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At the end of every year in the past, I anxiously waited to crack open my new daily planner for the coming new year so I could jot down resolutions. I like a clean slate.<\/p>\n
Every year those resolutions tumbled to the bottom of my to-list before I\u2019d finished humming \u201cAuld Lang Syne.<\/em>\u201d Things like,\u00a0be more disciplined\/stop procrastinating, tackle my TBR stack\/try a digital sabbatical,\u00a0<\/em>and\u00a0cut out sugar\/lose 10 pounds\/no more than one dessert a day,\u00a0<\/em>topped the list year after year.<\/p>\n This year, I\u2019m googling phrases like \u201cIs an advance directive the same as a living will?\u201d \u201cWhere is assisted suicide legal?\u201d \u201cWhat drugs are used in assisted suicides?\u201d When I type the last question into Google I don\u2019t have a solid diagnosis yet. Instead, I have a plethora of odds and ends symptoms, disorders, dysregulation, immunodeficiencies and viruses after I contracted a nasty respiratory illness that lasted for seven weeks at the end of 2019 after a return trip to the Midwest to visit family for the holidays.\u00a0<\/p>\n The downward spiral started with an episode of super ventricular tachycardia a week or so after I was \u201con the mend.\u201d My resting heart rate hit 150 plus beats per minute which began a series of trips to the local emergency room, tests and procedures. That illness triggered a marked decline of my health and was likely the beginning of this chosen end that I\u2019m facing now.\u00a0<\/p>\n But then, last March, three years after that first trip to the ER, I noticed weakness in my right forearm while I was working from home one afternoon. My arm felt heavy, the muscles rippled beneath the skin and my finger strokes on the keyboard weren\u2019t landing as efficiently as they once had. Words were missing letters\u2026Knoledge. Languge. Mariage.\u00a0<\/em>Muscles spasmed.\u00a0<\/p>\n The next few months brought resting tremors, and trouble swallowing. My speech became sluggish in the evenings when I was most fatigued. I started to struggle with short-term memory, mixed up words in conversation, and it felt like words I used frequently had been stowed on shelves in my brain and I could no longer reach them.<\/p>\n I\u2019m doing things like leaving the kitchen with the faucet running, burners on, and recently, I put a container of yogurt in the drawer with my Pyrex lids. \u00a0<\/p>\n Also read: <\/strong>6 things I learned from my mother\u2019s death that can save your heirs a lot of stress<\/a><\/p>\n In August, my rheumatologist referred me to a neurologist \u2014 my life inundated with ologists.\u00a0Immunologist. Gastroenterologist. Rheumatologist. Neurologist.\u00a0<\/em>He suspected that rather than an autoimmune disease, a neuromuscular disorder was the root cause of many of my symptoms including the weakness, tremors and autonomic dysregulation which caused functions like heart rate, blood pressure and temperature to become unpredictable, and sometimes dangerous.<\/p>\n Now, after most physical exertions, like taking a mildly warm shower, my body temperature spikes to 102-104 degrees, my heart races to 130-150 plus beats per minute. \u00a0<\/p>\n \u201cMaybe ALS,\u201d the rheumatologist said. Amyotrophic Lateral Sclerosis. A terminal diagnosis.\u00a0<\/p>\n Thus far, ALS can\u2019t be ruled out with certainty as a diagnosis, but it also hasn\u2019t been confidently diagnosed at this point in the MRIs, EMGs and blood draws. I\u2019m being referred to another neurologist for further evaluation. According to the ALS Therapy Development Institute, some patients initially receive a \u201csuspected, possible, probable, or definite ALS\u201d diagnosis as other disorders and diseases are ruled out.\u00a0<\/p>\n On paper, ALS is the worst-case scenario in terms of outcome with a life expectancy of two to five years depending on the progression of each individual patient. Best-case scenario, this myriad of symptoms, this failure of my 52-year-old body, is that my faulty, gone-rogue immune system that has already attacked my other organs \u2014 lungs, liver and spleen \u2014 has started its assault on my brain causing inflammation and\/or deterioration.\u00a0<\/p>\n This brain that I\u2019ve filled with 10 years of study 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 \u2014 has been damaged. There is no way to know if there\u2019s any hope of recovering what\u2019s been lost. But now, I think in terms of quality of life, and regardless of which of those diagnoses the doctors land on, my decision to end my physical, cognitive and emotional suffering remains the same.<\/p>\n I haven\u2019t officially told my family, many of those relationships are\u00a0estranged\/strained, and, even as a child, I oft communicated in writing. As a child, I asked my mother if she was mad at me on lined steno pages left on the kitchen table, asked her to check yes or no.\u00a0<\/p>\n I\u2019ve written letter after letter to my husband throughout our nearly-20-year marriage \u2014 in the beginning, letters of love and wanting, more recently, letters of request and reflection.\u00a0I\u2019m sorry you ended up with a sick wife<\/em>.<\/p>\n I have expressed my frustration and fatigue with being sick for so long to some members of my family, said things like \u201cThis isn\u2019t sustainable,\u201d or \u201cI\u2019m not sure how much longer I can do this.