Cathedrals: On Losing My Voice

“In my mind I am eloquent; I can climb intricate scaffolds of words to reach the highest cathedral ceilings and paint my thoughts. But when I open my mouth, everything collapses.”

― Isaac Marion, Warm Bodies

A Wind in the Door

Only two more days until my Tobii Dynavox comes. I cannot wrap my head around this. I’m getting back the ability to text and talk on the phone. I will be able to write emails and blog posts at a more normal pace (right now, my fingers are a total mess, so I type like a snail).

Change is in the air, a wind is in the door. My voice is slipping away, and technology to replace it is stepping in. The arrival of my Tobii Dynavox will be an emotional time; I’m scared I will cry.

 

“I wish human beings couldn’t have feelings. I am having feelings. They hurt.”
― Madeleine L’Engle, A Wind in the Door

Bringing Brain Computer Interfaces Home

Technology is the answer until medicine cracks the mystery of ALS. I am thrilled with the Tobii Dyanavox I am getting, and I can’t believe even more advanced assistive speech technology is on the horizon. My favorite part of reading this post, though, was discovering that even in the testing phase, outreach efforts are being made to allow pALS who live far from clinics to use BCI. Even the most advanced machine is useless if it is not placed in the hands of those who need it.

The Opera and Mosquitoes

This morning I tried to buy opera tickets as a surprise for Evan (he is a major fan), and all accessible seats were sold out. I know it’s not the end of the world, or even cause for tears. Operas are clearly a luxury. Still, incidents like this chip away at my loved ones’ assurances that I am not bringing them down. I remember the countless, tiny limitations hovering around me like a cloud of mosquitoes. I remember I can’t be the wife I was: the one who goes on romantic sunset canoe trips, holds hands with her husband while walking beside him, hikes with him in the afternoon, and goes stargazing in the park with him at night.

Wheels

My enunciation is getting rough. The letter “s” is my particular nemesis. I slur and lisp so badly, I have stopped using plural forms, and I avoid contractions. This afternoon, though, my sloppy “s” saved the day.

By 4:00, it felt like everything that could go wrong had already happened. A scheduling error left me without a caregiver, Pickle threw up after eating too much of the food that our parrot Jasper enjoys tossing to him, and the taxi I had booked way in advance never arrived to take me to a doctor appointment.

However, I didn’t want to end the day this way. I simply refused to let the sun set on this note. You see, I have a mindset that has led to me being labelled naive and unrealistic, but I can’t seem to shake it. I suffer from a relentless optimism, a belief that it is never too late for things to get better. Maybe that really does make me naive, but I like to describe myself with such words as “resilient,” “resourceful,” and “dauntless” instead.

Consequently, when my new cab arrived bearing a kindred spirit, I was delighted but not surprised. Every day holds some shred of happiness if only you remember to look for it. Doju, my driver, also had a rough start to his day. The cab he usually drove was out of commission, so his boss saddled him with the taxi outfitted as a wheelchair van… a vehicle full of equipment Doju had never seen before.

Anxious not to mislead me, as soon as he parked at the curb, he confessed, “I’ve never worked with a wheelchair van. I don’t know exactly what to do.” His anxiety aggravated his speech impediment, and I could tell he was now embarrassed on multiple fronts.

“That’s OK,” I replied, not bothering to hide my slur over the contraction; you have to be willing to give if you’re going to get anywhere important. “Let’s figure it out together.”

And we did. Rather quickly.

We fell right into conversation once we hit the road. His stutter grew less pronounced as I waited with patience to hear him out. He got the hang of my own impediment, and then it was easy to talk and listen. We shared chocolate chip cookies I had in my purse (welcome to my life in the Clinic weight maintenance program; must love calories), and relaxed into one another’s company. It ends up Doju has a wicked sense of humor.

“Rachel, you are just great. Here’s my card. Call anytime,” he said.

“You are so sweet!” I replied, taking his card.

“Oh, no, you misunderstand,” he grinned. “You may call me anytime, but I never promised to answer. I think I will see your number fill my call log and just click delete, delete, delete…”

It ends up both stuttering and slurring disappear in laughter.

