I couldn’t breathe on Monday night for about a minute. Mac was at his Dad’s and I was alone and I couldn’t breathe. Now I remember Nurse Dallas told me to relax when this happens but I tend to relax by….breathing! I was scared and calm at the same time. I spoke reasonably and amiably to myself like a pilot talking to his passengers. “Good evening, this is your Captain speaking. I’d like to welcome the central nervous system as well as those of you traveling in autonomic class. Estimated travel time today is 2-3 years. Now, if I can just direct your attention for a moment to your upper body, maybe I could juuuuust get you to drop your shoulders, open your palms and let your arms dangle. Relaxing, isn’t it? Let me remind you to stay on the bed in case you faint. On behalf of myself and the whole crew we wish you a very pleasant crisis and hope you’ll die with us again.”
Eventually I was gulping some air, then breathing. Big ups to yoga and meditation, my sherpas on this crazy trip.
We are approaching the one year anniversary of my diagnosis (Dec 26). On that day, Edith, my dad and I were dumbstruck by the news that I actually had the disease I said was the one thing I couldn’t handle. My Dad and I are Canadian by nature (and birth) and Edith has a very Japanese kind of composure so the three of us combined couldn’t manage to russle up much of a scene, however the room was thick with emotion. Mac actually pinched his cheeks to see if he was awake when I told him. The grief I felt – and the grief of my Dad and Mac – seemed to me at the time quite unbearable. I felt more scared and alone then than I did on Monday night when I couldn’t breathe.
Yet here we are. On Saturday my hand was so tired ( I was using it by working…for money!) that Sofia had to feed me in front of the tech crew of the Zellerbach theater.
And we laughed. Hard.
I have gotten used to the wheelchair and I have made friends with it.
I have the best selection of cripple jokes, ALS jokes and dying jokes the world has ever known.
I dreaded having aides yet I love Mayra and Natta, my lovely accomplices.
I am a happier person than I used to be because I consciously make the choice not to be bummed by stupid things.
I would happily accept a cure but I wouldn’t give up this year and what I’ve learned about you and myself for anything except if giving it up was best for my son.
ALS is the worst thing that’s ever happened to me and it’s also the best Christmakwanzakah gift I have ever received. I can’t find the words to make this make sense to you so you’ll have to believe me. I’m not as full of shit as I sound (thank Fiber-sure!)
So I’d like to say to Santa – Listen man, I apologize for calling you a douche bag last year and for saying the ALS gift was lame – I mean it is lame (get it? Lame?) but it’s also pretty cool. Oh and Santa - I want to thank you for sending Allison home to Annabel, Atticus and to my baby brother Jason.
Thanks to you Muselings for your overly generous blog comments, your generosity and your love throughout this tough and utterly awe-inspiring year. I will meet with a small number of folks at the beach on Dec. 26 to mark the date and usher in a new year of love, loss, stretching, growing and being a grateful witness to it all.
And naturally, I’ll blog about it.