Before you ask the question, this is the edited/shortened version. My heart couldn’t find a way to break this post into several. If you would like portable versions, I have.pdf and .ePub files, located on the foundation’s Google Drive: https://drive.google.com/drive/folders/1ztyLIxptSPmvYn_mH4pSoV2PSRlW9uxV?usp=sharing
I will share the joys, pains, and dirty little secrets of my life with multiple sclerosis. My goal is to find a convincing reason for you to support/share my fight against MS. Please donate today: http://main.nationalmssociety.org/goto/eleanor.
I required more than the 30 Efforts I first intended; less would have created a flimsy portrait of the man who needs your support. 30 days was unrealistic — once discovered, neither accurate words nor the courage to write them, develop quickly enough to support such a timeline. How many efforts will this take, and how much time is required to share them? I don’t know the answer, so I will just continue writing.
This is Effort Number 33…
On January 15th, rock-bottom was a hardwood floor. I laid still after a terrific fall, a victim of my own stupidity.
- I was in a hurry, scrambling around my kitchen wearing nothing but socks on my feet.
- My nonslip mat was a little dirty and needed a run through the washer. It wasn’t on my hardwood floor – it remained in my laundry room instead, clean, for two days…
- I reached under the sink and extended my arm. My feet slid out, and I landed flat on to my exposed rib cage.
[That was stupid.]
Yes. I agree.
My best estimate has me laying immobilized for 12–15 seconds. Nothing hurt yet. I just couldn’t move - could not take a breath. I thought about breathing. Of course I wanted to inhale and exhale (it’s kind of thing I’ve grown to love). There was no consideration at the moment, unfortunately, for what I wanted.
Most people fighting multiple sclerosis are familiar with the sensation of having zero control over your body. Legs, arms, or possibly even your entire respiratory system become muscle groups your brain seems to have lost a connection with. For some, the connection ties back in. Others, the ability is lost. Every time I experienced this phenomenon in the past, I have been fortunate to regain at least partial control over the affected muscle group. Those prior encounters were the only reason fear never sat in. I just laid there and tried to remember what that coordinated movement was like. “How do I breathe?”
Eventually, I remembered.
[Obviously. We’re here, are we?]
Touché.
12 or 15 seconds later, when I remembered how to take a breath, all was right again. For a moment. Until I moved and the pain set then. I turned away from my injured side and curled my legs a bit – easing my agony as I comfortably remained on the cool hardwood floor.
I was not in need of a support network.
I longed to share the comfort of compassion.
***
The floor was quite comfortable. As long as I remained still, nothing hurt. I took advantage of the time, using it as my opportunity for a long-overdue self-assessment. “How did I get here? Where am I going? In simpler terms, what the fuck am I doing with my life?” Given everything I have experienced, my current focus and priorities, and the prognoses I have for my future, they seemed like fair questions.
On paper, my life now is better than it has been in years – possibly better than ever. If you pull back the curtain, however, challenges and obstacles undercut everything and even threatened the outward appearance of happiness. My MS bears the heaviest of loads as the reason my “good” isn’t necessarily so.
[You do realize that’s not necessarily fair to blame MS for everything. There are always going to be problems.]
My mind, my rules.
[Go on.]
On Paper
Health and Fitness: I’m at a higher level of physical fitness now than any point since I was diagnosed with MS 20 years ago. The physical limitations I have are indeed more significant, but my total fitness concept is higher as well. Things I could do when I was young and healthy, in my mind, pale in comparison to the gains I’ve realized as an older man fighting MS. Seven years ago, I began tracking a myriad of data points every single day. I am (mostly) stronger than any point. I am also (mostly) faster. Mostly, I say, because of the obvious affected areas of my body.
Weight: I’m lighter than I have been in over 30 years. All of my life, I have been a built, broad-shouldered, big-boned, bulky, heavyset, overweight, ‘insert whatever description you can think of’ individual. I was always trying to lose weight, to find that healthy/lower weight. As a result of the atrophy on my left side, as well as reduced overall activity, I’ve lost a lot of the muscle tone which made me bulkier in the past. Carrying around extra fat or replacing lost muscle with fat would just make matters worse. Focused physical therapy, stronger workouts, and a healthier diet dropped the weight – pound after pound, year after year. The slow steady pace finally turned into results I was proud to realize.
