I despise clichés. I see them as an inaccurate way to marginalize topics of greater importance; my response is normally one of scorn or mockery.
It's always darkest before dawn
No, before dawn is BMNT (look it up).
That which does not kill us, makes us stronger
Sorry, Nietzsche, what doesn’t kill you can weaken, cripple, bankrupt, depress, or worse.
Whatever happens is God's will
My initial response was vulgar. To put it in terms appropriate for Ellie: please don’t say that about my God.
There is no cliché appropriate for my current predicament. My body is under siege; daily struggles are taking their toll. To be honest, I wasn’t sure if my final blog post of 2016 (Bike MS 2016 - Last Dance) was indeed my last dance. I lost the taste for writing about MS, for documenting continual loss of the existence I will hold dear even after memories fade. This is not the life I’m willing, able, or strong enough to endure; I despise this disease for forcing a fight.
Visually, my slide began around four years ago, after release from the hospital (meningitis, a reaction from medication #3).
On April 8, 2013, I started Tracking my MS. It is a completely non-scientific protocol that highlights one area perfectly: the downward trend. My decline, though not significant day-to-day, has proven crippling after four years.
There are moments when I sit back and think of what I have lost:
- I can’t run anymore; walking any distance is difficult
- I can’t type on a keyboard, instead awkwardly dictating through a voice to text application
- I’m left-handed but I cannot write, nor can I shave, eat, dress, or brush my teeth in the ways I learned over the first 44 years of my life
- I have complete feeling and sensation on my left side, I’m just losing the ability to move and coordinate
- I have complete ability to move and coordinate my right side, but I have already lost most feeling and sensation
- I cough and choke dozens of times every day, as small portions of everything I eat and drink go into my lungs
- I fall, leading to cuts, bruises, and cracked ribs
- My voice ranges from garbled and slurred to inaudible (voice-to-text aggravation)
- Pain, spasms, edema, and atrophy are part of every day
What do I miss most of all? My pincer grip. The simple ability to grasp something between my thumb and index finger; I could do that with my left hand since I was about seven months old. I really do miss my pincer grip, for its absence makes so many simple tasks… well, difficult or impossible.
This story of loss isn’t shared with you to elicit pity or sorrow. I'm describing my mindset. I finally feel disabled. After 18 years of battles, hope, and clichés, I am coming to grips with the fact that this is my MS. While we fight to drive change through advocacy, professional education, and providing services to empower people with MS, my struggles will continue. While we raise funds to support cutting-edge research, research that will someday lead to a cure, my MS will worsen. Since you last saw me, my condition is worse; when you see me again, it will be worse still. I have little hope of improvement. Next year, next week, I try to envision life…
So, now what will I do?
The first of many questions, ‘So now what?’ is an absolutely frightening beginning for a man in search of answers. How bad will this get? Do you have the money and insurance to care for yourself? How about your family? How long can you hold on? How long should you have to?
I never imagined feeling tired and scared like this again.
Years ago, a good friend of mine shared with me this memoir, written by William Clark Styron. They discovered the book when in a time of personal struggle; I first read it in during rising action of my own trials. While it may be easy to succumb to fear, depression, and anxiety (as I nearly did in 2003), understanding the existence of alternate paths is a value I am unable to quantify. Any disease, any disorder, is a gateway into despair.
There was no “cause” to my depression; my MS was merely one, albeit a significant, aggravating factor. Ultimately, the parallels of my struggle and Styron’s were remarkable:
- Those “who kept admonishing me that suicide was ‘unacceptable’”.1
- The discussion of “early sorrow—the death or disappearance of a parent...before or during puberty”2 (my father lost his own struggle with depression to suicide in my youthful days).
- Ultimately, I embraced the singular truth, “depression is not the soul’s annihilation; men and women who have recovered from the disease—and they are countless—bear witness to what is probably its only saving grace: it is conquerable”.3
So, why discuss this beast I conquered more than 14 years ago? Styron writes, “…depression has the habit of recurrence. But most victims live through even these relapses, often coping better because they have become psychologically tuned by past experience to deal with the ogre. It is of great importance that those who are suffering a siege, perhaps for the first time, be told - be convinced, rather - that the illness will run its course and that they will pull through.”4
Recurrence seemed inevitable a few weeks ago. The severity of my disability and, what I saw as, the futility of fighting was confirmed again and again: long-term disability transition from work, the VA’s 100% ‘total and permanent’ classification of my condition, and Social Security disability processing, on the first attempt without any questions, were just a few of those things that threaten depression. Adding to that, my body continues to fail. I’m quite aware of the danger confronting me.
