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The emissivity of my MS — Chapter 01
Emissivity is the measurable release of energy (thermal radiation) from a body. In my Army Aviation days, I learned this as the fourth factor of thermal imaging in the Pilot Night Vision System. The thermal imaging system of the Apache passively translates heat—either reflected off, transmitted through, or emitted by a target.What does this have to do with me? I’m the target, and multiple sclerosis is my heat source. What my friends and family have seen for the last 24 years is comparable to the thermal imaging scenario I described.
Reflectance: the damage from my MS constantly reflects off me—my physical impairment, the limitations placed on me, and the losses I have experienced. The physical, professional, and emotional burden is sometimes onerous for me to see beyond that reflection.
Absorbance: the amount of shift I have had to absorb because of my MS is unquantifiable. “Suck it up and drive on” is more than dumbed-down Army logic. Even if I wanted to show the world everything my MS does to me, I wouldn’t know how to start or if my reflection accurately portrays my plight. I hold back for lack of alternatives. MS has taken much from me. Still, I refuse to let it occupy more of my precious time than it already controls. I repress the suffering of my past in favor of promises my future holds. I don’t want the only image of me to be my battle with MS. I hide fear so I can show elation.
Transmittance: my writings tell me I have become proficient in this subset. Through personal examples, I often try to show multiple sclerosis’s devastating effects on our community of victims. I generalize their effects by showing you my MS, but I am describing the standard/medical/textbook definitions of MS offered through the backdrop of a target (me).
If thermal imaging ended there, with just those three factors, I might be OK. Heck, it got me this far! There are so many flaws and holes that when I read the beginning of this story, the questions outweigh any other thoughts I may have.
Where does the energy come from?
What decides the impact energy has on a target and how that target will respond?
What happens to absorb energy?
When does energy turn from absorption/generation into emission?
A combination of scientists, neurologists, and therapists spend an awful lot of time trying to understand these questions and how they relate to me, the target. My ongoing healthcare appointments often focus on where my MS issues come from. Time determines if an impact is reflected or absorbed.
I reflect. I transmit. I absorb.
But for how long?
For 24 years, I have absorbed much of the pain, loss, debilitation, and damage exacted by my MS. Time has not softened its efficacy; repression has not dulled their energy. Nor have my dirty little friends been idle, instead raging and burning with intensity. How long can this last?
Emissivity is my theme as I roll into 2023’s Bike MS we can. Good or bad…Lighthearted or somber…Positive or filled with rage, my stories this season will highlight my MS’s burden on me. I will make this personal. I will show you what MS does to one individual–me.
I will apologize one time, right now, for the topics included in my detonation of energy that has been absorbed and generated within me. I will share openly and honestly the translation of my MS through rage, fear, passion, humility, delight, horror, indifference, sarcasm, and so much more.
My non sequitur approach won’t hide behind the cover of protection provided by my family in the MS community fighting alongside me. I won’t focus on the statistics and percentages we face as a group. I need to tell you the story of what my MS has done to me and why I will ask for your help finding a cure because nobody else should live like I have for 24 years.
The Emissivity of Pain
The emissivity of my MS — Chapter 02
What are the expectations for someone who endures 24 years of pain? It’s a slippery slope for a variety of reasons. Showing pain elicits sympathy. Aring too much pain too often shifts feelings of martyrdom towards overreaction, hypochondria, and narcissism. Masking will draw connotations of bravery, getting better, or “It’s not that bad for him.” I always thought it was best to show a little bit of one, a pinch of the other, and absorb the rest.
I REFLECT the pain I struggle with in not-so-subtle, direct ways. I try to tell the world, “Because of my MS, I am in constant pain.” I usually do this in my blogs when searching for sympathy and support during fundraising season. In the same way, other MS patients’ pains TRANSMIT through me when I share examples of the common burdens we experience. My revelation hopefully draws sympathy while my smile highlights bravery as I mock the pain with a hearty smile and casual pose.Even in those extremes, much is ABSORBED. Often forgotten are the trials of my “normal” days. Getting out of bed in the morning… Going to bed at night… Standing too long… Sitting too long… Trying to cook… Trying to eat… Dishes… Laundry… Heat/cold, reading/writing, doing too much/too little/anything at all…
Every moment of my day draws pain and discomfort. How do I draw out all I have absorbed because of my MS? What is the emissivity of my pain after 24 years?
I can’t scream. A set of muscles in your neck are responsible for producing sound and speech. These laryngeal muscles are part of the long list of damage from my MS. A while back, I was dining with a group of friends when one of them popped their chair up to scoot it closer to the table— and right onto my shoeless toes. That hurt, and my first reaction was to scream. What came out was a screeching sound akin to a bathtub full of screaming baby piglets. It did not have its intended effect.
I can’t cry but am momentarily sensitive to the slightest tug at my heartstrings. On no less than seven separate occasions, Eleanor had to ask me if I was OK yesterday. We were watching an old sitcom rerun, one of those sappy episodes. In every emotional scene, muscles constricted in my neck and chest. I don’t know why I could not contain myself; I’ve seen the original dozens of times. Although emotions are a common symptom of MS patients, my expressions are uncomfortable “choked up” feelings at insignificant times. Beyond that–I turn cold and indifferent.