\u201d But they are of the mindset that I need to get out more, that I can somehow right the ship of my sick and fledgling body with positivity. Even my husband has talked to me about the power of \u201cmind over matter.\u201d Those are all different conversations.\u00a0<\/p>\n 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 the gastroparesis cause the food to stagnate and form a solid mass in my gut. On my worst days, I\u2019m frequently utilizing my newly-purchased rollator after being humbled by several trips and a few falls. Some days, I struggle to feed myself and swallow food and drink, regardless of consistency.\u00a0<\/p>\n While my brain and my body continue to weaken, I think about the trivial, everyday things like not being able to make and pour my own coffee, think about how my hands are no longer strong enough to hold one of my beloved coffee mugs that I\u2019ve collected over the years from my children or from pottery-making friends.<\/p>\n I can no longer stand in the kitchen for extended periods while I make doughs and roll them into glazed and streusel-ed pastries or stir a pan of homemade hot fudge that I gift to friends and neighbors. I worry that my arms won\u2019t hold my new granddaughter expected in the spring.\u00a0<\/p>\n See: <\/strong>What estate-planning documents do I need?<\/a><\/p>\n On a grander, more humiliating scale, I\u2019ve wet myself more than once trying to maneuver my faltering, quivering body out of bed in the morning. As my speech slurs with fatigue and my word recall is failing, I think about the joy I\u2019ve always found in oral communication \u2014 it\u2019s how I connect with the world around me. I\u2019m a storyteller, a teacher, a talker. The idea of losing these things that make me\u00a0me\u00a0<\/em>is unbearable, as it is for anyone diagnosed with a debilitating and potentially terminal disease.\u00a0<\/p>\n I am leaning into these end-of-life plans, engaging both the creative and Type A aspects of who I am. I am taking online art classes, learning to sketch, to\u00a0paint, trying to teach myself to knit while simultaneously writing my care plan, getting my \u201cfinal wishes\u201d down on paper. \u201cFinal Wishes\u201d is such an odd statement. I imagine genies seduced from bottles and how you can\u2019t \u201cput the genie back\u201d once it\u2019s freed and am reminded of the permanence of my decision.\u00a0<\/p>\n I don\u2019t like the term \u201cbucket list,\u201d but I\u2019ve been making one \u2014well, part bucket list, part to-do list. In my mind, I\u2019ve divided this into three parts: places to see\/go, things to do, things to no longer do. The list has things like:<\/p>\n Places to see\/go:<\/p>\n 1. See the northern lights in Maine, hike while I\u2019m there.<\/p>\n 2. See fall foliage somewhere in the northeast. One more time.<\/p>\n 3. Visit another country. I\u2019ve settled on Algonquin Park in Canada\u2019s Ontario province. Stargaze, see the northern lights from there too.<\/p>\n Things to do:\u00a0<\/p>\n 1. Go camping. Sleep connected to the earth.\u00a0<\/p>\n 2. See a meteor shower.\u00a0I checked this one off the list.<\/em><\/p>\n 3. Plant a garden.<\/p>\n 4. Collect and\u00a0compile recipes<\/a>\u00a0for my kids, make care packages for each one with sentimental items.<\/p>\n 5. Finish\/sell my book.<\/p>\n 6. Write letters to loved ones. See loved ones.<\/p>\n Things to no longer do:<\/p>\n 1. No more offering myself up to those who aren\u2019t interested in genuine loving\/considerate relationships.<\/p>\n 2. No more hating myself for the past. I want to love the life I lived, flawed as it was in many ways.\u00a0<\/p>\n 3. No more finishing books that I don\u2019t like.\u00a0<\/p>\n It\u2019s been four years now, counting that lengthy viral illness. I\u2019m tired. I reached the decision to end my suffering after much thought and consideration. I don\u2019t know exactly when, but I\u2019m close to settling on an assisted end-of-life plan.\u00a0<\/p>\n Also see: <\/strong>How to give your heirs quick access to your bank accounts when you die<\/a><\/p>\n But now, instead of wondering how my disease\/s and decompensation will progress, worrying about the logistics of needing a greater level of care, I\u2019m thinking more about living for the first time in\u2026well, at least four years, maybe more. I\u2019m seeking joy, love and kindness and looking for everyday opportunities to pour those things back out into the world around me.\u00a0<\/p>\n Some days, I\u2019m successful and other days, I\u2019m not. I\u2019m not a gracious sick person. But in all of this, I\u2019m grateful that in planning for my death, I\u2019ve finally learned what\u2019s important to me\u2026finally learned how to live.\u00a0<\/p>\n S.C. Beckner\u00a0is a freelance writer and essayist. She has an MFA from the University of North Carolina Wilmington. Her work can be found at Insider, NBC THINK, and various literary magazines. S.C. resides in Wilmington, N.C. where she writes and once hiked and walked the beaches with her two dogs.\u00a0<\/em><\/p>\n This article is reprinted by permission from\u00a0<\/em>NextAvenue.org<\/em><\/a>, \u00a92024 Twin Cities Public Television, Inc. All rights reserved.<\/em><\/p>\n
\n GOOGL,
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\n the first thing that comes up is the number \u201c988<\/a>\u201d and encouragement for me to reach out for support.\u00a0<\/p>\nThe downward spiral<\/strong><\/h2>\n
\u2018Maybe ALS\u2019<\/strong><\/h2>\n
A decision made<\/strong><\/h2>\n
Leaning into end-of-life plans<\/strong><\/h2>\n
Making lists<\/strong><\/h2>\n