Diet and Nutrition: Supporting a healthier lifestyle, increased fitness, and improved physique required better eating habits. This focus was another slow pace of changes: portion control, food choices, and healthier overall preparation. My energy has improved; I sleep better at nights; my weight loss quickened; my physical exams and blood work improved significantly across the board. I prefer simple yet creative foods, using a minimal array of natural ingredients. They are fun to make, healthier, cheaper on the budget, and Eleanor loves just about everything we share!
Behind the Curtain
Health and Fitness: Without any harm intended, I’ve had several people tell me, “You are so lucky to have so much time to go to the gym. I wish I was in your position.”
Number 1 — no, you don’t.
Number 2 — I struggle with this reaction myself, being the guy who is getting paid to not work so he can go to the gym all day. I was fortunate to have a friend of mine, a disabled veteran Paralympic athlete, explain her situation this way, “the Army is paying me to be as healthy as I can, so that’s what my job is now. I’ll add one more to that: my former company is paying me long-term disability to focus on my health and fitness, so I no longer have to remain on the disability payments I receive. That, too, is my dream. Every time I stop and think my body may be passed the point of a permanent disability stigma, reminders pop up. Flareups. The resurgence of issues or new complications. When I spend 2–4 hours a day in the gym, I can barely move for 1–2 hours after. When I don’t spend 2–4 hours a day in the gym, I can barely move for 2–4 days. My cycle of physical agony and ecstasy repeats itself several times a day with absolutely no end in sight…
Weight: This issue has been a constant battle for me growing up and throughout my adult years. Admittedly, I was excited by the falling numbers and smaller waist size at first; 255 pounds was a bad number for so many reasons. I smiled as the pounds continued to drop, even though the dramatic change worried more than a few friends and family members. When my weight passed 185, I tried to slow or stop the pace. It took a while to get control, dropping down as low as 172, but I’m happy to say my numbers have been stable (174–180) for almost 2 months. For so many reasons, lighter is definitely better in my situation.
My own perception of the weight I carry in the image I portray has always been dysmorphic. Never in my life have I been content with how I looked (disregarding how I felt). Belly fat, chubby cheeks, thick ass and thighs with how I picture myself. When I look at myself in the mirror now, I cringe at the effects of my MS. The shriveled muscle tone on my left side is no longer masked by a plump layer. I notice every sag, every droop, creating a disproportionate appearance left vs. right. My own destructive body image has not been erased, only replaced. I’ve discovered there are so many ways to improve my fitness, overall health, even overcoming the weight issues I’ve battled for so long. The tragic irony is as I significantly improve how I look and feel, the gaping hole of loss created by my MS becomes much more noticeable.
Diet and Nutrition: I do enjoy the focus I’ve developed on clean eating. Without taking myself to an extreme, my diet is mainly non/limited-processed foods prepared in a simple fashion.
[What about your frozen pizza and movie night with Eleanor?]
Everything in moderation.
[…and your Diet Coke every day?]
I have cut way back, but I still need my fix.
[…and beer?]
Everything in moderation, to include moderation. Can I move on now?
[OK]
I spoke with my doctor back in October, around the time I realized the need to control my weight loss. The bottom line was my food intake wasn’t high enough. My belly feeling full was no longer a gauge. Factors including healthier food selections (generally less calorie dense), the increased intensity of my workout schedule (burning a lot of calories every day), and the unfortunate side effects of some MS medications (difficulty processing some foods) all forced me to make some dramatic changes.
- Eating 5, 6, sometimes 7 times a day.
- Pre-packing and measuring absolutely everything to ensure I am getting enough calories, but also sufficient portions of my macro- and micro-nutrients (even with all this, I still battle the constant fear of eating too much).
I’m new to this game, so there’s been quite a bit of a learning curve. Even though I’m getting better at more efficient ways to manage the routine, the downsides remain.
[An extreme obsession with your food planning, preparation, measuring, and tracking?]
Another area for me to toil over.
[The uncomfortable feeling of always having an overstuffed stomach?]
3500–4000 cal a day, every day, is not enjoyable.
[So much food, plus constipation issues your medication creates?]
