Tomorrow begins for me what is known in the arts community as 'Hell Week'. If you've ever been in a performance in college or community theater you know what I'm talking about. If you haven't, Hell Week is the week before the scheduled shows when you rehearse on Monday, Tuesday, Wednesday, Thursday and then perform Friday, Saturday & Sunday. Aptly named, no? For singers this is truly hell because you want to rehearse but also preserve your voice for performance. For theater, this is more of a technical time to get the stage work and technical work in sync and polish up dance numbers, costuming, and curtain call staging.
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! ================================================================================================================
Post Concert Update: Hell week and three fabulous performances have come and gone and I'm still in one piece! There was only one challenge which came to light at Thursday's dress rehearsal at Trinity Cathedral.
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.
Friday, November 5, 2010
So I have good news and bad news. The good news is: I'm officially retired, effective yesterday! It's kind of a moot point since I haven't been to work since October 1st. I didn't feel well enough to go back after the angioplasty and I've used up all my FMLA leave. No sick or vacation time left, and without FMLA leave my division would terminate me for being absent without leave, (oh yes, they sent me a certified letter to let me know they would not extend FMLA and I had to return to work or be terminated - such compassion.) So rather than leave under those circumstances, I resigned and put in my retirement papers.
Then I had a birthday. This falls under the bad news heading. I celebrated by spending the day filling out the on line application for Social Security and SSDI (Social Security Disability). I have been dreading the process and my fears were well founded. It took me 5 hours to do the on line forms. They wanted information going back 15 years! Don't we all have that at our fingertips? By the time I was done I went to sleep! (But I did celebrate the next night with a great dinner with friends and a Sunday brunch the next day.)
I also applied for LTD (Long Term Disability) through the insurance I have. Waiting to see how that will go. Completely different set of paperwork - grrrr! (Bad news)
Monday I planned to get out and do errands and then go to rehearsal. Nope. Spent the day sticking close to the bathroom as bowel problems decided to flair up. Drank a lot of water, did laundry, and took Imodium - isn't MS fun? (More bad news for those keeping score.)
On Tuesday, November 2nd, I worked at the polls for the mid term elections. We had a very good turnout but I'm just disgusted with the results around the country and especially in Florida. Floridians elected a thief, crook and liar as their governor. I'm sorry but I can't comprehend this. Too disgusted to even talk about it. We are doomed. (Very very bad news)
Then on Wednesday I get a letter from SSDI asking me to contact the local office to "discuss my earnings record." Huh? They have my earnings record - they sent it to me! But I tried to call all day and of course, could not get through. I finally call the 800 general number, which I was advised by many NOT to do, but there was no choice. The woman I spoke to said they want documentation of my last 10 years of earnings. How bizarre is that? First, why not say that in the letter? And second, they have my earnings records as reported on my W-2 forms every year. But OK, I dug out all my tax returns and pulled off the W-2s which I will take to get photocopied and then mail in to the local office. (Frustrating but not too bad.)
Thursday was a fun day. In the morning, the owner of the wheelchair repair store came by to trade me two scooters for two batteries for the power chair my neighbor Bob gave me. That actually went well and now I need to learn how to use the chair without killing myself in the process. The joystick controls are nothing like my scooter. I'll need a lot of practice. (Used it to take out the garbage tonight and went v-e-r-y s-l-o-w-l-y to make sure I didn't topple down the stairwell!) Then I was off to Boca to meet my friend and her Mom for lunch. But in my haste, I didn't notice the radar trap set up on the road leading to the highway and bam - they got me. Big big speeding ticket. But the cop was nice about it and truth is, I was speeding. I'll try and get it over to the Ticket Clinic and pay them to get it dismissed. Welcome to Florida. But lunch was lovely so that was a draw.
Now it's Friday and all my good intentions for the day, (go to the gym, do some RFBD reading, get my nails done, go to the Ticket Clinic, get those photocopies made) went out the window when my body decided nuh uh - you're not going anywhere today. The overwhelming fatigue hit me like a ton of bricks. Spent the day watching TV and napping. At 6:00 my 82 year old neighbor rang my bell to bring me dinner she had cooked! How did she know I really needed that today? And how depressing that I had to have an 82 year old take care of me? It's 10:30 pm now and I finally feel better. Well, as Scarlett said, tomorrow is another day. (Score: Good news 1 - bad news 6)
So my retirement days have not begun well, but I guess not struggling to get to work on time each day is the big bonus. I'm now officially done complaining and will try and remember to count my blessings and be grateful and positive. I'll really try but I may slip again; I'm still a work in progress.