Chapter 3
It has been a while since I have posted. I apologize for that. I will try to pick up where I left off at the end of Chapter 1.
I stopped my clinical hours for school, and I kept 2 classes. One class I knew I could get away with missing sometimes, the other I was able to miss as much as I needed to. I was thankful for understanding professors, but I had always been a determined student so it played a toll on my emotions to put my health first and my school second.
I am so glad I did. Right after I slowed down, I went downhill, FAST. I had been using a wheelchair for long distances only, usually WalMart trips when I was feeling really sick and weak. Suddenly though, my body was fighting me and I barely had the energy to lift my arms long enough to brush my teeth or hair. The wheelchair was a necessity. Around the house though, I was okay for about another month as far as walking around. Before too long, every time I took a step my muscles in my legs began to cramp in a way that would take me to my knees. It made it impossible to keep walking. I suddenly found myself consonantly on the couch or in the bed. Even when I felt better, my body didn’t and it was going to rebel. I discovered that my body wasn’t capable of doing simple tasks, and I certainly wanted to know why.
I began to hound my doctors for answers. I went to doctor after doctor and had test after test. At first, the best guess the doctors had was MS, but my test results didn’t confirm this. After an EMG, the neurologist changed the “best guess” to neuromyotonia, commonly known as Isaacs Syndrome. I was more fond of the thought of Isaacs Syndrome than I was of MS, but I didn’t understand why I couldn’t get a solid answer, why I was only getting guesses. I was frustrated beyond belief. Neuromyotonia did become my official diagnosis (though not confirmed) for a while, and I was beginning to be treated for it. I did have the symptoms, all of them. However, the diagnosis just didn’t sit right with me for some reason. I now know why. God was letting me know it wasn’t the answer.
Emotionally, I was beginning to feel like a bit of a wreck at this point. Somehow I was still okay though. I remember some horrible emotions, but I always knew God was going to get the glory and He was going to bring me through. Some of my closest friends let me know that they were very scared about what all was happening, and I would tell them about the peace He had put in my heart. I knew something was coming. He was going to work. I just knew it. That’s not to say that I never thought I would ever be able to be without the wheelchair. When buying our car, we made sure it was convenient for the wheelchair. It’s safe to say I didn’t think things would be peachy. However, I knew things would be okay.
Many things would knock me down emotionally, it always felt like one after the next. Luckily, I was able to catch my breath and gather myself before the next. I think that people forget that when someone is going through something so uncertain medically, it also makes them weak emotionally. I remember a few people asking me if I had repented of all my sins and a few others asked if I had been right with God. These comments absolutely crushed me. The last thing I needed was for others to suggest that the reason for all of this was because I was sinful and so I had caused this. I knew in my heart why it was happening. It was because God was at work and was carrying out a plan I was unaware of. That’s all I needed to know. Even with knowing that, these types of comments tore me up.
The wheelchair always brought up emotions. I loved that little wheelchair because she allowed me freedom. I also hated her because she reminded me that I was sick and didn’t have independence. I remember a couple of times in my wheelchair that actually made me stronger. At one point, a worker at a store saw Philip pushing me in the chair and said, “I sure wish I could have someone push me around all day”. We were both steamed. I was upset because I didn’t want to be in that chair, I wanted to walk around all day. But, mostly, I was upset because I was still able to walk myself to the bathroom, etc. There are those out there that can’t. Of course they want to walk around all day. Another time, an older lady saw me in line at a store. Philip had stepped away for a bit, so she looked down at me and stepped right in front of me in line, knowing that I couldn’t do anything about it. I wouldn’t have been as surprised if she was a younger, but an older sweet looking lady? Oh and the looks you get in a wheelchair….wow. Looks for kids never bothered me, it was the adults that made me want to cry. Many times I would see people pass by me staring and turn around still staring. Or, I would hear them comment as they pass. All sorts of comments. “Kids sure are getting lazy and giving up easy these days”, “Oh my gosh, did you see her? She’s young. What do you think is wrong?”, “Wow, she’s too young for that mess, just get up and walk for yourself”. A word of advice for those who have never been in a wheelchair: 1. Don’t stare. The person does notice. 2. Don’t comment no matter how softly you think you do it.
-Maegan
Hope for the Weary 