• Dave Barend

Though She's Getting Worse, Arizona's Emilee Gustafson Keeps Getting Better



“I’m kind of boring.”


I have a story to write about Emilee Gustafson who just described herself as boring.

Wonderful.

“I really enjoyed my COVID year in my room.”

And - it just got worse. I’m dealing with an aspiring hermit.

Uh Dave, as president of College Basketball Times, how did you get stuck with this?

Deep breath, next question: “So you are from Minnesota?”

“You betcha.”

Did she just say "You betcha”?

Dear Lord, that’s right out of Fargo. I mean she's literally a yokel . . . Wait a minute.

I see a slight upward curve with her mouth. And she notices that I noticed which leads to a sly smile. And then a little laughter. Ahh - I get it. Yeah, she knows what she did there.

Witty woman.

This might get better. Hmm, kind of like how Emilee keeps getting better. But she also keeps getting worse.

"That’s a good point.”

I agree, Emilee.

"That’s a good story."

Well, let’s hope so.

A TOUGH START

Emilee will incorrectly tell you she has had Hereditary Spastic Paraplegia (HSP) for a long time. She has actually only had it since birth.

Apparently that feels like a long time to a woman in her very early twenties.

She concedes she knows others who have greater experience with HSP like Dad, Grandma, Aunt Heidi and Cousin Brittany.

According to the National Institutes of Health, HSP is characterized by progressive weakness and spasticity of the legs. Gait difficulties, stiffness and other symptoms typically progress requiring a wheelchair.

And here’s the kicker: "There are no specific treatments to prevent, slow, or reverse HSP.” It just keeps getting worse and worse.

Imagine being a mother and learning of this diagnosis for your new child. What do you do? Emilee’s mom went with prayers and positivity.

“I prayed a lot. But I didn’t overthink it. If I can’t change it, why stress about it.”

Her father said, "I was really pissed off since Emilee’s older brother does not have the disease. I felt terrible because I gave it to her. About a week later it hit me like a ton of bricks that my daughter has me and I was going to be able to help her through all the stages.”

As for Emilee she did not really think about it. Well, until she turned into a penguin.

“I always remember being self-conscious about walking different. Starting elementary school my knees were bonking against each other. I was a penguin, a little baby penguin.”

That could have been pretty cute. I’m envisioning something like those newborns in March of The Penguins.

Sure Dave.

Or maybe The Penguins of Madagascar.

A little less cute, but ok.

How about Chilly Willy?

Chilly Willy? How old are you Dave?

A FUN START

“He wanted me into that right away,” Emilee said.

By “he" she meant her dad.

By "right away” she meant before she even turned six.

And “that” - that of course meant wheelchair basketball which her dad had been coaching for years.

“Of course I wanted to play under him.”

It all took place at Golden Valley's Courage Kenny Rehabilitation Institute, named after Sister Elizabeth Kenny - the most famous sister with ties to the Great Lakes region not named Jean.

So they made the 50 minute trek for her to play “Prep.”

"I had no idea what I was doing . . . Floating around doing circles, scared of the ball - all that fun stuff.”

When Emilee wasn’t experiencing the “joy” of dizziness, she focused on the skills of her older cousin Brittany. She also recalled another talented player named Josie.

“I always thought she was the sweetest girl. I was like how are you so angry and aggressive on the court. How do you go from that to that? She was an inspiration.”

Uh Dave, why do we care about this random Josie person? Dave?



GETTING WORSE

Middle school stinks. It just does. And it really stinks if you have HSP.

"In middle school I walked around with leg braces,” Emilee lamented.

"People obviously thought I was different. They would not include me or hang out with me. They thought I couldn’t do the same things. . . .And that’s where my confidence dropped because I walked around like a drunk penguin."

For those not keeping track, we have moved from penguin to drunk penguin. Which begs the question: What does a drunk Penguin look like? Answer: like Emilee during middle school.

But as is the case with HSP, things got even worse - right in time for 9th grade.

For many young girls high school comes with the removal of braces, and showing off new smiles. Emilee also got her braces removed, but instead got a wheelchair to show off.

Actually, it didn’t need much help showing off.

She tired to fit in by joining marching band. Yes, the marching band. She then learned a couple things:

First, “It’s hard to push and hold a flute at the same time.”

Second, it’s a rare person who accomplishes fitting in by joining the marching band.

GETTING BETTER

Unlike marching band, and most things for that matter, Emilee found one activity much easier by being in a wheelchair - wheelchair basketball.

