The People's Voice: Fifteen years later, man keeps outworking MS

Lamont Johnson is surrounded by shrieking children, oblivious to his therapeutic session at the Sterling-Rock Falls YMCA pool.

The 42-year-old Franklin Grove man crosses the width of the pool, springing off one leg onto the other, each time looking down. He needs to make sure he is, in fact, standing on a foot. After all, he’s got only about 70 percent of the feeling in his feet. Often less.

So, he looks down, then springs again, and again, until he reaches the side. For his next muscle set-isolating exercise, he springs with both legs at once, back and forth.

His face can’t hide the pain, the frustration. He snaps his head to the side violently, like a colt trying to shake off an incessant fly. He gnashes his teeth and persists, shaking his head once he reaches the side.

A few varied sets later, he gives a thumbs up. Not to me, or anyone. No one here knows him. He’s encouraging himself.

After a set of lateral shuffles, he gives a double-fist-pump. Then he goes back and again goes through the sets he wasn’t happy with. Then, he works his arms for about 5 minutes.

Related: Longtime confidant delivers for MS sufferer where others bailed

Then he’ll hit the hot tub to try to work out the spasms.

“You want to take away the pain without having to pop pills,” he says.

Welcome to Tuesday. It’s a lot like Monday. And the weekend. And ... you get the picture.

It bears repeating: No one here knows him, or what he’s going through.

Most often, that’s exactly how “El Jai” likes it.

Change hurts

Since being diagnosed with multiple sclerosis on Feb. 29, 2000, El Jai, as he was known during his modeling days, has learned a lot.

He learned his therapeutic process from a personal trainer in the Quad Cities when he lived out there. But on a grander scale, he’s learned to wield the double-edged sword that is his can’t-hold-me-down attitude.

A good-looking cat who could act and sing, was proud and athletic, he compartmentalized his pain. He kept playing flag football, his team good enough to vie for a national championship. He kept working 60-plus hours a week.

He poked at the proverbial bear that is MS. And it wore him down. It still does, but I shudder to think how bad it was while he was living in denial.

“The fatigue is the worst part about the disease,” Johnson said. “It was stopping me from being able to work the hours and plan the days. I’d fight against it, instead of respecting the disease and making the adjustments. I just said, ‘I’m just going to keep doing what I’m doing.’”

The fatigue stems from the body being so preoccupied fighting the virus-like MS, trying to stop its constriction on the nervous system, that it doesn’t have juice left for regular activity.

It’s also rendered his left arm and left leg unreliable, at best.

“I deal with pain every day,” Johnson said. “Imagine for a moment your hands falling asleep. Add to that a cramp and how that feels. Then, actually add in the feeling of needles going into it.”

And his eyesight stinks. The day of his diagnosis was triggered by his being unable to see out of his left eye. How’s that for scary?

Three months after that diagnosis, he woke up and couldn’t feel his legs below the knees. He spent a month in the hospital regaining the ability to walk. He still doesn’t have full feeling in his legs. More specifically, his feet are problematic.

“That started it. I still was dumb after that with some things,” Johnson said. “But it was a slap in the face to say: ‘Look, man. You’re going to have to change something. Address it and make adjustments.’”

He continues to run his business, Victorian Talent, from his home, but on a much more reined-in level. And he helps a family friend with IT work in Franklin Grove.

Studying up

Some of those whom Johnson was willing to confide in hit the books, the Internet, any helpful resource, hard.

Nancy Ackerson didn’t find out her son was in such hell until he was hospitalized. She lives in Vaughn, Montana, so there was no way to see him. Rather than berate him for hiding his ailment, she did research. A lot of it. And she armed Johnson with the knowledge and support to fight hard, and smart.

Same goes for Martha Cecilia Jimenez-Suarez, Johnson’s fiancée, an accountant he met at a seminar in Chicago and to whom he says he’s “grown closer through MS.” She made bullet-point lists of questions; they compared notes and learned together. A resident of Bogota, Colombia, her work visa expired, sending her from Texas back home.

“It’s a very long-distance relationship, but I can’t describe to you how well it works,” Johnson said.

Three cheers for Facetime and Skype. They plan to marry, and to move somewhere south. Johnson says northern Illinois isn’t a bad place to live with MS, in terms of health care – it’s light years ahead of southern Illinois – but the cold is murder on his joints. And, yeah, no Colombia native would live in the Midwest, given a choice.

Johnson thanks God every day for Martha’s support, her understanding.

“The thing she gets most is, if I have MS, you have MS. You’ve got to understand that,” he said. “When I have problems using the bathroom, you’re going to have to help me with that. If I have problems walking, you’re going to have to help me with that. These are scary things. Gross, some of them. When I have problems with blood pressure, fatigue, you’re going to have to help me with that.”

There’s one thing the two loves of Johnson’s life agree on: There’s nothing more infuriating than “But you don’t look sick” comments.

“It makes me so angry,” his mother said. “They don’t have his body. They don’t know about the fatigue. The spasms. All the things that come along with the disease.”

“A flu could kill me,” Johnson said.

“It’s just insulting, almost,” Ackerson said. “Nobody would fake having that disease.”

Meanwhile, despite battling pain and darkness, her son is happy. He’s battling. About 5 days a month, his MS is so bad he essentially has to be ready for all scheduled plans to go by the wayside. He’s fought and conquered suicidal thoughts.

