“What happened to your fingers?” one of the eighth grade girls asked me today as we stood chatting and waiting for the teacher to arrive. It was more than the uncensored nature of youth that allowed her to ask me without first editing her thoughts (or her surprised tone) – I’d spent some time with this class accompanying them at several performances, so by now they felt pretty familiar with me. While her question initially stopped me in my tracks (I kept my cool in spite of it), I appreciated the candor of her question, because it confirmed for me that it wasn’t all in my head… I’d known it was bad, or at least not good, for a while now. In fact I’d even heard slight gasps from my adult students in class last year when showing them the hands that had just demonstrated something intricate on the piano. There had been a slight pause in the room as people began to reconcile the music they’d just heard with the hands they now saw before them…
The nodes on the distal joints of my fingers can’t be ignored anymore – certainly not be me, nor by folks I meet for the first time. They are large, they are painful, they get stuck in between the black notes – and they are not getting any smaller. Just this past week I had a painful day of great sensitivity on the fourth finger of my left hand, and the next day there it was: a fresh, new node. A newly deposited growth of bone, I suppose, from what I’ve seen and researched online. Just about a year ago I’d gone to an orthopedic doc, before it had gotten terribly bad, and I was more than disappointed to hear him tell me there was basically nothing I could do about it. There were some drugs I might take, but they had a lot of potential side effects which probably weren’t worth it, he advised. I’d been prepared to hear something like this, but it was quite disappointing even still. I mean, come on. Everybody and his brother has arthritis and has for as long as we can remember – and I still have so few options? Seriously??
As a young adult I can remember looking at my mother’s hands and thinking that the distortion in her fingers was almost unbelievable. As if she certainly must have done something to have earned them. Knuckles don’t just blow up like that unprovoked, do they? Well, no matter who or what was responsible, a fate like this was certainly this poor woman’s cross to bear, but thank goodness, I’d think confidently to myself, that’s not my future. I’d even had such smug thoughts knowing damn well that while I do get my musical talent from my father, I look not a thing like him. No. Rather, I look like my mom. So here I am, at the start of my fifties and my own beloved hands are blowing up like those of an old peasant granny. For heaven’s sake. This is so not me! Come on guys! I beg my hands. I love you guys! I appreciate you guys! Why are you doing this? Why? I plead with them, even kissing them like a mother would her child. But onward they go, their shapes morphing almost as I watch; the minute, intermittent stabbing sensations and dull, hot pain confirming for me that things are, in this very minute, continuing to get worse. I’ve cut out wine. I’ve cut out acidic foods. Dairy. Salt. I read, I Google, try something else. I drink water. I try to think positively. But my fingers respond to nothing. My disease is progressing without my consent, and I am sad. Scared, too.
It’s a dull, ever-present sort of scared, it’s one I can live with. But there are other insidious types of fear that I find have been making headway into my life of late, and I don’t like it. I might be able to live with them too, but I sure as hell don’t want to. I may strike people as a strong woman – and some days I might agree – but I can feel that it’s becoming a bigger challenge these days to keep it together. Panic has resurfaced over the past year, chronic concerns over money feel even more real as my own aged years loom closer (and I have not a penny saved), and then of course there is always the concern for my son. His vision, his ability to participate as fully as he can in the world, and of late, I worry about his having contracted Lyme disease. We’ve begun his treatment, and docs assure me that in a young and vigorous kid like him, he’ll have no worries later on. It helps, but angry emails from his father telling me that I “need to take this seriously” as if somehow I do not, and telling me I might have been more vigilant when I in fact had been worried but hadn’t had him checked yet, this all makes it much worse. I don’t know how my ex still has such power to hurt and frighten me…. I summon my focus and I stand up to him. Right after, I beg my son in my heart to forgive me for not knowing, for not doing something sooner…
