Saturday, June 27, 2009


Someone who reads this blog recently asked me what I think about the blog comments. Now you probably noticed that I don’t comment on comments very often and you probably noticed that on certain blogs there are a large volume of comments. It’s really just too hard for me to comment on them all and although a lot of sites on the internet are intended as a cyber dialogue, this one is really more of a monologue with occasional responses and that’s just how it has to be.

Having said that, I have to tell you that I get really excited every time I see that someone has sent in a comment. And I love getting your comments. I love your kindness and unforced compassion. I love your insights. I love the way you address one another. I love the way you share things about your lives and struggles. In short, the blog comments are an important part of my life, and so you, Muselings, have become part of my wonderful circle of loving friends, whether I know you or not.

A couple of other things about the blog comments -- sometimes people ask me why their comment didn’t get published and I don’t usually feel like I need to answer that because the obvious answer is: it’s my blog, deal with it, but just to let you know, I made a conscious decision to make this blog a place where I don’t back off from talking about the things that scare me or cause me grief but at the same time, I don’t want it to become a negative place. If people want to say bad shit about other people, they can go to I, however, really don’t want that on my blog. Believe me, there are a couple of people in my life –well, at least one…let’s just say there’s not enough band width to go there. So I don’t. This blog is a special place for me and I don’t want to turn it into something ugly.

Another thing about your comments – sometimes people write such complimentary things about me that I get a little scared because I feel like Harold Hill in The Music Man and people are following me as my 76 trombones lead the big parade… of bullshit. Trouble in Blogger City. When people seem to look at me as something bigger than I am, better than I am, I really do feel like a con artist and that Shaggy and Velma and the rest of the Scooby-Doo Gang are going to tear off my mask and reveal me for the average, petty, normal person that I am and I’m going to have to say, “Yeah, and I could’ve gotten away with it, too if it weren’t for you pesky Muselings and your dog.”

Some of this is my insecurity and some of it is because I only reveal one dimension of myself on this blog. You see, this is not an entirely unexpurgated version of my thoughts. I try really hard to be honest but I also leave out the stuff that I think would be hurtful to any individuals (except for Dr. Evan Collier and Julie the receptionist. I’ve made it clear that they’re douche-bags. Or rather, he’s a douche-bag, and she’s a gate-keeping bridge troll,. I’m really proud of that insult.) But other than that, I try as hard as I can to not out the douche-bags in my life, including me because I can be a shit-sack sometimes myself. And if you don’t believe me, just ask my son.

Now I’m rambling. What else do I feel about the blog comments? I feel like I’ve touched a nerve. I’ve hit on a place that I thought was uniquely mine -- my need to find meaning and beauty amidst my suffering, but I realize now that it’s the human condition. We all want to find that. We all want to know that while our time on this earth, may not have a definable purpose, it has moments of grace. And I’m really proud that even though I’m dealing with a lot, I can still offer something to people. So when I say the blog is my lifeline, it’s not even so much about what I write. It’s about knowing that what I write is being heard and that hearing it is helpful to people. I can’t express to you how great a feeling that is.

The internet and cell phones and Facebook and texting and Twitter (the aptly named Twitter, for twits with nothing better to do but boil the complexity of their life into 140 characters – and yes, I know I’ll regret those words when I’m typing with my fucking chin…coming soon!) .All of these things have an alienating quality to me because the more we use them, the more we’re insulated from our own experience with other people. I remember when I was a busy person, feeling a bit of disappointment when I would get an actual person on the phone because I would have to go through the niceties of getting caught up rather than give them “just the facts m’am”. And so we’ve all become this culture of Jack Webb/Joe Fridays, wanting just the facts. What a major

Anyway, I find it amazing that what I think of as alienating has become a public place where we can all meet and connect with each other. It’s just astonishing to me. Even as I draw closer and closer to eschewing electronic forms of communication almost completely and just trying to hug and hold hands and snuggle with people instead; the blog is there and it’s real and it means a lot to me. You mean a lot to me. So for all the times you’ve written and encouraged me, for all the times you’ve boosted me, for all the times you’ve courageously shared something painful that’s happening in your life, I thank you from the bottom of my heart. If you’ve done nothing else, you’ve buoyed me in a difficult time and you’ve left something utterly amazing - in the real sense of the word amazing, - through which my son can remember me. Imagine him looking at your comments or showing them to his children years from now.

Can you think of a greater gift?

And you’ve given that to me.

So I can say without a trace of disingenuousness, I really love you all.

Sunday, June 14, 2009

How Do You Spell Love?

Allison, my sister-in-love, relayed the following story to me:

I was making dinner last night. Atticus and Jason were doing an alphabet puzzle in the yellow room.

Atticus: How do you spell "ear"?I
Jason: e-a-r
Atticus: How do you spell "eye"?
Jason: e-y-e.
Atticus: How do you spell "nose"?
Jason: n-o-s-e
Atticus, climbing up Jason and putting his arms around his neck, nuzzling into him: How do you spell "love"?

I'm sure Jason told him how to spell "love," but I was too busy being choked up to hear it.

Back here in Berkeley, Bella reached over and slipped her tiny hand into mine and patted me on the arm with her spare hand and smiled. A warm feeling gushed through my body. She and Sofia and Matt and I had been watching the demo reel of the documentary being done about me. They drive across the bridge to help and to visit every couple of weeks or so. Matt cooked his delectable cow-free stroganoff and Sofia fed me and helped out with bathroom duty. To watch the demo, Bella had parked my spare wheelchair (the Yugo) next to my big one (the Benz). There we sat, side by side. She is only six – her feet dangle high above the chair’s footplates -yet the depth of her compassion blows my mind. To our right, Sofia started crying about something in the demo and Bella, without glancing over, reached out and offered her mom the other little hand and the three of us just sat there like that, hand in hand in hand.

