In the past, at the end of each year, I looked forward to opening my new daily planner for the upcoming new year so I could write down my resolutions. I like a clean slate.
Every year those resolutions ended up at the bottom of my to-do list before I even finished humming “Auld Lang Syne.”.“Things like, be more disciplined/stop procrastinating, tackle my TBR stack/try a digital sabbatical, AND eliminate sugar/lose 10 kilos/no more than one dessert a day, tops the list year after year.
This year I’m Googling phrases like “Are advance directives the same thing as living wills?” “Where is assisted suicide legal?” “What drugs are used in assisted suicides?” When I type the last question into Google GOOGL,
the first thing that comes up is the number “988” and the encouragement to ask for support.
I don’t have a certain diagnosis yet. Instead, I have a myriad of symptoms, disorders, dysregulation, immunodeficiencies, and wacky viruses after contracting a nasty seven-week respiratory illness in late 2019 after a trip back to the Midwest to visit family for the holidays.
The downward spiral
The downward spiral began with an episode of superventricular tachycardia about a week after I was “on the mend.” My resting heart rate reached over 150 beats per minute, starting a series of trips to the local emergency room, tests and procedures. That illness triggered a sharp decline in my health and was probably the beginning of this chosen end that I am now facing.
But then, last March, three years after that first trip to the emergency room, I noticed weakness in my right forearm while working from home one afternoon. My arm felt heavy, my muscles rippled under my skin, and my finger strokes on the keyboard were no longer as efficient as they once were. The words were missing letters…Knowledge. Tongue. Mariage. The muscles contracted.
The following months brought resting tremors and difficulty swallowing. In the evening, when I was more tired, my speech became slow. I began to struggle with short-term memory, I would mix up words during conversations, and I felt like the words I used often had been stored in the shelves of my brain and I could no longer reach them.
I do things like leave the kitchen with the faucet running, the stove on, and recently, I put a container of yogurt in the drawer with the Pyrex lids.
Read also: 6 things I learned from my mother’s death that can save your heirs a lot of stress
“Maybe ALS”
In August, my rheumatologist referred me to a neurologist: my life has been inundated with specialists. 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 made functions such as heart rate, blood pressure, and temperature unpredictable and sometimes dangerous.
Now, after most physical exertions, such as taking a slightly warm shower, my body temperature rises to 102-104 degrees, my heart accelerates to 130-150+ beats per minute.
“Maybe ALS,” the rheumatologist said. Amyotrophic lateral sclerosis. A terminal diagnosis.
So far, the diagnosis of ALS cannot be ruled out with certainty, but at this point it has not been diagnosed with certainty even through MRI, EMG and blood draws. I will be referred to another neurologist for further evaluation. According to the ALS Therapy Development Institute, some patients initially receive a diagnosis of “suspected, possible, probable, or definite ALS” as other disorders and diseases are ruled out.
On paper, ALS represents a worst-case scenario in terms of outcome, with a life expectancy of between two and five years depending on each individual patient’s progression. At best, this myriad of symptoms, this failure of my 52-year-old body, is that my faulty and corrupt immune system, which has already attacked my other organs – lungs, liver and spleen – began its assault on my brain causing inflammation and/or deterioration.
A decision made
This brain that I filled with 10 years of studying in higher education, ideas for essays, books yet to be written, language, memories of my children, their children, my parents when we were all much younger – has been damaged. There is no way to know if there is any hope of recovering what has been lost. But now, I think in terms of quality of life, and regardless of what diagnosis the doctors arrive at, my decision to end my physical, cognitive and emotional suffering remains the same.
I haven’t officially told my family, many of these relationships are estranged/strained, and even as a child, I often communicated in writing. As a child, I would ask my mother if she was angry with me on the lined shorthand pages left on the kitchen table, I would ask her to check yes or no.
I have written letter after letter to my husband throughout our nearly 20-year marriage: initially letters of love and desire, more recently letters of inquiry and reflection. I’m sorry you had a sick wife.
