Getting Back My Voice?

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This news is both moving and a profound reason for hope! When I was diagnosed three years ago, voice banking would have taken eight hours, and I simply didn’t have the strength – or money – for such an endeavor. As you will see in the video,141136 this company was able to recreate this man’s voice with only three hours of recording. Maybe one day, my half hour of recording will be enough to get my voice back!

“I’m shouting hard… This is the start!”

Summer Dreams

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Something about spending time on a covered porch always leads me reminiscing and daydreaming. As the rain clears to make room for the summer sun, I spend hours out there, watching my dogs play and letting my mind float on the afternoon breeze, I remember, and I plan.

This beautiful weather makes me miss canoeing with Evan terribly. The sound of the water as our paddles slid through the gentle waves slowed my thoughts so I could exist in that moment, working in perfect synchronization with Evan. I especially loved our sunset excursions when the world we knew drifted off to sleep and another secret world began to stir, a nocturnal kingdom we could only glimpse before we lost the light and our way.

When I am cured, Evan and I will return right away to the water. We will buy a red canoe and name it Carlos, and he will take us on dozens of new adventures.

The other activity I am missing is something I only did once. I was shy and nervous, so I didn’t get up the nerve to try karaoke until rather late in the game. When I finally sang into that microphone, though, I was hooked. I especially loved singing duets with Evan (he makes everything at least ten times more fun). When I have my voice back, I am going to hit every karaoke bar in town!

Three Dreams and A Dragon

When I was thirteen, I bought a small, blue, canvas-bound book whose title, scrawled in loopy silver script, read, “The Interpretation of Dreams.” I purchased it because every morning, I awoke with vivid memories of three, sometimes four, dreams. About half of them were nightmares, but they didn’t trouble me as much as what I called the Sagas. In those dreams, I lived entire lives, and when I woke up and realized that none of it was real, the resulting devastation was almost as intense as if I just lost actual friends, a husband, children. I hoped that I would find answers about what the Sagas meant and achieve peace by way of the knowledge.

I never found my answers; when I started taking anti-depressants at age fourteen, the Sagas disappeared, so I abandoned my research. However, the nightmares began to run rampant.

Lately, my nightmares have been especially painful. I have three that take turns playing in my nocturnal theater. First, I dream that fierce predators escape from the zoo, lurking the city’s streets, lying in wait for unsuspecting humans to cross their path. Unfortunately, I’m the only one who knows this, so it falls to me to protect my husband and sister even though I don’t have a single weapon.

Next up, I awake on a dark beach. I lay on the rough sand, utterly confused by my surroundings. Then a pair of hands reach down to help me up. I realize too late that they belong to my rapist. Raising a hand to caress my cheek, he says, “We’re the last people on earth. It’s just us. Now we can be together forever.” It’s then that I notice I’m wearing my wedding dress.

The worst dream starts before I even fall asleep. As I drift, memories of the words of my last Lower School Director and the Head of School echo in my head…

“Your students are bored.”

“Their parents lack confidence in you.”

“Maybe your personality is the issue. Go observe the Spanish teacher. Try to be like her.”

“You lack presence in the classroom.”

“Have you considered being a librarian? Then you won’t work with children every day, and you can be around those books you love so much.”

“You’re too academic.”

“Try not to look so frail. Stop hunching over your cane.”

“Are you really teaching if the kids aren’t learning? ”

“Fifth grade is an important year, and we need a teacher so fantastic that families don’t even think of transferring to another school for sixth grade. There are five families thinking of leaving – you’re not a strong enough teacher.”

“I’ve been disappointed in you from day one.”

Then, when sleep finally comes, I am teaching in a classroom with glass walls. I don’t have a lesson plan, and when I see the Lower School Director and the Head of School watching me, I panic, making one stupid mistake after another, knowing each is a nail in my coffin. The dream fades when memory wipes away the fear and reminds me that it’s over now. I survived being kicked to the curb, and – awful as it was to end my career on a low note – they can’t hurt me anymore.

I don’t need the book to pick up the themes these dreams share; in each one, I am caught off guard and helpless. That is the essence of ALS. No one is prepared for the diagnosis (most cases can’t be tied to a family history, and lifestyle seems completely irrelevant). To make matters worse, the diagnosis comes with a decree of helplessness since there isn’t a thing you can do to fight back. I’m guessing that I am reliving the trauma of the diagnosis, but I don’t think it has to continue.

I recently realized that I am not helpless, not by a long shot. How many pieces have I written detailing my commitment to my range of motion exercises, my eagerness to participate in drug trials 135164, my openness to new medications and protocols 136165 to manage my symptoms? I use the cough assist 137166 to keep my lungs strong, my feeding tube to maintain proper nutrition and hydration, and my tobii to prepare for when I lose my ability to speak. I am not sitting on the sidelines watching this monster consume me. I am fighting the dragon with a small dagger, slashing and slicing bit by bit until I bleed it dry. From now on, I will hold this gruesome, glorious image in my mind as I fall asleep. Maybe then I’ll dream of slaying the beast.

