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.

Sleepwalking

Tonight, after reading and listening to a podcast for a few hours, I felt stir-crazy from sitting for so long. I needed to get up. Specifically, I felt like trying out the Movements I saw on the Netflix series “The OA”. I was just about to do that when I remembered I could not get up.

This is not the first time I have forgotten my limits. Sometimes when I wake up, I plan on walking to the closet to pick out my clothing. It takes a few seconds of trying to swing my legs the edge of the hospital bed (how I miss the ankle-aching cold of morning floorboards beneath my bare feet!) to remember I can’t walk that far.

Perhaps I forget because I can walk in my dreams. Every time. However, even in my dreams, I am aware that walking is unusual for me. Usually, I dream that I am walking and then suddenly remember that, like Cinderella and her pumpkin and rag dress, my legs will return to being essentially useless by midnight. Sometimes, I even feel them weaken and my knees buckle. Even in my dreams, I cannot escape my disease.

Shrugging off the crushing weight of realizing my disability anew, I force myself to forget that I am stuck sitting and will continue sitting for the rest of my life, or until a cure is found. I look at Evan and my pets and try to let the feeling of being loved overwhelm the feeling of being trapped.

 

How To Pee From A Sling With Dignity

Immediately upon being diagnosed with ALS, I heard from doctors, support groups, books, and websites that this disease will steal my dignity. I wanted to be on guard against this, but there was a problem: I didn’t have a clear understanding of what dignity means. It was always just a collage of images: Dame Judi Dench’s face, a smattering red shame, and a slug trail across the canvas indicating where self-respect left the building. Only when I was in danger of losing my dignity did I feel it running through me.

The night I learned about dignity started with horrible muscle spasms in my limbs. Fresh out of marijuana, I had to fall back on Vicodin, which is less effective and leaves me unable to move because my balance suffers so greatly. I was only a few hours into my deep narcotic sleep when I woke up with a serious problem: a painfully full bladder.

“Evan,” I whimpered to my sleeping husband. “I have to pee really bad!”

“I’ll get the walker,” he mumbled, easing out of bed.

“I can’t stand up for the transfer to the commode. The vicodin gave me noodle legs.”  I tried to keep my voice steady, but I was afraid that if I didn’t get to the commode fast enough, I would have an accident. It had happened a few times at the beginning of ALS. This was before I started a medicine that silenced the fried nerves tricking my poor bladder into letting go.

Evan paused, considering. “We have to use the Hoyer lift,” he concluded. “It’s our only option.”

I wiggled to help Evan put the Hoyer lift sling underneath me. Normally, it would wrap around my legs as well and hold me in the fetal position while Evan used the lift to raise me off the bed and put me in the wheelchair. However, now that I needed to land on the commode, my pants had to come off.

For the record, hanging pantsless in mid-air in one’s bedroom is not nearly as fun as it sounds, especially when abrasive canvas ropes curl a person so her legs are smashing a full bladder.

“Hurry,” I squeaked from inside the sling, trying hard not to panic.

“I’m lowering you over the commode now.”

Except when I landed on the commode, I was on my back. The commode is narrow and shallow. It does not tilt like my wheelchair to catch me as I descend. Evan immediately raised me up, promising, “I’ll try again. We’ll figure it out.”

At this point, the Vicodin had me thinking I was becoming a chimpanzee baby in a swinging leaf-cradle. I was not really in a place to strategize, and I silently thanked god for Evan.

However, one more try, and it was clear I would not be landing on the commode. I started crying. Between the way the Hoyer irritated my bare legs and my burgeoning belief that I would never be able to pee again (courtesy of the Vicodin), I was losing it.

“I think,” Evan began, then paused just long enough that I knew I wouldn’t like what he said next. He started again: “I’m going to hold the bucket from the commode under you; you’ll have to pee like that.”

By then, I was sobbing. “I can’t,” I cried. “It’s too humiliating.”

“It’ll be fine,” he soothed. “I swear this will work out just fine.”

As he said these last words, I felt the bucket press against the back of my thighs. I cried harder, the pain in my bladder sharpening.

“You can do this,” Evan encouraged me gently. “I’m right here.”

