If you can, please tell me your name when you comment and a little bit about yourself because I love what you have to say and want to know you better or maybe I just don’t know that I already know you. I do love all of you though and believe me, pre-ALS Carla would have thrown up into her mouth a little bit to hear ALS Carla say that. People change. Thank goodness.
Meanwhile back in ALS land I had a good clinic appt. Besides the Maximum Inspiratory Pressure or MIP score, which dropped from 52-35 and the tongue problems which Dr. K could clearly see but not hear (big ups to voice training!) I’m holding my own and have a lot of strength in my arms (not hands) and legs. My lithium dose has been reduced and I’m back to an every 3 months visit instead of every 2 months. Jodi, the mama-bear clinic manager and OT lent me a documentary about a comic writer in LA named Scott Lew. Funny cat. I saw a lot of my decline – the way he made use of his hand, the way he walked using his Dad’s shoulder, napping with the annoying bipap machine etc and I also saw myself in the way he laughed through it all until the tears would ambush him. I could really relate to him though I am not looking forward to what clearly lies ahead. If you want to be inspired, I’d check out the DVD which is called “LIVING WITH LEW.”
( http://www.livingwithlew.com/news.htm) I’m not up for watching that kind of documentary in general but in this case I’m glad I did.
I spent the last two days at the Muscular Dystrophy Camp learning from 52 gurus – kids from 6- teens with muscular dystrophy. Some of them had symptoms so mild you would never know they had a disease and one girl had a 24 hour nurse, a tracheotomy and oxygen machine and almost no movement at all. I fell in love with several of them including Angelina – a pretty dark haired girl with streaks of green and yellow in her hair who sized me up with a somewhat inscrutable look then asked “Are you riding that wheelchair for fun or is something wrong with you?” “ I have ALS” I said. “ I can walk but I fall down and get tired.” “Me too” she replied. Once I passed her sniff test, she and her buddies – a couple of live wires themselves – coached me on how to be Paula Abdul for “Camp Idol” where I was to be a celebrity judge. “If you don’t like someone’s singing, just compliment their shoes” she told me.
I also loved Adrian and Callum – both 7 year old rappers. Adrian rocked the mic so hard from his wheelchair I threw my scarf on stage ( it takes wayyyyy to long to get my underwear off nowadays and it might scar him for life anyway). Callum – a round, pugnacious little fellow straight out of Little Rascals did a hilarious wriggle that was meant to be a “hyphy” dance and said things like “All the babes say YA.” My eyes filled with tears of fury when I was told that this little kid asked his doc for a power wheelchair because he wasn’t fast enough to escape his tormentors at school on his wobbly feet. I wanted to go to that school and scare the shit out of each and every one of those little bastards. The angel doctor is getting him the power chair.
I sang at the camp at the request of the director the perhaps ill-advised choice of Kiss by Prince. I’ve now been hooted at and catcalled by kids in wheelchairs with fatal diseases. I can die content. I would sing “I just want your extra time and your…” and they would holler “KISS!” Heaven. I was aware of how much my voice has deteriorated even since the last time I sang it and just when I felt the dark clouds descend, I looked at Hannah who can’t breathe on her own and V who may not make it long enough to be back at camp next year and Daniel who fell down while singing and just laughed and kept going and I got over myself real quick.
If I’m physically able to, I’ll be back to camp next year because I was genuinely sorry to only have 2 days with these awesome kids.
Friday, August 22, 2008
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I have commented twice on your blog but haven't left a name. I took care of my mom who had ALS. It was bittersweet and I miss her terribly. What I learned was we all go sometime, how we go really defines our lives, some leave quietly and others with fireworks and music. I choose the latter. Memories are far more important than security...take the faster ride at the carnival, stay up later than you should to talk with friends, live out loud, dance with joy. And by god, if I get offered a job in Istanbul I will be on the first plane out of the country. I live in Seattle and someone in SF told me about your blog. I am a faithful reader, you have given me more than you know.
Hey, it's me, Kim P. :) I always (almost always forget to sign my name. I'm a dolt I know.) You can just assume that all the really astute comments are mine ;)
I'm glad you got to go to that camp, that sounds awesome.
This post, as most do, made me cry.
Carla, You are always in my thoughts, I am holding you tightly and not letting go, and I have begun a daily ritual of prayer, which I've never done before in my life. Your blog is a selfless gift, without it, many of us would not be able to stay connected to you. I am so grateful to you for sharing your life. A miracle would be great about now. XXXX00000's
I watched LIVING WITH LEW last night -- you're right, he's remarkable. One of the fabulous Forbes/Norris doctors in the film said that perhaps the only positive thing about ALS is that it can make life more vivid. You certainly are seeing and feeling life clearly, vividly. And in sharing your vision, I think you're helping us do the same. I can't think of a greater gift.
Why, who makes much of a miracle?
As to me, I know of nothing else but miracles,
Whether I walk the streets of Manhattan,
Or dart my sight over the roofs of houses toward the sky,
Or wade with naked feet along the beach just in the edge of the water,
Or stand under trees in the woods,
Or talk by day with anyone I love, or sleep in the bed at night with anyone I love,
Or sit at table at dinner with the rest,
Or look at strangers opposite me riding in the car,
Or watch honey bees busy around the hive of a summer forenoon,
Or animals feeding in the fields,
Or birds, or the wonderfulness of insects in the air,
Or the wonderfulness of the sundown, or of stars shining so quiet and bright,
Or the exquisite delicate thin curve of the new moon in spring;
These with the rest, one and all, are to me miracles,
The whole referring, yet each distinct and in its place.
To me every hour of the light and dark is a miracle,
Every cubic inch of space is a miracle,
Every square yard of the surface of the earth is spread with the same,
Every foot of the interior swarms with the same.
To me the sea is a continual miracle,
The fishes that swim--the rocks--the motion of the waves--the ships with the men in them,
What stranger miracles are there?
A woman with ALS who makes us all want to live more deeply, more honestly, more fully?
from Walt Whitman and Joanna
First and foremost I LOVE your blog! I'm Maggie's sister who lives in SF and told her that one of my clients told me about you...your musings touch my heart so deeply as our Mom had ALS. Your courage helps me so much with my grief because you so fearlessly talk about the ramifications of that peculiar disease...and odd it is! My Mom always took the faster ride at the carnival...I wish you great ease...humor got us all through the thick of it!
Thank you for your blog - I've only recently received your link through a forwarded newsletter from a friend. So many readers are grateful for your insight and witty way you write. You're an incredible writer. I find myself laughing one moment, crying the next. It's real, it's authentic and you deserve a book deal. This isn't about inspiring - this is about the honesty of your voice. I just found your songs on iTunes - beautiful! Thank you for posting advice to your son - it made me get off my butt and hug my kids.
All my best,
Celebrant Pam Vetter
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