Planning for death at 52 helped me learn how to live

Every year, those resolutions fell to the bottom of my list before I could even hum “Auld Lang Syne.”.“Things like, Be more disciplined/stop procrastinating, tackle your TBR stack/try a digital sabbatical, and Quit sugar / Lose 10 pounds / Eat no more than one dessert a day It tops the list year after year.

This year I’ve been searching phrases like “Is an advance directive the same as a living will?” “Where is assisted suicide legal?” “What drugs are used for assisted suicide?” If you type your last question into Google GOOGL, you will get
+2.12%,
The first thing that comes to mind is the number “988” and the encouragement for me to reach out for support.

There is no definite diagnosis yet. Instead, I developed a host of miscellaneous symptoms, disabilities, dysregulation, immune deficiencies, and viruses after contracting a nasty respiratory illness that lasted seven weeks in late 2019 after returning to the Midwest to visit family for the holidays.

downward spiral

The downward spiral began with an episode of hyperventricular tachycardia about a week after I became “on treatment.” My resting heart rate reached over 150 beats per minute, and what followed was a series of trips to the local emergency room, tests and procedures. The illness caused a significant decline in my health and was probably the beginning of this chosen end that I now face.

But last March, three years after my first visit to the emergency room, I was working from home one afternoon when I noticed weakness in my right forearm. His arms felt heavy, the muscles quivered beneath his skin, and the strokes of his fingers on the keyboard weren’t landed as efficiently as they used to. Words are missing letters…knowledge. language. marriage. My muscles cramped.

Over the next few months, I suffered from resting tremors and difficulty swallowing. In the evenings, when I was most tired, my speech slowed down. I started having trouble with my short-term memory, words started getting mixed up in conversations, and it felt like words I used frequently were piled up on a shelf in my head and no longer within my reach.

I leave the kitchen running with the faucet on and the burner on, etc., and I recently put a yogurt container in a dresser with a Pyrex lid.

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‘Maybe ALS’

In August, my rheumatologist referred me to a neurologist. My life has been full of specialists. Immunologist. Gastroenterologist. Rheumatologist. Neurologist. He suspected that neuromuscular disease, rather than autoimmune disease, was the root cause of many of the symptoms, including weakness, tremors, and autonomic dysregulation. This makes functions such as heart rate, blood pressure, and body temperature unpredictable and sometimes dangerous.

Now, after most physical activity, such as taking a slightly warm shower, your body temperature will rise to 102 to 104 degrees and your heart will beat more than 130 to 150 times per minute.

“It’s probably ALS,” the rheumatologist said. Amyotrophic lateral sclerosis. Terminal diagnosis.

To date, ALS cannot be definitively ruled out as a diagnosis, although MRI, EMG, and blood draws have not been confidently diagnosed at this time. I am being referred to another neurologist for further evaluation. According to the ALS Therapy Development Institute, some patients initially receive a “suspected, possible, probable, or definite” ALS diagnosis after other disorders and diseases have been ruled out.

On paper, ALS is a worst-case scenario in terms of outcomes, with a life expectancy of 2 to 5 years, depending on each patient’s progression. Best case scenario, these myriad symptoms, my 52-year-old body’s failure is that my defective, poor immune system has already launched an attack on other organs, including my lungs, liver, and spleen. My brain becomes inflamed and/or worse.

decision has been made

This brain, which I had filled with ten years of higher education studies, ideas for essays, books yet to be written, languages, memories of my children, their children, and my parents when we were all much younger, was damaged. There is no way to know if there is any hope of recovering what has been lost. But now, in terms of quality of life, I believe that my decision to end my physical, cognitive, and emotional pain is the same no matter what diagnosis my doctor gives me.

I never spoke formally to my family, many of those relationships were estranged or strained, and even as a child we often communicated in writing. As a child, I asked my mother if she was mad at me on the lined stenopage she kept on her kitchen table, asking her to confirm yes or no.

I continued to write letters to my husband during our nearly 20 years of marriage. First I wrote letters of love and hope, and more recently I wrote letters of requests and reflection. I’m sorry you have to be with your sick wife..