Choking on the mucus and tears of my embarrassment, I finally let my bladder go, mostly because I could not control it anymore. My hair clung to my sticky face, tangling in my lashes, and I looked for patterns in the textured ceiling to get my mind away from this horror. I couldn’t escape my feelings, though. Something vital around my heart fractured.

“That’s my dignity,” I thought, imagining I could see it floating away.

And then…

“You’re doing so well, honey,” Evan said, full of warmth and pride, all because I was peeing into the bucket he held.

The sound of his voice arrested the pieces in their ascent.

“Everything’s going well. There are no spills. I’m so proud of you.”

The pieces hovered and, in the unhurried way of feathers, drifted back down to me.

Then it was over. Evan removed the bucket and put it back in the commode. He put his face by mine, his hands brushing my hair and tears from my cheek, then kissed my forehead and said, “It’s all over, and you did so well. Do you feel better?”

“Yeah,” I replied softly, my breathing evening out.

Evan used the lift to settle me back in bed. He pulled up my pants and tucked me in. After the rough sling, my sheets felt luxurious. As I fell asleep, my thoughts returned to dignity, and I finally saw it clearly. Now I know how to use it.

Here’s how to pee from a sling (or do any other wacky thing your heart desires) with dignity :

  1. Know the nature of dignity: Understand that dignity is a fine gold filament threaded through the spine and pulled taut so a person can stand straight.
  2. Surround yourself with people who value your dignity: Your sense of dignity can be delicate. It has to be nurtured.
  3. Have confidence: With the right attitude and a solid friend, you can get away with almost anything. Just hold your head up and think of running water.

The Blue Room

4

When I was diagnosed, I choked on fear beyond any I had ever known. It easily surpassed even the terror I felt when I was raped and almost murdered. At least then there was a chance I could make it out alive. At the moment of diagnosis, blood rushed to my face, making my skin burn. My ears rang, both deafening me and heightening my senses so I could hear the doctor’s tears. A black cloud ate up the edges of my vision, and I thought, “This is death. It’s black and nothing and it’s coming for me now.” I had just enough time to notice the absence of Jesus in the hungry darkness when I saw my chiIdhood Christmas tree in perfect detail. I hoped dearly to see it again.

Imagine, all of that in a matter of seconds.

Then, I collapsed against Evan, and an umbrella came over us. I thought of nothing but him as we sobbed  together until we were nauseous. My mind spun on this loop: “I don’t want to leave Evan. He will be so sad to lose me. I can’t let this happen to us.” That train of thought possessed me. It still does. I can’t conceive of being separated from Evan. It shouldn’t be allowed. Doesn’t God know that I love Evan more than any human has ever loved another?

But a person can’t feel such an intensity of horror forever. That alone would be fatal.

This is how I live now. The darker feelings come in small chunks, so I am able to understand them as singular dead leaves moving along, unable to do me any real harm. I give them space in my river until they drift on, leaving the water clear. In the clean river, I am strong  enough to hope.

Still, sometimes when I lay in the dark waiting for sleep, I remember the blue cinderblock room where I heard the news, and I feel like I never truly left. It has become both my Hell and my home.

Cloudgazing

Sitting in my dark apartment, I watched the clock eagerly, biting my lip as I waited for 9:30. Because of my feeding and medication schedule, I rarely go out at night, but I was about to make an exception. Three more ticks from my kitchen clock, and I put my wheelchair on high speed, zooming down to the corner cafe to meet my friend Natalie.

“You’re here,” she stated as I approached. We both know me actually showing up when I promise is a rare occurrence. Natalie doesn’t hold it against me, though. No matter how often I cancel plans or forget to text back, Natalie remains unruffled, and I don’t even think it’s because I have ALS. I get the feeling she is just so complete that I don’t have the power to ruin anything. I’m not sure, though. I have never had a friendship quite like ours before.

We looked up at the sky, and my heart dropped to see a full blanket of lavender clouds. “Not a single star?” I asked.

That night, my city was attempting to bring attention to light pollution by encouraging citizens to use minimum lighting. The goal was to get us out into the streets looking up at the stars and marveling over what we are missing. My neighbors and I followed the rules. Even the cafe closed early, the only light inside the soft blue glow of the beverage cooler. Still, the stars remained hidden.

