Category: Symptoms

Three Dreams and A Dragon

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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.

Rag Doll

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At the recommendation of ALS Worldwide 129147 and with the approval of my beloved neurologist, I have begun an unconventional course of medications. I use the word “unconventional” because some of the medicine is either not typically used in cases of ALS or is being used outside of the FDA approved dosing. Additionally, none of this is covered by insurance. Our hope is that the new protocol will better manage my symptoms and even gain back some of the strength and mobility I have lost.

I began taking quinine sulfate to manage my excruciating muscle cramps. Even though my mouth now constantly tastes of bitter tonic water, it’s worth it because I am getting near total relief.

I am taking Nuedexta three times a day rather than the standard two in order to better control my PseudoBulbar Affect, which causes involuntary fits of laughing and crying. We are seeing good results so far.

Next week, I begin daily injections of B12 into my arms and legs. I am not absorbing the B12 I ingest orally thanks to ALS messing with my blood-brain barrier, so we will be delivering it directly to my muscles. This should restore some of my strength and mobility.

And so it goes. We experiment to manage the untreatable, to keep me going by patching up the tears until I am more rag doll than woman. Still, as long as I am, I will be grateful.

Learning Helplessness

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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

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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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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

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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.

 

Drug Trial FOMO

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I have a serious case of drug trial FOMO (fear of missing out). I just completed my year-long Tirasemtiv drug trial. I don’t know whether I was on the placebo or active drug. However, I have been invited to join the open-label extension of the clinical trial. That would mean I definitely would have an active dose. Meanwhile, the company that created Tirasemtiv is applying for FDA approval at this very moment. I take all of this information to mean that the medication worked: it preserved strength in the diaphragm, preventing a decline in lung function. In that case, being in the open-label trial is a great opportunity because I will have the drug immediately and keep my lungs from deteriorating.

There is a complication, though. If I join the open-label extension, I will take Tirasemtiv for the rest of my life as a way to research long-term safety of the medication. The open-label extension also requires that I not participate in any other trials. There is a trial coming up in April that I have been excited about, but is it promising enough to give up Tirasemtiv? It would help if I knew how well Tirasemtiv works, but I don’t think that is clear yet, even to the research team. I do know that throughout the study, my lung function did not decline at all. So is Tirasemtiv the safe bet?

Reading the news, it seems that possible cures are being found more and more quickly. Tirasemtiv is a treatment, not a cure. Let’s hop back to the experiment I mentioned that will take place in April. That one might be a cure. How can I turn my back on that? It seems like if I play it safe, I could be excluding myself from something miraculous. On the other hand, if the drug trial in April fails, I will have given up lung protection for nothing.

The original plan was to protect my lungs at all costs no matter the collateral damage, and that way, when the cure comes, my vital functions will be strong enough for me to properly heal. And what is this collateral damage? It is pain. For the past year, I have chosen pain in order to be in this trial. Being on Tirasemtiv means I cannot safely take Zanaflex, the medication that completely erases my spasms and muscle cramps. Instead, I am on a cocktail of a narcotic (Vicodin), a controlled substance anxiety medication called Clonazepam, and the muscle relaxer Baclofen. Evan also massages Bengay all over my limbs when my cramps get bad. Plus, I have a sizeable stash of medical marijuana (60% CBD) that is also working to loosen my joints and muscles. That is the price of my involvement in the study, and I will continue to pay it if I join open-label.

Just like the structure of this narrative has spiraled into dizzying circles, my thoughts are a tornado. It hops throughout my imagination, stirring up awful and wonderful scenarios. It rips through my sleep, and there is no seller with Aunty Em waiting to make it all better. I’m Dorothy out in the storm dreaming of Oz with no idea how to get there.

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How To Pee From A Sling With Dignity

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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.

Hands: Part 2

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As long as I’m listing what I miss using my hands for, I might as well ramble on a bit more. I miss the responsibility my hands gave me. I miss choosing fruit at the farmer’s market: laying a smooth, firm tomato in my hand, rubbing my thumb over the amber fuzz of a peach, picking up produce to examine the color. Raising greens and herbs to my nose is a sweet little luxury I never knew to cherish. Sometimes at the farmer’s market, Evan would buy me flowers. One time, he bought me a three-foot tall sunflower. I held it over my shoulder like a parasol. Usually, though, he would buy me white hydrangeas – the flowers I carried on our wedding day. I long to wrap my hands around them again and hold them in front of my heart.

Then, of course, the cooking was such a joy. I carefully made a menu and gathered ingredients at the market. Next, I used ceramic knives to slice through the fruits and vegetables, tomato pulp leaking onto my cutting board, strawberry juice staining my butcher block. I miss the rough wooden spoons I use to mix beans, lentils, and spices in with my market finds.

