Wednesday, December 24, 2008

Traveling at the Speed of Enlightenment

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.


Anonymous said...

Dear Carla,

Your love of life, living and friendship is an inspiration we all can learn and grow from. It is difficult to change the course of the Mississippi overnight or to change a lifetime of behaviors and beliefs. Reading your words help me to incrementally change some of my views of my own "place". One can't help but love you, your family and your friends. There are many others that are what they call on the net "lurkers". We keep a low profile but follow things, sometimes even making comments.

Every time I read one of your stories my heart grows stronger and I wish I could help more. Perhaps I was only meant to be able to write words of support from my world to be it.

I wish I could share the ocean with you and your posses on the 26th, but my thoughts will be with all of you AND I will be feeling a lot of excitement about your pending trip down under.

Anonymous said...

I miss you so much. I wish I could see you. I think about you everyday.

I hope you have a lovely trip to Australia and a nice "anniversary" on the beach.

I wish I could help you carry your load.


Anonymous said...

Have a trip of which only dreams are made. Can't wait to hear of your adventures and I predict you will not only sing on the steps you will sing on the stage of the Opera House.

Love, Pat

Anonymous said...

I always say that the last year we spend with our Mom was the worst year of my life, but it was also the best.
I wouldn't have traded it for anything. It was a gift to be with her and laugh and cry and feed her and bath her. I am grateful.
love lisa xo

Anonymous said...

for everyone...

Magic of Free Parking
Composer turned filmmaker Kurt Kuenne calls it "a fable about the magic of free parking." A short film about one parking attendant named Hugh Newman is really the story of small acts of goodness and everyday smiles that is sure to bring every viewer into spirit of holiday cheer.

Anonymous said...


this nd the prior video are resonate with who you are. enjoy

Story of a Sign

With a stroke of the pen, a stranger transforms the afternoon for another man in this emotionally stirring film by Alonso Alvarez Barreda. The winner of the short film online competition at the 2008 Cannes Film Festival, Story of a Sign has since become a regular feature of Mexico's national television programming.

Anonymous said...


I realized that you are leaving for your trip and I want to wish you the trip of a lifetime! Know that we muselings are all lifting you up in our hearts,you may not hear our voices but they will be your chorus when you sing on the steps of the Opera House!
Thank you for giving me such an avenue of healing these past few months. Reading your blog really helped me define what my mom must have been feeling... godspeed Carla.
your faithful museling,