You know.. having an invisible illness sucks sometimes. Nothing has happened recently, and my MS symptoms are still very firmly under control, thanks to my personal management program. But, my husband and I were talking this morning and I was reminded of how I had to leave a community band because my particular MS is mostly invisible. The experience reminded me of two things, 1. MS does effect my every day life, and 2 people still don’t understand invisible illnesses.
Before I found natural health/wellness I spent about a year stuck in a very serious brain fog. EVERYTHING was harder, I had difficulty understanding some things, and making connections. Occasionally I would walk into a room at home or at my office and the whole room would look unfamiliar. It was scary, frustrating and a whole lot of other things that I was never able to fully put words to. Dealing with constant brain fog was difficult to say the least. I was used to things being easy. I was a straight A honor student in school, I scored in the top 1 percentile on those national tests we used to have to take, and I was a card carrying member of MENSA. When things became fogged I was scared. Eventually, when I learned what was causing my immune system to attack my neurological system, and started making changes, the brain fog lifted. But, not without lasting consequences. I’m a little slower than I was before that particular MS symptom. In truth EVERY MS “flare” causes lasting damage. The person may not notice the differences after the flare clears, but that’s because the human brain is incredibly resilient. It compensates for, and heals, damaged areas. Many times the symptoms seem to disappear completely. But, sometimes, especially in the case of brain fog, there are subtle, but lasting, symptoms only noticeable to the person experiencing them.
In my case, one of those symptoms is difficulty sight reading music. Along with that is a difficulty remembering music. I need to look over my band music every couple of days to keep it fresh in my mind. I don’t necessarily need to practice that music, but I need to look at it. If I go to long between reviews, it’s like I’m seeing it for the first time. I don’t understand why this is the case –it’s and effect that’s limited to reading sheet music. It doesn’t happen with anything else, not even foreign languages I’m leaning. Only sheet music. But, the result is that I sight read poorly and I always take my band music home with me between rehearsals. I play several instruments in three different community bands. That’s a lot of music to remember, and even more to have to sight read every week. My folder goes home with me so I don’t lose anything.
A few years ago, I was playing alto sax in one particular band. I wasn’t fond of the director, but continued to go because I was the only alto sax. If I left, the part would go uncovered. One week I had to miss rehearsal because something triggered an immune response and my balance was effected. As a result I spent that particular day unable to walk through my own house without holding on to a wall, counter, person or dog. I was also unable to speak without stuttering. My speech was effected enough that my husband and kids struggled to understand me. I wasn’t awful, but bad enough that I didn’t feel comfortable going to band. My husband would have happily driven me to rehearsal, carried my sax into the band room, and then come and walked me to my seat for rehearsal. If I’d asked, he also would have sat next to me for the two hour rehearsal, in case I needed anything. But, I try not to ask him to do those things unless it’s vitally important, and with the concert three months away, it wasn’t. So, I emailed the director and told him I’d have to miss rehearsal.
When I went back, he decided to use me as an example for his long lecture on not taking folders home if you weren’t going to be there the following week. He told me, in front of everyone, that if I knew that morning that I wasn’t going to be there that same evening I should have driven my folder over and dropped it off for other people to use.
I will say that in general, he had a valid point. However, in this case, I had been the ONLY alto sax player for TWO YEARS under the previous director. In that time there had never been another alto player, and never been an issue with me taking a folder home. I only had the first part folder. There was a second part folder, or should have been, in the folder box. If it wasn’t there, that’s was on him, not me. I played first part. But, regardless, I was physically unable to get the folder to him before rehearsal. I was unable to drive, and this particular band is a good 45 minutes from my home. I could have asked my husband to take the folder over when he got home from work, but he wouldn’t have even gotten there until rehearsal was almost over. I thought about all this, stressed over all this before I even decided not to attend rehearsal that evening.
What really upset me, though was that he called me out over it in front of the entire band, KNOWING I have MS. I make sure that all my band directors know about my autoimmune disease, and that sometimes it can effect my ability to play. It doesn’t happen often,, but when it does, it’s a noticeable thing. When I emailed saying I wouldn’t be at rehearsal, I was honest about why. I told him that my balance was gone and I wasn’t able to walk.
After rehearsal that day, I talked to him and explained (again) why I had missed the week before, and why I was unable to get the folder to him before rehearsal. His answer was that I shouldn’t take the folder home at all then. I used that as an opening to educate him on my “adaptive needs” regarding music. I told him that if it was a problem I could copy the music and simply leave my own copies at home so I wouldn’t have to take a folder home. He told me I couldn’t do that because of copyright and licencing laws. Okay, that’s his call.
After that discussion, the director started asking me at the end of every rehearsal if I was going to be there the following week. My answer was always the same, “I’m planning to be here, but MS happens.” I left the folder, and struggled with looking at the music anew each week.
After two or three weeks of this, I decided not to go back. I still had my other two bands. I played clarinet for one, and flute for the other. Band members emailed me asking why I quit, but I was uncomfortable telling them. Not because I didn’t want to disclose the MS –I’m open about it and never try to hide it. But, because I didn’t want to talk badly about the new director. People knew him, some liked him, and I doubt he intentionally pushed me out of band. It’s more likely that he was ignorant and unaware of how much an invisible illness an effect a person’s daily life
I’m back to playing for three bands. The current three directors are great. They don’t make an issue if I have to miss an occasional practice, and they don’t care if I copy music for my own use at home. I give the copies back at the end of the season, so we’re not breaking any copyright laws.
MS isn’t always invisible. But, diabetes, heart disease, mental illnesses, and the like are, and it’s impossible to know if the person in front of you is dealing with an illness you aren’t aware of. I’ve learned that most people aren’t as comfortable as I am telling others about their illness.