Yeah. Let’s leave it at that. They get the point.
[Bloated and gassy all day?]
Drop it.
[Is this really what you thought about doing your hiatus on the hardwood floor?]
Part of it. I had a lot of time to think.
In total, I probably laid on the floor for about 35 minutes. I was relatively confident nothing was broken. I didn’t notice any blood. The few times I tried to move caused a searing pain of my side, so sharp I could not garnish the resilience needed to pull myself up. Had someone else been there, I probably would have just shared my thoughts aloud.
I was not in need of assistance, nor did I want someone to solve my problems.
Sometimes, I just want to listen to someone else’s thoughts and opinions.
***
So, my Inside Voice is probably dying to ask, “What does this all have to do with you falling in love on January 19th?”
[Not in those exact words, but pretty much.]
I thought about all my gains, improvements, and challenges in my physical health. I recognized everything I was capable of doing, levels of performance that seemed permanently lost less than a year ago. The insane volume of data points I collect every day tell me two stories.
They validate my commitment to the critical areas affecting my body’s ability to resist and fight back against the unyielding onslaught of my MS. I need to do all of this… I need to do more… I need to do everything better if I’m going to give my body a chance.
They also document the lonely, obsessive, mundane life I have chosen for myself. If I do all of this… If I do more… If I do everything I need, then for what am I giving my body a chance?
The ultimate answer must remain ‘for myself’ whenever the question arises. I cannot hide behind the argument, “I need to make any sacrifice I must for Eleanor’s sake.”
Her welfare, her love, and her safety are invaluable. Back in 2017, during some dark physical and emotional times, I tried to use this logic when considering my next steps. Abruptly cut off and corrected, I still hold my brother’s words to heart. “The most important thing is you. You can’t do anything for Ellie if you’re not there. You useless if you don’t take care of yourself.”
[“In case of an emergency, put on your own oxygen mask before attempting to help anyone else.”]
Exactly.
I prioritize myself. When Eleanor is not with me, when she’s with her mom or the moment I dropped her off for school, my priorities have been the health, fitness, diet, and nutrition needed to strengthen my body.
But what about when we are together? How do my loyalties shift?
I prioritize myself. I express my selfishness by doing the only thing I desire: bringing My Little Love into every aspect of my life. I change my schedule — we enjoy the activities Eleanor likes and are developmentally beneficial for her, even if they are activities I personally have no interest in. I changed my diet — although I still strive for healthy options, the menu shifts towards meals my daughter enjoys. I’ve turned her opinion on some, creating healthy meals we now both enjoy. She’s turned me on others, such as our Mexican restaurant dinners or frozen pepperoni pizza and movie night (I hope no one from the East Coast judges me too harshly). If there’s an impasse between our choices, I will prepare two separate meals.
[Because it is what is best for Eleanor?]
Yes.
[So, you sacrifice for the benefit of your daughter?]
There is absolutely no sacrifice.
[Because it is what you want, and that is your priority?]
Exactly.
As I laid on the floor, I thought about Eleanor. There were no thoughts of, “What is she going to do if I can’t be there for her?” She will be fine. Her mother, family, friends, teachers, and mentors are doing a wonderful job helping to raise her. Although a big piece, I’m still just a piece of her growth. I will love her — I will help develop her — I will be part of her life. When the day comes I am no longer there for her, everything I leave behind will continue contributing to the wonderful life she has created for herself.
I will not leave behind thoughts of how I needed Eleanor to be there as an aide. That is not what I want; I have resources in place to care for me.
I was safe and comfortable on the hardwood floor.
[Safe? Comfortable?]
I was. I just spent my time thinking about Eleanor because… frankly, because the only things suddenly going through my mind were safe and comfortable thoughts. Her life is at the top of that list.
I was not in need of a caretaker, nor did I need someone to provide my own care.
Sometimes I just want someone beyond the basic tenets of safety and development.
***
Before you ask the question, no, I did not fall in love with Eleanor on January 19th.
[I wasn’t going to is that.]
Yes, you were.
[Yes, I was. I then realized you have been in love with your daughter since August 20, 2009.]
Yep — the day we found out she was on the way.
[So, what’s the point of this blog?]
