Adapting to Life with Multiple Sclerosis
On Saturday, I had a freelance gig. An easy job with a 3-hour rehearsal and an afternoon performance. Those are the types of playing jobs I really enjoy. Low pressure and good pay.
On this particular job, I encountered another horn player whom I had not seen for quite awhile. Really quite awhile, like two to three years awhile.
We caught up on each other’s lives. He had been absent from playing for five months this year due to a herniated disk in his cervical spine. I asked him all sorts of questions about what the herniated disk felt like, what treatments he underwent, and most importantly - did he need to have surgery?
It was amazing to hear how long it actually took for his HMO to bump-up his treatment regimen. Three long months before something stronger than Ibuprofen was recommended for the excruciating pain. Ouch!! Eventually he was given steroids and narcotics before being sent to consult with a spinal surgeon.
Our conversation eventually came around to - “I have Multiple Sclerosis.”
I didn’t know that. I’m so sorry,” he says. “Did you know that ‘GS’ has MS?”
“What? No way!! I haven’t seen her in forever.”
“Yeah. She was the top freelancer in town before it just became too difficult. Eight or nine years ago she was struggling so much that she simply stopped playing.”
Damn. Another USED TO BE...
One morning after I was officially diagnosed, a woman at the swimming pool introduced herself to me. She has MS too.
“I used to be a cellist, but I can’t control my left hand any longer.”
A friend of mine who is a school teacher told me...
“I used to perform much more, but now I don’t have the endurance.”
When thinking of famous people with Multiple Sclerosis, I am drawn to Jacqueline du Pre, the extraordinary cellist whose career was cut short by MS.
Here’s an excerpt from a NYT article published after her death in 1987:
The first signs of Miss du Pre’s illness appeared when she was 26 years old and at the height of her fame. “My hands no longer worked,” she recalled in 1978. “I simply couldn’t feel the strings.” She withdrew from concertizing for one year, then returned, to mixed reviews. The diagnosis of multiple sclerosis followed shortly, and Miss du Pre retired.
By the mid-70’s, Miss du Pre was virtually paralyzed. She could no longer dress herself, nor stand unaided, nor travel without a great deal of planning. She put all of her energies into two major activities - teaching, whenever possible, and working for the cause of multiple sclerosis research.
“I had to learn to reconstruct my life,” she said in 1978. “But I have found a great deal to do. I go to concerts and see my friends. And the music is still alive in my head.”
“I had to learn to reconstruct my life.” Those are powerful words.
How have you reconstructed your life? What did you ‘used to be’?
As for me, I used to be much more shy, reserved, and private. MS has taken that from me, for which I am truly thankful.