Spotlight Oral History

2 days 10 hours ago

Sixty years ago today, in the dark of the early morning, in a room with yellow wallpaper, my mother gave birth to her first daughter. She labored alone, waiting for the on-call doctor to arrive, the nurse telling her to breathe, breathe. When her baby arrived, there was no one there to congratulate her, no husband or boyfriend, no parents or siblings. She counted her baby's fingers and toes, named her Lynette, and let her go.

Mom's first daughter disappeared from her life for 33 years. When she found Mom (and the rest of us), in 1994, Mom finally released her secret.

I think of how sad Mom must have been on this day so long ago, but I also remember the joy she felt upon reuniting with her daughter all those years later. I am so grateful to have my sister Kim in my life.

Happy Birthday, Sis!

(Photo of Booth from the Salvation Army National Archives)

#BoothGirls #mymotherwasaBoothGirl #KimSrKimJr #andErictoo

Spotlight Oral History

5 days 10 hours ago

As a daughter seeking to understand a mother whose parenting was shaped by adoption loss, I was moved by this film. As an adoptive mother, I am reminded of the lifelong effects on a child of being separated from his birth mother.

Watch this.

Spotlight Oral History

3 weeks 15 hours ago

Have I told you how much I love this book? Even if I have, I'll tell you again. Evidence of V is one of the most beautiful books I've read in the past year, or five years, or maybe ten.

The book is a fictionalized account of the author's grandmother, who in the mid-1930s was incarcerated in the Sauk Centre Home School for Girls for becoming pregnant out of wedlock. Its story is a predecessor to the one I am telling in Booth Girls, its origins similarly rooted in the tangle of the personal and the political, the individual and the collective, the past and the present, the real and the imagined.

I had the pleasure of meeting Sheila O'Connor for coffee last spring, just before COVID shut everything down. We shared our family stories and talked about how we have sought to make sense of them through research and writing and imagination. It was a treat and I hope we can meet again.

Have I mentioned how much I love this book?
#BoothGirls #BMHoralhistory

Spotlight Oral History

4 weeks 9 hours ago

Thanks to all of you who have followed the Profiles in Courage: Rock Steady Boxers series. The stories shared by Betty, Gordie, Harry, Sheila, and Harold remind us that people with Parkinson's are not defined by their disease, however consuming it may sometimes be.

We already understand this about our loved ones, the people whose lives intertwine most closely with our own. But remember the lesson as it applies to those you might see only in passing -- on the street, in a grocery store, in a hospital, in the course of your daily work, or even hitting a heavy bag at a boxing gym. Though the visible symptoms of their disease might command your attention, remember that their lives are as rich and complex as yours, having emerged through joy and pain, hardship and triumph, good health and challenging illness.

We're still in the process of creating a website where these profiles will "live" on a long-term basis. I'll post the link as soon as it's ready. In the meantime, I'll close with this excerpt from Alfred Lord Tennyson's "Ulysses":

Though much is taken, much abides; and though
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are,
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.

(This project was undertaken in memory of my father, Matt Wikstrom, who was diagnosed with Parkinson's at age 42 and died at age 59.)

#ProfilesinCourageRSBoxers #fightback #morethanadisease

Minnesota Humanities Center Element Gym Rock Steady Boxing International HQ

Spotlight Oral History

1 month 4 hours ago

Harold Richey, Part 3

“I wasn’t a hundred percent [when I joined Rock Steady Boxing,] but Parkinson’s didn’t seem to bother me at that time. Then it started bothering me.”

Harold started boxing at Uppercut Gym in March 2017. He fit right in, thanks to his long history as an athlete. He enjoyed the intense workouts, the friendly competition. “I expect to be up in that front group,” he says, even at Rock Steady.

For a long time, he was.

Then Parkinson’s started taking its toll. By the time Uppercut’s RSB program moved to Element Gym in mid-2019, it was becoming harder for Harold to keep up in class. “I was slowing down,” he says. “When I started and there were thirty of us exercising, I’d be in the top ten or twelve, something like that. … Then I started feeling embarrassed because everybody was beating me.” He started seeing a therapist to combat the depression that often comes with the disease. “Some days it helps a lot, sometimes it doesn’t.”

