Brace yourself. This is not the Steve McMichael you’re used to seeing, this gaunt 63-year-old man propped up on an elevated chair in the corner of his kitchen and struggling with basic movement. It just doesn’t compute.
This isn’t the McMichael whom Chicago has known over the last 40 years as a Chicago Bears great, a rollicking presence wherever he goes, an entertainer who fills whatever room he’s in with his imposing stature, booming voice and larger-than-life personality.
Now McMichael, with his shoulders drooped and hair mussed, is craning his neck just so family friend Laurie Dimakos can spritz his face with water to refresh him. He slumps forward to wrap his lips around the long straw extending from his coffee mug.
This is no longer Steve McMichael, football warrior, a five-time NFL All-Pro who from 1981-93 played 191 regular-season games for the Bears and a dozen more in the playoffs, all in a row. Now he can barely trudge across the room to show off his new high-tech wheelchair, an advanced-hybrid model with both a “sip and puff” straw and head controls for steering.
This isn’t how anyone would ever have pictured McMichael, one of the beloved leaders and most colorful characters of the 1985 Bears, the only team in franchise history to win a Super Bowl. But here he is now in a vicious and unwinnable brawl against amyotrophic lateral sclerosis (ALS), often known as Lou Gehrig’s disease, the progressive nervous system disease that is disrupting his brain’s ability to communicate with his muscles.
A little more than three months after being formally diagnosed, McMichael has chosen to reveal his condition. He has lost in the ballpark of 50-60 pounds, now down near 200 and lighter than he was when he graduated from Freer High School in Texas in 1976.
His wife of 23 years, Misty, needs to feed him, help him use the bathroom and give him sponge baths.
He no longer can raise his arms or hold anything in his hands.
Full-time confinement in that wheelchair likely is just around the corner.
“I promise you,” McMichael says, “this epitaph that I’m going to have on me now? This ain’t ever how I envisioned this was going to end.”
Among the reasons McMichael has chosen to offer a glimpse into his very intense battle with ALS: He wants the outside world to know the curtain has lowered on his time in the public eye.
There will be no more public appearances; no more performances with his band, “The Chicago Six”; no more on-air analysis of the Bears on ESPN-1000.
He never will sign another autograph. He has given his last show.
“I want everybody to realize why they’re no longer going to see me around,” McMichael says.
At some point, the disease is expected to further obstruct his breathing and could eventually steal his speech as well. Fathom that. Steve “Mongo” McMichael perhaps unable to talk one day?
“I’m pretty sure that’s the last thing that’s going to go,” Misty jokes. “Just to spite me.”
Unsurprisingly, the McMichaels still have their sense of humor. They’re also summoning incredible toughness and resolve to face each day as its own challenge. But taking on this disease is only going to get more difficult.
“I thought I was ready for anything,” McMichael says. “But man. This will sneak up on you like a cheap-shotting Green Bay Packer.”
‘This is a humbling thing, brother’
Last week, McMichael’s legs gave out in his bathroom. He took a spill and cracked a rib. Misty couldn’t pull him up off the floor and had to summon a neighbor for help.
Damn, this deterioration has been rapid.
Last autumn, when chronic tingling in McMichael’s arms continued to worsen, his concern elevated. Misty also noticed he was holding his silverware in an unconventional manner. “Started coming into a caveman grip,” she says.
For a long time, McMichael figured he was dealing with some sort of neck or spine issue stemming from his lengthy football career and subsequent five-year stint as a professional wrestler. But a September visit to a neurosurgeon at the Mayo Clinic in Minnesota presented the first suggestion that he might be dealing with ALS.
A doctor there raised McMichael’s right arm and asked him to stop it from falling. The idea was to measure, on a scale of 1-10, how high McMichael could gain full control. Instead, his arm plummeted like an anvil.
“Doctor looked at the nurse (and said) ‘Zero!’ ” McMichael says. “That’s when he said, ‘I think this is about something else.’ “
McMichael didn’t want to believe it. He sought multiple other opinions. On Jan. 7, doctors at Rush University Medical Center repeated the ALS diagnosis. That’s when it became official.
A neurologist at UIC Medical Center later surmised that the condition likely began setting in 36 months earlier.
No matter how much denial McMichael and his wife were in, eventually they had no choice but to face their reality. McMichael still can’t fully believe this is where fate has led him.
“What I used to be is the antithesis of what I am now,” he says. “This is a humbling thing, brother.”
The recent progression of degeneration through McMichael’s limbs has been jarring. First his right arm went dead, then the left.
Then his left leg began to weaken significantly. Now his right leg is following close behind.
“They call it Lou Gehrig’s disease. But I didn’t know that was a metaphor,” McMichael says. “Because it’s going to run the bases on you.”
