Category: Hope

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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The Blue Room

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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.

Writing Through It

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Ever since Donald Trump won the election, I am a stranger in a strange land. For our next leader, my country chose a man who personifies rape culture. My PTSD from when I was sexually assaulted is already severe because of him. Listening to him for the next four years and knowing he has power over me will make it worse. Plus, Trump wants to slash the health care legislation that allows me to receive wonderful treatment. Without my current insurance, my medical expenses are $200,000 per year. Things could get really bad. My sister has already offered to sell a kidney and her eggs if I lose my coverage.

I hang onto my sanity by writing through the madness. I now have the privilege of writing regularly for The Huffington Post and am currently composing an essay on Portland’s post-election protests and riots. Working on this piece has been an emotional process. It forces me to sort through my heartbreak. It challenges me to experience the election and protests in a way that aligns with one of my core values: choose hope over fear.

Fear’s long, dark fingers are already trailing down my back, though. They tug at me persistently. Giving in would be so easy, it would almost be a relief. But then I think back to that stream, the one that carries my emotions like leaves. There are many leaves in the stream. I picked up fear, but I can put it back in the water and watch it drift away. Maybe this is how I’ll choose hope: by opening my fists and letting everything else go.

“All your darkest sorrows, did you ever just give them back?” – Stevie Nicks, “Has Anyone Ever Written Anything for You?”

 

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.”

Cloudgazing

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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

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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

The Luckiest (Wo)Man: Ales for ALS

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Check out this Father’s day brew kit. It’s part of the Ales for ALS program. A few months ago I was trying to decide what I wanted to brew and when I saw a kit with the Ales for ALS logo, I knew I had to do it. Cheers, this one is for you Rachel! – Cookie

The first thing I knew about Cookie was that he had a tattoo. At least, that was the rumor going around our study abroad group as we prepared to leave our college and head to Russia for the summer. At 19 years old, I thought a tattoo meant Cookie must be a pretty tough guy, so when we ended up on the same plane, I was a little nervous. I quickly found out, though, that he lives up to his nickname. One the first leg of our journey from NYC to St. Petersburg, we had not slept for at least a day, and he was still in a good mood, laughing and making friends under the brutal fluorescent lights of the Frankfurt airport. I don’t think I ever really let him know how much I liked him – I was pretty shy – but he always lightened the mood, and that was important when traveling with a small group in blistering heat.

I still remember everyone leaning against a giant statue in Novgorod, hoping for some shade and whining loudly. Cookie pointed out that all the shade was under the trees, but we ignored him and stayed on the path. He shrugged his shoulders, strolled across the lawn of the cathedral we had just toured, took off his shoes, and threw back his head, opening his arms to enjoy the cool shadows. I took a picture of him and remember thinking, “What is so scary about taking off my shoes, walking off the path?”

I’m on the far right, and Cookie is the guy in the blue shirt. Fun fact: I married the blonde man next to him a few years later. Peterhof, Russia – 2006
Overheating on a trek through Novgorod, Russia – 2006

That sums up who Cookie is. I have remained friends with him for ten years and although he lives far away, he has been unwavering in his support of me as I battle ALS, so although I was surprised to get the message about Ales for ALS from him today, I really shouldn’t have been. He is a true friend, and I am so grateful that despite time and distance, he is on my team.

Today, I learned though Cookie that Loftus Ranches and Hopunion created Ales for ALS to support ALS research:

“They have offered participating brewers access to a proprietary hop blend, free of charge, in exchange for participation in Ales for ALS™. Each brewer will brew special beers with these hops and will donate a portion of the sales to ALS Therapy Development Institute, the world’s leader in ALS research” (http://www.alesforals.com/).

Cookie had a great time brewing and listening to his favorite Russian brewing song. He has more than done his part. Now let’s do ours. Either brew some Luckiest Man Pale Ale for yourself, or find a participating brewer near you, gather some friends, and beat the heat with Ales for ALS!

A Wind in the Door

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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

A Seat at the Table

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Seeing my mom reminds me I am changing, though slowly relative to most other people with ALS. When she visits, there is always a lot for her to learn: the new way to help me dress, which silverware I can handle, what medicine I take at night. The list goes on. My sister and husband swoop in, explaining so much I didn’t even realize they thought about:

“When she says she’s thirsty, you have to grab the pillow under her feet so she can sit straight up. That way she won’t choke,” Laura says, pulling the pillow away and handing me my water.

“Hold the glass for her between sips so her wrists don’t get tired,” Evan says, taking the water from my hands while I swallow.

They must be thinking constantly about my needs. I can look at either of them and when our eyes meet, they burst into action, knowing automatically what I am silently asking. It is amazing, but it can’t be easy, and watching them train my mom, I keep wishing I didn’t need so much, didn’t change so much.

I need to be here in Portland. The care I am getting here is perfect for me, and I am so lucky I made it into the clinic. It is still hard to be away from my parents, though. It’s easier when I think of this time apart as an investment: I will live longer and ultimately have more years with them because of the care I receive here. Watching my mom learn to take care of me as though I am a very strange kind of infant will never feel OK. Neither will seeing my sister and husband throw their time and energy down the drain of my healthcare. I have to believe, though, as the three of them work together, the distance and effort will be repaid one day by my presence at their dinner table, when we all have gray hair and have grown old, just like we hoped and planned long before we ever heard of ALS.