“Apparently, it takes months for the rays we send into the atmosphere to dissipate,” Natalie shrugged. She settled onto the top chair on the stack of outdoor cafe seating.

Another great thing about Natalie is that she handles disappointment with utter calm, whether she accepts it and lets it go or speaks up to rectify the situation. There was no one to complain to tonight, though. This show had no director to adjust the scene. However, good company can salvage even the darkest day or, in this case, the brightest night.

I settled into my wheelchair, reclining so my feet wouldn’t swell. I imagined that if I had my old strength, I would hop up to sit on the low cement wall of a nearby planter and swing my legs.

After a moment of quiet, she said, “I might move. I hope not, though. I like knowing you’re around.”

Although Natalie and I have only met in person about four times over the past year, there is a certain comfort knowing she lives a block away. I’d hate to lose that.

“We might move, too. Rent is high,” I replied. “Maybe we’ll move in the same direction.”

We looked back at the sky to see if anything had changed. Natalie pointed to a light in the distance. “Airplane.”

“Are you writing?” I asked, giving the clouds a break from my scrutiny.

“Short stories,” she answered. “One about a guy I met who studies UFOs.”

We were silent for a while I rolled ideas for stories around in my head and thought about how my words are too slurred and strained to read aloud in my writing group.

Suddenly self-conscious, I said, “I know it’s harder to understand me now, but I’m working on using my speech computer. That should help.”

“I understand enough,” Natalie assured me.

Plenty of people were out in the streets as promised, but we were the only ones still holding out for stars, still gazing up. In the quiet, my mind wandered. It landed in the section of my brain that catalogues books (as usual), and I remembered a quote from the novel The Probable Future by Alice Hoffman. It goes something like: “People think they have to look up to see the sky, not realizing we are standing in it. They don’t know that the sky begins where ground meets air.” I wanted to share this with Natalie, but my voice was fading.

We stayed staring at the clouds for a while longer before Evan showed up to take me home. He kissed me on the head, then hung back so I could have another moment with Natalie.

“It was good to see you,” Natalie said by way of goodbye. Another thing I like about her: our time together can be valuable even if we only exchange a few words. It’s a liberating dynamic.

“You, too,” I said, my voice muted and rough.

I took a last look at the sky before going into my building, wondering over how, beyond the clouds, there are millions of stars and galaxies that I will never see. Nevertheless, I still have absolute faith that they are there, perhaps closer than I think if I’m already in the atmosphere.

Maybe my cure is like that, I thought as Evan helped me out of my wheelchair and into bed. Tucked in beside my husband, it was easy to imagine the cure is merely just out of sight, waiting an inch beyond my fingertips. Evan makes even the grandest hope possible; his heart is that pure. I gave his hand a love squeeze and silently promised that until the cure comes, I’ll keep looking up.

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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 Day With ALS

I’m feeling inspired by writer and ALS advocate Sarah Coglianese’s response to the question, “What do you do all day?” The breakdown of her day made me realize that how I live now is incredibly foreign to the healthy people reading my blog. I have shared what Virginia Woolf called “moments of being”, micro-stories that I hope give you a sense of how it feels to walk in my shoes. However, I have yet to hand you the structure of my days . Here is a rough schedule for my average, exhausting, rewarding day.

Morning:

  • Showering with the help of a professional bath aide
  • Getting dressed
  • Putting on foot braces to stem foot drop
  • Taking regular medicine and trial medication
  • Eating breakfast if I have an appetite

Afternoon:

  • Taking medicine
  • Eating lunch
  • Breath Stacking
  • Physical therapy (PT)
  • Appointments or correspondence regarding medication
  • Planning fundraising events

Evening:

  • Taking trial medication
  • Breath Stacking
  • Preparing dinner
  • Eating dinner with my husband and sister, in-laws, and friends

Night:

  • Taking medicine
  • Hygiene tasks
  • Changing into pajamas
  • Writing in bed while not a creature is stirring, not even a dachshund.

Every day is a roller coaster at a shoddy carnival. Every day I have to choose again and again to feel the joy of the summits rather than the stomach-clenching pain of the drops. I feel a sense of accomplishment on many fronts, so I push myself to bask in that satisfaction. I have maintained fewer old friendships than I had hoped, but I am glad to spend time with new friends. I’m fighting isolation, and I am proud.

