dreams of playing in the WNBA were over? What happens now? Will I live? Is it going to kill me? Thoughts no child should ever have. What’s wrong with me? More questions. Then my doctor came in. Same drill. More questions. I’m 13. I shouldn’t be here like this. I should be playing basketball. I should be acting like a kid. “I think Val needs to see a special pediatric ophthalmologist”. Can he fix my eyes? Will I be able to see straight again? One could hope right?

A week later I was seeing a pediatric ophthalmologist. The first thing he said was that he specialized in Myasthenia Gravis. Well… What the heck is that? He wasn’t sure, but let’s try prednisone to see if it helps. “I’ll see you in three weeks”. Just like that? Three weeks on prednisone. What is that? Then the moon face. And the sudden weight gain. I’m 5’3” and 135 pounds. Weight jumped up 10-15 pounds rather quickly. I can’t play basketball like this! But hey! Double vision is getting better!

Three weeks later at my ophthalmologist… “I think your daughter may have Myasthenia Gravis.”

What is it? It’s a neuromuscular disorder where the brain and the muscles don’t communicate right. It makes your muscles weak and often affects your face the way it is. “I think it’s time you see a specialist.” Great. More time away from what I love and school. And my friends. I’m already different, this makes it worse. My life was falling into a billion pieces at age 13.

Middle of November 1999, I’m seeing another eye doctor. More tests. More time. More questions. I just want my old life back. My baby brother is resenting me. My sister understands that her little sister is sick. What did I ever do to deserve this? “We’re going to confirm Myasthenia Gravis with a special test. But I’d like to have my interns come in and see this. It is a learning hospital after all.” What choice did I have then. I was a minor and my mother made most of my calls. I am an interesting case I suppose. Might as well. Then again, before I could say anything I was in a room filled with three doctors, six interns, myself and my mother. Not the best situation for a claustrophobic child! “I’m going to administer a tensilon test into your hand. It’s very potent and the reaction will be so strong and rapid that you need to look up at us.” The only thing I remember is my mother shouting “Oh my God!”. And many gasps from the doctors and interns. It’s official. I have Myasthenia Gravis, MG. What does this mean? Will it go away? Do I have it for life? Will it die from it? What happens now? Can I still play basketball? Questions that I never got to ask. But my mother asked all but one. The one I really wanted to know. Apparently that wasn’t important at that particular time. Off to another doctor. “Let’s start her on mestinon and take her off prednisone and see how she does. It’s all ocular and facial at this point. Let’s see you in four weeks.” That was that. Maybe this is all I need.

Valerie, with fading eyes.

Not getting any better. Still seeing double vision, can’t keep my eyes open, Now I’m really slurring my speech and I can’t smile. My classmates are making fun of me and even teachers are talking about me. I don’t want to go to school today. I don’t feel well. Really, I’m just tired of the teasing. I get to play hooky as long as I want at this point. Such a devastating disease to have at 13. I still am playing basketball. So I have to go to school. I hate the way I look. How can I see the hoop? Oh, it’s vertical. Just aim for the top hoop and I’ll make it. That was my strategy. Well, now how do I pass or catch a ball? I’ll close one eye. Another strategy. No, don’t take me out. I’m okay, really.

Four weeks. Let’s talk about surgery. … What? It’s called a Thymectomy. You’ll have a full sternal cut and we’ll remove your thymus gland since it’s enlarged. Great. My brain hates me and now I have to have surgery because of it and this gland? I’ve never had a broken bone in my life and you’re telling me you’re going to break my chest? How is this fair? Why can’t I be normal? “We’ll add prednisone, low dose, and set you up with a cardiologst.” Now I have to see a cardiologist? Really? More doctors, more questions.

Three weeks later I’m seeing my cardiologist. Who was amazing. “Let’s schedule pre-surgery affairs in two weeks, and discuss a date.” Do I not get a say is any of this? I’ve been told I can’t play basketball for six weeks post surgery. I won’t be going to school for at least three weeks. And even after that it’s half days for the last three weeks. I really hate my life right now.

Everything is getting worse. On top of every other symptom, I can’t hold my head up anymore. My coach isn’t playing me. I’m moody, gaining more weight and I’ve got bad acne. How much worse could this get?

Surgery is set for January 28, 2000. Happy new year to me… Or not. I have my surgery. Oh the pain. Not in my chest. My IV filled hand hurts. Shouldn’t my chest hurt more? Guess I could handle the pain better than I thought. I’m bored. No thanks, I don’t want pain meds. Please let me sleep. Why do I have a tube there? Why do I have a tube in my chest. I’m still 13 and exposing myself in more ways than a child should. How embarrassing. Can we just get this over with? Not comfortable with this situation one bit.

 ~

The second half of Valerie’s story will be posted tomorrow.