Traveling with Multiple Sclerosis and Rheumatoid Arthritis
So here I am on the coast for a change of scenery, on vacation for this week of Thanksgiving, yet still on the computer. Gotta love internet access.
I have several thoughts bouncing around in my head. This past Saturday as I was filming a short video for the How I Fight MS project, I talked about being a musician living with MS. Here at MS Central, I've told small snippets of my musician stories but never in great detail. One of the brief stories which stands out in my mind was relayed in this post: "I had to learn to reconstruct my life." - Jacqueline du Pre
Nowadays, I think less about what I "used to be" and more about what I am.
When I first had optic neuritis (at least the first case which was obvious and disruptive) in 2000, I was in the middle of the busiest month for spring performances - March. The week before, I had played at a local university for an event I can't even remember what it was. Such is the life of a freelancer. I was sick and had snot coming out in copious quantities.
The day I woke up not able to see out of my right eye (on a Tuesday), I had two "kiddie concert" performances with the Fairfax Symphony during the day. I missed the first one while I was visiting my own eye doctor and then going across town to see a retina specialist. I made the 2nd concert after which I was squeezed in to see a neuro-opthalmologist in Rockville, MD. This doctor is the one who diagnosed optic neuritis and who was the first one to ever mention the words 'multiple sclerosis' to me. But of course, testing needed to be done first.
On Wednesday, I had copious amounts of blood drawn before going up to Baltimore for the first rehearsal of the backstage horn parts of Tannhauser with the Baltimore Opera Orchestra. Thankfully the neuro-opthalmologist had told me that my vision would get worse before it got better.....because it did.
On Thursday, we had two more "kiddie concerts" to perform and by then I was competely blind in my right eye. One of the recommendations I had been given was to wear an eye patch over that eye. "Ar mateys" the pirate musician on stage for the 4th graders of Fairfax county. Strangely, it seemed that the hearing in my right ear was also affected - or it was just that not having vision on that side really messed with my senses, literally.
In the weeks which followed, more rehearsals in Baltimore followed by several performances. I carpooled with a violist to each service. Thankfully the backstage horns play somewhat near the beginning of the opera and later near the end. During the middle, there was time to rest and talk with an angel of a horn player whose mother has MS. I was exhausted from the prednisone and a bit worried about the implications of not being able to see.
I was also continuing to teach my students and for any lessons I canceled due to rehearsals/performances, we often rescheduled for Saturday mornings. There were more performances with such groups as the Fairfax Symphony, the National Gallery of Art Orchestra, and various choruses in the months which followed.
It took two months before I got my vision back and several more months before I recovered from the high doses of oral prednisone. We have since determined that my body can't handle prednisone and I use oral decadron instead when needed. Even the quality of my hair changed during this time.
Fast forward to 2005 and the official MS diagnosis. I told my students' families about the MS, but I didn't tell any musician colleagues. I kept it a secret. In fact the first time I told a fellow musician was just before I finally was diagnosed with rheumatoid arthritis in the spring of 2007. I was playing a concert at the National Gallery of Art and was using wrist braces to protect my joints following steroids injections given by a hand surgeon.
I still didn't know that I had RA, but for some reason I opened up about having MS when my colleague asked about the wrist braces. She was very understanding and shared that her sister has early-onset alzheimer's disease. Not MS, but another neurological disease. We talked about the brain.
At another concert that spring, I opened up with a different horn player. This one plays with the Fairfax Sympony, a group which I had been playing regularly as a substitute and extra (hardly missing out on any concerts) for 7-8 years. He was surprised and obviously didn't know what to say. Strangely, I have never been called back to play with Fairfax since.
Between the repeat relapses and treatments with Solumedrol, exhaustion and severe fatigue from MS, in addition to the emotional rollercoaster I experienced, it was somewhat welcome to have a lighter performance schedule. Then, when inflammation from RA caused such pain that I wished someone would simply chop off my arms, I voluntarily did not take on many playing gigs. I couldn't even stand to touch my fingertips to the piano keyboard, much less use my hands for anything else. Thankfully medications have taken away that pain.
Looking back, I do miss the variety of performing with so many different organizations in various settings. I do not miss the driving nor time involved. I still play, but honestly, it is much MUCH less frequent. As for my music studio, I keep the number of students I have below 20. At one point in time, I taught 44 students each week, 6 days a week. I don't miss that.
Life circumstances change. We adapt and grow. If I were still performing as much as I used to, I would not be sitting here listening to the ocean and typing this post.
I am an educator, an advocate, a friend, a musician, and many other things. It is what I am right now rather than what I "used to be" which makes me grateful to simply be.