Sunday, March 9, 2014

Decisions born out of a Brahms concert

Thursday I took on the project of cleaning the kitchen and the floors.
I was wasted at night, my hips aching and pulsing with pain.

Friday I drove around for errands, then came home and cooked for Shabbat (together with Robert who cooks a lot).

I was on my feet all day, and was *totally* wasted at night, 
and in much more pain, from both hips.

Shabbat I could not get up. I missed shul (synagogue). Too much pain.
We hosted a few people, and I got up and dressed for that.
After our guests left, I resumed my position in bed, and slept until Saturday night, when I went out with my friend (a fellow musician) to a concert, played by the orchestra I played in for 13 years.
(maybe you know what is coming next?)

It was an all Brahms concert. I can't tell you how much I love playing Brahms symphonies. I haven't played one for at least 20 years, because this orchestra is a chamber orchestra, and it was too small to play with the instrumentation that Brahms called for.

Thirteen years I **yearned** to play Brahms.
Tonight they were combined with an orchestra from Europe, and played, among other things, Brahms 2nd symphony.

(this picture on the right is from my master's recital at New England Conservatory, in 1995, months before I moved to Israel. The harp is because I chose a piece to preform that is hardly ever preformed. That piece is Brahms "Four songs for two horns, harp, and women's choir". I chose the program, I invited the harpist, 2nd horn, and a women's chorus with a friend of mine to conduct (she was the top conducting student at the time). They did it voluntarily, for the fun of playing music. I had no money to pay people, and that is what we did in music school, ask for recital favors, and go out to a pub afterwards and buy everyone the first round. :) I alone put together my entire recital program, and it was so unusual that almost the entire conservatory came. Standing room only, I am serious. (Mom and Dad, do you remember this?)

When I was a teenager, I learned Brahms 2nd symphony with Leonard Bernstein. I *KNOW* that piece. I can see the score in my head as I hear it. I played it with maestro Bernstein at the Tanglewood Institute in Massachusetts, a beautiful oasis of music learning and teaching of the highest order. It is one of the most wonderful, beautiful places on earth. But we are always tainted with our experiences of a place.

Back to tonight. Sitting next to my friend through the first half of the program (all Brahms), I was in so much pain I could barely concentrate. My hips, my mangled nerve endings all over my thigh.

For the second half of the concert (the 2nd symphony), I moved away from my friend in order to sit in the way back, and stand if needed.

It was played wonderfully. My memories flooded in about all the times I had played that symphony. Harmonies filled every cell in my being. Body and soul were longing to be on stage. Brahms knows how to write for the horn section. Extraordinary. Luscious.
I know Brahms. (I actually *did* have a great uncle who was alive when Brahms was conducting his own works! So, it's in the blood. :)

I made my way back stage to see a few former colleagues, before making my way home.

Arriving home, I was greeted by Robert, I finally let it out. I cried my eyes out.
THAT concert was taken away from me. My orchestral career was taken away from me, stripped of everything I was before NF. Robert suggested maybe I play a little, stop before I get into pain, just here and there a bit, just to remind myself of my playing. Remind myself of my beginnings, of a hot-shot kid in Juilliard pre-college program.

Juilliard recital, circa 1986. As I recall, it was the 2nd horn concerto by Richard Strauss.

But, I know that would be awful to me, because I know I would sound lousy, and I couldn't handle that. And for what? I can't play with anyone, even if I wanted to. I am not good enough any more to get back into music, and, oh yeah, I am in pain. While sitting/standing at the back of the balcony there, trying to ignore my aching, burning hips, I said to myself "THIS is why I am not down there on stage, where I belong".

Well, after a cry, hugs, talking, and more crying, Robert reminded me that my talent is quite alive still, just being expressed differently. I am a writer with a book on the way. There is a publishing company waiting for me to give them some beginning material, and I am finally doing it. I have a wonderful teacher in the US, who I learn from both on-line, and on coaching phone calls- conference calls with the other people in my class. We hear each other's progress, their writing, and help each other. They gave me a unanimous "thumbs up" for my title and subtitle, and a back cover blurb that is intriguing and drawing-in. My teacher said she wants to open the book and dive into it, after hearing my back cover.

That's all great. My third career. Musician, doula, author.
Oh yeah, somewhere between musician and doula would go "Survivor".
Survivor of the "Flesh Eating Bacteria". Oh, and also "The only person in the history of the planet since the beginning of time (I venture to boldly say) that has had the rare one-in-a-million Necrotizing Fasciitis, and, in the same year, the extremely rare, one-in-a-million, also, orthopedic tumor disease, Pigmented Villonodular Synovitis (PVNS). How's -that- .

