Fuck ALS

People have told me lately that I’m brave and I feel like such a fraud. I don’t feel brave at all. I feel like me – only on some sort of spiritual isometric machine. I have wondered how honest to get on this blog. I hear friends talk disparagingly about the solipsism of tell-all blogs but I think it might be good to be truthful –even if some of what I say is painful to my dear ones. I mean there are manuals on how to live with ALS but how do people find out how to die from it if we aren’t all really honest?

Truth is I’m scared and I don’t want this. I get through the days, sometimes I have an awesome day. I laugh and try to engage with the world. But I really feel like I was born to perform for people, to make them laugh and cry, to charm the pants off of them (sometimes literally) to be forever “young for my age” to be the most fun grandmother ever, to travel and have adventures and tell stories, oh stories – I don’t have enough yet and I don’t have all the ones I’ve lived recorded and I don’t even know how to start. I have an “abstract/random” data base in my brain that pulls these things up as they are needed. I don’t know if I’ll have enough time to remember all the stories I don’t want to die with me.

I’m scared. So maybe that does make me brave since I have to acknowledge every day that the world continues to spin even though I am dealing with the only thing I said I couldn’t handle. Sometimes the pain of this literally takes my breath away and it’s hard not to fall right to the floor with it.

Okay here’s a weird confession. Almost as bad as dying, I fear losing my body. I’m vain you see. I can take getting older, getting gray eventually, I already have wrinkles – but I can’t bear the idea of being marginalized by waiters, passers by etc. Being seen only as someone in a chair. I still love yoga but I mourn the poses that are no longer available and wish to hell I’d appreciated them then as much as I do now. In the last few years I have reveled in my beautiful middle-aged self. I have felt vibrant, alive, sexy and full of purpose. I don’t want to let go of all of that.

That’s where the isometrics come in – I feel brave and scared, accepting and devastated, surrounded by love and early in the morning – all alone. It’s so much to hold, so much to wrap my mind around, so hard to find a way to describe it so people will get it.

I’ve thought maybe I should leave only inspirational stuff behind for Mac, but he’s never been one for bullshit and I think I want him to know that I am a complex human being in on an un-navigated course. I want him to know that life is indeed really hard and unfair and that all we can do is love what we got while we got it.

Like Joni said “Don’t it always seem to go, that you don’t know what you’ve got til it’s gone?”

I’m sorry if it is tough to read this. I just don’t want to turn away from this experience. I want to live it because it’s what I got.