Can’t seem to kick this cold, which I’ve had for most of this month. The coughing is triggering laryngal spasms, which leave me wheezing and barely breathing. The good news is that I’m told these spasms are in no way life threatening. Dallas at the clinic says “You feel like you’re going to die but you won’t.” Apparently it’s a common ALS symptom. The key is to remain calm so if you’re with me and this happens, just chill. Unfortunately, laughter is a trigger – given the number of times a day I belly-laugh I’d say I’m a high-risk patient.
Jason was here Friday and Saturday. He’s one of the best people I know and I never get to see him. I love how generous he and Allison are with sharing their kids with me and I treasure every story. Thanks to those of you who wrote in with hat suggestions. Looking well-turned out is surprising healing and I should know. I want her to look like a chic New Yorker on the street when she ventures out to greet the world.
Don’t know when I will get to water walk again between the toe (6 weeks in the bloody boot) and the cold. That bums me out immensely BUT here’s the good news: I have a gig at Yoshi’s!! Day before Thanksgiving (November 26th) with my usual cast of characters plus horns. Yoshi’s is really tough to fill so start guilting your Bay Area friends into going now!
I really like my new accomplice. We both love yoga and Johnny Depp and we have the same pink bra from American Apparel. I told her it’s Johnny’s favorite bra. I have 2 night time accomplices, Katie and Desiree who only work 30 minutes a night. They both seem nice too.
So Maggie, one of our wonderful Irish sisters, wrote in with a bittersweet commode story which she prefaced by saying something like “there are no pleasant moments with ALS.” This challenged me to do two things: 1) buy bright red underwear to avoid commode mishaps (okay, they’re also really cute) and 2) come up with a list of pleasant ALS aspects though I must agree with Maggie that ALS moments can only be categorized as bittersweet at best. That being said, here are my favorite things about ALS. Please sing this out loud to the tune of “My Favorite Things.” If possible affect a British accent and dance around like Julie Andrews.
I don’t do dishes and people massage me
Ask for a blog comment, Muselings barrage me
Don’t ever stand on line at Trader Joe’s
ALS has a good side I suppose
I never drive so gas prices don’t phase me
People confide crazy shit to amaze me
Don’t do laundry, don’t fold, don’t touch a vacuum hose
ALS has a good side I suppose
When life blows chunks
There’s this cute hunk
Who cooks all my meals
I sit on my ass, tell a joke, pass some gas
Like the luckiest girl on wheels.
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9 comments:
awesome. :)
if it wasn't so early i'd have written my reply in verse.
:)
Kim
well first off you have to change your personal info on your blog that says "I used to be a performer" because obviously "used to" just ain't true.
I laughed wondering how many of us were humming the tune to "A few of my favorite things"!!
SusanP
Carla you will leave your son with a few ALS stories that will leave him belly laughing!! I wasn't privy to the "beige underwear mishap" but every time it was mentioned my mom would laugh so hard the snorting and spitting started! To this day I smile when thinking about it. Yes there are not too many good things about ALS but the bonding and closeness to my mom I felt because of the illness are priceless. You are wonderful! Love, Maureen
"favorite things about ALS. Please sing this out loud to the tune of “My Favorite Things.” If possible affect a British accent and dance around like Julie Andrews." - Carla dare I suggest that no one could do this like you can. How about recording an mp3 and include it in the blog, so we muselings can all learn from the master?
Loved the song!!! You are unbelievable, thank goodness. Whenever I counseled anyone on how best to proceed with an interview for a job I always told them to wear red underwear (women only, men need to wear a red tie) as red is a power color and, though only they would know they were wearing it, it would give them confidence. It worked many times. Now I hope it works for you as you get well from the cold and from the "bloody" boot.
As always you inspire.
Love, Pat H
Ditto on the mp3 recording of "Favorite things about ALS" -- it's just not the same without hearing your voice and being inspired to imagine your shining red hair swaying to the rhythm of these edgy lyrics! --Love, Linda.
Carla,
Your posts always bring tears, laughter & lessons. SusanP is right on -- you need to change your bio -- you're still a performer AND a teacher! I loved the song, and yes, I sang it to myself to the tune of My Favorite Things --- didn't we all?
I was so sorry to read about your toe! As if life hadn't thrown you enough curve balls. I broke my toe last spring and was in that bloody boot for 8 weeks. I also rode around in that red rabbit scooter you had used at work which was a big help. Being imobilized and at the mercy of others is the pits and also very revealing. The kindness extended to me by friends and strangers was amazing and the lack of it from the man in my life was even more amazing. Lots of lessons there. It was also a lesson in what you are always teaching us -- to cherish what we have and find beauty in the small moments.
Gotta go now and get me some red underwear. Sending you light and love...
Your Faithful Museling, Kathleen (KK)
Carla,
Red is good. Now if only I had bought my mom red underwear! Love and hugs from Seattle :)
peace.
maggie
Among the many things Carla's life brings to the world, music is a great part of her gift to heal others....
here is something I thought the Muselings might enjoy
http://www.pbs.org/moyers/journal/10242008/watch3.html
Joanna
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