McMichael still has some strength in his right leg, but that’s decreasing gradually too. The ALS is heading for home.
“It’s running the bases on me,” he says.
“And it’s running them quicker than we thought it would,” Misty says.
That leg weakness has been staggering.
“I know what it feels like to go in the weight room and do a set of three with 725 pounds on the squat rack,” McMichael says. “Now? When I get up and try to move? It feels like I’m doing 1,000 (bleeping) pounds. And it’s just exhausting straining that hard. That’s what my world is now.”
As McMichael ambles across his kitchen, almost toddler-like with his wobbly gait, he finds an opening for self deprecation.
“I’m a Super Bowl Shuffler now,” he says. “As long as I keep my legs stiff and shuffle along, I won’t go down.”
It hasn’t been easy becoming so immobile and needy so quickly. McMichael can’t emphasize enough how much he has admired and valued Misty’s ability to be a devoted caretaker through all this. Along with that, though, there’s a bit of embarrassment that can sometimes hit hard.
“I feel like a baby lying there whining,” he says. ” ‘Help me! Waaaaaa!’ “
Misty says she regularly is having difficulty with her own neck and back. She also never fathomed having to properly fit her husband with an external catheter before bed every night. But this is just life now.
In the saddest moments, McMichael hates what he’s putting his wife and daughter through and the sense of helplessness that comes along with that.
“I’m not the provider anymore,” he says. “I’m just one of the animals. I’m last in line behind the chihuahua. We’re both waiting in line to go to the bathroom.”
‘We scream. We holler. We cry’
The mental toll over the last four months has been significant. First, Steve and Misty had to work past their resistance to accepting the diagnosis. Then they had to deal with McMichael’s frustration, the kind that would come on suddenly when he tried to reach for something but realized he couldn’t.
On the bad days, the agitation can boil over.
Says Misty: “We scream. We holler. We cry.”
The tears have been frequent.
“A good cry helps me clear my nose out,” McMichael cracks.
The McMichaels also have had to begin envisioning the future, planning for survival with this ailment and the challenges it brings.
As much weight as McMichael has lost, he still is north of 200 pounds and difficult for Misty and their 13-year-old daughter, Macy, to move if he has fallen or otherwise needs help.
“I can’t pick his ass up by myself,” Misty says. “Macy and I managed to pick him up together one time. But if one of us is crying, we get weak, and now we need the neighbors.”
As much as anything else, Misty knows she has to find the family a new handicap-accessible home. Or a builder who can rapidly construct a handicap-accessible home. Amenities the family never would have thought about before — ramps, widened doorways, a roll-in shower, a toilet lift, track-lifting systems — suddenly are must-haves.
The McMichaels rent their current residence in Romeoville. As such, they are unable to make any extreme modifications or renovations.
“I know we need to move before his legs go out fully,” Misty says.
The clock is ticking.
“Calling all Bear Fan realtors,” McMichael says. “Mongo needs a handicap-equipped house.”
‘We’re all still in shock’
Dan Hampton and McMichael have been close friends for 40 years, Bears teammates for 10 seasons and buddies long after they both retired. Hampton hasn’t been able to wrap his brain around McMichael’s rapid decline.
“We’re all still in shock, a state of total disbelief,” Hampton says. “I look out my window and shake my head.
“I don’t know how many times I’ve looked at my wife and said, ‘I can’t believe this. I truly can’t believe this.’ “
In 2013, when Hampton revived “The Chicago Six” band, he brought McMichael on board as a guitarist and vocalist. Now, Hampton thinks of the last show the group did — in September at the Centennial Park West Summer Concert in Orland Park.
“It’s hard to believe that last show is the last time Steve will ever sing with us,” Hampton says. “We’re heartsick about this.”
Around the time of that final show last fall, Hampton heard McMichael complaining about the tingling and occasional numbness in his arms. McMichael also shared how he was having abnormal difficulty even twisting the plastic tops off Coke bottles.
“We were concerned,” Hampton said. “But Steve had complained for years about a neck injury. And maybe I was deluded into thinking that was it. …. We all know the predominant attitude of a pro football player is that we’re indestructible and nothing can stop us. Obviously this is a cold slap of reality.”
As word of McMichael’s condition has circulated slowly and privately through the Bears fraternity in recent weeks, the shared shock has been pronounced.
Former Bears offensive linemen Tom Thayer and Jay Hilgenberg visited McMichael this month and were jarred to see him in the state he was in, thin and unsteady and so incredibly vulnerable.
“And you know what they did?” McMichael says. “They looked at me, then looked at each other and they got ready to double-team me. Just like, ‘I think we can take him now.’ “
“Mentally,” Thayer says, “he is still fit as a fiddle. But then you see the other stage of what the disease does to you. That’s the hard part to take.”
