snowflake warriors

MG patients have a nickname. Because of the way MG affects each body differently, every patient experiences their symptoms and the severity differently. We call ourselves snowflake warriors. Some experience symptoms limited only to their eyes, called ocular MG. Others, like me, have generalized. All the voluntary muscles in our bodies are affected. However, my biggest weak spots are in my upper body, especially my hands and shoulders, eyelid drooping (ptosis), flat smile, blurry or doubled vision (diplopia) and general fatigue.

Everyone processes their diagnosis and symptoms differently, too. I had a difficult time coming to terms with my disease after the initial relief of having a label for what I was experiencing. Soon after it became a tangible explanation, the anger set in. God seemed distant and cruel to allow this ugly disease to be part of my life. I was isolated. My mom made the decision to pull me out of school shortly before the diagnosis, and she spent the next two years home schooling me. Looking back now, I can say that was probably the biggest blessing. I was a very active child before my first signs of MG. I was competitive, fast, energetic, extremely driven, and fiercely independent. I danced, swam, ran, played soccer, rode bikes, did gymnastics. I played guitar, piano, and viola. All of that stopped when my muscles stopped responding to my brain. The only thing that I could make my weak muscles work enough with was writing and paintings. Granted, my handwriting was horrible, and I dropped my paint brushes and pencils a lot… but it was something I could do. I credit this time to my love of the written word and my development as an artist, however lonely it was.

I gradually came to a place where I wasn’t so angry with God, and I could see the ways He provided for me in the darkness and trials. I don’t know if His plan was ever for me to be sick, but I know that His plan was to form me more into the woman I am today. And He kept His promise to work good in all circumstances.

It was a struggle coming back to school and feeling different. I had been through a life altering event that was ultimately invisible to my peers. I was still on a steady dose of medication. I had a 10 inch scar across my chest. I had spent more time in the hospital than most people spend in a life time. It felt awkward, and I felt like I was constantly playing catch up. Yes, I had missed out on a lot (which was probably for the better, I hear 6th and 7th grade are brutal). I didn’t start going to school full time until 10th or 11th grade – honestly I can’t even remember now what year it was. I was suffering from some major control issues during that time, and became a fairly miserable person to be around. I steadily dropped weight, and needed to seek counsel for several years to stop controlling my body through food manipulation. I wish I had listened to my mom when she wanted me to get counseling early on during my MG process, but my school counselor (see previous post) had left a bitter taste in my mouth. I would have saved my mom a lot of sleepless nights, and myself from just plain misery if I had taken control of my life in a better way.

I think one of the most powerful experiences I had in this process was sharing my testimony with the kids at the camp I had worked at for 4 summers. The 3 day camps that summer were themed around the banquet table. Each camp I created a craft/art project to along with that theme. I spoke at the second camp about the plate at the table. Often times we look at the plate in front of us in life, and it is full of things we don’t want to take in – or maybe it is empty. We are unable to see the ways that those things will grow us, nourish us, and change us. I didn’t want MG to be on my plate. There were (and still are) things I didn’t want on my plate, but after I accepted them I was able to seek God through it all, regardless of my reluctance. That night I passed out plates and paint, and everyone had the chance to “free paint” in response to their time at camp and what they learned. I strung the plates together into a “quilt”. It was the first time in 2 years I had been open with my MG journey. I didn’t know at the time that in a few months I would flare again and come out of remission.

I’m still in the midst of it, but it hasn’t been has bad as I thought it would be. Coming out of remission was something that I was scared of. I was afraid of being as sick as I was when it all started, and I’m not. When I was at my worst parts, I used to pray Psalm 91. I wanted God to take away my disease. I thought that if I cried out enough, that it would go away. There’s not a cure for it yet, but I was delivered from symptoms for enough time to know that it’s possible.

Psalm 91:14-16  “Because he loves me,” says the LORD, “I will rescue him; I will protect him, for he acknowledges my name. He will call on me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life I will satisfy him and show him my salvation.”

I know now that God really just needed to delivery me from myself. From my self pity, from my fears of missing out, from self perceived inadequacy. I do pray, and I pray daily, that there will be a cure in my lifetime. And I pray that sick or not, I will live a life with purpose as a “snowflake” fighting on, remembering that everybody has a different struggle and story to tell.

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