Tonight Elihu asked me to please stay and read to him. He said he was feeling ‘needy’. I hadn’t given him a lot of one-on-one time lately as I’d had too much life to deal with. Music to learn, house to clean, food to fix and such. Tonight, we agreed on a trade. If he’d let me just organize the mess in the kitchen – get it squared away just a bit – then I’d come in and read to him. I did, and shortly after I began to read we both started to drop off. I turned off the light and soon fell deeply asleep. The next thing I know Elihu is feeling for me in the dark and muttering something. He, like me, is a sleep-talker. He can even hold some conversations in this state, so at first I wasn’t concerned. But this was different. He reached out to me with outstretched arms, which I took for a hug, but he shook his head. “Machine” he said, pointing to his nebulizer. Can you imagine the shot of adrenaline that flashed through my body? I immediately got a packet of medicine, poured it in and gave him the mouthpiece. He looked drunk. After a few puffs he laid back down. I yelled his name and shook him – “Are you ok?” He waited for a moment, then nodded no. “This is different” he said through closed eyes. “Do you need to go to the emergency room?” I asked. He nodded yes. “Yes, emergency room” he said, again his head drooping to the side. Holy fucking shit. White hot fear coursed through me and my heart began immediately to beat as if I’d run a race…. I thought back to a panic attack I’d experienced earlier that day. It was a close second, for sure, but man, these stakes were mind-bendingly high… I ran through the house, pulling on clothes, locating his rescue inhaler, my boots, keys, a blanket to wrap him in…. I came back and tried to tug a sweatshirt over his head, but he fell limply to the side. Holy shit, holy shit, keep moving… I was thankful that the ER was just about five miles away, and we could be there in less than ten minutes. Lucky…. “Elihu!” I yelled at him. “What?” he finally responded. Then a look overtook him, and he sat up, eyes fully open, as I tugged the sweatshirt down around his neck. “What are you doing, Mommy?” he asked. “We’re going to the hospital – to the emergency room! You said you needed to! Can you breathe now? Are you ok??” He shook his head and fell back down on the pillow. “No, I wasn’t waiting to go to the emergency room. I just wanted a more comfortable pillow.” He lifted his head up and I inserted the down pillow underneath him. He plopped back down onto it. “Honey, are you ok? He nodded. My heart was still pumping loudly, and I wasn’t convinced. But I realized that he was still deeply asleep, and that while he may have needed help with his breathing, it wasn’t as dire as his sleep-talking self had said. Oh my God, I kept thinking over and over again, the prospect of a life without my beloved son flashing uncontrollably, nauseatingly, through my mind. My God, I think, and I my face sinks into my hands. Holy shit.
For the most part, I’d say I’m a glass half-full gal. Might not always have been, but I am now. Only I’m not sure if I could remain so if I were to lose my son. For that matter, how will I feel about that glass when I can no longer play the piano? Many times I have thanked the universe for all that I’ve been blessed with. Even the unexpected divorce and all the unforseen events that followed. It’s all been one unpredictable adventure from which I’ve learned so much more than I ever would have otherwise. If I hadn’t once been scared shitless, I wouldn’t be here now. I remind myself that fear has its place. But truly, I don’t think I need any more. I’m good. I don’t want to have to find out if I do or do not have it in me to live through a tragedy. Please, universe, don’t try me. I’m good with things the way they are. And I aim to make things better, too. I aim to get my son tinted contacts this year. I aim to teach him how to ride a bike, to make dinner on his own. We still have so much more to do, I have so much more to teach him. Let’s just get through this night, please, I beg anyone who might be listening. My right index finger hurts, my head hurts. I am emotionally weak just thinking of yesterday’s new run-in with panic. I am scared. But I remind myself: I might be scared, but I am strong too. Posturing though it might be in this moment, as the adrenaline begins finally to subside, I challenge my fear. I tell it we’re done for the night. Running in to check on my son every few minutes as I write this middle-of-the-night post and finding him in a comfortable sleep, breathing nice, even and deep breaths, I begin to take back what power I can. I tell fear to leave us alone.
Soon I think I’ll get to bed myself. One more check on Elihu, one more set of good, deep breaths and I’ll lie down.Man, I sure could use a rest after all of this… And I’m pretty sure being brave may well require a good night’s sleep.