Fortune’s Fool

When I was sixteen, a fortune teller at a fair predicted I would meet and fall in love with a man who would physically take care of me. At the time, I didn’t understand what she could possibly mean. Would I rely on my husband for money? I was hungry for independence and therefore a bit insulted, but most of all, I was bewildered. I needed more time with the fortune teller in her enchanting red silk tent, but she looked pointedly at her watch, then tapped the cash tray. My empty wallet made me unwelcome.

When I asked about the man I would marry at the beginning of our session, I did not imagine the ten minutes I paid for would pass so quickly and end so mysteriously. I wondered about her words for more than a decade, right up until my ALS diagnosis twelve years later. That day, I finally got the answer I sought. Doors slammed in my face. All around, clock needles spun backward. My end crept forward in every shadow.

Now, I rely on Evan to bathe, feed, and dress me, to keep me steady when I use my walker in the bathroom, even to wipe me after I use the toilet. He holds all the crumbling pieces of my body tight in his hands, as though trying to keep them safe until the miracle pill that can put me back together again finally arrives. My marriage looks nothing like it did when we were twenty-one or twenty-five, or even last year. Playtime is over, and we struggle daily to survive.

However, I realized as Evan delivered medication into my body via my brand new feeding tube, that what really matters remains unbroken. Even after all we’ve lost, he still loves me, and I will always love him. That knowledge is the bedrock of my existence, and it has yet to crack. Together, we chase happiness through a tangle of feed lines and IVs, not ready to surrender to how we live now. Side by side, with white knuckles and bloody nails, we crawl forward.

Benvolio: Romeo, away, be gone! Stand not amaz’d, the Prince will doom thee death if thou art taken. Hence be gone, away!

Romeo: O, I am fortune’s fool!

Romeo And Juliet Act 3, scene 1, 132–136

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

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.

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

Welcome to the Helicarrier

Warning: Excessive Marvel references ahead.

This is not the story I wanted to write today. I planned on sharing something emotional and joyful. It was going to be a bigger piece, and I looked forward to a long stretch of appointment-free hours to get it done. However, ALS doesn’t care about plans. Like Loki in “The Avengers,” it lives for chaos.

helicarrier-ideation-19c_web

When I got out of bed, it was like stumbling onto the Helicarrier when Thor and the Hulk used it as an arena. The stress had my heart racing and made my speech even messier than usual. Evan was marching around the apartment on the phone trying to get an explanation for an unexpected and rather staggering medical bill. My theory is that marching keeps his energy up during marathon conversations about insurance and durable medical equipment – not naturally thrilling topics. Laura was on the phone at the table hunting down the right type of medical mattress for the hospital bed being donated to me (!!!!). I settled in beside her and she started spooning yogurt and pills into my mouth while on hold. Things must have been going well for her since she still in Bruce Banner mode. God help whoever tried to blow her off; she’s secretly the Hulk, and she’s on my side. Between her fierceness and Evan’s Captain America-esque determination, I felt plenty loved.

I also felt useless.

We finished with the pills, and Laura took the dishes to the sink. Then, as she dialed another number, she slid a piece of paper my way with notes about what she learned so far to catch me up. She went into her room to continue her work, and Evan parked himself next to me, hanging up and diving straight into a summary of where he was in his investigation. I made some notes about emails I could be writing to help, and noticed my voice getting stronger. His phone rang, he kissed my head, and he was off.

Laura’s door flew open at that moment. She raced to the table, skidding across the floor in her rush to get more scratch paper. I laughed hard, and she struggled to remain calm and polite to whoever was on the other end. Business now; laughter later.

Good caregivers can make people with ALS feel like Helicarrier leader and superhero guide Nick Fury. We can’t always speak or even hold a pen to write a phone number. If we are having a really bad day, yeah, we might be wearing an eye patch. Our minds are still sharp, though. There are days when we need rest, but there are also days when we like commanding the Helicarrier by pitching in, being informed, sharing our opinions.

We are grateful to the caregivers who know how to let us take back some control, the ones who remember that every now and then, even the weakest among us likes to stand at the helm, if only to remember how it felt to fly.

 

nick_fury_helicarrier

Don’t Talk-A-Thon: Part 3

“You do not need to leave your room. Remain sitting at your table and listen. Do not even listen, simply wait, be quiet still and solitary. The world will freely offer itself to you to be unmasked, it has no choice, it will roll in ecstasy at your feet” – Franz Kafka.

Those of you who participated in the Don’t Talk-A-Thon are sharing such a wide variety of stories with me. I must thank you again for being both involved and open about your experience. Like any well-designed activity that includes thoughtful people, the results were not entirely what we expected. I heard two main opinions of the hour of silence.

First, the most predictable and popular opinion: silence is uncomfortable! I know this is what I expected to hear, and I imagine the event organizers did as well. Being silent in a checkout line when a clerk is asking questions and you are fumbling for your credit card is awkward to say the least; you can practically hear people behind you wondering what is wrong with you. Or when you see your dog eating garbage and you are too weak to stop him and unable to call to your husband in the next room… that’s enough to make a person panic. Believe me. I’ve been there. Forced, unbreakable silence makes you dependent faster than you can imagine. Your position shifts to observer rather than actor in your own life, especially in a culture that values talking incessantly, quickly, and loudly. In conclusion, silence sucks.

This brings me to the second opinion of the hour of silence, the one that caught me off guard: there is peace in silence; why don’t we embrace it more often?

I know I said that I no longer find peace in silence, largely because choosing when to be silent is a luxury I hate losing. It makes every silence a tiny prison. Still, when a friend wrote the following, her words resonated with me the more I thought about them:

I’m silent a lot of time, between reading, writing and gardening. I wish we lived in a culture that didn’t value talking, incessant talking, so much. It’d be easier to hear what matters.

My first, sleep-deprived, frantic thought was, “This is not about gardening! It’s about my life!” I wrote back to her in what she would probably generously call a snappy tone.

And that’s the thing that got me thinking in those guilty minutes after clicking send… My friend is generous, and wise, and infinitely kind. Her ideas have always been worth hearing, her words respectful, so what was I missing?

I read her note once more and remembered her passion for gardening. Whether she is working alone or with family, it is clear she is most in her element when quietly nurturing precious little things. She’s got wit and sass – plenty of it – but she knows the value of balance. She understands what Franz Kafka meant when he said the world will unfold for those who wait for it quietly. However joyful a chatty dinner with friends can be, revelation and wonder don’t live there. They live in sitting side by side watching a sunset together, letting yourself feel deeply in another’s presence.

This is such an important reminder for both pALS and their loved ones. Those of us with ALS who are losing our speech will continue learning new ways to “talk” and asking for better technologies to give us our voices, but healthy people will always talk faster and louder than we can manage. We will still be in an endless race to keep up. So maybe, every once in a while, give us a rest. Take us to your garden. Put our stiff, curled hands in soil, and for once, let our breaking bodies be a part of creation. Join us every now and then in the silence until we forget to think of it as a cage. After all, the greatest, freest things are silent…

“See how nature – trees, flowers, grass- grows in silence; see the stars, the moon and the sun, how they move in silence… We need silence to be able to touch souls.” – Mother Theresa