Everything Is Completely F^#$’d Up

 

It’s not getting better, and it never will.

No other picture could capture my mood like this one. Welcome back to the emergency room, Kevin!

Countless times in the past, I came to that realization before dismissing my naysayer attitude. The devil on my shoulder, a persistent Beelzebub of Pessimism, tormented my thoughts every time I shared stories of small victories with my readers. After stumbling through the proverbial muck and mud created by the downpour of multiple sclerosis, navigating the countless obstacles encountered on my incessant climb up this avalanche-plagued gravestone, I rejoiced in my discoveries that led to conquering “it.”

Fools and dreamers are crushed under the heaviness of setbacks while still trying to react with an idiotic resiliency that fortifies their commitment and sharpens their efforts. It’s a sickening cycle we face again and again, over and over, until one of three things happens. They quit and move on–leaving one part of their life a failure. They fight countless setbacks with a barrage of recalibrated bursts until they die–that part of their legacy forever a failure. They win.

I am not going to win.

I am not going to quit.

Nature has not gifted me an option, but rather one unavoidable consequence for the life I squandered until October 6, 1999, the day I sat in the commander’s seat of a US Army Humvee, on my way back to Camp Eagle (H-401), and read those damning words: 다발성 경화증 가능성.

Words.

Regardless of the context, irrespective of the translation, no matter whose mouth they originate from, “You Have MS” is a gut punch to which there is no retaliation. My best attempt has been to personalize multiple sclerosis through words. I tried thousands of times. Describing the distortion of my body, I gave it shape and form because if it exists, it can become a target. Chronicling the 25 years of pain and anguish it has inflicted on my body, I shared its incessant damage because, if it causes suffering, others will despise it. Sharing the ongoing research and medical breakthroughs, I painted possibilities of a world free of MS because if we paint progress, the desire to reinforce the effort upticks.

But then, July turned to August. Emails and social media posts began to flood my senses with a simple, irritatingly Pavlovian message: Bike MS Is Coming! My mouth ran dry, in direct contrast to the classical condition response I clung to for the past 20 years.

“Fuck,” I said.

In an empty house, I finally broke down and let ’em have it. I directed my conversation at no one…nothing…everything…something. My focus neither stared at anything nor scanned for something. Like the cliché of a stereotypical nut-job, I roamed my house in search of a mark to spew my venom.

“I can’t do this anymore. My pain and anguish are well documented. Mounting levels are nothing more than another layer of the same shit. I’ve given up on the repetitive rise and crash of my hopes for the next breakthrough I will never see. Even if I’m not tired of saying it, who the hell wants to hear another season of my pissing and moaning? I don’t.”

Just like that, I was done.

After a quarter-century of living with MS, my breaking point was the thought of once again struggling to piece together a collapsed house of cards, then branding my re-cleansed work: Bigger–Better–Stronger–Faster. Not this year. The only version I can present in 2024 is smaller, weaker, and slower. All that remains is a chance to be better. Wholesome images of making life even a smidgen better parallel childlike fantasies of making it all better. But better for whom? Give up, Kevin. Just stop saying better.

At bike MS 2023, I spoke with the riders and supporters gathered Saturday night. Triumphs and celebrations fell to the wayside when the Prince of Darkness whispered from my shoulder and convinced me to admit, “I will never see a world free of MS. I will never see that. If MS is cured tomorrow, the damage that it has done to me is unrecoverable. The memories it has burned into my brain will never go away.”

Translation: I’m fucked.

I turned to my daughter and let everyone in on the dirty little secret they already knew. “Rogue was born into this. She didn’t earn it, nor did she ask for it. But she will never see a world free of MS because of the memories of her dad….” You get the idea. You can watch the video, but here’s the translation: She’s fucked, as well.

Actually, please watch this short, 1:45-minute clip from that speech (https://www.youtube.com/watch?v=aZoHsIKFKWg).

Long after we find a cure for MS, when the carnival atmosphere is no longer necessary because the world has shifted its attention to a new motif, a child will be born. Maybe they will ask Rogue to tell them a story; perhaps she will need to share her memories of “back in the day.” The story will be about me, and I hope the memory will portray my time in a cheerful light. Something will spark the need for discussion about my disabilities.

“What was the matter with him?” they might ask.

“Oh, my daddy struggled with multiple sclerosis for a long, long time.” Furled brows will betray the little one’s confusion before they struggle with a question.

“What’s multiple skirsis?”

Rendered speechless by the child’s curiosity, Rogue will need a moment before her next heartbeat and gasp of air. A blink will be needed to ward off that single tear forming in her eye. Back behind the cobwebs of near-forgotten memories, she will dig up the day I first predicted her peering into that child’s eyes and thinking That’s what a world free of MS looks like. Damn!

I will do anything in my power for my daughter if those efforts contribute to a positive, nurturing world for her. She has already earned her moment, yet will continue to pay installments of sacrifice and sorrow. After dumping words from my brain, I don’t know what direction my stories will take or their final message. “This is why we need to do more” is the theme I aim to project. Beyond that simple tenet, I can’t promise any discernible pattern this year.

I despise everything I will do over the next few months. When you read descriptions of my deteriorating physical condition, please understand my anger. Multiple sclerosis is forcing me to describe every painful slice it has carved from my body, pulling the imagery from me even as it continues the devastation. A constant revisit to my darkest moments is the price I must pay to give Rogue that flash of enlightenment one day, far in the future.

This is why we need to do more.

I don’t want your sympathy.

I do need your support.

Please visit https://NeverStopNeverQuit.com/donate/ and make a contribution today. One hundred percent of the money you give will go to the National MS Society in support of our bike MS 2024 campaign.

This is why I fight.

Just like that, I’m not done anymore.

Fuck.