Knowing depression will unexpectedly strike when you’re least prepared, I picked up William Styron’s memoir once again for reassurance I will pull through. His words helped me shape my fear into a recognizable form. In those pages, I sat with the author and commiserated. I listened to his deepest moments, then shared my own inner thoughts, both before and now. I continued to read as he told me his story of recovery from that depressive state. I shared my own account, my own physical and emotional recovery which would return me to this amazing life I hold dear. Styron and I worked out quite a bit in that time; collectively, we mapped my plan to start.
So, here’s what I will do
Unwilling to boil my efforts down to stereotypical catchphrases, I’ve chosen to not start anew or start over. I'll just start: each day, each effort, etc. Sure, maybe there is no time like the present, but that will always be the case.
I’ll forgo the cliché: when the going gets tough, the tough get going.
I prefer my mantra: Never Stop… Never Quit…
My focus on medical exams and evaluations, disability paperwork, and benefit transitions are coming to an end. While nagging physical issues, new appointments, and ongoing paperwork will always be part of my routine, they are no longer at the forefront as of today.
I don’t have a Bucket List but I will maintain a Rolling List of activities and adventures I need to experience, for the first time or yet again, this time as a new me or with my family. There are so many places to go and so many things to see. This list will never be complete. I’m renewing my passport; my goal is to fill it up before the time comes to renew again. Brie and I are excited to show Eleanor so much; we’re passionate about new adventures together.
I will not travel because of my MS, nor will our explorations be in spite of my MS. No, my MS will just be there, hanging over me, slowing me down and threatening activities. I will curse my MS, tell it to “piss off” as I forge ahead, and live life when I forget, if only for a moment, I'm not limited by my MS.
I will participate in the fights my MS started. In August, I ride again with Team Amulet for BikeMS (15 years and counting). On Friday, April 14, I undergo my 2nd treatment of medication #7. That Saturday, I walk in Walk MS. My reason for walking this year is simple: I may not be able to next year.
I will project my voice in our community. I hope my lessons, learnings, and fights will support the mission of the MS Society in my role as a board member of the Oregon Chapter. My love and faith will hopefully continue to shape the young souls I teach on Sundays at church.
I will celebrate with others on their journeys: birthdays, graduations, weddings, retirement, your fight for your cause. Life can't be all about me or all about MS.
Finally, I'll write. My writing can't be all about me, or all about MS. Last year, I published My MS and E. Soon you'll see:
● My Puppy and E
● My Family and E
● Air Pressure and E
● 28 and E
● Imagination and E
● ...and many other magical children's tales about growing up as a this amazing little girl.
I'll introduce you to Dominic Bandall and Chris Baxter as they face their own fantastic trials forged in my imagination.
Yes, some of my writing will also be about this fight. I’ll need to raise awareness. I'll need to raise money to fund more research. I'll need to vent. Every year, my outreach has a theme. This year, my stories will be the roller coaster of emotions with which I struggle: horrors of disease progression, its loss, debilitation, and the unknown; sparks of hope, some dashed while others still show promise; tales of unending strength, compassion, and support; stories of my dreams and fantasies in this fight against MS. I'll share examples of the benefit your support has already realized, and tales of why we need to do more.
It starts today
I awoke the morning of March 14th, my first day of long-term disability, and told myself, “It starts today”. New life, new focus. I fell (figuratively and literally). My frustrations mounted quickly: ailments, pain, medications, health care benefits, insurance. Life. March 15 - “it starts today”. 16, 17, 18… There were ups, there were downs. Life. I soon realized every day will require the same level of passion and promise. Every day, for the rest of my life, it starts today.
Hope for the best. Expect the worst. Be prepared for both.
It starts today
I guess there are some clichés appropriate for my current predicament!
The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!
Never Stop… Never Quit…®
walk, April 15: main.nationalmssociety.org/goto/KBwalk17
walk, April 15: main.nationalmssociety.org/goto/KBwalk17
bike, August 4 – 6: main.nationalmssociety.org/goto/embk
1 Styron, William C. (2010). Darkness Visible: A Memoir of Madness [Kindle version] (l. 708). New York: open Road Integrated Media
2 ibid. l. 728
3 ibid. l. 771
4 ibid. l. 698
Never Stop... Never Quit... Reg. U.S. Pat. & Tm. Off.