‘There is no cure for this’
Thayer has made it a point in his time with McMichael to talk about the old days, the good times, to provide at least a temporary distraction from his current ailments. The old stories always provide a healthy dose of laughter and feel-good vibes.
“It’s more just trying to get access to the good times,” Thayer said, “instead of what he’s living through.”
So many of McMichael’s former Bears teammates still love him as much as always. Maybe more now. Dennis McKinnon has visited on multiple occasions to provide company and support.
Keith Van Horne, Richard Dent and Jim McMahon continue to reach out.
Gary Fencik and his wife are scheduled to pop in next week.
“There is no cure for this,” Fencik said. “It’s just a matter of not if but how long it takes before this (disease) really starts bringing its terrible consequences. And it has already begun.
“Steve has this. He’s acknowledging it. And there’s no reversal. This is going to be a cruel, cruel existence going forward. But he has a great attitude, and all we can do is hope he keeps that.”
Former Bears defensive back Leslie Frazier can’t even comprehend the idea that an athlete as burly and seemingly indestructible as McMichael is now so exposed.
“When I first heard about his condition, my heart dropped,” Frazier said. “You think of Steve as this strapping, physical specimen. He was a guy who would go hard all the time. And you never fathom he could be in this state. It’s been hard for me to wrap my mind around.”
McMichael always called Frazier “Corn” because he came to the Bears from Alcorn State. And while the two couldn’t be more different personality-wise, they always had a bond as teammates and a respect for one another’s work ethic and purpose.
Frazier knows all the 1985 Bears will forever share that deeper connection, forever attached by their triumph and the fun they had on the way there.
“To this day,” Frazier said, “it’s still a brotherhood. And I really believe all the guys feel the same way. When one guy is hurting, everybody feels the pain. This has not been an easy thing to process …
“I still picture Steve in our locker room posing and kissing his muscles. He’d say, ‘Corn! I know you see these muscles. You may want them. But you can’t have ’em.’ “
‘A man needs to know he was loved’
Don’t think McMichael doesn’t feel the love. The visits from former teammates always bring laughter and wise-cracking and a chance to relive the glory days and talk ball.
But it goes deeper than that. The visit from Hilgenberg and Thayer reminded McMichael of how sincerely his Bears brothers care about him.
When Hampton stopped over two weeks ago, he built a ramp from the laundry room into the garage.
“That type of compassion renews your faith in humanity,” McMichael says. “It does. A man needs to know he was loved. So he can be proud of himself and know that he mattered.”
The McCaskey family has vowed to cover the cost of the fully loaded wheelchair McMichael needs.
“Bears fans should be proud of the way they’ve stepped up,” McMichael says. “In my entire life, I haven’t paid as much for a car as that thing is going to cost.”
McMichael remains eligible for substantial financial aid from the NFL. His application for funding from the league’s “88 Plan” — named in honor of Pro Football Hall of Famer John Mackey — is under review and should open the door for up to $144,000 annually for medical and custodial care. The plan provides assistance for former players diagnosed with ALS, Alzheimer’s, Parkinson’s disease and dementia.
That funding will help, no doubt.
“But I don’t have that yet,” Misty says. “And Steve is degenerating much quicker than we thought. So we have to start fundraising now.”
Misty has been floored by the cost of the medical bills and specialist visits and medications and estimates for what Steve’s long-term care will require. The itemized-expense list seems unending. Misty recently had to purchase a new Chrysler Pacifica, equipped with a mechanical ramp, to help Steve get in and out of the car in his wheelchair.
The family savings have eroded rapidly. They’re also house-hunting during a seller’s market when inventory disappears rapidly.
“It’s unbelievable how fast homes are going right now,” McMichael says. “It’s like people are (bleeping) looting toilet paper.”
A Go Fund Me page has been set up, a means, according to the site, “to help defray the mounting cost of Steve’s daily care and medical needs.”
This weekend, Obvious Shirts founder Joe Johnson will begin selling “Team Mongo” T-shirts on his popular website, promising to devote all proceeds to Steve and Misty. (Naturally, McMichael’s shirt will be personalized to read “Me Mongo.”)
Information on future fundraising events and additional “Team Mongo” gear can be found at the official website, www.TeamMongo76.com.
The McMichaels and their team also have reached out to the Team Gleason Foundation, established by former Saints safety Steve Gleason after his ALS diagnosis, hoping to receive assistance in eventually getting McMichael an augmentative communication device, a computerized method of speaking for those who lose their vocal ability.
That’s still impossible to comprehend. Steve McMichael without his booming voice, without that Texas drawl and emphatic inflection.