What has all that impressive medical stuff left me with?
Constant pain, loss of the first two careers, ....and a path toward the third.
And, it is teaching me the ability to mourn (lump in my throat)... mourn the other two.

(I have so many memories... more than half my life I was a horn player. I played in Disney World, too. Now *That* was a fun gig!)

the horn section- all female- at Disney world, rehearsing.

lunch with Theodore Bikel at the "China pavilion",  Epcott center, before he preformed one of our Broadway revue shows.

me and the lovely, old-but- (then) still-glamorous Carol Channing. I still have a "diamond" ring, of which she threw hundreds out to the audience during the song "Diamonds are a girl's best friend". Good times.

OK, that's it for now with the Sarah's career tour. I figure it's already overstated to add my pictures of me with Marvin Hamlish, me with Nell Carter, or with Betty Buckley from "Cats". You get the picture of the gig I had there at at Disney. Bad pay, but a FUN job! We lived in caravans, the village owned by Disney, with other Disney performers... the village was called.... Snow White Village. Yup. :)

~~~ Back to our regularly scheduled blog post... which is about to take a radical turn:~~~~

Robert suggested that if I play horn, just a few minutes here and there, without setting myself up for a rigid routine, maybe it'd be like a prayer. It'd be a slow way to get back into shape with playing, and maybe, just maybe, gain some fulfillment from it. It's a nice idea, but I don't see internalizing it. Anyway, not now.

The solution? The best one we (Me & R) can figure out for the immediate future?

I am going to call Ichilov hospital tomorrow. They were supposed to call me back for a hip-replacement consult (four months ago? ...something like that), and it seems I have dropped between the cracks there. I let it happen, too, not putting myself in the position to chose what step is next before I knew what that would be.

Well, I am going to reach out for help finally. Maybe with these surgeries I have been putting off, in favor of raising my pain meds, I now see that the conditions only get worse. Now I have a high dose of pain meds (100mmg of Fentanyl patches... I started the Fentanyl two years ago at 12mmg.), *and* more pain than anyone should have to suffer, just from cleaning their kitchen and cooking for Shabbat.

one (old) patch of 12mmg, and today's patch of 100mmg. Fentanyl is a type of morphine.

I am going to schedule an appointment with my hip guy.

I am going to schedule surgery to fix my right hip, which is impinged, and comes out of the socket, making nerves fire out-of-turn, a zillion times a day.

After I recover from that, I am going to (next year? Sooner?) schedule a hip replacement for the left one.

I want a better quality of life.

And this all *terrifies* me.
Things go wrong in surgeries. I know. I am not a wonderful, perfect candidate for a hip replacement. You see, the new hip has to grow and fuse together with the bone, tissue and muscle that exists at the site already, in the pelvis. Well, I am missing flesh around the hip and pelvis, part of muscle, and part of ligament, from the NF. My skin graft is precarious, and may cause the hip replacement not to integrate, not supported with all the tissue it needs to do so.

Then what?

Then I have no hip. Yes, we can try again, we can pull muscles and such together around the implant, but the bottom line is...
What if it fails?
.... leap of faith....

I'll call for the consult. It's time fix my body. I talk so much about "tikun", fixing souls, fixing the world. Well, maybe we should fix Sarah so she can do more of what she believes she can do on this earth. Give more than she can presently give.

I deserve a life with ...less? pain.
It's time. The medicine is slowly poisoning me. Sleeping so much more, increased migraines, hand tremors (getting worse) all sorts of other unsavory side effects, as well.

I am going to call. I'm going to take the first step to change my life. Oh God, if I could get off these medicines, rid my body of the poison, I can't imagine. I no longer remember how that feels.

Now, I have gotten this all OUT. Written, permanent, hopeful, I feel I can go to sleep.
After all, it is 2:30 am. And tomorrow..... is a new day.


Oh!! - I just found another picture I had been looking for! This is what I chose for the encore of my master's recital at NEC (New England Conservatory)...

Alpine horn trios!!

Too bad it's blurry, but I'm on there on the right, my friend Susan in the middle, and a man named Phil Drinker on the left. Phil *hand made* those Alpine horns, all from one, huge tree. Those, and the wooden mouthpieces that go with them. I still have the mouthpiece he gave me. I can play Mozart, using that wooden mouthpiece attached to a 12-foot garden hose. Ha! Come on over here if you don't believe me.
Playing them is very similar to playing french horn, but without valves to change notes. It's all air, lip & face muscles...
One of my favorite teachers ever, Daniel Katzen, inspired me to play the Alpine horn.

Oh, memories. Seems so long ago and far away. 
Good thing for pictures, or I wouldn't believe I was that person.