Both Emilee and her mom saw a big boost in her confidence as she increased her use of the wheelchair and her dedication to the sport.

Her dad firmly believes that children with HSP should “incorporate wheelchair sports into their lives as it is a giant aid to life in general. . . . I could not imagine where Emilee would be without those experiences.”

So Emilee eventually moved up to JV. Someone else she knew moved up with her - Coach Dad.

“Yeah, we were the Gophers.”

Gophers, really? That’s awesome.

Uh, Dave they were the Gophers because of the University of Minnesota, not Caddyshack.

“We were not a big team for JV, but I’m pretty tall. I was also one of the only girls, but I felt I needed to step up,” Emilee recalled.

She also had another thought about that time: "I should probably start listening to Dad."

It seems to have worked.

Her dad noted, "She had a revelation after one of the tournaments. She said, ‘Hey Dad, I guess I can play ok against these boys.' I said, ‘Yeah . . . you were actually out playing most of them.'”

As further evidence that Dad knows what he’s talking about: the team made it to Nationals.

And his little girl won MVP.

So what would Emilee do when the wheelchair basketball season ended? Play more wheelchair basketball.

“Every summer I would go to wheelchair basketball camps hosted by the colleges. . . . Watching older kids like Brittany and Josie succeed in college and get scholarships. I was like - ok yup, that’s what I want to do. That was my motivation to do four more years of school.”

But the next step with her non-stop hooping was making Coach Doug Dixon’s varsity team, which she did as a sophomore. She then won another MVP her junior year.

Did you try to find out what these MVPs were for, Dave?

I did.

Yeah, well what did you find?


That Emilee is ridiculously humble.

"So Emilee, do I have this right, you won league MVP?

"Yup, for the NWBA.”

“Wait, that’s the entire national organization. You were actually ranked number one in the whole country?”

“No, they don’t rank players.”


“Well what was the name of the award?”

“NWBA’s Varsity Female MVP.”

“Holy crap! So yeah, you're saying you were the best player in the country.”

“No. I don’t know about that.”

“But you were the one and only MVP in the whole country, right?”

“I don’t know why.”

“Why? I don’t care about why! I care about learning if you were the best in the country. That’s huge!”

(Long pause while Emilee contemplates.)

“How about this: were you the best female varsity player in the country - according to the award?”

“I guess, maybe.”


Emilee with her younger brothers, her mom, her older brother and her stepdad, Glen.

THE WORST - SEEMINGLY

Though Emilee’s parents divorced when she was about two, they made it work. She lived with her mom (Karen Mumford) most of the year, and weekends plus summers with Dad (Jeff Gustafson) - and Murph the dog.

During the 45 min treks to her dad’s place, Emilee and her mom had long conversations.

“I told her everything,” Emilee said.


And Mom told her more than a few things too like, you can only control what you can control. Keep your faith in God. And everything happens for a reason.

Then something happened which had a reason, but that didn’t make it easy.

Emilee’s condition further deteriorated to the point where short walks in her mom’s house became painful and exhausting. Dad, however, had a wheelchair accessible residence. But she did not want to leave her two younger brothers, Charlie and Michael. And she definitely did not want to leave her best friend.

Murph the dog?

No, not Murph the dog. Her mom!

“Telling my mom was the hardest thing I’ve ever done . . . It was the first time I saw her cry. It was terrible.”

For those of you reaching for tissues, please calm down. The BFFs are all good.

Dave, nobody says BFF anymore.




BETTER FOR SURE


With the new living arrangement, she received pretty much non-stop training from Dad so she could improve at hoops.

Wasn’t she already the best player in the country?

“Dad was going to help me bring my game to another level,” Emilee said.

Apparently there is a level that is better than the best.

There actually had been a prior success story at Camp Dad. Cousin Brittany moved in with her uncle Jeff for a bit and ended up having a stellar career with Wisconsin-Whitewater and Alabama. So it was Emilee’s turn.

"He’d come up with drills that I could to work on. For example layups - scoops and reverses and regular overhand layups - he came up with a drill that incorporated all of those.”

Anything else?

“Since I’m tall he wants me to shoot like above my head. . . .He put his elbow brace on me backwards so I could not bend my arm. I just had to use my wrist to shoot. He’d just come up with this ingenious stuff."

Oh, give me some more.

"We have like an off road wheelchair with big ole wheels, and he’s telling me to push it around the yard."

Whoa.

“Oh another thing he tied a tire to the back of my chair so I’d pull that across the driveway for conditioning."

Ok, I’m exhausted just envisioning this.

According to Jeff, “We were able to separate Coach Dad vs Dad and she just kept improving.”

Now, a little credit needs to go to big brother Tyler too.

Emilee says, “He’s able-bodied, but he’s pretty decent at the sport.”

So big brother get’s labeled “pretty decent.” And how about Dad?

“He’s my biggest inspiration and always will be.”

I’ll pause while you go look for those tissues.


But did the hard work pay off again?

Well, in the finals of a tournament against Milwaukee she snagged back to back end of game rebounds to win the championship.

Impressive.

She also won another MVP.

For being the best player in the country?

Yup.

And didn’t she win that her junior year too?

Yup.

So she didn’t really get any better.

I think Dad would disagree.

"She became a great teammate that was hungry for knowledge. With that hunger came leadership. With that leadership came opportunities which she has capitalized on.”

Now if Dad gets most of the props for Emilee’s hoop skills, what about Mom?

“I should get credit for her sense of humor,” Mom asserts. “Emilee loves to make people laugh and has a heart of gold.” Her mom then added with a chuckle, "We like her.”

But apparently the whole family has some comedy chops.

“We’re always just doing random goofy things,” said Emilee.

And everyone loves retelling the crap story.

The crap story?

At around age 3 Emilee liked to bring a whole lot of things with her when traveling. One time her mom told her, with the deepest affection, “You can’t take all of that crap.” So little Emilee looked up at her mom and said, “Well, can I take 1 crap or 2 craps?”


Emilee with Cousin Brittany

WORSE YET AGAIN

“Now given that you won MVP two years in a row, did you pretty much have your pick of colleges?”

“I don’t know about that.”

“Would any of the schools have said, ‘No, we don’t want Emilee playing for us.’?”

(Emilee pauses then reluctantly replies.)

“Probably not.”

The thing about humility is it can be both endearing and exhausting.

So she ended up at University of Arizona. Because?

"I was like I can’t deal with snow anymore.”

Ok, any other reason?

"I wanted that opportunity to help start a program. . . and take a leading position right away. . . .They had my major, graphic design . . . and once I got to campus I was like this is it."

Unfortunately Emilee soon discovered a big problem with The University of Arizona - it’s in Arizona.


"I got super homesick.”


It got so bad that she FaceTimed her family constantly - even during classes.


"I talked to them probably more than I did at home.”


She tried to explain why with her characteristic sense of humor:


"Well it was hard moving from grass to dirt.”


“All I saw were trees that didn’t look familiar.”


“There’s no water and I like to fish.”

According to her parents she doesn’t just like to fish, she excels at it, once catching a 4.5 pound bass. For those more likely to frequent a McDonald’s than a Cabela's, that’s about 31 Filet-O-Fishes.

To make matters worse, that HSP, (you know, Emilee's disorder that keeps getting worse) well, it got worse. As her dad had warned, chronic back pain kicked in. The intense leg spasms eliminated more from her “things I can do” list. And she could hardly move her toes.

“My feet are just stupid. They don’t work with me. They are just penguin flippers."

According to my count that makes three references to penguins.

Seems like she would have been much less homesick and fit right in had she just chosen the University of Antarctica.




BETTER YET AGAIN

Emilee did find a little bit of home in Arizona - Josie.

Who?

You know, Josie, the older girl Emilee looked up to during her Prep days. See, Josie had a final year of eligibility at Arizona when Emilee entered as a freshman.

“I remember her being teeny tiny in the smallest little basketball chair," Josie recalled of Emilee. "And she’s now one of the tallest in the women’s division.”

They played together during Emilee’s favorite game to date, a battle with the mighty Crimson Tide.

“Alabama, they were the best team, they still are . . .and we just we scared ‘em. We were just a little team, little underdogs. We had nothing to lose. We surprised the crap out them. We got in their heads It was crazy. We lost it in the second half. It was a really cool experience.”

Wait. Her favorite game was a loss?

“I also had a lot of points which could have something to do with why I remember that game.”

Emilee had another cool experience that year. She got to wear Number 54 - the number of her favorite player of all time.

And who might that player be? Her dad. Yes, she chose her number solely because of her dad.

Need another tissue?

So to determine who holds the title of being the best #54, I posed the following question to Dad:

“One on one, you vs Emilee - who wins?”

"Well, I just gave her the last of my little secrets on how to play big this summer, so I am guessing I am probably toast from here on out.”



Photo by Karen Mumford, Cover Photo by Danielle J Main



WORSE PAIN

A little advice: If you happen to be an aging guy with back pain, don’t compare yourself to someone with HSP. Turns out, there’s very little comparison.

“Lower back pain - always,” Emilee claimed. "Now it’s worse than Freshman year, and it gets worse when I play basketball. After a game I’m stiff as a board and in a whole lot of pain.” Again, so she claimed.

I mean there seems to be a striking lack of evidence of her alleged unbearable severe pain.

Her teammate Abby Dunn divulged, “I haven’t seen her struggle too much.”

Her coach said, “She doesn’t tell me it’s an issue.”

Even her mom told me, “She doesn’t complain.”

Isn’t pain kind of like that tree falling in the woods. If nobody hears it, did it really take place?



BIG GAIN

The reason people don’t know about the pain is "because Emilee is an incredibly tough kid,” says Coach Josie

Coach Josie?

Yup, before Emilee’s sophomore year, Josie became Coach Josie. Her actual name is Josie Aslakson. But she often goes by Josie Alaska - according to spell check.

She also won a bronze medal with Team USA in the 2020 Paralympics and she has her own Wikipedia page.

Huh Dave, and does the Grand Poobah of College Basketball Times have his own Wikipedia page?

No, no he does not.

More importantly, what does Emilee think of having Josie as her coach?

“I very much do love my coach."

While noting a mutual feeling, the coach added, “Emilee's a very hard worker. Very humble. She has drive to get to the elite level. . . She’s very intelligent with a very high basketball IQ.”

According to Coach, sometimes that high basketball IQ comes with a negative - over thinking. And the way to get around such overthinking is, in a word: fire.

Now you may recall that Emilee could not figure out, back in her prep days, how sweet Josie could be so angry and aggressive on the court. That’s because Emilee didn’t understand the need for fire.

Well, Coach Josie worked hard to instill that in Emilee.

And how’s it going, Coach?

“She has that fire now."

Emilee definitely listens to both Coach Aslakson and Assistant Coach Courtney Ryan.

“The coaches are all about the connections. . . . You’ll find us holding hands when we do our little Wildcats thing.”

Inexplicably, “our little Wildcats thing” has no connection to High School Musical.

Dave, how do you know anything about High School Musical?

Are you kidding? I have two daughters. I've seen that thing almost as many times as Caddyshack.

Emilee also raves about how the coaches created a family atmosphere. And that works out well because she describes her teammates much like she describes her own family.

"My girls are goofy.”

She added, “We got really close which is nice and led to really good chemistry.”

Emilee and two of her teammates, Abby Dunn and Sam McMinn have actually decided to reside together. And Emilee’s brother Tyler will be joining them - well, at least until he reads that his little sister labeled him merely “pretty decent.”

But Abby maintains, “Em is the type of person you can instantly become friends with. She’s positive and always pushing our players without raising her voice and encouraging us daily. She is truly a great friend and person to be around."

Abby might be overstating how great Emilee is to be around:

“My ‘socialing' has to be during homework. So I invite people over to do home work with me. I’m still social doing homework at the same time."

“Demented and sad, but social,” said everyone reading this over age 45. (Those under 45, go watch The Breakfast Club.)

That social-studying led to the NWBA naming her an Academic All-American. Ok Emilee, go ahead and brag. You earned it.

"I don't know how I ended up getting that award.”


Emilee, Abby and Sam


OUTLOOK NOT SO GOOD

Emilee just recently received some not so good news. She and Cousin Brittany are worsening with their HSP at a much faster pace than that faced by her dad and her aunt.

And dad definitely knows what’s coming.

"Spasticity will keep getting worse . . . Legs will ache and be more and more painful . . . The back pain will increase . . . Standing in place to reach stuff will get exponentially more difficult.”

The NIH paints an even bleaker picture noting that future symptoms could include cataracts, epilepsy, cognitive impairment, peripheral neuropathy, and deafness.

Yikes.

One tissue may not be enough this time.


Dad, Stepmom (Janelle), Tyler and Emilee.

FUTURE LOOKS BRIGHT

Emilee’s dad has found a reason for some optimism.

"I heard about NU-9 a couple years ago, they were testing it on mice. It was stopping the disease from progressing. Hopefully in her lifetime it comes to fruition.”