I’m getting there.
[Please hurry.]
K
I’ve talked in the past about the constant noises in my head – thoughts and analyses of my life, viewed in its entirety. At some point during my ‘rest’ in the kitchen, I thought about the future. “As soon as I try to move, this is probably going to hurt like hell.” My future wasn’t looking so great anymore.
I faced a grim future. Pain. Suffering. Uncertainty…
Struck by the bluntness of my revelation, I listened closely to my constant noise. Everything about the moment felt unfamiliar — I’ve used each of those words countless times in the past, so why was I having so much trouble placing them in the context of my predicament at the time?
Grim should not equal Future
…at least not in my world.
There is a clear delineation defining me, a boundary between light and dark. In my story “Chaos” from The Ramblings of a Condemned Man, I explained my past this way:
“My life is and always has been rife with chaos.
…
My mind finds it challenging to see beyond chaos, many times to the detriment of the peace and beauty around me. Looking back on my life, the images that most readily come to mind are indeed the chaotic, the horrific, and the burdensome. Many great recollections are there, they just play second fiddle to the demons.”
I can’t offer any explanation; it’s just the way my brain works. The memories I recall most clearly and dwell upon far too often are usually macabre – the past is grim. Even my happy moments are tainted with inevitable dark clouds. Pure joy never existed. Unqualified happiness seems to be something my brain is incapable of recognizing, my heart is unwilling to feel.
The future has always been a place where my happiness resides.
“I cannot wait until xxxxx happens.”
“When xxxxx finally arrives, so many things are going to get better.”
[I can see where this is going.]
I’m sure you can.
One of two things will inevitably happen. The day after xxxxx never arrives, I’m filled with another grim reminder haunting my past. The day after xxxxx finally does arrive, I am let down by the fact that every problem, every worry, every concern didn’t magically fade away.
Before my fall, my view of the world was one of a shadowed past holding out for an opportunistic future. The barrier between them – the present – was where I lived, many times in the most unhealthy of manners.
[You didn’t embrace the past or cherish the good in people and moments. Instead, you separated yourself from the pain you’ve unfairly held onto.]
Correct.
[You did not apply yourself fairly, allocating your time and energy effectively towards realistic tangible goals. How does the saying go? “Pray for the best, expect the worst, be prepared for both.”]
Again, correct.
[I think you're a little hard on yourself.]
It was not my mindset 100% of the time. More often than not, however, this kind of thinking either set me up for failure or created rifts I grew to regret. Those mistakes in the ‘present’ only further aggravated the vicious cycle of my self-fulfilling prophecy.
[So, what does this have to do with falling in love on January 19, 2020?]
I’m getting there.
[Better yet, what does this have to do with multiple sclerosis? This is an MS blog, you know?]
I’m getting there. Just play along.
[OK, fine. I will play along. So, what changed?]
I moved.
Rolling over onto my good side, I braced with my knees and slowly peeled myself from the floor. As expected, everything indeed hurt like hell. I was so relieved that I took the time and cautious efforts instead of rushing to pop right up. The pain would have been far worse had I not thought through my steps. To keep this short, I’ll fast-forward through some of the highlights (yes – I do get the irony). Nothing was broken. My doctor and I agreed there was no need for an x-ray, so only time would tell if my ribs were badly bruised or if there was a hairline fracture: 3 – 4 weeks versus 7 – 8 weeks healing. They’re only bruised.
I stood up and gave myself a good pat down, triple-checking there wasn’t more damage than the obvious pain. With an ear-to-ear grin, I laughed at myself and mocked my carelessness. I walked over to the bathroom and removed my clothing, inspecting every inch of my body for signs of blood or any other injury I could not feel because of numbness (this is a trick I was forced to learn some time ago). Bruising was already noticeable along my entire left side. Staring at myself in the mirror, I summarized everything with a glorious, “You’re a fucking idiot,” as I redressed. Slowly shuffling over to the laundry room, I grabbed my nonslip mat and headed back into the kitchen.
