October 11, 2023
Months of uneasiness preceded my trip.
Psychological juggernauts in the shape of mounting health issues battled the
resurgence of past demons over the right to take the lead in the domination of my
senses. At times, it had been unbearable.
When I returned home three days ago, I had one
objective: Live Like There’s No Tomorrow.
My fondness for this cliché isn't as uncivilized
as you might assume, despite my poor wording. Starting my article by explaining
what I mean would make for a dull story. If Aesop had begun his fable with its moral
message, would children read “The
Frogs Who Wished for a King” with the same curiosity? Of
course not, but his woven storyline proved it was wise to ensure you can better
your condition before you seek to change it.
October 6
I sat in the Cadet Chapel as we memorialized 21
classmates who have seen their final tomorrow. War, illnesses, accidents, and
suicides are some reasons they left us far too early. One by one, their names
echoed throughout Gothic architecture as classmates called role for our
brothers and sister. My mind wandered the way it does every time death joins a conversation.
I wondered what occupied their thoughts and what they did the day before, suddenly,
there was no more tomorrow. I wondered about the unbearable anguish of those
who knew there would be no more tomorrow. What would be different if those 21
souls had the chance to do it over again? Would we still have mourned 21
classmates? Twenty? Nineteen, fourteen, or four? How different would our world
be if all 21 tragedies instead celebrated their next tomorrow, tomorrow?
There Is No Tomorrow for Me
Fifty-one trips around the sun have mellowed my
temperament. I’m no longer arrogant enough to assume I have the right to speak
on behalf of everyone, so I added the caveat “for me.”
At some point, I will face my end. That may
happen later today or sometime far in the future. Regardless, one tomorrow will
never come. Until then, there will be many lasts for me.
When I climbed out of my Apache helicopter on Thursday,
September 2, 1999, I never considered the possibility that I was standing in
the doorway of the last tomorrow for my aviation career. If I knew, what would
I have done differently? When I shared “Little
Dreamer,” my reflection on the last day I ran faster
than Rogue, there was still a glimmer of hope that medicine, determination, and
miracles would combine to give my legs the advantage tomorrow. Tomorrow never
came. Now, I pray it never does because it would mean my daughter had grown
slower and weaker than her broken-down father.
My heart does not mourn the loss of those
tomorrows the way my classmates mourned our fallen. They cried and embraced the
families of the dead. They embraced each other, imagining once-unimaginable
sacrifices if those efforts would bring their friend back. They sat in silence.
Then they sang! Cherished hymns from our cadet days did not just mourn 21 lives
ripped from our ranks. Ageless chorals reinforced and celebrated collective
bonds we will always share. Tears would come again later that day, then the
next, and the next, but those sickly sobs paled compared to the bellyaching
festivities brought on by every story pulled from the past. We are alumni, even
worse, middle-aged old grads of the Long Gray Line. That title mandates plenty
of griping about changes from “The way it was,” the weather, and the fact that
our Army football team cannot get out of its own way (until today, when our 2-6
team took on #17 ranked, 8-0 Air Force, and won 20-3). Those moments were also short,
as more ghostly memories about the way it was pulled another round of tears, stories,
and even louder bursts of hilarity. Forever tethered to the past, their somber embraces
turned to joyful hugs, and finally tearful goodbyes with promises to do this
again tomorrow…
For me, loss remains in my thoughts like a once-bountiful
stew left to simmer unattended on the stovetop. The water, red wine, and beef
broth have long since evaporated, their remnants burnt into the once-immaculate
Dutch oven. Blackened ingredients no longer resemble the savory chunks of beef,
radiant vegetables, and subtle wedges of potato from when they started.
Pleasant rosemary, thyme, paprika, and marjoram aromas are replaced by the
stink of burnt promises of what was to come. Every memory I have of my time in
the Apache has that stink because I left while my career was still simmering,
never savored.
I struggled with the next line in my story. “What
different steps would I have taken if I knew there would be no more tomorrow in
my aviation career?” It no longer feels like a valid question. Tomorrow never
occurred. It never will. Empty memories reserved for the never-realized days
after tomorrow occupy far too much real estate in my mind, leaving nothing
but scraps of storage space for the true history that I never mourn losing.
It is a senseless paradox. Trying to understand the logic would drive me to
mania faster than the pattern of derangement I followed for 24 years.
There is only one path. My classmates showed me
the way.
October 23
Tomorrow is here. The sun is still hiding
somewhere over the Midwest, but I popped out from under my covers to kick off
the new day and run (figuratively) to my computer. I thought about my aviation
career, using it as nothing more than a token symbol of countless things taken
from me, not lost, because of my MS. A genuine tear of sorrow pooled in the
corner of my eye; my chest heaved as I tried to take a breath. Seconds before
my body collapsed from grief and regret, forgotten memories crashed into my
mind and flooded it with laughter, excitement, and stimulation. A smile
splashed on my face just as I looked out and watched my back deck come into
view under first light. Tears may come again later today, or the next, but the
heartache won’t be the same. I don’t know how to describe the difference
between mourning something lost versus languishing over a tomorrow never had,
but the adjustment is life-changing.