“I look at it like this,” McMichael says. “I’ve already said it all anyway.”
‘They know they’re playing for real’
Even as his body deteriorates and his muscles wither, McMichael vows to draw on an inner strength and resilience that will help him and his family persevere. His desire to fight has smothered any temptation to surrender.
“That’s the ‘it’ they’re all looking for at all those scouting combines. That fight,” McMichael says. “You’re never going to stop bringing that.”
When Macy heard from one of her father’s doctors that the life expectancy of a patient with ALS averages around two to five years after onset, she interjected and told him they didn’t know what they were talking about.
“She’s a strong girl,” Misty says. “And she knows her mom is going to keep her daddy alive until she’s grown.”
During a visit with the McMichaels earlier this month, Hampton came away thoroughly impressed by the sense of resolve Steve and Misty have found.
“I was struck by their ability to focus and face this with a no (B.S.) attitude. They know they’re playing for real.”
Hampton knows that response isn’t universal and shouldn’t be taken for granted.
“If I was to be afflicted with this? I don’t know. I really don’t,” he said. “I don’t know that I could chuckle or laugh. I’m just being honest. I’d be destroyed. But Steve has found a way to accept this and say, ‘This was the hand I was dealt.’ For that, you shake your head and say ‘Wow! What amazing courage.’ “
McMichael sees it as a combination of perspective, perseverance and gratitude.
“I’m not in a depression, brother,” he says. “This disease came onto Lou Gehrig when he was still playing baseball. At least it waited until I was an old man. I’ve lived so long that I’ve seen and done things I want to forget.”
‘Hell yes, I would do it all over again’
McMichael has long taken great pride in his philosophical reflections and sharp one-liners, boasting that he combines the deep contemplations of Forrest Gump with the humorous invective of Don Rickles.
For years McMichael has joked that he should take all his musings and beliefs — “Mongoisms” — and fold them into a book or at least one of those one-a-day calendars.
“They flash across my mind like neon,” he jokes. “Why would I want to keep them? That just means there’s not enough room for the next one.”
Among his most recited pearls of wisdom: Every man lives, but not every man really lives.
To that point, McMichael always has had a profound appreciation for how football and his place on the Bears changed his life.
Two years ago, the Tribune named McMichael the 18th greatest Bears player of all time. That kind of recognition still means something to him. The Super Bowl triumph of the ’85 Bears, of course, tops his achievement list. He always will be remembered as a key figure on an iconic team.
The sport he loves did so much for him. It opened doors. Gave him a stage. Allowed him to be a showman. Best of all, it inspired him to test his limits and see how much greatness he could squeeze out of his talent.
So no, McMichael won’t allow himself to feel bitter toward football or question whether its brutality helped lead him to this current state. (A 2012 published study from the medical journal of the American Academy of Neurology noted that NFL players with at least five years of experience in the league were four times more likely to die from ALS than those in the general public.)
Says McMichael: “One neurologist I saw suggested to me that ‘Maybe the damage you did to yourself opened the door for what’s happening (now).’ But there are other people who get this where it just opens the door itself and kicks their ass.”
More than two dozen former NFL players have come forward with their ALS diagnoses, a group that includes Gleason, Dwight Clark, O.J. Brigance, Kevin Turner, Wally Hilgenberg, Orlando Thomas and Tim Shaw. Former Raiders running back Steve Smith, now 56 years old, has been battling the disease since summer 2002. His wife, Chie, has now become one of Misty’s most trusted resources and confidantes.
Forever, McMichael has told anyone who would listen that the joy of his career and the passion it brought out of him was worth every last ache, pain and bruise, surgery and long-term debilitating setback. But that’s a question worth revisiting now that the brutality of ALS has taken over.
Would he still do it all over again knowing this misery was waiting?
“Hell yes, I would do it all over again,” McMichael says. “Because it’s that journey that’s the reward. It’s that climb and how hard it was to substantiate yourself as out of the ordinary. That kind of achievement isn’t just given to you.”
Not that McMichael has any say in turning back time or reversing his condition. At this point, ALS has wrested control of his life. And McMichael is the first to admit he doesn’t want the hordes of Bears fans and other admirers to have their lasting memories of him be as a fragile man on the decline, weak and confined to a wheelchair.
Sure, he’s going to miss the adoration and the chance to entertain.
“But the dancing chicken is ready to be entertained himself,” he says. “I want to see someone else on that hot plate dancing around.”
In a more solemn moment, McMichael uses his bottom teeth to bite his upper lip and nods. He has one last message for those who may soon be concerned about him and his family.
“Say a prayer,” he says. “Say a prayer.”
Chicago Tribune’s Brad Biggs contributed.
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