When I flipped the mat onto the floor and surveyed the scene, fear set in as I thought about the possible outcomes I managed to avoid. My head whizzed by the granite countertop, missing by inches. My side landed right on top of the kitchen knife I was carrying, which fortunately fell flat. I thought about lying on the floor, injured and bleeding, alone. How much of this accident was caused by my body’s inability to function properly, to move/act/react in ways normal people do millions of times a day? With my current disabilities and limitations, what would I have done in the case of serious injury?
I don’t want someone to aid me through this one trek.
I want someone to join me on a thousand journeys.
***
I compartmentalized all my issues, chalking the Wednesday incident up as careless and hasty stupidity. Dealing with a little bit of extra pain for a couple of days seemed like a reasonable penalty. As long as I did not backtrack, I would humbly accept slower–than–normal progress. The proper classification of my thought process may be debatable (Arrogant, Ignorant, Unhealthy Compulsive, or Misguided) but words like Determined and Resilient were quickly disqualified.
In my mind, Thursday was a success. Accomplishing everything I set out to do, with only slight modifications in the gym, my MS tracking notes for the 16th were rendered as, “Bruised rib, but on the mend.”
I went to bed sore but content.
I woke up back on the hardwood floor.
DOMS
A day and a half was apparently enough time for Delayed Onset Muscle Soreness to kick in like a firestorm. It’s not an old wives’ tale, it is science. Combined with muscular mechanical hyperalgesia, it was the catalyst to finally send me to the doctor. She taught me those fancy medical terms I just throw out! My body was in full repair mode, as demonstrated by the pain, inflammation, and blood pooling. There wasn’t much I could do for the next couple of days — straining for the simplest of tasks stabbed me with sharp pains. When I moved, pain. If I chewed and swallowed, pain. There was that one unfortunate time I had to sneeze…
I spent most of that Friday and Saturday just trying to make it to the other side. Full healing would take time, but it was going to happen in this case. I thought about the next time. I thought about all the progress I had made with my nutrition and fitness efforts, so many gains yet so far to go. My thoughts raced back countless times to how much this would set me back. If I focus all of my time and energy towards repairing my body and I am no better off, or worse, what have I done with my life?
I went to bed on the night of the 18th with one thought in my mind: “I don’t want to live like this.”
[That’s a scary reaction to have.]
Not really. I no longer wanted to live in the pattern I had built for myself. I went to bed on the 18th, pawning over what I did not want to do. I woke up on the 19 and began to discover what I did want.
[And that’s when you fell in love?]
Precisely.
[So, you fell in love with your life, with yourself, and with your future?]
No. A long time has passed since I was not in love with my life. Myself today, and my future tomorrow, are prized possessions I love dearly.
[So, you fell in love with Eleanor and made the decision to adjust your life for her benefit?]
No. I have always been in love with my daughter.
[I’m so confused.]
Everyone reading this is, my friend. Just think about how the poor bastard writing feels.
***
My intent that Sunday morning was not to correct all the misgivings of the miserable existence. Regardless of how my words come out, I kind of like myself. I did not want to find the “solution” that will reset my life. There is no solution –because there is nothing wrong with my life.
With some painful effort, I pull myself out of bed and stood in front of the mirror. Truly observing myself for the first time in quite a while, I noticed the glaring disparity my MS has created across my body. Well toned muscles mirrored by weakened limbs. Sharp, chiseled features that gave way to empty voids where muscle has just stopped growing. I thought about my upcoming appointments, MRIs, physical evaluations, all set to determine the long-term severity of new issues developing – in my leg, in my shoulder, in my hand. These issues were glaringly obvious, yet I saw nothing wrong. I just shifted my focus on how I can best document my beautiful story.
For quite some time, there just hasn’t been room in my life to consider more than the habitual activities into which I had settled. Reassessing my priorities as they stood, and doing away with ineffective and harmful habits, was long overdue. A spring cleaning was at hand.
Out with the old. It’s quite difficult to purge and revise routines built around multiple sclerosis. Every habit I have, absolutely everything I do in regards to my MS, came to be because it worked. At some point in the last 20 years, it was the way I improved, compensated, adjusted my life — or perhaps it was the way I avoided or mitigated some issues. Just because it worked 20 years ago –hell, just because it worked 20 minutes ago – does not mean it will work now. Some changes will be minor, others significant. This is ongoing.