Stuck in traffic, I learned he had been born in Tibet, but was whisked away so quickly to a safer patch of earth that he cannot remember his home. Despite this, and knowing he can never return, he chose not to tell his story as a sad one. Instead, the tale he shared was about love and accepting loss. I was amazed, not for the first time, at how deeply our most distant brothers and sisters can speak the language of our own messy hearts.

Traffic crawled, and I knew I would miss my appointment by a half hour, but the day was still salvaged in my eyes. As we sat on the glimmering hot road, Doju marveled at the brilliant sunshine after such a rainy spring. I pointed out the riot of colorful flowers spilling out of gardens lining the street.

There were so many words neither of us could manage to say, but still, we chose to speak to each other. We chose to see roses.

A Pashmina For My Appendix

Today I bought shoes for the first time since my diagnosis. It was also the first time I bought shoes I would not actually wear for walking. My new sandals will just serve as a barrier between the soles of my feet and my wheelchair’s foot plates. No more worries about arch support or gaping at my heel. No test runs to make sure the shoe doesn’t rub the small bulge on my toe where I once snapped it during ballet. Shopping for shoes was like getting a frivolous accessory for a vestigial organ, a pashmina for my appendix. It was a novel experience, but ultimately too bizarre and sad to look forward to repeating.

Coping and Coughing

My new coping mechanism for the Cough Assist exercises seems to be a success. As soon as the mask goes on, I close my eyes, and I let myself sink into the whooshing sound. I pretend I need the mask because I am diving impossibly deep in a cold, dark sea. I won’t see much – light can’t reach the creatures here – but I know I’m surrounded by life. Every now and then an electric flicker from some alien creature reminds me of this. I stop resisting the air flooding my lungs and float in the shadows of waves miles above. I’m at peace in these depths where sunshine and beeping monitors and ALS are nothing more than myths. Breath and night rush in through the mask every 1.8 seconds, and they taste just fine.

Cough Assist

Recently, I got my Cough Assist breathing machine. It will help prevent me from getting pneumonia and exercise my lungs to keep them strong (you know, since I’m not doing yoga and cross training so much lately). It pushes air into my lungs and sucks it out, forcing me to breathe deeply as though running a marathon and then cough as I exhale in order to clear my lungs. However, I’ve used it twice so far, and what it really reminds me of is that machine from “The Princess Bride” that sucks the hero’s life away. I’ve been assured this in fact does the opposite. For now I remain suspicious…

Cough Assist

My sister Laura practices using the Cough Assist on me

Remembering Who I Am

ALS doesn’t just a destroy your body; it can also destroy your sense of self-worth. As I need more and more care, it is hard to believe I am not a burden. My sense of value is under constant siege.

Fortunately, I have found that kind words often come when I least expect them and most need them. My heart swelled when an angel from my past posted this on Facebook:

My sweet, brave friend whom I have known since she was a little girl is fighting for her life after being diagnosed with ALS at 28 years old. I babysat for Rachel, and she has a true gift. She is one of the most talented and eloquent writers, and this was evident even before her diagnosis. Now she uses her gift to spread awareness about her diagnosis, her daily fight and what we can all do to find a cure. Follow her story. Her words are eloquent, real and amazing. If you are feeling generous, donate to the ALSA on her behalf. If you can’t donate monetarily, donate with prayers for this sweet, amazing and beautiful girl. It is a privilege to call her a friend and to have known her since she was 5. Love you, Rachel.

Never hesitate to tell a sick friend what you admire about him/her. Let your friend know that despite needing more, he/she is still a bright spot in your life. Healing words strengthen our hearts and our will to fight in a way no medicine can. For every dose, we are more grateful than words can express.

The Wheelchair and the Labyrinth

Entering the labyrinth of vintage furniture store Lounge Lizard, where the test begins. Do not be distracted by baubles, for the path is fraught with many dangers and temptations.

ronkaplanphotography-9

You see, the ultimate test of wheelchair agility is successfully navigating a vintage store without breaking anything…

Even when adding a tiny dent might drive the price of that mid-century modern desk down…

Even when there is a pink cement poodle lamp in the way that could use a nudge…

Talk about self-control and excellent steering.

I have heard the siren’s call, though. I’ve bought four chairs, two dressers, and two night tables from this delightful maze. There s no true escape for me. I will traverse these aisles again soon, battling with both my wheelchair and my heart…