Today was here. Regardless of what expired after yesterday,
last year, or on September 2, 1999, there was still a tomorrow for me. I can’t
run anymore, but I can walk. When Rogue came home from school, we took an
impromptu stroll through the neighborhood as she caught me up on the frenzied life
of a 13-year-old who holds a passion for everything she encounters. When the
day comes that I can no longer do that…I will deal with that insurmountable
obstacle when it crashes on top of me tomorrow.
Live Before Tomorrow Comes
Live like there’s no tomorrow for me means
nothing more than enjoying my time because, unlike the man I was on September
2, 1999, life blessed me with the knowledge that there is no tomorrow for me. My
MS will continue to progress, continue to chip away at my body, and continue to
take what I have today. Use It or Lose It
downplays the undeniable. I’m at the point where I can track measurable loss
over small increments of time. Those intervals are becoming shorter and
shorter. Capabilities, God’s gifts, talents, honed crafts, or essential
functions–nothing is protected. Everything lies in the destructive path of
multiple sclerosis.
When I lose more tomorrow, memories won’t rot in
my mind. They will remain spirited, sprouting wings and flying through my
stories with breathtaking tales of how I used those capabilities to their
fullest extent before my MS stripped me of their companionship. When we go for
a walk, my daughter will ask me, “Daddy, why are those cartoon birds singing
and fluttering all around?”
“Memories, darling. They’re making memories.”
I will suck every bit of juice from my limbs
before MS claims them. And when it does, I’ll remember what my classmates
taught me: cry, embrace those close, sit in silence, then sing before sharing
ruckus tales about what I did before I couldn’t do it anymore. I will tell
stories that make you want to laugh at me, cry with me, and celebrate
everything I can still do until another tomorrow comes. When Rogue goes to high
school next year, then college, then everywhere, I’ll tell stories of “back in
the day” when I had to do all that plus a hundred things more (let’s call that my
creative nonfiction). And every time her legend travels beyond anything I ever
dreamed possible, which happens quite a bit already, I will be there to praise
the amazing person she is today and blossoms into tomorrow.
Tomorrow Is Only the Next Day, The
Next Day Is Not Tomorrow
English is a beautiful language. Thanks to
Germanic tribe conquests of England over 1,500 years ago, the influence of
romance languages, and various other tongues across Europe, Africa, and Asia, I
can rewrite my fears to dismiss the anxiety they create. Inevitable becomes a faraway
journey instead of an immediate terminus. Tomorrow never comes. I can play my
silly game and live in “the day before…” like an infinite loop until the harsh
realities displace my childish wordplay.
Disease-modifying therapies show statistical
effectiveness in slowing the progression of multiple sclerosis. After years on
the therapeutic merry-go-round, Rituxan became my stable option in October 2016.
Was it working? Would my tomorrows be worse today without those semiannual
infusions? Probably. My journey with Rituxan came to an end by way of my last
MRI scan. Fancy terms like “T2 signal hyperintensity” and “white matter” provide
a bit of holiday spirit to my exam (think “lit up like a fucking Christmas
tree”). Extra effort was added, describing the white matter foci involving the supra
and infratentorial brain and the supratentorial brain lesions predominantly
within the sub and juxtacortical distribution, intended to test either my subpar
anatomy education or my exemplary Google search skills.
The VA gave me electronic access to those test
reports along with a healthy serving of time to think about any possible
directions my life was going—five and a half weeks passed before the chance to
talk with my neurologist.
[You are now at the point where I paused my story,
standing face-to-face with those health issues and past demons. I could not craft
the climax of my manifesto with no idea what course of action I would take in
2024. Pray for the best, expect the worst, be prepared for both.]
Unfortunately, my smile and sarcastic demeanor,
easing distress with entertaining tales from back in the day, don’t do shit
against the uninterrupted advance of my multiple sclerosis. Tears and hugs no
longer lessen the burden of those MS demons draped over my shoulders. With
secondary progressive multiple sclerosis, they continue to grow, searing pain
throughout my body 24 hours a day. Violent swells, unpredicted aggravation of
my existing symptoms, often magnify their onslaught. New Activity is rare, but that’s what those bright hotspots on my
MRI represent. What function passes through the particular nerve endings butted
up against these lesions? How long before the ability they carry degrades? What
will I lose tomorrow?
After writing five paragraphs about heartbreaking
injuries and illnesses my classmates have experienced, their physical loss and
psychological torture, I deleted the stories. It’s not my place to corrupt
breathtaking experiences with my creative nonfiction. The tiny fraction of struggles
they shared pale compared to the hardships they endured, yet they have one word
in common: FIGHT.