I even loved cleaning up after cooking. My mother-in-law, Brenda, bought me an amazing book for my birthday. Basically, it gave formulas for how to make household cleaners, disinfectants, scrubs, and detergents using natural ingredients like lemon, white vinegar, and castile soap. I used to slice and squeeze lemons, collecting the juice in empty jars I saved throughout the week. I would add in the right amounts of soap or water, vinegar or salt, and make pretty labels for them. I loved how my hands smelled clean and a bit like sunshine after I spent a few hours scrubbing the bathtub, all the sinks, countertops, and table. At the end of all that cooking and cleaning, my hands were dry and tired, and I felt at peace, like I had captured the present and lived in my senses with my human needs. I still find serenity in the sound of a rough sponge scrubbing.

I also miss scratching and massaging my dogs, but I cannot talk about that too much without getting sad. I pet them with my knuckles now that my fingers curl in. I hope they can feel that I love them. Honestly, though, I am afraid they won’t feel my affection and will grow away from me. My hands were our only common language.

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Hands: Part 1

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If I had full use of my hands again, the first thing I would do is hold Evan’s hand. It is impossible to interlace our fingers when mine are so weak and wobbly. I also miss my hands as instruments of creativity. I used to sketch, paint, and even sculpt. I wanted to pursue my pottery, especially raku technique, but I did not make time for that endeavor while I was healthy. Teaching took up most of my time, not that I regret the hours I spent grading papers and planning lessons. I am lucky to have had a career I loved so dearly.

If I had strong fingers, I would sew. I loved sewing aprons for my mom and gifts for family and friends. Of course, the major advantage of strong fingers (in my opinion as a writer) is being able to type. I am grateful for the eye gaze technology that allows me to write without relying on my hands, but I miss the speed of typing, particularly when my ideas are flowing like rapids over jagged rocks, desperate to get out.

I would also learn new skills. Mainly, I would want to learn to play an instrument. I love watching Evan play the guitar, and I think it would be wonderful to accompany him somehow, probably on the piano. The piano was special to my Grandma Rosemary, and I still remember her teaching me a few basic melodies.

I might miss my hands more than my legs. Hands are so quintessentially human. I am isolated from displaying affection when my fingers curl in on themselves like claws. I scramble to find new creative outlets and accept that some art forms are simply lost to me.

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White-Knuckle Miracle

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I had to work for my miracle, sweat for it, white-knuckle it, but I didn’t mind; I never expected a miracle to be easy. No one promised me a rose garden.

I woke up from a nap today needing to use the bathroom, so I hit the button that pages my sister and planned how we would transfer me to the wheelchair. As she helped me get to the edge of my bed, I felt a rush of strength. Synapses sparked, lighting up my mind with the memory of walking. The path down the hallway ahead of me was clear and bright, and I saw what I could do.

“I want to walk to the bathroom,” I announced. I’ve had ALS two and a half years. At this point, abandoning my wheelchair to go for a stroll is almost as ludicrous as trying to fly.

“OK,” my sister replied without hesitation, pulling my walker in front of me. She got behind me on the bed, pushed me until I was standing, and placed her hands on my hips to steady me. “Whenever you’re ready.”

There will never be a better way to explain my sister than describing her actions in this moment.

I shuffled forward. My stiff ankles and knees, slowly remembering their job, loosened. In my mind’s eye, stringy, dry muscles were being marinated in blood pumped from my eager heart. With each step, the muscle tissue grew more swollen with life.

Over the course of ten minutes, I walked twenty feet. That’s ten minutes of a deathgrip on my walker, of clammy hands and a trembling jaw. Ten minutes of wonder and joy. I landed safely, marveling at what I accomplished.

“I’m not even out of breath,”I said, looking up at my sister. “It’s incredible.”

“I was worried about that,” she confessed, though she seemed so calm, I hadn’t even guessed. ALS affects everyone differently, but it always mounts a vicious assault on the lungs. That’s what kills us all in the end.

“I forgot to be scared,” I replied, enchanted by the sound of my own steady breathing. For those ten minutes, even my thoughts were freed from my disease. This was my very own little miracle, a butterfly dancing briefly on my open palm before fluttering away.

I once heard luck defined as the place where hard work meets an opportunity. After today, I would define a miracle as the place where hard work meets an extraordinary opportunity.  This opportunity comes through a tear in reality to bear you forward on a  divine wind. There are conditions, though. You must be ready and willing to see the tear in the fabric; that’s called hope. Understand that the wind has the strength of a hurricane (how else could it carry you?) and may batter you even as it saves you. Miracles thrive on perseverance and strong hearts.

I accept this. I am undaunted by exhaustion, bone-grinding effort, or crippling pain. I am not afraid because I have survived it all over the course of my disease and during the drug trial which, most likely, enabled me to walk today. From now on, if you come searching for me, check the crow’s nest. I’ll be perched there, on the lookout for miracles with my father’s binoculars and my mother’s optimism. I’ll be whispering, “Come. Fly over the horizon. Take your time if you must. I still believe in you.”