Sometimes, though, the valleys of this poorly maintained ride are dark and lonely. The rails rattle in a disturbing way, but I am helpless to do anything about it. I may vomit trying to eat because my appetite is so poor. Depending how stiff I am, PT can be frustrating. I often get worn out well before dinner time, which causes the quality of my speech to degrade. I also need help with almost every single task, so I am never, ever alone. This lack of privacy is emotionally exhausting beyond what I, a true extrovert, thought possible.

Yet I am starting to learn how to manage the roller coaster, figuring out when to grasp the shoulder harness until my nails crack and when to let go, throw my hands in the air, and shout in joy. ALS is a wild, deadly ride, but not one that will break me – whether or not l survive – because I know to reach for the sun whenever I’m hurtled towards it.

The Waves

Leaves in My River, Stars in My Sky

I hate crying – it’s an uncontrollable language of pain, and I lack enough control as it is – but I was crying tonight. I’ve heard that no single emotion is inherently good or bad. We should acknowledge them all, pick each up like a leaf from a stream, think, “It’s just sadness,” then put it back down and let the water take it away. However, I like to pick up the Sadness Leaf, crush it, and bury it in the dirt. Out of sight, out of mind.

Scrolling through my Facebook feed after dinner, I found myself thinking about all the people who stopped speaking to me after my diagnosis, and tears, undeniable evidence of sadness, came. Mostly I stay positive. My doctor and I believe I will survive long enough for a treatment or cure to be developed. That possibility and the love of my friends and family keep me fighting. Still, the deafening silence from people I grew up with, celebrated holidays and birthdays with, listened to when they were troubled… it hurts enough to make my throat clench and my eyes sting. It starts a rush of unwelcome memories of staying up late on the phone, talking a friend through a divorce. Then I recall walking down the aisle preceded by bridesmaids who have faded like ghosts from my life, existing for me now only in photographs. Friends I traveled the world with might as well have stayed on the other side of the ocean; they are that distant from me. These people I loved drifted away like debris on a beach in the first high tide after a tempest.

In the quiet after the storm of my diagnosis, my old life washed away, and I learned the truth about those I love. People who are far away or have been out of touch resurface, and I realized that for all the people nearby who are too weak to support me, there are others, scattered like stars on a winter night, who have been glowing for me this whole time.

There is the college friend I met so many years ago and now only speak with occasionally, though we once talked every day. He was the one to hear the news and call, crying. No words, just sobbing because that said it all. I cried under cover of his tears, safe because I couldn’t hear my own.

Then there is the woman I knew only for one summer back in California when together we learned to cook like adults, follow a recipe, peel a mango. She flew to me in Oregon, made her super secret special cake, and promised to stay with me until the end and hold my husband’s hand at the funeral, whenever it may come.

Seven years ago, I met a girl in a karaoke lounge in DC, and we sang Britney Spears (ironically, if that’s what you need to believe to keep reading this post). We both moved, sometimes to the same cities. We campaigned together, hit all the vegan restaurants we could find, and lounged in parks with a pile of books. She stayed up late for a month after my diagnosis to answer my desperate 2 AM phone calls. She’s coming to visit this weekend.

Last month, my in-laws moved across the country to live five minutes away. My mother-in-law feeds me pills in yogurt so I don’t choke on water and helps me clean my teeth. Then there’s my father-in-law, who brings me desserts several times a week to keep my weight up and once spent a whole day assembling my hospital bed.

And last in this post but not in my life, the aunt and uncle who surprised me by sending a box full of starfish. They live at the beach where my family went on vacations. They must remember how I couldn’t end a week at the beach without bringing a starfish home. I brought a starfish with me when my husband and I moved 3,000 miles away to remind me of my childhood, but one night Malka ate it for reasons we cannot fathom. Receiving these new starfish reminded me that I and my precious past are not forgotten.

Allowing my mind to linger on these winter stars introduces some happiness and gratitude to my swirling thoughts. They are more leaves in my river, floating alongside and softly nudging the painful ones. They make it easier to unclench the fist I made around that first sour leaf, to let it go and trail my fingers in the water to feel whatever the current holds. It drifts on, benign and unremarkable.

After all, it’s just sadness.

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.

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.

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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.

 

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