I will share the joys, pains, and dirty little secrets of my life with multiple sclerosis. My goal is to find a reason to convince you to support/share my fight against MS. Please donate today: http://main.nationalmssociety.org/goto/eleanor.
I require more than 30 Efforts, less would create an unsubstantial portrait of the man who needs your support. 30 days is an unrealistic timeline — once discovered, neither accurate words nor the courage to write them, develop so quickly. How many efforts will this take, and how much time will require to share them? I don’t know the answer, so I will just continue writing.
This is Effort Number 31…
The evening of October 5, 1999, was my sixth in purgatory; I did not yet realize the man I was on September 29th had died.
To call that period in my life dark, the time between my first doctor’s appointment until I first heard the words multiple sclerosis, would be a gross mischaracterization. Darkness is only recognizable in the search for something – light, hope, knowledge, faith. I wasn’t looking. I didn’t know. Instead, the mistakes I learned all over those six days and nights helped carry me into a hole where years would pass before I realized how dark my world had become.
Purgatory was where I created or refined my distractions:
- Work focus – not necessarily the “path to success” focus, but the areas I saw value for my soldiers and me
- Vices – alcohol, sex, cigarettes (Army regulations prevented me from exploring more dangerous avenues)
- Solitude – unless there was a need to satisfy the other two, I preferred nothing
I’m ashamed to admit how many years passed by before my distractions no longer played a primary role in my life decisions.
[That’s not true.]
You’re correct. That is not true.
I’m not ashamed to admit it; truthfully, I don’t know the proper time frame of each distraction. Cigarettes? 2004, with four distinct momentary lapses many years ago. Alcohol? 2019/2020, the jury is still out. Work focus, sex, solitude, even alcohol – is there a safe and healthy way to approach these distractions? If so, when did I reach that point? Did I reach that point yet? Will I ever reach that point?
I don’t blame any of my transgressions on multiple sclerosis. I alone am responsible for my actions. The only reason I share the story with you is to describe what became of my life the week after I died, yet before I realized it happened.
That was 20 years ago yesterday…
Instead of telling my story, I chose to spend the day with Eleanor. We spring-cleaned the house together. Yes, in October. We enjoyed breakfast and dinner at home, opting for our weekly meal out at lunchtime. We enjoyed our time together, and when bedtime came, I soothed my daughter to bed with our nightly ritual, “My Little Love." https://drive.google.com/file/d/1LoNQlJXtNvZ9xnmaPnavcbIW6xU4zawl/view?usp=sharing
I’m proud to say this is the man I have become.
I already told you my story in “Effort 1 – Suicide.” October 6: I had my first MRI at a Korean hospital. The Army didn’t have much of a need for those facilities in-country. I was handed the results to bring back to my doctor at Seoul (2 1/2 hours from where I was based). As my driver was taking me to our camp, I read the dual Korean/English results, where the findings were “possible multiple sclerosis.” I was 27 years old, in command of an air cavalry troop overseas, all alone, and had absolutely no idea what multiple sclerosis was. It took six days to receive a diagnosis that for many MS patients often takes years. I was numb. I went back to our base at Camp Eagle and stared at the wall all night. The next day I drove to Seoul to meet with my neurologist.
20 years later. Everything is different, yet so much remains the same. The man I was indeed died on September 30th. Part of me woke from purgatory on October 6th, yet part of me is still there – the part that still does not understand what this disease is going to do to him. As for the rest? Take your pick: some version/circle of hell, damnation, redemption, salvation.
All of the above? None of the above? I don’t know. I’m no longer sure it matters. What I do know is that today is October 6th again. I’ve known I have multiple sclerosis for 20 years. After giving Ellie a hug and sending her off for the week with her mother, I burnt my body into the ground, for 2 1/2 hours, at the gym. After I post my story, I will fold some laundry, eat dinner, and get a good night’s rest. I will not stare at the wall all night. I will not surround myself with distractions. I will live with a hell of a lot more clarity and light then I did 20 years ago/10 years ago/5 years ago/yesterday. Tomorrow, I drive to the Portland VA hospital for my six-month Rituxan infusion and face whatever comes next.
[That’s a great story, Kevin, but you told everyone yesterday that October 7, 1999, is the date you first heard the words “multiple sclerosis.”]
I was wrong. I went back and read my file.
[Were you wrong then, or are you wrong now?]
Just give me this moment, will you please?
I hope the stories will inspire your donation to my fight.
Because it is a fight.
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 ride!
Please donate today: http://main.nationalmssociety.org/goto/eleanor
100% of the royalties earned from my books go to the National MS Society, to support our fight: http://neverstopneverquit.com/books
Never Stop… Never Quit…®
Never Stop… Never Quit… Reg. U.S. Pat. & Tm. Off.