The last full moon marked the Hindu/Nepalese festival called Guru Purnima. Until last week, I did not even know such a festival existed, but one of my yoga teachers, Ali, told us this is the festival which honors teachers (gurus) - in whatever form they take.
This struck me, because my father was a teacher, and this holiday came right on the heels of the anniversary of his death. He was obviously one of my first (and best) teachers. He always said that the job of the teacher was not to put light into the eyes of his students, but rather to turn his student's eyes toward the light. So his way of teaching was to challenge us - to challenge us to think things out for ourselves, to appreciate logic and reason, and to never stop being curious about the world.
He loved history and he loved talking to us about big ideas like what it means to be human, and what reality is, and whether there is free will, and whether there is a God in heaven managing human affairs. I felt so respected when he asked those questions of me as a child- even as he would prod me to think a little more deeply about the answers I gave, or ask me to explain myself more fully.
It's kind of inevitable then that I think the best teachers are those who challenge you. They rile things up, they make the world much more interesting and rich, and they call upon you to bring all of yourself to the lesson.
So if a guru is someone who challenges you and shakes you up and wakes you up, then that is pretty much what this disease has done to all of us. And as I reflected after the yoga class, I wanted to try to come up with a neat list of all the things that it has taught us - you know, something kind of inspirational.
Really, trying to write all that stuff turns into a whole bunch of clichés about never taking anything for granted, being grateful for the small joys, blah blah blah.
Here's the REAL lesson in it for me - and the hardest one. It all comes down to learning to let go. It is a lesson that comes up over and over again with nauseating and heartbreaking regularity. With each new symptom or change, we lose a little more of Alex. And although I know better in every way, I DO cling, stupidly, angrily, stubbornly and impossibly, cherishing the glimmers of the "old" Alex when he appears. And when we have one of those breathtaking moments when it is absolutely impossible to pretend that the lost things are ever coming back, it is agonizing.
My father's death was shocking and sad and terrible. I still miss him, I wish he were here to talk to me, I wish I could just mess around with him the way I used to, or talk about what we've been reading or watching or doing. But eventually, I have made a kind of peace with it. That seems somehow like "normal" grief.
I miss Alex every single day,and yet he is right here beside me, all up in my business, demanding attention. As he loses more capability, more and more is demanded of all of us. It is ceaseless and escalating - and good luck trying to live in the present moment when you cannot help but think , "It can't possibly get worse than this," when the one thing you can be pretty sure of is that it absolutely will.
Making peace with this reality is a big educational project. I have told myself for years that when awful things happen that are out of your control, you still get to choose what you do in response - how you react to it. That's all you've got. Turns out, I maybe have a bit more to learn about that.
Grief just takes you over. You don't choose it, you don't select it, and you absolutely cannot wish it away or cover it up. It will make its presence felt, and it will not let you go until you have felt it. And it will come back when you think you are rid of it, and it will re-appear on an otherwise perfect day to nudge you and maybe even swallow you up for a while.
And it turns out that ALL of the emotions that cycle around are not chosen. Becoming angry and yelling at a person who simply can no longer comprehend anger is like watching a Looney Toon unfold right in front of you eyes. Even though people who want to help through this will say, "Of course, you're not really angry at Alex - you're angry at the disease," I assure you that when I am angry, I am absolutely angry at Alex. And even though I know it's stupid and pointless, and that it will not make anyone happier or make anything better, I am still angry and disappointed sometimes. Just because I know better than to act that way doesn't mean that I will stop doing it.
So every day when I meditate, I set an intention to "let go." And by that, I mean that I want to try to let go of all of it. To let Alex go and gracefully accept that he has changed and that he will continue to change. But also to try to let go of the fear and the anxiety and the guilt and the stress, and all the rest of it. Every so often, I actually manage it, and when I do, I think I see a glimmer of the other really big lesson I have learned in this - that love really is stronger than fear. But it is a constant re-educational effort to learn to make room for it.
Over the next weeks and months, I will be trying to figure out how long we can keep Alex at home, and what we will do when he can't be here any more. At first, I could not even make myself think about that. Now I am making a plan. And somehow or other, I am sure we will work it out and manage it.
Last week, for the only time since he was diagnosed, Alex told me he just wanted to quit - that he did not want to live this way anymore, and I had absolutely no idea whether he actually meant it, or if it was really all about his not wanting to take another blue pill before he went to bed. I cannot emphasize this strongly enough - I had absolutely no idea whether he actually meant it or not, but I was devastated. We have been working so hard on making his life as good as possible, and fighting against the worst indignities this disease brings, and always we have been doing it thinking that it would be what he wanted. I never doubted that. And so here was the first doubt, and I could not stop crying no matter how hard I tried.
But hey, the next morning, after a good night's sleep Alex was happier, and he had a good day, and we even managed a couple of laughs. So that's another big lesson - sometimes, you really can take this stuff way too seriously. The distance between tragedy and comedy is not very far at all, and I will always have better days when I simply lighten up and laugh at myself, too.
So those are my "inspiring" lessons. Sorry - not much anyone can use there to make a self-help book. But, if you are sitting somewhere in the course of this disease (or some other awful crisis) I will say that joy springs up on us exactly the same way grief does. Maybe not in equal measure - maybe not as much as it used to - but it still does, and when it does, it is very sweet indeed.
And more than ever before, I find myself moved suddenly and impossibly by the beauty there still is in the world. A beautiful piece of music, a perfect summer's day, something wonderful that one of my children says to me or does for me, an act of kindness - all of these things seem to be able to touch me more deeply and mean more than they ever did before. And sometimes when I look at Alex, I think I can see clear through to his soul.
Maybe that all would have happened without this disease staring us all in the face the way it does. I can't say. I have no other reality to experience but this one, but I believe that some of what it has taught us will stay with us for a long long time.