I have expressed to some family members my frustration and fatigue at being sick for so long, saying things like, “This isn’t sustainable” or “I’m not sure how much longer I can do this.” But I’m of the mindset that I need to get out more, that I can somehow right the ship of my ailing, fledgling body with positivity. My husband also told 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 kind of activity after each meal to help my stomach empty its contents, to prevent the gastroparesis from causing the food to stagnate and form a solid mass in the intestine. On my worst days, I often use my newly purchased rollator after being humiliated by several trips and a few falls. Some days I struggle to feed myself and swallow food and drinks, regardless of consistency.
As my brain and body continue to weaken, I think about mundane, everyday things like not being able to make and pour myself coffee, I think about how my hands are no longer strong enough to hold one of my beloved coffee mugs that I have collected over the years from my children or from ceramist friends.
I can no longer stand in the kitchen for long periods while I prepare dough and roll them into frosted and frosted pastries or mix up a pan of homemade hot fudge that I give to friends and neighbors. I’m afraid my arms won’t be able to hold my new granddaughter due in the spring.
See: What estate planning documents do I need?
Lean on end-of-life plans
On a larger, more humiliating scale, I peed myself more than once trying to maneuver my reeling, shaking body out of bed in the morning. As my speech falters with fatigue and my memory of words fades, I think about the joy I’ve always found in oral communication: it’s how I connect with the world around me. I’m a storyteller, a teacher, a talker. The idea of losing these things that they do to me Myself it is unbearable, as it is for anyone with a debilitating and potentially terminal illness.
I’m leaning into these end-of-life plans, engaging both the creative and Type A aspects of who I am. I’m taking online art classes, learning to draw, to paint, trying to teach myself to knit while simultaneously writing my treatment plan, putting my “final wishes” on paper. “Final Wishes” is a really strange statement. I imagine the genies seduced by the bottles and how it is not possible to “put the genie back” once freed and I am reminded of the permanence of my decision.
Make lists
I don’t like the term “bucket list,” but I created one… well, part bucket list, part to-do list. In my mind I divided it into three parts: places to see/go, things to do, things not to do again. The list contains things like:
Places to see/go:
1. See the Northern Lights in Maine, go on a hike while they are there.
2. Look at the fall foliage somewhere in the Northeast. Another time.
3. Visit another country. I settled in Algonquin Park, in the Canadian province of Ontario. Stargaze, even see the Northern Lights from there.
Things to do:
1. Go camping. Sleep connected to the earth.
2. Watch a meteor shower. I checked this off the list.
3. Plant a garden.
4. Collect and compile recipes for my children, create packages for each with sentimental items.
5. Finish/sell my book.
6. Write letters to your loved ones. See loved ones.
Things not to do anymore:
1. No longer offer myself to those who are not interested in authentic, caring relationships.
2. I will no longer hate myself for the past. I want to love the life I lived, imperfect as it was in so many ways.
3. Enough with books I don’t like.
It’s been four years, counting that long viral illness. I am tired. I reached the decision to end my suffering after much thought and consideration. I don’t know exactly when, but I’m close to deciding on an assisted end-of-life plan.
See also: How to give your heirs quick access to your bank accounts when you die
But now, instead of wondering how my disease(s) and decompensation will progress, worrying about the logistics of needing a higher level of care, I’m thinking more about living for the first time in… well, at least four years, maybe moreover . I seek joy, love, and kindness, and I seek daily opportunities to pour these things into the world around me.
Some days I’m successful and some days I’m not. I’m not a nice sick person. But through it all, I’m grateful that by planning for my death, I finally learned what’s important to me… I finally learned how to live.
SC Beckner is a freelance writer and essayist. He has an MFA from the University of North Carolina Wilmington. His work can be found on Insider, NBC THINK, and various literary magazines. SC resides in Wilmington, NC, where she writes and once hiked and walked beaches with her two dogs.
This article is reprinted with permission from NextAvenue.org©2024 Twin Cities Public Television, Inc. All rights reserved.
More from Next Avenue: