Steve “Mongo” McMichael & Misty McMichael via Misty’s Instagram McMichael.Misty FOLLOW

Learning About ALS Because You Have To

ALS stands for amyotrophic lateral sclerosis. It is commonly known as Lou Gehrig’s disease, named for the legendary New York Yankees baseball player whose career ended after he developed the disease in 1939.

ALS is a progressive neurological disease that damages the nerve cells responsible for voluntary muscle movement.

There is currently no cure.

And one of the particularly cruel things about ALS is that no two people’s experiences with it are necessarily identical.

Misty had seen that firsthand.

Former Raiders fullback Steve Smith lived for many years after his ALS diagnosis. Chicago engineer Matt Toole also lived with ALS for many years.

But Misty’s friend Kelly lost her husband, Tom Salzburg, only months into his battle with the disease.

Tom had bulbar-onset ALS, where symptoms can begin with speech and swallowing difficulties.

Steve McMichael’s symptoms began differently.

His ALS first showed itself in his limbs.

But his disease wasn’t moving slowly.

Not at all.

ALS Can Be Financially Devastating, Too

One of the things Misty wanted people to understand was that ALS doesn’t only attack a person’s body.

It can attack a family’s finances.

And the caregiver may suddenly have to become an expert in things she never imagined needing to know.

Insurance.

Medicare.

Secondary coverage.

Medical bills.

Home healthcare.

Equipment.

What is covered?

What isn’t?

Who pays for this?

Why did that get denied?

And whom do I have to call now?

Before Steve was diagnosed, Misty told me they had Blue Cross Blue Shield coverage that paid for much of his healthcare.

After Steve officially received his ALS diagnosis, their insurance situation changed when Medicare entered the picture.

Misty described the transition as shocking.

She and Steve suddenly found themselves trying to understand primary and secondary coverage while facing enormous medical expenses they had never expected.

And because Steve was becoming too sick to handle it himself, guess who had to learn all of this?

Misty.

She had to become an insurance expert while simultaneously becoming her husband’s caregiver.

That is something about caregiving people don’t always tell you.

You aren’t only caring for another human being.

You may suddenly become their scheduler.

Their medical historian.

Their insurance department.

Their advocate.

Their transportation.

Their voice.

Their protector.

And sometimes their entire administrative staff.

You have to learn a lot in a very short amount of time.

I would understand that much better later in my own life.

Steve Mongo McMichael Chicago Bears via Misty’s Instagram McMichael.Misty FOLLOW

Tears—and the Kind of Laugh That Comes From Them

By the time Misty told me these stories, she said things were no longer quite as frightening financially as they had once been.

She had reached a place where she could look backward and appreciate what she and Steve had already survived—as well as consider where they were going next.

The fact that she was strong enough to share the story, and believed that sharing it might help somebody else, seemed like a good thing to her.

Even when telling it brought tears to my eyes.

Along with a few of those very special laughs.

You know the ones.

The laughs that somehow come directly out of the tears.

And Misty can make you laugh.

Boy, can she.

Misty Thought Steve McMichael Was Broke

One story made me whole-heartedly laugh.

When Misty first started dating Steve, she thought he was out of work and broke.

She even told her daddy that she had probably fallen in love with yet another penniless man whom she was going to have to support—just like her first husband.

When Misty met Steve, he’d broken his arm and simply told her that he was “taking a break” from work.

What he neglected to mention was that he had been one of the legendary 1985 Chicago Bears.

And that he was also a professional wrestler.

So Misty thought she’d picked another broke bad boy.

Again.

While Steve was supposedly “on a break,” Misty was still working for her ex-husband’s brother, who owned a strip-o-gram service.

Steve offered to accompany Misty on some of her jobs as what Misty called her “cooler.”

In other words:

Her bodyguard.

Misty thought this was incredibly sweet because Steve was the first guy who didn’t charge her anything to protect her.

The Strip-o-Gram Where Nobody Watched the Stripper

The first job Steve accompanied her on was pretty routine.

Some guy was retiring or leaving his company, so his coworkers chipped in for a strip-o-gram.

One or two songs.

Wiggle, wiggle.

And go.

Misty thought the gig wasn’t too bad for Steve, either.

Everyone at the company seemed to like him.

She didn’t know why.

She just figured Steve was charismatic.

Then came another job.

This time, Misty had been hired to perform for a group of about ten deaf men at someone’s home.

The music, obviously, was primarily for Misty.

As she began performing, however, she became a little uncomfortable.

The men were signing to one another.

A lot.

And making sounds Misty didn’t understand.

Meanwhile, Steve was strategically stationed in an adjoining room where he could see Misty and the audience in case he needed to “cool” anything down.

The men kept looking over at him.

Then they’d sign frantically to one another.

Then look at Steve again.

Misty kept dancing because she knew Steve was nearby.

But after a while, she started getting annoyed.

These guys were paying more attention to her bodyguard than they were to her!

She was the entertainment.

Or so she thought.

Exasperated, Misty cut her performance down to two songs.

Her talents were obviously being wasted on this inattentive audience.

After her final ta-da, instead of the applause, cheers and tips she was accustomed to receiving, the men rushed right past her.

Toward Steve.

For autographs.

It turned out they’d been signing to one another the entire time about the fact that Steve McMichael—the Chicago Bear and professional wrestler—was standing in the next room.

The excitement Misty thought she’d generated?

Mongo.

After Steve finished signing autographs, the couple walked out to the car.

That’s when Steve finally explained who he was.

Misty thought about this for a minute.

“Okay,” she said after getting into the car. “Why don’t I just keep my clothes on, and you can make us both money by going to your autograph signings or whatever. I think we’ll make more money.”

Steve said:

“Okay, let’s do that.”

And that was pretty much that.

Misty quit stripping.

“No, I Don’t Want to Wrestle Your Ex-Wife”

At one point, Vince McMahon saw what he thought could be entertainment gold.

Steve’s former wife, Debra, had married Steve Austin—another famous professional wrestler and a rival of Steve’s.

Misty told me that there was interest in putting the couples together for a tag-team wrestling storyline.

Misty and Steve.

Debra and Steve Austin.

And there was money involved.

Misty emphatically passed.

It was already enough having cameras shoved in her face whenever she accompanied her husband on the road.

She did not need to wrestle his ex-wife on television.

Thank you very much.

From Reluctant Public Figure to ALS Advocate

Because Steve and his former wife had both lived publicly, Misty realized that people were naturally curious about her too.

And although she resisted celebrity, she did pick up a few skills from being a reluctant public figure.

She learned how to talk to the media without giving away her private life.

She learned when the limelight could actually be useful.

And eventually she learned how to use it for a cause.

By the time I was writing about Misty, she was using that voice to advocate for Steve and for other people affected by ALS.

She threw out a ceremonial first pitch at a Cubs game connected with ALS awareness.

She attended fundraisers.

She participated in events associated with the Muscular Dystrophy Association, the Les Turner ALS Foundation and the Chicago Bears.

And she championed her husband’s legacy.

“This is not a career choice,” Misty told me.

She had accepted her weird life with Steve because for many years it had also been magical and fantastical.

Until things got real.

Now she believed she had another mission:

Helping other people affected by ALS.

This, she thought, was what she was supposed to do.

When a Caregiver Gets to Stop Being a Caregiver

Years later, when I knew Misty as Steve’s caregiver, marijuana was legal in Illinois.

Misty told me she would occasionally allow herself to smoke a joint to take the pressure off.

To escape, briefly, from the reality of watching her husband lose more and more of the life he had left.

But even that tiny escape was a luxury.

She could only do it when the full-time nurse was there and Steve’s brother Richard was in the house helping.

Steve’s sisters, Kathy and Shery, helped Misty whenever they could as well.

Because Misty had to remain vigilant.

She had to stay aware of her husband’s needs.

All the time.

And that may be one of the most important things Misty taught me about caregiving before I ever understood that I was going to become a caregiver myself.

The person you’re caring for may sleep.

The caregiver doesn’t necessarily go off duty.

Even when someone else takes over for an hour, part of your mind remains alert.

Is he okay?

Does somebody know what he needs?

Will they call me?

Should I check?

Can I really leave?

Can I really relax?

Years later, while caring for my own father, I would understand that vigilance in an entirely different way.

And it would become one of the themes behind Saving the Father.

But when Misty first sat in my salon chair and told me these stories, I wasn’t thinking about any of that.

I thought I was listening to a client tell me about her extraordinary life.

I didn’t know I was getting lessons.

End of Part 2 of 4.

Continue to Part 3 →

In Part 3, Misty’s story continues as ALS changes Steve’s needs—and changes what it means for Misty to be his wife, protector and caregiver.

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