I’ve been wanting to write to you for some time to tell you about what’s going on with me, but I haven’t been in a good enough place to do it.
In May of 2013, I was diagnosed with multiple sclerosis. My symptoms were that my right hand started to go numb. Since it was the end of my second semester of class work towards a PhD in English at UH, I attributed it to stress. I had had similar symptoms before, but they always went away after the stress event was over. This time though, the numbness didn’t go away and got worse. I got to where I couldn’t operate the handle on my Lazyboy chair, and couldn’t touch my right finger to my nose with my eyes closed.
I went to a neurologist, who wanted to hospitalize me immediately but settled for ordering a CAT scan. The results were that I had a large, active lesion on my spine, some scar tissue on my spine and several micro lesions, or sclera, in my brain. I was admitted to Memorial Herman Southeast the same day that Sally Roher died; her family was in the emergency room while I was being admitted.
I had a five day treatment of high dose steroids, which seemed to work. Some of the feeling returned in my hand, and I was able to find my nose with my finger again. I can work my recliner again, and even type, maybe not as well as before, but good enough for my purposes. My fingers on my right hand now feel like I have rubber bands wrapped around them at the knuckles, and I have one big band that stretches across my palm. Current science says that this is probably going to be a permanent condition. I have a constant reminder that I have MS, and it’s not going to get better, but may get worse. So if you’ve told me that you are praying for my healing, and I was kind of rude about It, that’s why. (Particular apologies to Mike Wentz!)
After leaving the hospital, I was very afraid, mostly that I would not be able to do the things I was expecting to do. In particular, the first choir rehearsal we had in August was just a train wreck, and I was nervous that I wouldn’t be able to sing any more, which would have been a really big loss for me. As I started to do things, like teach classes and take classes, I began to realize that I would be able to do the things that I wanted to do, I just might have to figure out how to do them differently. I’ve always been a left handed person in a right hand world; to minimize the situation, in some respects this is just going back and re-learning how to do thing with my right hand. I was afraid I wouldn’t be able to juggle; I can. I was afraid that I wouldn’t be able to play the guitar; I’ve found that I can if I use a pick instead of my thumb and fingers to strum.
Along about October and November I got really angry. I’m not sure what I was angry about. I think it was about being singled out for punishment, like there was something that I did to contract this incurable brain disease. Science has no idea what causes MS, but I must have had some part in this. After all, it’s my body! It’s not much fun being a patient, something I’d never been before, being poked and prodded, taking daily injections that may, or may not, be doing anything.
My anger led Karen to contact Rochelle about her grief group. I agreed to go, and have let go of a lot of the anger I was feeling. Rochelle challenged me to do some fun things I had given up on, like the guitar, and I found that I could do those things as well, not just the things I needed to do for school and work. I guess I was feeling victimized and angry; now I am feeling like I can figure out ways to do the things I need to do and want to do.
Part of having MS is that I can have a recurrence, or flair, if I get too hot. I had one recently at the rehearsal for the children’s Christmas program. We were practicing in the chapel, which was cold, and then went to the sanctuary, which was very warm. I started feeling awful, and didn’t know what was wrong. I decided to tough it out and got through the rest of the rehearsal, then went home and passed out for three hours. I remember wondering what was wrong with me and thinking, “I’m not sick…” Then I remembered, “Oh yeah, I have MS.” I got up the next day and sang in the performance, although it really didn’t matter because Carter Kirkpatrick upstaged all of us.
So that’s where I’m at. Most of my days are good days, but some are hard. I am extremely grateful to Karen. She has been a lifesaver throughout all of this. I hope I am getting a little easier to live with, but I do notice that she is beginning to ask me to do more things around the house, which is unfortunate. I also appreciate everything my Friends have done for me. I appreciate your prayers and your patience. I look forward to the coming year and I am eagerly awaiting whatever God has in store for all us!
Love, peace and joy throughout the coming year,