I limit the emissivity of my pain to words for now. Maybe writing is my first step. In the long run, I don’t want to limit my reactions to random spurts of “Fuck,” “Ouch,” and “Help.”
I don’t want to absorb any more pain.
The Emissivity of Loss: Rejection
The emissivity of my MS — Chapter 03 of the 04
A reflection on shades of my former self…
Call it what you want. Moving on, Pushing Aside, Retiring, Replacing, Unwilling, Unable, Unsafe. Any way you slice it, my MS has led to much more loss than the sensation of my nerves and atrophy of my muscles. It swept aside promising careers as a leader in both the US Army and corporate America when I could no longer do the job for which I was once desired. Past adventures have been relegated to “back in the day” stories. I dismissed relationships and connections because of my MS—the fear of the unknown, the resentment over what I no longer offered, and attempts to reject my personal struggles. What I once loved, stood for, desired to be, or hoped to learn are now all indices in my accumulation of losses.
I write about my losses as a REFLECTION of the man I was before MS came into my life. All too often, those images are the first things many people see. Loss and rejection are often the connections I try to make between myself and the rest of my MS community, TRANSMITTING the primary, secondary, and unseen effects of sclerosis.
I ABSORB the sensation of rejection.
· “Don’t cry over spilled milk.”
· “You cannot change the past.”
· “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” ~by the way, Reinhold Niebuhr, thanks for your nebulous cliché.
The burning difficulty has always been my refusal to accept that which I have “been told” I cannot change. Anguish and anxiety flourish when the person I was along my journey and trials, or the person I have become, offends someone because I am not the person they feel I ought to become/remain. Anger, resentment, and anxiety remained buried for too long, scabbing my heart until almost nothing could penetrate; if nothing could reach my heart, nothing would hurt. Or so I thought…
Some connections still reached my inner core for more reasons than I’m sure you care to explore. Loving family. Caring friends. My vision of possibilities. Love. Eleanor. For my Emissivity Project, I decided to expose the hurt of loss and rejection I have absorbed. I found there was no more hurt underneath the scab I ripped away. The only reminders I had were the scars I carried.
The emissivity of my loss and rejection has only seemed to expose a heart buried under almost 24 years of scars. I think I will work to keep it that way. As I experience further loss because of the effects of my MS, which I’m sure I will, I’ll reflect on it in my blogs and conversations (my therapist will have some busy moments). For any personal rejection, I’ll address and move on; I harbor no resentment for past grievances, nor can I apologize for what I went through. I’ll transmit the pain my entire community experiences as a reminder of why we must continue to fight.
I guess Niebuhr’s Serenity Prayer is not as cliché as I once thought.
The Emissivity of Fear
The emissivity of my MS — Chapter 04
Fear is the worst of all the projections my MS effectively focuses on me. Any pain I experience pales compared to the fear of what I will feel tomorrow or the constant worry that my current levels will never recede. Not-yet-experienced losses always seem to exceed today’s sadness. Absolutely every physical, mental, and emotional effect of my MS clouds me in fear.
I REFLECT the fear my MS emits through a thin mask of sarcasm and bravery (stubbornness, ignorance, foolishness...). I’ll share posts of my hospital visits in hopes of eliciting sympathy or reassurance that it’ll get better. Don’t tell anyone. I will never admit this!
Through my stories, I’ll TRANSMIT the fear MS creates on “others” (translation: me) by using examples of how they could overwhelm me if I were a weaker man (they do/I am).
Most of my fear has been unsuccessfully ABSORBED for almost 24 years. Unsuccessfully, I say, because I recognize there is a trickling emissivity of fear that will kill me if I don’t get a hold of it. Isolation. Self-destructive behavior. Extremes of health, fitness, diet, alcohol. The slow leak of pent-up fear does nothing to lessen the nightmares churning within.
Writing helps, although I think it sends the wrong message when I project my fear through the characters I’ve created. I chose this blog to focus on myself and the fear that grips every moment, the fear created by my MS. My fear has held me back and redirected my energy for too long. No longer embracing disenchantment because of my MS, I will focus on strength, growth, power, and health (all mentally and physically) undeterred by my MS. In my words, I will focus on reflecting my current fears and transmitting the fears of my community. I don’t want to absorb any more.
I recognize that it exists — I know what causes it — I know the detrimental effect it has on me — I know what I’m missing out on — I want to break my cycle — I want to fight — I want to win — I will never stop — I will never quit.
Disclaimer: multiple sclerosis differs vastly from patient to patient. No two instances are the same. Symptoms, diagnosis, and treatment are just some factors that lead credence to the saying, “Once you’ve met one MS patient, you’ve met one MS patient.” My experiences described are unique to me, but there is an underlying pattern in the fight each of us faces.
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!
Never Stop… Never Quit…®
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Never Stop… Never Quit… Reg. U.S. Pat. & Tm. Off.