  1. Sarah, after such sadness, it starts to seem hopeful again. And can I just say Robert is so amazing. At least you write about him like he is. Calm and compassionate and thoughtful. I didn't post when you asked about what we would like to read more about in the book, but I did want to comment that I would like to hear more about how all these problems affect your relationship with Robert. Good and bad, if you can. Hearing something from him about how he feels your relationship and you have changed would also be interesting. Hugs, and here's to a hopeful moving forward! x

  2. Sarah dear,
    Hearing your story of past music is lovely. Entertaining too. One loses their old self, a new personal birth happens as we are needed differently by G-d (H’Shem). You are blessed by having Robert, a beautiful soul that is telling you the truth, you can play for your own joy, you don’t have to ‘be a musician’ to enjoy playing…
    You have been growing so much and been put to the test. And more than that, you have been granted a new opportunity to live after that fatal illness. You can’t expect to have the same life, you have been gifted with something that is transformative. Can you imagine a butterfly grieving her life as a caterpillar?

    1. Shulamit, thank you! No, I imagine a butterfly does not at all mourn. I imagine they rejoice at the transformation, if they feel anything. Maybe that is just us putting our feelings on butterfly's, because we are so happy to see that transformation. I hope some day that I will rejoice in my transformation. But, unlike the butterfly, I do mourn. Not as much as I used to, at the beginning of this mess, but certain things make me mourn.
      Thank you, also, for your beauty inside and out, and your grace in mourning and changing you you were (a dancer) when your sickness hit.

  3. Good for you, you have made the decisions. Positive thoughts will help you get through all this. Then you can focus on writing your book. All the best.

    1. Edna, yes, it does feel good to have made this decision. Now I have to pick up the phone. Sometimes the receiver is *very* heavy.......

  4. Yes, you deserve a life without pain (or with much reduced pain) and I think the hip replacement, whenever that happens, will help you get there.

  5. Wow, Sarah, that is such a moving post. I always send you good wishes and prayers. I like Robert's idea of incorporating making music into your life in whatever form or dosage your body allows you. Blessings.

  6. Sarah, such a hard path to follow, but I am sure it is alight with song and prayer and love that is ever-present in your life. Yes to big scary challenges, to growth both physical and emotional. You are not in this alone.
    Love, Miriam

    1. My dear Miriam, tears spring to my eyes reading what you wrote for me. Thank you. And when you are in the world, I know I am not alone. My Swooper. :)

  7. Keep the hope going strong. May the hope become reality: no or tremendously less pain. You, dear Sarah, who does so much good while in such pain should be allowed to do so much without the pain and I know that your freedom from pain BE"H will enable to do even more good! May Hashem bless you with that ability and may Hashem's light shine from your continued kiddushei Hashem.

  8. Sarah, you were a fantastic musician, and those memories are wonderful, though bittersweet. Life brings unexpected changes. I sorry for all the pain you had to endure, but I am inspired by your ability to move forward, on a new path, and with so much hope. You are an inspiration to others.

  9. Susan , thanks for your supportive and kind words. It was great to be at NEC together. You are also a great horn player, and always compassionate to be around. Let me know when you are coming here... we'll do duets.

  10. You are so lucky that you have all these talents...and I know the more you have the more there is to give up and mourn but hopefully things will get better and let you focus on being you. We are all sending positive vibes as you deserve a smoother ride! If you ever decide to start doodling on the horn we are 3 and need a 4th for horn quartet...good musicians but VERY amateur.

    1. Tzippi , your group over there is one that I often think of when I think about picking it up again. Ashdod is not a close ride for me, though, and thus far, distance driving for me is out because of sleepiness from the meds. But, I do think of your trio wanting to be a quartet. I'd like that, too.

  11. I really like your posts on your blog, which I read for some time. I admire you for your talents, determination, courage, perseverance and even more for you be a person with a really good heart.
    I wish you much health, happiness and strength, you're a admirable woman.

    1. Aryeh, such kind words. Thank you so very much. It really touched me.

  12. Your strength and your courage NEVER cease to amaze me. You are an truly an inspiration. (You also make me jealous as hell since you look as stunning today as decades ago when those pictures were taken).

    Thoughts and prayers are (as always) with you....


    1. Thank you, anonymous Me. I appreciate the support and thank you for the compliment!