“He comes back and says, ‘I’m not going to let this get me,’ and it’s hard to describe to someone else what it’s like when your child …” she says, fighting back tears, apologizing and continuing. “He’s shown that he’s got the courage to fight something that could kill him.”

Revealing, and concealing

Most folks Johnson has confided in have pushed him away. Lifelong friends have treated him like a liar, abusing his right to bail on plans. Women have dropped young love like it was fleeting all along.

So, it should come as little surprise that Johnson predominantly keeps to himself, at least when it comes to MS.

He still takes day trips back to the Quad Cities, where used to live, to see friends and to play poker.

You heard me. The man not only loves poker, he’s good at it, to the point it’s become supplementary income.

“I subscribe very much to being versatile,” he says, a huge smile spreading over his face.

But it’s also a networking resource. He might find a client. Or just someone who needs a little help getting headshots out there.

“Sometimes, I do it just to keep up with the Joneses, so to speak,” Johnson said, “but in my heart, I just love to help people.”

Best-laid plans

Johnson tells me that he’s budgeted 7 hours of his day for our interview. Not because he actually envisioned me spending a quarter of a day drilling him, following him around, detailing his every flinch. No, he schedules like that because he’s learned to make no assumptions about his health.

This comes back to the double-edged sword. Johnson used to break plans, arrive late, no-show, and as any driven person would tell you, no one ended up feeling more miserable than he did when he couldn’t deliver.

He taught himself that you need a routine, not a regimen. If he wakes up in agony, he’ll have to wait to administer his shot, to take his medication, until the evening, which is of no consequence.

He’s laid out his apartment in an MS-friendly configuration. The first day we met at the Y, he humbly told me he’d broken his phone in a fall, when his left leg suddenly lost feeling, sending him crashing to the ground.

He’s taken his experiences, bits and pieces of the doctors’ advice, his own self-discovery, and built a plan. After all, he was told that, by 2002, he’d no longer be able to walk. Thirteen years later ...

“I tie it all together,” Johnson said. “When you’re finally done with denial, when you finally accept it, you take bits and pieces of it. Bits and pieces of what doctors are saying – you don’t always want to believe everything they say and everything you think your future might be, because you can talk yourself into some bleakness – and you make what I call your own MS business plan.”

Proving it to himself

Eighteen steps lead up to Johnson’s apartment. His mother hates it.

“I get pretty upset with him sometimes, and I know he drives when he shouldn’t,” Ackerson said. One of the first things to go when an MS sufferer gets a fever is eyesight. Johnson has little vision in his left eye. “Just things like that. We go around and around sometimes.”

But he builds in such challenges, to remind himself what he’s capable of. There are two bikes in his apartment, and he gets out for a ride as often as he can. He hits the Y most days. He pushes himself. Is it any wonder why that wheelchair for which he was fit never ... well ... fit?

Think about all the times we take the road most traveled. Mail it in. Cut a corner. Here’s a guy who wants to run the race, so how do we dare stand on the sideline?

His darkest days vs. today

I’m glad I met Johnson when I did. I love telling happy stories. It’s a struggle to lift the spirits of those who’ve hit rock bottom. For Johnson, that was 2006 and 2007.

He’d lost his job with SBC in the Quad Cities, and he’d lost his insurance. He struggled to get approval for his meds. He let his Y membership lapse.

Down, down into darkness.

“I had to make a decision where I was going to go,” Johnson said. “I was ‘Shawshank Redemption’: I was going to get busy living, or I was going to say, ‘That’s enough,’ and die. It definitely ran through my head to end my life. I didn’t want to live anymore.”

His mother was dealing with a divorce, yet there she was on the front lines, offering her son all the support she could from so far away. His uncle, William Schauer. His kid brother, Maceo, who lives in Great Falls, Montana, where he helps care for their moms. Best friend Sam Forrest. Casey’s employee Cam Riley. Poker buddies. His support system pulled him out.

"There's no way you could name everyone who's helped me in your article," Johnson said, "and I just want to say thank you to my brother Mace for taking care of not just me, but our mother. And to friends, family, and everyone who's stood by me."

And, in time, the YMCA gave him a therapeutic session, where he worked every day on getting better. It’s sheer inspiration to watch him go through his routine. But Y personnel went the extra mile at times, helping him bring down fevers – which can rob MS sufferers of eyesight – when he would arrive in agony.

And when he walked up to YMCA CEO Andy Thornton and me, he was a man on a mission. He wanted us to know how crucial human interaction at the Y had been for him.

He told us about prognoses. About the wheelchair. About his reaction. And how he kept working, kept walking, despite the outlook.

“I think that he’s changed since he was diagnosed with MS,” Ackerson said. “A lot of his motivation comes from that. He wasn’t going to let the disease stop him or get him down.”

The doctors have been startled. Not Johnson.

“They said they can’t tell how I’m walking,” Johnson said. “They told me I have lesions in my brain and on my spine, where I should be experiencing greater issue than I am. And I told them, ‘That’s because I’m gonna make you wrong.’”

What it MS?

Its cause unknown, multiple sclerosis is a difficult disease to diagnose. It affects the central nervous system, disrupting flow of information within the brain, and between the brain and body. Go to nationalmssociety.org for more information.