Earlier that afternoon, Bella read me a story (The Paper Bag Princess - one of my favorites) and she inflected her voice like your favorite elementary school teacher did and gave the titular character, Elizabeth, an English accent. And it was not bad either. I’m still struck by this six-year old girl reading the grownup a story, just as I was struck by my niece and nephew pushing me in my wheel chair. It brings to mind a poem that my friend Alison wrote once called: “Consider the Generosity of a One-year Old.”

In response to an email yesterday asking me to grade my mood and health between one and ten, I had told Kaila, that I was a .5, so this morning I got a call from her daughter, ten-year old Lucy, wanting to know if I had upgraded to a one or higher yet.

Children’s enormous hearts. What can I even say?

Last week was one of those weeks where I wonder if I’m really up for this. If I really have the strength to keep getting up every day and going on and then suddenly, I’m with these kids, playing bumper cars in the wheel chairs, watching a stupid movie, or – amazingly - being shown an open heart - a level of compassion and love that adults like me are often afraid of sharing.

And I think: yeah, I can keep going.

Lee, my respiratory therapist arranged for me to borrow a coughing machine. It’s called the “Cough Assist” and it shoots air down your lungs on the inhale and then sucks everything out of you on the exhale. Most of you Muselings no doubt find it easy to cough, so it’s hard to describe to you what a lifesaver this machine is. Imagine. Someone thought of this machine and invented it and patented it and because of it, I can sorta, kinda talk coherently and breathe properly right now.

And I’m not scared I’ll drown in snot anymore.

I’m grateful to the inventor, but more so to Lee, who along with the other angels at the Forbes Norris Clinic, are another reason why I think yeah, I can keep going.

It’s beauty that keeps me going, beauty like my pretend daughter and caregiver telling me about the difficulties she has with her Dad who has really not been there for her. Her mom died when she was young and in many ways, she’s had to raise herself. And she said very cheerfully to me “But, you know, I’ll end up forgiving him, and I’ll take care of him when he gets old.” And again my heart gushed with love, and then she said ‘But, I’ll probably make him sit in his own poop a little longer than I have to”.

Compassion: it comes in a myriad of forms.

When I was a kid, my brothers and I used to hold our breath when we passed a graveyard. I’m guessing that the origin of this has something to do with The Plague or something, but by the time it reached us in the late sixties and early seventies, it was just the thing we did. I remember as we drove along side the large expanse of green grass and grey tombstones, I would gradually feel like my lungs were going to burst and my eyes were going to pop out and I could barely hold back the giant swelling in my chest. I would watch my face turning colors in the rearview mirror ( Seatbelts? We don’t need no stinking seatbelts!) Finally, I would gasp and the breath would come rushing in like the Mounties to save the day.

It’s different with ALS + cold, because you have absolutely no control over the fact that you can’t breathe. There’s this combined sense of the commonplace because it’s happened so much and the urge to panic because, after all, it’s our nature to breath. And then finally, when the blockage is dislodged, that giant rush of air doesn’t come in like it did as a kid. Instead a raspy little wheeze of breath gasps it’s way in and the sensation feels like drowning might. And then comes the coughing, the gagging and more wheezing. On rare occasions, vomiting. Then later, the sore stomach muscles.

The last time I had a cold, I said that there wouldn’t be a second cold because I’d jump off a bridge first. Well, there was a second cold, but I’m not physically capable of jumping off a bridge and I know enough not to bother asking any of my superfriends to drive me to the bridge and heave me over the railing. So I keep on and I plug away. I put one foot in front of the other, knowing that in a week or so, the veil will lift and I will feel good ( apart from the slow, debilitating fatal illness that is) and I will remember and celebrate all the little joys again.

And I’ll enjoy myself again.

And I’ll breath.

And I’ll keep living my life.

It’s so damned hard to blog but I need to keep carving “Carla was here” all over the internets. I do it for me but don’t worry,- I won’t leave this site without a proper goodbye and after that, I’ve asked Mac to keep you all posted.

I had a dream the other night. It was ‘The Math Dream’ – you know, the generic dream where you’ve been enrolled in a math class all semester but you’ve never actually attended and now you need to take the final exam? I have it periodically. But this time I went to the teacher and I said ‘Please, you have to give me a break, I have ALS, and it took me seven months to get a wheelchair, and I’m in the middle of this nightmare divorce and you have no idea the stress I’m under.’ The teacher looked at me and said ‘Well if you have ALS what are you worried about, you’re not going to finish college anyway.’

And I wonder sometimes: why do I have to take this ALS test? There’s got to be a reason. But there is no reason, it’s just what it is. It’s a random thing – like a music and theater major having the Math Dream 20 years after getting a Master’s Degree. ALS just happened to happen to me. There’s no making sense of it, there’s no finding some powerful purpose in it. I can’t understand it any more than I can understand why a six-year old knows the exact right moment to slip her cool little hand into the hand of a crazy middle-aged dying chick in a wheelchair.

There’re so many ways to spell love, Atticus, and if that’s all that I learn from this experience, maybe that’s enough.

Tuesday, June 09, 2009

A Poem

The Farewell
Edward Field

They say the ice will hold
so there I go,
forced to believe them by my act of trusting people,
stepping out on it,

and naturally it gaps open
and I, forced to carry on coolly
by my act of being imperturbable,
slide erectly into the water wearing my captain's helmet,
waving to the shore with a sad smile,
"Goodbye my darlings, goodbye dear one,"
as the ice meets again over my head with a click.