I sat next to my father-in-law (he’ll always be my father-in-law) with my head rested in the crook of his arm, our arms around each other. What a funny pair – he slowly losing his amazing mind to Alzheimer’s, me quickly losing my young-for-my-age body to ALS. He came in and out of focus, sometimes making perfect sense, sometimes speaking some divine confused poetry. “I want to take you with me” he told me. To the afterlife, I wondered? We’re in a macabre race he and I, and that day I felt like I was winning. “I better let you go so you can eat” I said. “ I just did” he replied. “The food of love.”
I am still shaky from my first solo flight on the wheelchair – and I do mean flight. I was alone when it happened. The wheelchair hit a bump at warp speed and I flew 6 or so feet, landing on my knees. There was nothing to hold onto so I couldn’t get back up and had to wait for a construction worker to lift me. I was so shaken I didn’t even track if he was cute. I hurt – arms and legs both - but nothing is broken. I am however completely unable to use the left hand right now even for gross motor stuff. The fingers are jitterbugging and completely out of my control even with my brace on.
I worry about writing about this since just the other day I had to convince my dad that I needed to be independent. He and some of you other concerned citizens might read this and think “she shouldn’t be out on her own.” She should. She will. I would fall again for the chance to go find a restaurant, a card shop or a beach – as I tried to do in Robert’s Creek. No sidewalks there so I took the wheelchair along the side main drag of on my own. My father white knuckled it and apparently tried to get others to check on me, but ultimately let me go even if it meant me getting into trouble ( what did he think I’d do, take a flying leap out of the wheelchair? Oh wait….) I couldn’t make it to the beach
( too steep) but sometimes the reward is in the trying.
3 year old Annabel and 1.5 year old Atticus, my adored niece and nephew are the smart ones. They refused a ride on the chair – lap or no lap - but insisting on pushing me in it! I laughed until it hurt. It was so hilarious and a little heartbreaking to have these beauties behind me guiding my chair. The ultimate test in accepting help.
Don’t get me wrong. I accept help every day. I see the day when I need help all the time getting closer and closer. When someone does for me – from grabbing my arm to opening a door- I take in the care behind the gesture and I recognize that it’s a loving act to accept the kindness as well. I just cherish the things I can do on my own and I don’t want to let them go. If I fall down then okay, I fall down. We all fall down.
Still it is other people that matter in the end run and I’m grateful to have them around. I look back at images from my visit and I want to press them between wax paper to preserve them. Even still there were friends and relatives I wasn’t able to see ( such limited energy, have I) and wish they could have been part of my trip.
Here’s some moments from the folks I did see:
Annabel saying “Bravo boundaries Auntie Carla” or looking at a flower bed and saying “Look at this, I LOVE it!”
Snuggling on the sofa in between my brother and sister-in-law after crying because I can’t draw for Annabel anymore.
Weird man in the park remarking that you don’t often see a “hot redhead in a wheelchair.”
My brother walking up to me and putting his head on my shoulder.
My other brother telling us about his volunteer work for people in wheelchairs which entails, as far as I can tell, taking a quadriplegic to a strip club. I’m not kidding. That same brother crying in my arms in the White Spot parking lot.
Atticus throwing his ice cream down on the ground the way football players throw the ball after a touchdown or field goal or whatever it is they do, then grinning proudly or him intently singing “you” at the end of each phrase of Happy Birthday.
My parents leaving me alone to fall even though it goes against all their instincts. This is an act of love.
A dear friend calling from home to put me in touch with a friend of his who is going through his own health crucible. Listening to the message and thinking I might be able to help someone after all the help I’ve received.
Wheeling along the sea wall with my mother, looking out at the blue blue mountains and the sailboats in their slips and the Burrard St. Bridge. Remembering without regret that I used to ride this route on my bike every day to work. I’m still on wheels. Still traveling the same gorgeous path.
My friend Gordon referring to himself as a “tiling savant.”
My mom saying she’s proud of me.
Some lengthier scrapbook items:
My sister-in-law who has undergone that transformation that many women do when they have children. They become mother to the world. She was always a lover of people but now she is such a remarkable mother (they’re both great parents) and their children are so damned happy. She is much taller than me (I’m 5’8” to put that into perspective) so when she holds me, my head is against her chest and I feel very safe. “How am I supposed to get through this?” I ask rather rhetorically since of course there’s no choice. She coos in my ear “You’ll get through by being weak, you’ll get through by being strong. You’ll get through in love and you’ll get through all alone.” Then she kisses my forehead and says “wow, you smell the same” referring to my brother and I. It makes me happy to know I smell like him. Like me he is also funny but if I’m Edward G Robinson with a machine gun spraying jokes like so many wild bullets, he is an elite Israeli sniper, only taking the shot when he is assured of deadly precision. In other words he kills me every time.
My mother and I down at Granville Market. We walk by a theater where I had planned to try to do Wedding Singer Blues. I was about to get wistful when I see the marquee – fucking Tuesdays With Morrie!!! Based on the book about an old teacher with…you guessed it…ALS. That’s some funny shit. My mother suggested she take my picture underneath the poster, which is of course the only thing to be done on such an occasion. If I can figure out how to add the pic, it’ll follow this paragraph even though I don’t look like a “hot redhead in a wheelchair.”
Reunion. In my late teens I loved my best friend so much and she me, that we bemoaned the fact that we were attracted to men. We were madly in love except for the sex part and would consistently close down a restaurant, a bar, you name it. We had a heart-wrenching falling out 14 or 15 years ago but this trip we picked up where we left off – closing a restaurant, spending the day and night walking, wheeling and talking about the real stuff, crying and loving each other. She helped me take my first wheelchair bus adventure and my first wheelchair cab ride. It’s a miracle. After well over a decade of not being friends, I sat across from her and observed how the love gushed out from me and thought “She must immediately meet the DMC girls.” She quizzed me on them – asking for a profile of each of them. She looks the same as she did in the 80s – a couple of crow’s feet that only deepen her great beauty. I am so very very grateful to have her back in my life.
Talking for an hour and a half with Mac on the phone about Robert Byrd, the large number of left-handed presidents and Ted Kennedy’s brain tumor. Missing him. Annabel told her parents at the airport “We’re back to our 4 family now.” I am anxious to return to my 2 family. We have a lot of catching up to do.
I read what I’ve already written and it really feels like unfiltered journal material rather than blog material, but here’s the thing – these snapshots are the important moments. When I have a bad physical day or trauma like the wheelchair launch, I feel very close to the notion of my own mortality and I love this world and its’ inhabitants with a teeth clenching zeal that I see in my niece. I want to hold tight, fiercely to all of it. To all of you. These are, to be sure, just moments that bring great meaning to me and those who were there, but you all have your own moments like that too. I hope you can love and honor them now, even the ones that hurt.
That’s the perk of this disease – I get to be preachy.