If it makes you happy. Not every indulgence is bad; not every break from a positive routine is wasted time. “Everything in moderation, to include moderation.” Nutrition goals should not stand in the way of my favorite beer, some yummy General Tso’s chicken, or pulling over to grab ice cream with Eleanor because “We haven’t been there in a while.” It also means not stuffing more food in my face to meet my daily calorie count when I’m just not hungry anymore. Take an unscheduled break from the gym, just because. If I’m supposed to work on cycling today but the cross-trainer is calling my name, adjust. Take a detour – stop and smell the roses – just returned to the course intended at some point.
Love. I once again remembered it is possible to love and to be in love more than once in more than one way. My daughter, family, and friends; my fight; myself; that special connection. Two of these have been my obsession, often to the detriment of the other four.
Everything I’ve talked about so far has been a subset of the all-consuming, obsessive focus on my fight.
[Which fight?]
Let’s call it the struggle with my demons. My MS is just one of them, joining with others in an intertwined assortment of circumstance and issues – all contributing to, aggravated by, and causing disruption in the others. Unable to target the lead demon, or possibly unwilling to assign blame inward, the focus of my collective fight is against the devastating effects of my multiple sclerosis.
[When will you let it go?]
When I win outright.
[You do realize that’s never going to happen? You’re never going to rid yourself of all the damage your MS has done.]
I know. The cure is out there…somewhere waiting to be discovered, or someone is going to create it. The benefits of those incremental advancements are something I continue to reap. I will never personally experience the 100% rapture of a world free of MS, but some generation will. How close will I reach that goal? I don’t know. The only way for me to ensure I get absolutely as far as I am capable of is by my continued drive towards the furthest objective possible.
[Never Stop… Never Quit…]
Exactly.
[What about that special connection?]
That’s obsession number two.
Love, as that special connection, is a word I have shared six times in my life. Each was contained in very different circumstances. Five were sincere; twice, I had no idea what the word meant; four were not thought out, but instead an impulsive reaction; all of them faded except for one, which I’ve held onto. Before you ask, please don’t guess. You will just frustrate yourself with a volley of comically incorrect questions and answers.
[Got it.]
The love I held onto was my hope that reigniting the past was my consolation for a fight I will never win. It served as a placeholder for a while, just in case we changed our minds, and as a way to prevent those demons from overwhelming my whole again.
It was not until I disconnected my ‘never stop’ mentality from the expectation that anything less than rapture meant failure was I able to find love exists in my heart purely for the intent it represented. Accepting that love was not meant to be doesn’t close off the space created.
Releasing the constraints of uncertainty on my capacity to love resulted in unexpected changes. Love for family, friends, even for my darling Eleanor, grew as I viewed each in a different light. I’m not quite sure if my loves for those special connections have returned as friends or some new understanding; the one love I held onto will never fade, but I’m no longer concerned that they must in order for us to move forward.
The love for my fight is stronger than ever. My discovery was finally taking a step back, focusing outside that set path I thought my life was on, and stopping to smell the roses (taste the ice cream, take the picture, sing the song, write the story, go back to school, everything in moderation – to include moderation).
My brother’s reminder that the most important thing is indeed me was a keepsake I very much needed. “I don’t want to live like this,” was the catalyst to see a world beyond demons and placeholders. The door is wide open; there are no longer any boundaries or constraints.
And knows, my friends, are the tenets I will hold dear as everything changes in the familiar settings of Never Stop… Never Quit…
[And?]
An, what?
[In you were supposed to tell us about falling in love on January 19?]
Oh, that.
[Yeah, that!]
That’s a whole different story. It kind of drags on…
…
[…]
…
[WTF?]
Life. Let’s just call it life — I have fallen in love with every concept. Living, learning, growing, sharing, exploring, tasting, failing, falling, rising, starting, restarting, remembering, discovering, experimenting, building up, knocking down, resuming, giving, receiving, yearning, desiring, longing, urging, welcoming, forgiving…
[You’re right. It does drag on.]
There’s more.
[Save it for later.]
Save it for later — that’s the one thing I’ll never do again.
I hope these stories will inspire you to join my fight in 2020.
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…®
Kevin Byrne
Portland, OR
Never Stop… Never Quit… Reg. U.S. Pat. & Tm. Off.
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