He also said that the "suddenly a lot of things are just plain over" effect is common among MS patients especially, and also with other diseases. I'm having much less trouble with "I can't walk as well" and "I can't crawl around the rigging and do all the theater tech stuff I used to" because that was just stuff that I would do. It was gonna happen eventually, anyway, and thank heavens I've got help so all I have to do is point and say "Hang it there" instead of doing it myself--which really, when you think about it, ain't all that bad. Now, playing the organ, something that's also on the "maybe you can't do it anymore" list, that's different... the organ has always been tied up with what I feel that I am.
Which, of course, it both is and isn't.
I'm going to seek the path of "relearn how to play the instrument" before I take the "give up playing the instrument" path. Do some other gentle work on my legs, maybe. (My wife would chime in here, "MAYBE???" OK, dear, "Definitely.")
So, in the meantime, I'm going to take a little time and work on "accepting 'doing less,' at least for now." I'm going to do some stuff that's both symbolic and practical: get a haircut, take apart and rebuild my composition studio, something that I've been promising myself as a "summer project" for at least three years: something that I couldn't do in earlier years because I had "too much to do," and it was too big for one person anyway and I had no help. But amazingly enough, this year, I have time and mental space to do it, and miraculously, I also have a friend who felt like he needed something to do and is very kindly helping me out.
Funny how that, at least, worked out perfectly. They say that the Lord giveth, and the Lord taketh away. Sometimes, it's the other way around: the Lord taketh away, and then turneth right around and giveth.
So, the score so far for our hero: Life, as you know it, over? Yeah, probably. Is that bad? Quite possibly not, but I'm still processing. Hope? Yes. Resolution of all those "sort of" issues? Not yet. Better? At the moment. And at the moment, that's good enough.
4 comments:
Robert,
I am glad you have a better perspective on this. Good job!
Take care,
Anne
Transitions take time but it sounds like you are taking it in stride. I knew it wouldn't take you long to think of a new plan.
Robert,
I'm just now getting caught up with some of my blog reading and wanted to share with you some of my thoughts upon reading the "Farewells" post. Keep in mind that we are both musicians. ;)
Two weeks before the doctor's appointment where I mentioned some odd numbness and tingling in my left hand/arm, I performed in the annual studio recital following my kiddos. That year the selection was Debussy's Arabesque No.1, a beautiful flowing work which has a lovely rhythmic "tinkling" sound at the beginning.
I was horrified. Notes were not coming out as I had planned. I missed complete notes which didn't sound in the left hand and the rhythm was just plain choppy. Even as the teacher, with an audience of whom very few would have known the difference, I had to fight back the tears. I was so completely embarrassed. I later listened to the recording and the performance really was as disorganized and messy as I thought it was at the time.
The numbness grew up my arm and over my shoulder blade before I went back to the doctor. She sent me for an MRI of my neck since I had described how I had bumped my head/neck pretty hard while swimming laps at the local pool. Of course, I thought it was a "pinched" nerve. A month later I'm consulting a neurologist and a few weeks after that (and after the LP results came in), I was hooked up with 5-days of Solumedrol.
Still didn't have a definite diagnosis yet, but it was a probable MS or transverse myelitis. We had to wait and see. A month later the fingers on my left hand had continued to get weaker until finger 4 (ring finger) had become a limp noodle. It could not resist even the slightest amount of pressure. I also could not press with it. Finger 5 was threatening to quickly join the weak and useful club.
I demanded to know what we could do about it when talking to the neurologist. He was not "that" concerned but I reminded him that I'm a musician, piano and french horn, and I NEED my fingers to work. So I was referred to a hand specialist who worked with me for over two months to rebuild neural pathways to feed the muscles of that hand and fingers.
We also worked on strength in the arms as well. By this point, my left arm had become so weak that I couldn't hold my horn up using my arm alone. I had to rig a yoga strap onto the instrument which I strapped over my shoulder and sat on just like a bassoon strap to take much of the weight. Gotta be clever if you want to continue doing what you love.
I'm sharing this because I understand the fear involved with not being able to sit at your instrument and simply play with ease. It was so very frustrating to only have the endurance to play the piano for 10 minutes at the most. How humiliating is that for someone who once practiced 6-7 hours each and every day during college?
But at the end of my time with the therapist, I had regained strength and coordination in my hand. The difference was impressive and I still try to do some of the same exercises to keep the neural messages getting through.
This past winter/spring I also started doing physical therapy to work on my balance, gait, strength, and overall conditioning. The result (before this recent relapse) was amazing. I wonder if some specialized work on your lower body would positively affect the control you have at the organ. I know that my sense of space was improved in addition to the issues already mentioned above.
It's wonderful that you have so many musical outlets, ie. composing, performing, etc. But I imagine that being the master of the organ ranks up there in importance and satisfaction. Don't give up mentally or spiritually just yet.
con't below
For me, my technical skills and sensitivity of touch are not quite the same. Several of my finger tips are numb. There is a slight delay between when my brain thinks a phrase or combination and my left hand decides to execute it. It have to concentrate much more than I did before to accomplish the same results. It can be very frustrating, but of course any listeners would never know.
Anytime you wish to talk more about the performance aspect of your career, please don't hesitate. I can empathize with the challenges and fears.
It's good to hear that you are doing a bit better mentally. Hang in there. It does get a little easier as time goes on (that is until the next big relapse hits which puts you through all of the fears and anger all over again).
I hope that you get a chance to enjoy your summer and that folks at work respect your doctor's orders to relax. Hang in there.
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