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.

Getting Back My Voice?

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

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

Gross True Love

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At my most recent clinic, the nurse pulled out my mic-key – the feeding tube that allows access to my stomach – so they could give me a fresh one, and all of my breakfast came out like a volcano. Before the nurses could even react, Evan dove in and covered the hole with his bare hands. Remember, my feeding tube version of vomit was pouring out. Nothing grosses him out when it comes to me. Nothing. And that is true love in all its gross glory.

Please enjoy the illustration below, and have a happy Valentine’s Day!

J/K about the illustration. I love you too much to do that to you. (insert adorable, mischievous grin)

Xoxo,

Rachel “The Volcano” Doboga

Save Medicaid from Being Slashed!

The health care bill draft currently being reviewed by the Senate slashes Medicaid to the bone. If the bill is passed, 14 million of the most expensive beneficiaries – particularly, the elderly and disabled, including those suffering from ALS – will be kicked off Medicaid! Use the following text to write to or call your representatives and let them know that you expect them to oppose this health care bill (contact information here138). We must act quickly since senator Mitch McConnell intends to have the Senate vote by JUNE 30th!

The Honorable [NAME]
United States House of Representatives (or: United States Senate)
United States Capitol
Washington, DC

Dear Representative (or: Senator) [NAME]:

I am writing to ask for your help to ensure that people with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease have the coverage and health care they need and deserve. If passed, the Better Care Reconciliation Act will seriously impact the lives of people suffering from ALS and their families. In fact, it may even be a death sentence since many will be kicked off Medicaid.

The cost of living with ALS is staggering. Depending on the level of care a person needs, expenses can reach $250,000 per year. If patients are left with the burden of paying all the costs that Medicaid currently covers, these people will go without the feeding tube surgery and supplies that prevent them from starving to death. They will lack the medicine that relieves their tremendous pain. They will not be able to afford the caregivers who help them with toileting, medication, tube feedings, bathing, and monitoring vital machines such as ventilators. Most cruel of all, thousands will face the decision to go on a ventilator, or forgo the life-saving procedure in order to avoid bankrupting their families. In short, thousands of Americans with ALS will lose their dignity and their lives an agonizing death if they are deprived of Medicaid. (Optional: insert personal story of the impact of ALS on your life).

This is a matter of life and death, not politics. This health care bill is inhumane. I know there are a number of initiatives and programs under review. However, I think, and I hope you do as well, that Medicaid, which saves the lives of countless citizens, must be preserved and well-funded.

As a resident of (STATE), I hope that I can count on your support and look forward to watching closely as the health care bill moves through the legislative process.

(Optional) If you need more information on the impact of ALS on the people in our state, please don’t hesitate to contact the ALS Association of (STATE ORGANIZATION) at: (insert chapter website).

Sincerely,

Your Name

A Wild and Lonely Belief

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9Dedicated to Dr. Goslin for giving me permission to believe, and my husband Evan, who shields me from the worst of the winter winds.


I am a voracious reader. I always have been, thanks to my parents and grandparents, who planted books around my house in places I could reach even when I was still crawling. They were treasures I was allowed to discover on my own, and as a result, they felt special and personal to me. The books I read in my childhood became a part of me in that they showed me how to dream, hope, and believe. Even now, those stories influence the way I understand the world and cope with the rocks and daggers it throws at me. When I spot trouble coming my way, I snatch up one of these books, opening it wide to use the front and back covers as a shield while I confer in hushed, hurried tones with the characters inside.

Lately the shield I crouch behind is the work of one J. M. Barrie, and Peter Pan is whispering in my ear: “Every time a child says, ‘I don’t believe in fairies,’ a fairy somewhere falls down dead… Do you believe in fairies? If you do, clap your hands! Don’t let Tinker Bell die!” I watch the children bring Tinker Bell back by clapping and shouting, “I believe!” But what good can Peter Pan’s words do me, a young woman dying of ALS? More than you might ever imagine.

You see, I have this conviction that I will not succumb to my disease. I believe I will survive this. I can count on one hand the people who share my belief. I often hear other pALS (people with ALS) talk about their sadness over the special moments they will miss after the monster we are all battling cuts their lives short. On the earth beneath which we have been laid to rest, our loved ones will blow out birthday candles, throw graduation caps into the air, walk down the aisle, paint nurseries, and build cribs. We can only hope they think of us now and then as the flowers of their lives continue to unfold long after our own blooms have wilted and shriveled.

That’s not my story, though. My blossom is wilting because winter has come, not because I am dying. Bitter winds may batter my petals, but my roots are safe and strong. They remember spring and are waiting for it to come again. I have been told not to get my hopes up, and my answer is always the same: “What harm can believing do? If I am wrong, I won’t be around to cry about it.” The fact of the matter – which I rarely endeavor to explain anymore – is that believing is a source of strength for me. After all, Peter Pan said belief can save a life. If you need to hear about the power of belief from someone with more authority, consult another prominent book from my childhood. Open the Bible to Matthew 17:20 where you will find the following words: “If you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”

To me, belief is so powerful because of what it inspires. The magic of belief lies in the way it empowers us to live, and when necessary, fight. I believe that I will be cured, but that doesn’t mean I expect an easy path. I know that only if I work hard and plan carefully, I will survive long enough to be cured. This conviction shapes how I live now. In order to last until the cure, I need to keep my lungs strong and clear with daily use of the cough assist and AVAPS machines. Each day, I also complete two dozen physical therapy exercises and follow my feeding tube meal program. I can bear all this and more – hours spent in the hospital for clinics and drug trials, daily vitamin injections, even a tracheotomy if my lungs fail – because I know that my story will have a happy ending.

This is my wild lonely belief: that I am not a withering rose, but a winter one, waiting with patient certainty for the sun.

Three Dreams and A Dragon

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

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

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

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

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

“Your students are bored.”

“Their parents lack confidence in you.”

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

“You lack presence in the classroom.”

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

“You’re too academic.”

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

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

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

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

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

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

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

Drug Trial FOMO

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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