I’m looking out the window of my apartment onto the Berkeley Hills on what is a genuinely fabulous day. This view and the deck from which I enjoy it has given me nothing but pleasure since I moved into this apartment in what can truly be called the weirdest year of my life.
I will cut to the chase. I have been diagnosed with ALS ( Lou Gehrig’s Disease) – an incurable and fatal illness which will take me - maybe in a year, maybe in 10 years. Of course I hold out for what the Flight of the Conchords would call “ a hilarious misunderstanding” but I’m also not in denial.
I'm posting this because I want people to know so I don’t have that awkwardness around the question “ So what’s new with you?” when we bump into each other. I also want people to know that you don’t have to watch what you say around me. There are no verboten topics. If I don’t want to hear about your shamanic healer who uses ingestion of bark and owl urine to cure unthinkable illnesses, I’ll tell you flat out (but in a nice way). But please don’t feel like you need to watch your words. Being present is enough. In fact it’s more than enough. Please don’t be afraid to call or write but don’t be offended if I take a while to answer. I’m not being a Californian, I’m not dissing you, I’m just overwhelmed is what it probably means.
I also want people to know that the words in the Louis Armstrong song What a Wonderful World are actually incisive and NOT at all corny. Who knew? I heard a little baby singing in a stroller today and I looked up at the blue sky and the powder biscuit clouds and I was flooded with an overwhelming sense of awe and gratitude. What an amazing fucking world this is!!!! How awesome it is that I have gotten to have the experiences I’ve had, loved the people I’ve loved and done it all with a fit and functioning (and dare I say hot?) body.
Don’t get me wrong. I think it’s bullshit that I have to go this way. I don’t like it one bit. But that’s the hand I’ve been dealt and all I can do is feverishly, fervently and with great intention live the rest of my life to the best of my ability. I will not become a tireless crusader for a cure for ALS, I will not fight until the bitter end or be anyone’s poster-middle-aged-woman – rather I will do what we were all meant to do – be with people I love doing things that make me happy, trying to make the world a little brighter when I can and giving myself a break when I can’t.
Remember the speech Lou Gherig gave when he called himself the “luckiest man alive?” I totally get it now.
I keep thinking of Mary Oliver’s line “Tell me, what is it you plan to do with your one wild and precious life?” I plan to start with boogie boarding and go from there. I’ll update on this blog.