Even before I had MS I dreaded hell week. Everyone does. When I was doing musical theater it was long days, and boring down time but at least you got to sit down when you were off stage. But a choral singer is always on the stage and rehearsals start and stop for various adjustments to balance the orchestra, logistics of getting on and off stage, etc. So the rehearsals actually last a lot longer than an actual performance. If the conductor remembers, he'll seat us while working with the orchestra, but often he's too occupied to think of that and we would not seat ourselves without his direction - it simply isn't done. Thus, the chorus is standing for most of the rehearsal. By the time you get to that last performance you are just ready to collapse and all the audience energy coming towards the stage like a freight train is needed to bolster you up.
How do I deal with this? Well, for the first 4 years after my diagnosis I was determined to do exactly what the rest of the chorus did - and as I always did. But last year I had to make a decision. If I was going to continue as a member of this chorus I was going to have to play the MS Card and sit as much as I could until the actual performance. To get through hell week I'd need to conserve my energy to be able to stand when it counted.
This was very depressing for me. At the time I wasn't sure why this was so hard. I'd already made many changes in my life to accommodate my MS and while not all of those were easy, I seemed to be having a rough time with this one. I think though that I have now figured it out.
Music has always been such an important part of my life that even the small change of sitting in a rehearsal when others were standing signaled the beginning of the end. It brought home the fact that I have a progressive illness which will not get better - the best I can hope for is to slow down that progression. Yes, there are days when I'm more hopeful and yes, my energy is better since my angioplasty, and yes, maybe when I start on the next drug in this never ending parade of drugs I'll have even more stamina, and maybe, maybe, maybe. . . But for now, for this week, this Hell Week, MS shows up and smacks me in the face, very publicly, and announces that some day soon I won't be able to participate in the activity that I love to do more than anything else in the world: making wonderful, quality ensemble music with people way more talented than me.
The first program of the season is Haydn's Creation. Luckily for me, the chorus will be seated when the soloists are singing and we'll stand only for our sections of the score. I can also place a chair in front of me for security and balance if I need to grab it while standing. But the next performance will be the Verdi Requiem and the chorus has a lot more to do. Will they have us stand the whole time? If so, will I be able to do that? Should I accept the offer to sit in performance while others stand? Very kind of the conductor to offer but I'm keenly aware that it looks unprofessional and I hate that.
So this thing called MS has hit me hard this week. One month after the angio and I'd really hoped not to have to worry about this for the concert. Plus, we're performing in some new venues and I don't know if there will be stairs to negotiate. But as my friend loves to say, "It is what it is." I know that and I accept it but I sure as hell don't have to like it. And right about now I really hate it. But I also know that once the lights go down and the conductor raises his baton, it will all fall away and the music will transport me as it always does. Thank you Papa Haydn! ================================================================================================================
The chorus administrator has placed me smack dab in the center of the first row. Normally not a problem for me as this is my usual spot - but this time the chorus was up on 7 tiers of risers and the first row wasn't on the floor but on the first tier so we were above the orchestra. This meant that there was no space to put my 'stability' chair or even to use my black walker.
Second problem was that the rented chairs that came with the risers were pretty flimsy plastic jobs and I could not stand up from those chairs, which were sort of slanted back. They were not good for singers and everyone complained about them. When I told them I couldn't stand they graciously said, "No problem, just sing seated."
Well, very nice of them but the soloists were just to my right and I'd be center stage, sitting while everyone was standing; in my mind it would be very obvious and distracting to an audience. I just wasn't comfortable with that. I asked to be moved to the end, but of course, then I'd be out of my section so they said no. I was assured that the next two performances would not be a problem for me since those venues had a different stage set-up.
I was ready to opt out of this performance and help at the box office when I had another idea: I'd ask to be switched with the alto at the end of my section (next to the tenors). This would put me more to the left side of the stage away from the sight line when the audience was looking at the soloists. I still needed permission - we cannot move ourselves - but Carole, our administrator, said "sure", and so a little creative thinking had me seated for that entire concert but without feeling as self-conscious as I would have had I been center stage.
So instead of being depressed that I had to sit, I felt good that I'd found a way to still do the performance even though it marked a new 'first' for me. I'm coming to terms with my abilities and disabilities and I guess it's an ongoing processes. Welcome to the wonderful world of MS.
