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
Atticus: How do you spell "eye"?
Atticus: How do you spell "nose"?
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.