Had Aesop been a member of West Point’s Class of
1993, he would have crafted a fable of Tóra, who cries, hugs, laughs, and sings
in the face of insurmountable tragedy. The shrinking rabbit entertained others
with captivating stories and antics that enchanted their plantation on the west
bank of a mighty river. Tóra insisted, “You simply must hear my words before
tomorrow comes, and I can speak them no longer.” Music and song helped Tóra
bring his anecdotes to life, distracting his friends from the vicious battles
he fought. Tóra grew smaller and smaller every day, but nobody noticed; the
rabbit became a towering warrior who entertained the other creatures and
inspired them to join in on the merriment. When Tóra finally became a rabbit so
tiny that no one could see, they cried and hugged. That was when they realized he
filled the plantation with laughter and song for his voice was still loud. No
matter how small he was, Tóra would still be there tomorrow.
Unfortunately, I’m not that creative. My reliance
is on plainspeak.
I fight, resisting any attempts to shrink and
wither away my body. I will seize the opportunity every time science develops
ways to hold off tomorrow. All the while, stories will inflate my swagger
larger and larger. Whenever you read my words, each time they make you want to
laugh or cry, I hope you remember how my own tears spilled from the same humor
and sorrow.
I was back at the VA yesterday for my long
overdue discussion of those MRI results. I rejected my neurologist’s premise
that the activity is insignificant–deterioration is expected–I should stay my
current treatment plan. After 14 semiannual infusions of Rituxan, I pushed a
transition to Ocrevus. Should that prove ineffective, we will
pursue more aggressive options.
November
4
Thanks to my classmates, my wonderfully
well-thought-out plan is to pretend. I promise this is not denial, the typical
reaction of my irresponsible he-never-really-grew-up mentality. I won’t try
to convince anyone that my secondary progressive multiple sclerosis will not
progress. It’s built into the name. Nor will I lull myself into complacency
that the cure to all my woes is right around the corner. That cure, that
world free of MS, is coming. I will dedicate my efforts to achieving that
tomorrow—I will use my creativity and energy to help raise the money needed for
crazy-smart scientists to do their crazy-smart science things.
I accept the downward spiral my body is going to
take tomorrow. What comforts me is the fact that it does not matter. My fight
is not a losing battle; my contribution is not a sacrifice. The heartfelt pleas
I express for donations in support of a cure I will never enjoy is the most
selfish act I have ever committed. The moral in my baffling world of
contradictions only reveals itself at the end of my story. That will not happen
until tomorrow.
In the meantime, I will see everything as strong,
better than it has been in a long time. That upward tick is the reason I have a
lot of making up to do.
Rogue deserves a dad who does not shy away from
Magical Experiences D, E, F, and G because he was brooding over his loss of
Capabilities A, B, and C. Together, we will make it to Z before looping around to
restart the alphabet (maybe in the Hangul or Hindi the next time).
I have shunned family and friends while crawling
deeper into my self-imposed isolation. They deserve to know the value I place
on their love and support. Like my classmates, gatherings will become
mini-reunions where we celebrate our common bond, spanning anywhere from
yesterday to December 28, 1971. Reflections over loved ones we lost along the
way may bring tears and hugs, but they will quickly give way to laughter,
singing, more embraces, and cherished stories from the past. Impromptu hijinks
will create new stories we will gather to celebrate and share tomorrow. Be
prepared for random texts asking What’cha doing this weekend? before I hop
in my car or board a flight to somewhere…
Committing myself to a world of imagination, I
will dive deeper into my writing. Digital pages rife with once-absurd
storylines will become speculative tales of fiction and fantasy, where my
readers entertain the thought, Holy shit, this could really happen. Biographical blogs about my sometimes catastrophic navigation
through that river just east of the plantation will rattle your mind with the
realization, Holy shit, that really happened. When your guard is down,
when my stories overwhelm you with emotion, I will drop my shield and beg:
“Please consider a donation in support of our fight against the devastating
effects of multiple sclerosis.”
For over 34 years, I have borne witness to the
greatest feats of compartmentalization imaginable. Applying the brutal force of
a heavyweight knockout punch with surgical precision is the underlying standard
my classmates demonstrate day in and day out. That’s what I learned at my 30th
reunion.
When My Tomorrow Never Comes
When the sun rises that morning, countless others
will open their eyes and welcome a new day. Snapshots of peace and anxiety will
continue to flood my family, friends, and loved ones. Emotions will sprinkle
their lives with hearty amounts of laughter and tears. A tiny piece of that
will be my contribution to their lives. The greatest gift I can offer them is
another reason to smile–another charming story to tell–one more memory to help
ease any troubles they may face. Reminders of how I wasted my time would be nothing
more than another burden heaped onto their shoulders, so I will live like
there’s no tomorrow for me and try my best to avoid selfish acts that tarnish
my daughter’s next sunrise.
I learned that strength of character from shining examples of the West Point Class of 1993, Defenders of the Free.
Please consider a donation in support of our fight against the devastating effects of multiple sclerosis.
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