I expressed my frustration and fatigue about being sick for so long to some of my family members, saying, “This is not sustainable,” and “I don’t know how long I can do this.” But they have this mentality that I need to get out there more and that somehow I can positively right the belly of my sick, young body. Even my husband has told me about the power of “mind over matter.” That’s a different conversation altogether.

Now, to prevent gastroparesis from causing food to stagnate and form lumps in your intestines, you should try to encourage your stomach to empty its contents by taking a short walk or doing some kind of activity after each meal. On my worst days, after being humbled by a few trips and a few falls, I often find myself utilizing my newly purchased walker. Some days I have trouble feeding myself and swallowing food and drinks, regardless of their consistency.

As my brain and body continue to weaken, I think about small, everyday things, like not being able to make and pour my own coffee, and how my hands are no longer strong enough to hold my beloved coffee cup. I have collected them over the years from my children and friends who make pottery.

I can no longer stand in the kitchen for long periods of time making dough and rolling it into glazes and streusel pastries or stirring pans of homemade hot fudge that I gift to friends and neighbors. I’m worried my arms won’t be able to hold my new granddaughter in the spring.

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Leaning on an end-of-life plan

On a grander and more humiliating scale, I peed myself more than once in the morning trying to get my writhing, shaking body out of bed. As fatigue causes me to stutter and lose my ability to remember words, I always think about the joy I find in oral communication. This is how I connect with the world around me. I am a storyteller, a teacher, and a talker. The thought of losing these things makes me me This is unbearable for anyone diagnosed with a debilitating and potentially incurable disease.

I rely on these end-of-life plans to tap into both my creative and Type A sides. I’m taking online art classes, learning to sketch, draw, and knitting while simultaneously writing a care plan and writing down my “last wishes” on paper. “Final Wishes” is a really strange phrase. I imagine the genie being tempted out of the bottle, and once it is released, there is no getting it back, and I am reminded of the permanence of my decision.

Create a list

I don’t like the term “bucket list,” but I’ve been making it part bucket list, part to-do list. I looked at it and divided it into three parts: places to go, things to do, and things to not do anymore. The list includes:

Things to see/do:

1. See the Northern Lights in Maine and go hiking while you’re there.

2. You can see autumn leaves somewhere in the northeast. Once more.

3. Visit another country. I settled in Algonquin Park, Ontario, Canada. You can stargaze and see the Northern Lights from there too.

A thing to do:

1. Go camping. Water connected to the Earth.

2. Watch the meteor shower. Checked this off the list.

3. Plant a garden.

4. Collect and organize recipes for your children, and create a care package for each child with sentimental items.

5. Finish/sell my book.

6. Write a letter to your loved one. Meet your loved one.

What you should no longer do:

1. Stop offering myself to people who are not interested in true love/thoughtful relationships.

2. Stop hating your past self. I want to love the life I lived, which was flawed in many ways.

3. No more finishing books I don’t like.

Including that long viral disease, four years have now passed. I’m tired. After much thought and deliberation, I decided to end this suffering. I’m not sure exactly when, but I’m getting closer to creating an end-of-life plan.

See also: How to give your heirs quick access to your bank accounts when you die

But now, for the first time, instead of wondering how my illness and decompensation will progress, and worrying about the logistics of needing a higher level of care… Well, I’m thinking more about living at least four years, maybe more. . I seek joy, love, and kindness, and I look for daily opportunities to pour those things back into the world around me.

Some days you succeed, some days you don’t. I am not a gracious sick person. But through it all, I’m grateful that planning for death has finally helped me figure out what’s important to me, and that I’ve finally figured out how to live.

SC Beckner is a freelance writer and essayist. She earned her MFA from the University of North Carolina at Wilmington. Her work can be found in Insider, NBC THINK, and various literary magazines. She lives in Wilmington, NC, where she writes, hikes, and has even walked the beach with her two dogs.

This article is reprinted with permission from: NextAvenue.org©2024 Twin Cities Public Television, Inc. All rights reserved.

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