The Year of the Flute

For me, 2012 was the Year of the Flute. Aside from all the stress and worry and paperwork and phone calls of applying for and appealing an automatic initial decline of social security disability, besides all the time I spent worrying about money and trying to find a way to make ends meet on a third of my previous income without selling my house or my RV, aside from all the time that was lost to pain and medication and mental confusion, after all that, about all I did in 2012 was prepare for the solo flute mini-concert I performed in December, and the CD of Christmas music Kathleen and I made for my parents’ Christmas present.

I spent all of February and March ordering and listening to and sight-reading music to select pieces for my Bach’s Lunch concert. Bach’s Lunch is a mini-concert, just thirty minutes of performance, but I spent days just considering what flute pieces I felt would make the best possible concert and in what order they should be to give the audience the best possible experience of solo flute music. The dozens and dozens of Christmas flute pieces I ordered pretty much just piled up until I started reading them with Kathleen in April, gradually deciding which ones we wanted for the CD during our weekly rehearsals through the summer. Then I drove back home to California for Angeline’s wedding and to practice every second I could stand through September and October and recording the CD with Kathleen. Then when I got back to my parents’ at the beginning of November, I spent as much time as I could stand playing my flute to practice just the pieces for my Bach’s Lunch. Given the neuropathy limitations on my hands and feet, that meant practicing beyond the point of intolerable pain more often than not, never knowing if I would cross the invisible line into blinding pain world before, or after, my required thirty minutes. Pushing myself that far every day for months left little gray matter to pursue, or even conceive of, other interests, like the new book that’s been in draft for a year now. So, in my mind, 2012 will always be remembered as the Year of the Flute. I gave everything I could for nearly a year to make that thirty-minute concert as spectacular and emotionally bonding for the audience as possible. Giving everything you have, every ounce of strength, every fiber of being, every cell and heartbeat . . . well, if you overlook the fact that such giving dictates you then being completely drained and empty and facing a very difficult recovery, well, overlooking that, giving everything you are and having it be received in others is the most rewarding experience I know of.

For a couple hours after my Bach’s Lunch concert, I was hyped up on adrenaline from the incredible experience that was my concert, and I was surprised that I stayed in control of the pain for as long as I did after the concert. I must have hugged more than a hundred people that waited in line to express how the concert made them feel and thank me for playing. It leaves me rather speechless with awe when people come up to tell me how I’ve inspired them, but I can give every person a heartfelt hug and thank them in return for telling me about it. Just like when I speak at a Relay for Life, for the American Cancer Society, people wanted to share their experiences with cancer or some other way that what I spoke about resonated for them. The nice thing about having this happen after the concert, with such a very large number of people wanting to come up to me, was that I was on my tripod stool and I actually pretty much stayed sitting down except for the moment it took to give a hug, so I wasn’t exacerbating the burning in my feet by having to stand for all of that. Neuropathy being what it is, though, I was getting very anxious to get away by the time we got out of there. By th time we got me loaded in Mom’s car, I didn’t have enough energy left to conceal the clenched grimace on my face.

By evening, the neuropathy had complete control over me, the worst it’s ever been in the two years since the doctors found a medication that helps me tolerate the pain. I knew that would happen, that playing the concert would push the burning pain beyond anything I could possibly control and would take several days (at best) to recover from. I tried to prep my parents for weeks before the concert, telling them that I would be pretty much quarantined in self-isolation for several days after the concert, hiding in my room while I regained control over the pain. The night of the concert, I was curled up in a ball on my bed, unable to move or speak beyond the shuddering and sobs that come with unimaginable searing, burning pain. It took about four days to get to a point where I could be around people again, and I got through Christmas with my family ok, five days later.

Now, weeks later, I still seem to be recovering, still trying to regain the mental strength to function for even limited social interactions. My neuropathy medications help me bear it, but I’m still not as much in control of the pain as I was before going to South Dakota in October. It’s hard to regain control over pain when there’s never a moment that it isn’t there. Never. Never. Ever.

I kept trying meditation for a long time, but I’ve never been good at maintaining a meditative state when I’m just sitting there trying to meditate, or trying not to try to meditate, or however you look at it. 🙂 Once, several years before cancer, I did have this whole Budda-on-the-mountaintop out-of-body kind of experience, but that was when I died with heart failure (which they shocked my body back from after a few minutes), so technically people would call that a near death experience since I hadn’t gotten there meditatively. 😉

The closest I’ve ever gotten to complete mind over matter since the side effects of chemo slammed into me over three years ago has been while I’m playing the flute, with Kathleen at the piano. Even then, it wasn’t that my mind overcame and forgot about the pain, rather, it was like I was lost in the music, like I was music instead of a being inhabiting a physical body. I didn’t know pain because I lost the concept of physical existence, because music, purely, simply music, is beyond the physical. Wild, eh? Not that it lasted for long, the burning in my fingers shrieked the instant I lost the moment because I had to take a breath or remember a key change or anything else mental. The momentary lapses into musical nirvana never occurred when I practiced alone, they only happened when I was playing with Kathleen, when we were together in making the music. After so many months of practice specifically on the pieces for the concert, there were times when the physical actions required to play my flute became as automatic as breathing, though there were still just these brief moments in time where it was as autonomic as letting my heart beat. Some of it comes from me and some of it comes from Kathleen, and a lot of it came from the audience, especially during Amazing Grace, but really during every song in the concert.

Actually, Amazing Grace has always been kind of a magical piece for Kathleen and I. The very first time we played it through together, it was one of those musical moments that leave you speechless with wonder, especially when I realized there were times in those few minutes when there was nothing distracting me from the music. No thoughts, no physical feelings, no pain.

If only I could find a way to “not feel” like that while playing alone, or practicing with a group, then maybe I could have some kind of a life as a musician again, even if my daily flute handling is generally limited to thirty minutes. It kills me that I can’t touch my flute more than about thirty minutes at a time, and that usually just once in a day. If I could just play long enough to survive a regular weekly two-hour orchestra rehearsal, then maybe I could be in a symphony again, and maybe I could achieve more of those moments of being music instead of being a human inside a body that experiences severe and unending pain.

If only. Ha. I’ve had moments of nirvana in tango too (generally prior to chemo), but even so, not enough that I’d kill myself with repeated attempts to dance on neuropathy feet. Just the thought of having the entire weight of my body on the burning ball of one foot in a three-inch pencil-thin tango heel makes me shudder in anticipated pain. I become more and more resigned to letting go of dance forever as more time passes without a whisper of improvement or recovery from the neuropathy that burns constantly in my hands and feet thanks to chemotherapy. Forget walking, too. Or having my hands near heat to cook, or cutting food without the knife and fork slicing and burning through my hands, or touching anything with sharp edges (which I drop immediately as the pain shrieks out of my hands). I can touch soft, smooth things for a limited amount of time before being overcome with pain.

One thing that it made it possible for me to practice my flute enough to make a CD and perform a solo concert is the flute guy in Sioux City who tuned and tweaked my flute, every single key and spring and pad, so that it takes only the very lightest touch to control the instrument. My flute, though a professional level instrument, is surely completely unplayable by anyone other than myself now, because of how much he’s changed every millimeter of it to adapt for my hands and how I cannot hold a flute properly anymore nor apply any real pressure in my fingers. But with a fantastic instrument tuned and tweaked to each of my fingers and tone in each octave, I managed to play an entire 30-minute mini-concert to a packed audience, and I even seemed to connect with most of them, maybe everyone as a whole, with that music.

2012 was the Year of the Flute because I don’t think I’ll ever be able to do that again, ever. The level of effort was beyond comprehension, something I cannot fathom putting my body through again. It was kind of my version of climbing Mount Everest (which I don’t think many people do more than once, if at all, not that I’ve ever climbed a real mountain to know what I’m talking about, but it seems like a pretty good analogy of what 2012 was for me and how unrepeatable it seems even though the personal reward at the time was unbelievable).

I hope though, that after I’ve had my three months of rest in California and the temperatures rise in South Dakota, I will at least find enough strength in me to keep playing with Kathleen regularly and perform whatever I am capable of, like a mini-concert at the prison or nursing homes or schools, or, well, anywhere. Knowing that there could be moments in my future when I can be lost in music can be another source of strength for surviving each moment between now and then. The more reasons we have for surviving give us ever greater resolve and ability to survive ever more difficult challenges, I think. I hope.