Learning Helplessness

Today while out on a (st)roll, I witnessed a toddler run out into the street in front of a car. I was unable to do what every molecule in me demanded: race to the boy and snatch him up out of harm’s way. I couldn’t even scream in horror or point and shout so a neighbor would notice and intervene. I could only watch.

Luckily, just as the child reached the middle of the road, the boy’s mother realized he had wandered off and saved him.

I thought by now I knew what it is to be helpless. When I fall, I can’t get up. I am not able to feed, bathe, or dress myself. I can’t even be left alone for more than one hour. I had no idea, though.

Now, I know.

Image credit – Marc Chagall’s “Un champ de ble apres-midi d’un ete”

 

A Lesson on Joy

In the movie adaptation of my life, the climactic scene would go like this: the camera slowly sweeps up to where I am snuggling into a warm plaid blanket on a rustic porch.  The sun peeks out from where it slept behind the mountain range. The soft light on my face shows I’m at peace. I struggled throughout the whole movie with how to carry on living, but last night I found the trick. My friends pushed my wheelchair out into the meadow behind my sister’s cabin, and we stayed up all night watching the stars, singing, laughing, and telling secrets. I know now that this is the key: live in the moment, live for today, and let no adventure pass me by until I close my eyes for the last time.

That’s what dying people are supposed to do, right? It’s our bittersweet version of happily ever after.

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Hanselmann Photography

For me, though, there was no mountain cabin, no midnight epiphany. For the longest time, there was only the looming specter of my death. When I was first diagnosed with ALS, I described the doctor telling me the news by saying, “He told me I’m dying.” I used to get those two things mixed up: having ALS and dying. They do sound the same. After all, there is currently no cure or treatment for this ruthless disease. Immediately after diagnosis, I planned everything from who would get my beloved cameo necklace passed down from my great grandmother to the type of funeral I want. I imagine a ceremony around a sapling which my family and friends can visit and tend to as it grows into a memory tree. I hoped my loved ones would picnic there, and children would climb my branches.

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Of course, not all of my death thoughts were so serene. The prospect of dying young fueled what became an obsession with fading into a distant memory as my loved ones grow old without me. I worried most about what I would become to my husband, Evan. I imagined being a brief chapter of his life before he meets the woman who will be the main act, the mother of his children. She will succeed where I failed, giving him the family and future he deserves, transforming me into a tragic footnote in his biography. With my mind drenched in such excruciating fears, how could I surrender to the beauty of the present?

A series of fortunate events saved me from despair. First, we moved to Portland, where I received the exact kind of care I hoped for at my new ALS clinic. I now work with a creative, emotionally intelligent doctor who is full of hope regarding treatments currently being tested. She immediately empowered me by involving me in one such trial. Finally, I was doing something to fight back, and I dared to dream that the end of my story might not be written on a tombstone.

Then, a few months later, I found the next rung of the ladder that I would climb towards joy. ALS Awareness Month crept in, and a flurry of fundraising activity swept across my Facebook feed. Guilt pressed down hard on my shoulders; I was the one with ALS, but my family was doing all the advocacy work. As a last minute attempt to get involved, I decided to write a little note on Facebook every day about my life with ALS. I didn’t expect to generate much interest, especially since I wasn’t sure how much had to say on the subject. Flash forward three days, and I was pouring my heart out to a shockingly large and invested audience. I became enamored of power those posts gave me over my experience. That power, just like the power I gained from the drug trial, gave me the bravery to fight like never before. I dove into fundraising for the ALS Association, and my doctor and I collaborated with ALS Worldwide to learn new ways to preserve my speech, strength, and mobility. As my hope blossomed, I realized I couldn’t honestly fight for a cure without spending at least as much time imagining my life after ALS as I had spent fixated on my death.

I came to understand that joy will remain a distant dream if a person can’t give equal head space to the best and worst outcomes.

Real, lasting joy pumped from my heart to every inch of my failing body when I gave myself permission to dream. Now, I imagine that Evan and I will make up for all the years we have spent bound to our home and hospital by renovating an Airstream trailer and roaming all over the country, exploring national parks, chasing northern lights, and following music festivals. I will return to writing novels because the miracle of a cure will mean that a blog about ALS will be unnecessary. Evan will play guitar in the evenings, and I’ll sing along like I used to. Everything will be beautiful, and nothing will hurt.

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A few months after I started my blog, I got a feeding tube. Lying on table looking at the distant ceiling of the operating room, it occurred to me that this would be the first scar ALS left on my body. I got sad thinking about how I would never get rid of it, even if one day I no longer needed the feeding tube. But then, I thought of myself leaning out the window of the car on a sunny day with hundreds of miles ahead of me, Evan looking handsome in the driver’s seat,  our Airstream trailing behind us, glittering in the sun like a mermaid tail, and I didn’t mind a small scar at all. Some day, it will be the only reminder of what I suffered, and should I ever get scared embarking on my new adventure, I can look to the hole sewn up right beneath my heart and know I will survive.