Monday, August 11, 2008

"I used to be...."

On Saturday, I had a freelance gig and encountered another horn player whom I had not seen for quite awhile.

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.

“Prednisone is nasty stuff,” he says.

“I agree!! Any time I’ve had to use steroids, I curse them and thank them at the same time.”

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.

Read More..

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.


  1. There are things that this disease has stolen from me that makes me angry, but in the same light, there are good things and ideas that I could honestly say that I would not have ever thought of or experienced, in the way my life was playing out before.

    Its such an odd thought to actually appreciate the forced changed in outlook that this disease can cause. Not loving the disease, but at least taking comfort in some of the lessons that it is teaching me.

  2. I saw the movie version of Jacqueline's life, which only highlighted the MS issue in the last 15 minutes it seemed. I'm glad you are able to continue to say, "I am" versus "I used to be" remain a truly remarkable person.

    Linda D. in Seattle

  3. I used to be a person who spent most weekends at home - now I go on walks and do other things while I still can.

  4. Serina, it's good to 'see' you. It's the appreciation and comfort found in any experience which feeds us emotionally. I continue to need that.

    Linda, you are so good to me. Thank you. When I saw the movie, I didn't have a clue about MS. I hadn't gone blind from optic neuritis. I didn't even know her story yet. I just knew that she was an amazing artist who died young and had been married to Daniel Barenboim.

    I scene in the movie which got me was the one where Hilary was in a flute lesson and her teacher kept stopping her and yelling at her. By the time she played in front of a jury, she couldn't!! That scene brought nervous giggles and tears to my eyes because I lived that experience with one of the greatest teachers I ever had.

  5. I do things while I can too.

    But take this weekend for instance. After returning home from the concert, I declined going over to my Sweetie's for a cookout we had planned with friends. He supported my decision, especially since I was in the "I can't think or make a decision, I really need a nap" mode.

    Then on Sunday, I stopped for an afternoon nap and slept hard for 3 hours. Wow, where did the weekend go? So fast.

  6. I don't know how much I say, "I used to" I'll ponder that. Was just discussing this w/partner today...I don't dwell on what I used to do, I used to dance the night away, but I wouldn't do that now, MS or not---I hope I find the "used to" irrelavent.