For the Love of Dog

 

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I have become a tobii wizard. It’s true. Once upon a time, it took me fifteen minutes to type one paragraph. Now, I glide across apps, carrying and adding to my content, dipping into shortcuts to rearrange my words into uniquely crafted messages that sound authentic to yours truly – all at a speed that constantly wows clinicians. Despite my skills, though, using the tobii is still taxing work. I will never be fast enough to keep up with the natural flow of conversation. Still, I hurry and exhaust myself in the process.

However, there is one individual who eases the tension of the race to communicate because she is also nonverbal. For five years, Malka (introduced in “Someone to Watch Over Me”) has been my faithful, furry companion. On the surface, we don’t have much in common: she has four legs and I have wheels, she swallows her kibble whole and a gravity bag slowly drips formula into my stomach. I am becoming  more mechanical, and she remains pure, divine animal. But when we lay down side by side, we speak our own secret language. Eye contact and perked ears or my raised brows, touches, wiggles, and wags… There’s nothing we can’t say, and our talks are just my speed. She’s a source of solace like no other as I fight the monster inside of me, and sometimes when she looks at me, I swear she understands what I am fighting and her role in the battle. I am endlessly grateful for my silent soldier.

This song reminds me of my fur baby every time I hear it. It also reminds me of Evan, but pretty much everything does. “We laugh until our ribs get sore, sharing beds like little kids” even though everything outside of them grows scary. At least we have each other.

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.

biodegradable-burial-pod-memory-forest-capsula-mundi-3

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.

orvis-airstream

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.

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

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

Don’t Talk-A-Thon: Part 2

Hello all! I’m already impressed, touched, and overwhelmed by your stories of how your hour of silence went today. I would LOVE to share your stories of silence; it would be amazingly powerful to have them all in one place. Please consider sharing your experience below. If you are not able to spend an hour in silence today, go ahead and share what you would miss or fear if you were stuck in silence. Your empathy can move mountains and inspire ALS awareness!


I didn’t speak for an hour and it wasn’t all that easy… My mom and I were sitting at the kitchen table having coffee reading the paper and being silent. Every once in a while a word would almost come out and I would catch myself. I was mindful of the fact that this Made communication so difficult especially with someone else in the room. A lot of other emotions such as frustration and anxiety. Rachel is so brave and I grieve for her and for Evan every day but at the same time I remain hopeful that one day there will be a breakthrough, the one we all are waiting for.” – Renee (my mom!)


I had planned on taking the vow of silence, but my husband’s feed tube had an issue, and I needed to speak to our hospice team. But that then brings up they thought of, what if he needed to communicate the issues to the team? How frustrating and difficult it would be. So even without taking the vow, I know the horror he would have to go through. ALS may cripple one person’s voice, but thankfully, there is usually a village to roar for them!” – Glynis, author of Life After ALS: A Caregiver’s Journey


“I participated today. I occupied myself with reading a new book next to Harley on the bed, and to be honest it was hard. For one, I drifted off for 5-10 minutes, and it was hard not to talk to Harley, as I normally would, as I petted him with one hand and held my book in the other. At first, I was frustrated by my forgetfulness, but then I reassured myself the whole point was to think about what it would be like if I couldn’t verbally express myself. I was ‘trying on’ silence and checking myself in the mirror, so to speak. I did share my mission with a friend this morning at church, and it moved her. So I don’t win any awards today for successfully keeping silent, but my intention was pure.” – Mitzi


I wasn’t able to do the hour of silence today but if I did it would be so difficult to not be able to tell my family I loved them.” -Sarah

 

 

 

 

Don’t Talk-A-Thon: Part 1

Today is the Don’t Talk-A-Thon, a fundraising event in which participants vow an hour of silence in support of those who are forever silenced by ALS. In honor of this special event, I am sharing a very personal and painful story about the first time that ALS stole my voice. Remember, for me and countless others with ALS, our voices disappear permanently as a result of this awful disease.

The Sound and the Fury

Before ALS, I associated silence with prayer, reading, sleeping, being comfortable with friends. It was full of promise. Now, I know silence can be sheer terror. It falls like a knife from your hands to the kitchen floor, clattering around your bare feet. It paralyzes you with its chaotic power.

I knew it was coming. My voice is fading to nothing; that was established months ago. I hadn’t really imagined what it would feel like, though. I may have had a vague notion that permanent laryngitis awaited me, but I understand now that it’s so much more than that. I learned the truth when I spilled a glass of water by my computer (weak fingers). I couldn’t lift the computer out of the way (weak wrists). I imagined songs, stories, and photos being leeched out of the laptop into the puddle. Panicked, I called to my sister to come help me.

No sound came out. My tongue was heavy in my mouth. I felt like I had been slapped in the face, my breath stolen from my lungs. On the third try, I finally understood. This was my disease, a preview of what’s ahead. My horror rendered me motionless. My sister was in her room talking on the phone, but she might as well have been on another planet. I hit the alarm on my wheelchair, but Laura couldn’t hear me through her door. Malka raced to me, recognizing I needed help, but she couldn’t understand what was happening, and what could she have done anyway? I wanted to scream.

I broke into tears while Malka ran in frantic circles, panting hard in her desperation. A hot, fuzzy tingling sensation climbed the back of my neck, and all I knew was that I needed Evan. Despite my clumsy fingers, I managed to text him that I needed help. He was at work a few blocks away. He flew to me, his footsteps pounding down our hall faster than should have been possible. He crashed through the door and was by my side before I could blink away my tears, as if by moving quickly enough and wanting it badly enough, he could save me.

Evan held me and I sobbed for a while, calming down once I realized I was making a lot of noise with my crying. That was reassuring, but when I tried to speak, my enunciation was too messy to understand. My words sounded like a sad foreign language.

I resigned myself to the fact that I wouldn’t be speaking intelligibly until I recharged. A storm rolled in from the mountains, filling our valley with night dark clouds so it seemed far later than four in the afternoon. The lights in the living room became far too yellow and dim. My bird screamed then, and fluttered around his cage. I checked his food and water; there were plenty of both. His favorite nap area was clean. Laying back down, I felt awful that I couldn’t figure out what he needed. He chirped and squeaked, but it meant nothing to me.

I drifted off watching him flap around, never figuring out what he was trying to say. I remember thinking, though, just as I lost consciousness, that I had only narrowly escaped my own cage. My stomach rolled and I got dizzy imagining the door still open, waiting for me.