I began my drug trial on May15 and tomorrow I go in to get my blood levels for lithium tested. It’s anybody’s guess to know how long before we know if the drug is helping slow down the progression of the illness. The hands keep weakening, the neck cramps every day. I don’t believe I will beat ALS. I’ve never had that kind of fighter instinct. At Sports Day in Kindergarten I came in dead last, slowing myself down even more because I was yelling to my best friend at the time “Good luck, Jonathan, I hope you win!” I never pushed my career because of that same lack of killer instinct …or maybe it’s a lack of entitlement. It makes no sense to me that I could beat an incurable disease. And yet, I’m an optimist. Is that weird or what?
My career and relationship dreams never came true. The end of my marriage did not break my heart but events since then most certainly have. My body is betraying me and even when I do what I’m told and move into a wheelchair early, I still get injured, I’m still sore and still shaky from my launch the other day. (By the way, it’s not the flying that’s dangerous, just the landing). I adore my son and face the reality of leaving him and wondering will he allow others to nurture his tender heart when I’m gone? How can I bear to leave him? And yet, I’m an optimist. Go figure.
All the things I mention are true. They are unavoidable. The first noble truth is that suffering is inevitable and on bad days I want the Buddha to have called them the Four Bullshit Truths. But mostly I notice how blue the sky is, how delicious laughter sounds, how great it feels to hold a warm cup of tea in my hands. Mostly, I grab people and hug them and tell them I love them when I have the impulse to do so. Mostly, I see miracles everywhere – in my son’s blogs and jokes, in the earnest joy of little kids, in the beautiful melodrama of teens and college students, in my dad’s tears, in my amazing friends and their support and in loving someone and being loved back.
I had a dream the other night. I was walking down the street with a dear friend and I was walking completely normally. I felt completely normal and healthy. It was a glorious sunny day. I turned to my friend and said “ I don’t know if I’m happy because it’s sunny or it’s sunny because I’m happy.” And my friend said “it’s the latter.” I woke up in the warm glow of love and contentment.
How do I have time to fight ALS when all around me the world invites me to joy?
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2 comments:
I agree about the four bs truths. Suffering sucks!!! And I so admire your choice to remain present however challenging life gets. I love your dream, I love your optimism, I love your supportive rather than killer instinct...and fighting isn't necessarily the key to overcoming illness. Sometimes it's shear luck and love and an underlying optimism that enables you to keep from giving up in the face of the odds.
I had a dream with that kind of a soothing effect on me. I was driving by a busy highway and saw a terrified little boy running from something that was chasing him. He I pulled my car over on the side and got out of it, leaving it behind without even bothering to close the dorrs which swung open into the street.
I caught up to the little boy and asked him why he was running, and he said he was being chased by a monster. I couldn't see the monster as he was constantly behind the bend, but I could feel his malice. I took the boys hand, wanting to help but having nothing to offer and said, well, then, we'll run together. As soon as I grabbed his, hand, I felt the malicious presence behind us turn his awareness and hatred to me and I was scared, but more than that I felt this deep joy to be here with this little boy in his fear.
I woke up not feeling scared, but small and grateful.
Dreams are funny things.
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