|A flute and a piccolo|
by Jean Lewis
Your brain controls many functions that contribute to your personality: cognition, emotions, sensation, muscle coordination. Brain tumors can impair all of them. You want to resist, to keep your identity, but it’s a struggle to mount a defense or stage a recovery.
I've already experienced a few chapters in this story. In September, I started to have problems with short-term memory, particularly dates. In the first half of November, I lost the ability to stand up without assistance. Then on Sunday, December 23, I discovered I could no longer play the flute; after fracturing my left wrist, my hand is just too weak to both hold the flute and do the fingering. This loss really hurt. I have been a flautist since I was 10 years old, playing music had always been a source of pride and pleasure, and my flute has a particularly nice tone. When Karen Creech came by to watch Battlestar Galactica with me, I told her that because I couldn’t move my fingers, everything I played would be pretty boring (a single note). We laughed immoderately at the understatement, though it is sadly true.
I texted Matt the bad news Sunday while he was out doing holiday shopping, asking to talk to my social worker immediately; that person did call and tried to console me. Later that evening, Matt and I had a long talk about the flute, searching for a positive spin. Perhaps just the fact that I made the attempt was good news? After all, it was the first time I had tried to play since the summer. And my fingers are actually more nimble than they were in November, as anybody who has received my texts can attest. Maybe I could improve with practice?
Or maybe not. The problem is that the left wrist is critical for playing the flute: it not only holds the instrument’s entire weight, it's at an odd angle, and the thumb and first two fingers must hold the keys shut tight, or all of the notes will be out of tune. Right now, my fractured left hand is far too weak to do either of those functions.
I told the hospice staff what had happened, and on Wednesday, the day after Christmas, a volunteer massaged my left hand. It felt good, conceivably it could actually help. That same day, the social worker came to see me in person, and I asked about physical therapy (PT). She said she would need to submit a special request. Even though I cannot stand by myself, PT was not part of my treatment plan; most people do not go into hospice care expecting to get better. The request will still take a couple of weeks to process, assuming eventually approved.
I had one other idea. I wanted to visit an SF music store, Sunset Music Co. or Lark in the Morning, and get myself a piccolo. A piccolo is a flute that plays an octave higher, but much lighter, with easier fingering. The truth is that an ebony piccolo had long been on my wish list, but they are so expensive I did not mention it. This could be my big chance! All that was required was to make arrangements to drive me and my wheelchair to the store, and then power on past the sticker shock. We made indefinite plans to go, sometime after Christmas.
|PanPipes from Karen!|
And then, as has happened so often in the past weeks, Karen Creech came to the rescue. On December 26, after my massage and the visit with the social worker, Karen came by with a present: Pan Pipes! I tried a few notes, she said she was going to buy a set for herself too, and we joked about forming a band. This in itself was a boost, but a bigger improvement happened when I told Karen I coveted an ebony piccolo.
A San Franciscan, and a musician as well as an attorney, Karen knew the ropes; neither the transport logistics nor the price were the obstacles we’d feared. Union Music, down the hill from the hospice on Market, had an ebony piccolo for rent, and they agreed to hold it for us. All we needed to do was ask the hospice staff get me up and into my wheelchair, and then take a ten minute walk down to the store.
|At Union Music, trying the piccolo|
Of course they let me try playing it before renting. The fingering was easier then on my flute, and I could play more than one note, if not an entire tune. So it’s not a slam dunk, but it’s possible I may play again. We signed up for a three-month rental, with an option to have the rent applied to the purchase price should we decide to buy. A year’s rent will be a third of that price.
“Year,” “three months,” I use those word on purpose; don’t think I don’t understand how they sound from somebody in a hospice. Or “possible,” that’s been an important one for me lately, usually unspoken, with an “im” prefix in front. Or if spoken, no prefix, there’s usually an implied negation, as if part of a weightless promise made to recalcitrant girl to get her to go along with the program.
My genes do give me cause for hope; my mom Sylvia was playing gigs well into her 80s. And all the support and encouragement from family and friends, surely that must count for something, even if it’s not quite a cure for cancer. Tibetan medicine may not be that cure either, but it does seem to be helping. So don’t be surprised if you find yourself appreciating the music when you hear me playing on my birthday in March. But don’t be surprised about the other “possibilities” either, brain tumors are no push-overs.
The walk back to the hospice took significantly longer than the one in the other direction. Matt has his own serious medical condition, called being sixty-two, and I could hear his labored breathing behind me as he pushed my wheelchair back up the hill; he’s got some exercise lately walking between BART and the hospice, but not enough. Also, it’s what you might call an “iffy” neighborhood, there’s often debris on the sidewalks to avoid, although not the homeless sleepers you find lower down on Market. While Matt pushed, Karen went on ahead, clearing debris from the path so we could stay on the sidewalk. It was a lot of work, but we kept going. When we got back, we had something new for me to try.