At the end of every year in the past, I have been anxiously waiting to open my new daily planner for the coming new year so I can write down resolutions. I like a clean slate.
Every year, these resolutions moved to the bottom of my list before I even finished the “Auld Lang Syne” hymn..“Things like, Be more disciplined/stop procrastinating, tackle my TBR collection/try a digital vacation, And Stop eating sugar/lose 10 lbs/no more than 1 candy a day, It topped the list year after year.
This year, I'm googling phrases like “Is an advance directive the same as a living will?” “Where is assisted suicide considered legal?” “What medications are used in medically assisted suicide?” When I type the last question into Google GOOGL,
The first thing that comes up is the number “988” and the encouragement for me to reach out for support.
I don't have a confirmed diagnosis yet. Instead, I'm experiencing a plethora of symptoms, disorders, dysregulation, immunodeficiencies, and viruses after falling ill with a bad respiratory illness that lasted for seven weeks at the end of 2019 after a trip back to the Midwest to visit family for the holidays.
Downward spiral
The downward spiral began with an episode of superior ventricular tachycardia a week or so after I “got better.” His resting heart rate reached 150 beats per minute which initiated a series of trips to the local emergency room, tests and procedures. This illness led to a significant decline in my health and was most likely the beginning of this chosen end that I now face.
But then, last March, three years after my first trip to the emergency room, I noticed weakness in my right forearm while working from home one afternoon. My arms felt heavy, the muscles rippled under the skin, and my finger strokes on the keyboard no longer landed as efficiently as they had before. The words were missing letters…Knowledge. language. Mariage. Muscle spasm.
The next few months brought comfortable tremors and difficulty swallowing. My speech became sluggish in the evenings when I felt extremely tired. I started having short-term memory problems, I confused words in conversation, and I felt like the words I used frequently were shelved in my mind and I could no longer access them.
I do things like leave the kitchen with the faucet and stove running, and recently, I put a pot of yogurt in the drawer with a Pyrex lid.
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“Maybe amyotrophic lateral sclerosis.”
In August, my rheumatologist referred me to a neurologist, and my life has been full of doctors. Immunologist. Gastroenterologist. Rheumatologist. neurologist. He suspected that rather than an autoimmune disease, a neuromuscular disorder was the root cause of many of my symptoms, including weakness, tremors, and autonomic dysregulation that caused functions like heart rate, blood pressure, and temperature to become unpredictable. And even dangerous sometimes.
Now, after most physical exertions, such as taking a moderately warm bath, my body temperature rises to 102-104 degrees, and my heart races to 130-150 beats per minute.
“Maybe amyotrophic lateral sclerosis,” the rheumatologist said. Amyotrophic lateral sclerosis. Final diagnosis.
To date, ALS cannot be definitely ruled out as a diagnosis, but it is also not reliably diagnosed at this point on MRI, EMG, and blood draws. I will be referred to another neurologist for further evaluation. According to the ALS Treatment Development Institute, some patients initially receive a “suspected, probable, probable, or definite” diagnosis of ALS, where other disorders and diseases are ruled out.
On paper, ALS is the worst-case scenario in terms of outcome with life expectancy ranging from two to five years depending on the progression of each individual patient. Best case scenario, this plethora of symptoms, this failure in my 52-year-old body, is that the faulty, rebellious immune system that has already attacked my other organs—lungs, liver, spleen—has begun its assault on my brain, causing inflammation and/or deterioration.
The decision has been made
This mind that I had filled with ten years of higher education, ideas for articles, books yet to be written, language, and memories of my children, their children, and my parents when we were all younger – had been damaged. There is no way to know if there is any hope of regaining what was lost. But now, I think in terms of quality of life, and regardless of the diagnosis the doctors come up with, my decision to end my physical, cognitive, and emotional suffering remains the same.
I haven't formally told my family, many of those relationships are estranged/strained, and even as a child, I often communicated in writing. When I was a child, I asked my mother if she was angry with me over lined pages left on the kitchen table, and asked her to check for yes or no.
I have written letter after letter to my husband throughout our nearly 20 years of marriage—at first, letters of love and desire, and more recently, letters of request and reflection. I'm sorry you ended up with a sick wife.
I've expressed my frustration and fatigue about being sick for so long to some of my family members, saying things like “this isn't sustainable” or “I'm not sure how much longer I can do this.” But they believe I need to get out more, that I can somehow right the ship of my sick and developing body with positivity. Even my husband talked to me about the power of “mind over matter.” These are all different conversations.
Now, I have to try to take a short walk or do some sort of activity after every meal to help my stomach empty itself of its contents, lest gastroparesis cause the food to stagnate and form a hard mass in my intestines. On my worst days, I often use my newly purchased roller after being humbled by a few trips and a few falls. Some days, I have difficulty feeding myself and swallowing food and drink, regardless of the consistency.
As my mind and body continue to weaken, I think about trivial everyday things like not being able to make and pour my own coffee, I think about how my hand is no longer strong enough to hold one of my favorite coffee cups I've collected over the years from my children or from friends who make pottery.
I can no longer stand in the kitchen for long periods while I prepare dough, roll it into glazed pastries or pastries, or stir a bowl of homemade hot fudge that I gift to friends and neighbors. I'm worried my arms won't hold my new granddaughter expected in the spring.
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Tends to end-of-life plans
On an even greater and more humiliating scale, I have wet myself more than once while trying to maneuver my stumbling, shivering body out of bed in the morning. As my speech slurs due to fatigue and I fail to remember words, I think about the joy I always find in oral communication – it is the way I connect with the world around me. I am a storyteller, teacher, speaker. The thought of losing these things that makes me… I It is unbearable, as it is for anyone diagnosed with a debilitating and potentially incurable disease.
I lean into these end-of-life plans, engaging both the creative and Type A aspects of my identity. I'm taking art classes online, learning to draw and paint, and trying to teach myself to knit while simultaneously writing my care plan and putting my “final wishes” down on paper. “Final wishes” is a strange phrase. I imagine the genie being lured from the bottles and how you can't “return the genie” once you free him and I remember the permanence of my decision.
Prepare lists
I don't like the term “bucket list,” but I made one — well, part bucket list, part to-do list. In my mind, I've broken this down into three parts: places to see/go, things to do, and things to no longer do. The list contains things like:
Places to see/go:
1. See the northern lights in Maine, and hike while you're there.
2. Watch fall foliage somewhere in the northeast. once again.
3. Visit another country. I settled in Algonquin Park in the province of Ontario in Canada. Stargaze, see the northern lights from there too.
Things to do:
1. Go camping. Sleeping connected to the ground.
2. Watch meteor showers. I checked this off the list.
3. Plant a garden.
4. Collect and compile recipes for my children, and prepare care packages for each child with sentimental items.
5. Termination/sale of my book.
6. Write letters to your loved ones. Seeing loved ones.
Things you no longer do:
1. No more introducing myself to those who are not interested in true loving/caring relationships.
2. No more hating myself for the past. I want to love the life I lived, flawed as it was in so many ways.
3. No more finishing books I don't like.
It's been four years now, counting this long viral illness. I'm tired. I came to the decision to end my suffering after much thought and consideration. I don't know exactly when, but I'm about to settle on an end-of-life assistance plan.
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But now, instead of wondering how my illness(s) will progress and not compensate, and worrying about the logistics of needing a greater level of care, I'm thinking more about living for the first time in…well, at least four years, maybe more. I seek joy, love, and kindness and look for daily opportunities to bring those things back into the world around me.
Some days I'm successful and other days I'm not. I'm not a generous sick person. But in all of this, I'm grateful that while planning my death, I finally learned what was important to me… I finally learned how to live.
SC Beckner is a freelance writer and essayist. She received her Master of Fine Arts from the University of North Carolina Wilmington. Her work can be found in Insider, NBC THINK, and various literary magazines. SC resides in Wilmington, NC where she writes and hikes and walks the beaches with her two dogs.
This article is reprinted with permission from NextAvenue.org©2024 Twin Cities Public Television, Inc. all rights are save.
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