When COVID closed the gym, Harold thought doing RSB classes on Zoom might help. He could work out in the privacy of his own home, without feeling embarrassed that he couldn’t keep up the way he’d like. Susy wouldn’t have to drive him 45 minutes to and from the gym. But it’s been hard.

It’s hard to follow instructions from a distance. Technical difficulties have interrupted class. Harold’s depression has worsened. In the warmer months, Susy got Harold out for walks and bike rides, but then he fell a couple of times, broke a finger.

Sometimes “everything is just terrible,” Harold says.

Harold speaks a hard truth. Pain and loss and frustration are cold realities of Parkinson’s. It’s a progressive disease without a cure. “It just gets worse and worse and worse,” he says.

Still, Harold perseveres. He does physical therapy. He sees his therapist. He keeps coming to RSB classes – 66 times, in fact, from April through November.

Because that’s what an ‘A’-team guy does.

Photo portrait by Robyn Mathews-Lingen, @designwrite studios

#ProfilesinCourageRSBoxers #fightback #morethanadisease

Minnesota Humanities Center

Spotlight Oral History

1 month 1 day ago

Sheila Proehl, Part 3

“Me, boxing? What?”

By 2015, Sheila was feeling okay. She had retired from her job. She was in close contact with her son, Jonathan, and daughter, Anne. She was traveling. Parkinson’s-related fatigue sometimes prohibited her from doing the things she wanted to do, but all in all, things were good.

Then she saw Lesley Stahl’s program about Rock Steady Boxing and learned that a new program was opening at Uppercut Boxing Gym in Minneapolis.

On May 17, 2016, Sheila became one of the first Rock Steady Boxers in the state of Minnesota.

For the next year or so, Sheila drove from Hudson, Wisconsin, to Northeast Minneapolis two or three times a week to box. She kept boxing after she moved to St. Paul in 2017. She kept boxing when Uppercut closed and RSB moved to @Element Gym. When COVID hit and sent everyone home in March 2020, Sheila boxed via Zoom. When the gym re-opened in June 2020, Sheila came back and boxed while wearing a mask. She and her fellow RSBoxers are once again boxing at home while Minnesota waits for the COVID surge to subside.

That’s quite a commitment from a woman who had never imagined herself wearing a pair of boxing gloves.

She does it because Rock Steady makes a difference. “I became stronger,” Sheila says. “I could endure more. My tolerance level increased. My balance got much better.”

And then there’s the people. “People from all different walks of life. …I have grown so much because of the people in that organization.” She still can’t do everything she would like to do, she says, but Parkinson’s does not overwhelm her life.

Sheila has some advice for those who have just learned they have Parkinson’s: be diligent in following your physician’s orders. Take your medication. Seek help if you’re depressed. Surround yourself with positive people. “It’s not a death sentence,” she says. “You can still have years and years of good quality of life.”

Oh, and this:

“You’re going to meet some great people if you go to boxing. So sign up today!”

Photos by Robyn Mathews-Lingen, Designwrite Studios, and Kim Heikkila

#ProfilesinCourageRSBoxers #fightback #morethanadisease

Minnesota Humanities Center
Uppercut Boxing Gym
Element Gym
Rock Steady Boxing International HQ

Spotlight Oral History

1 month 3 days ago

Harry Pontiff, Part 3

“Life is only livable, or acceptably livable, if we have that fundamental attitude of love your neighbor first.”

When Harry saw Lesley Stahl’s program about Rock Steady Boxing, he wanted in.

At the time, however, there were no programs in the Twin Cities. He forgot about it until his massage therapist told him she’d stumbled across an RSB class at Element Gym.

Harry drove to the gym the next day to sign up.

He took his first boxing class in October 2019. For the next five months, Harry came to the gym once, twice, sometimes three times a week to box with others who have Parkinson’s. Even after COVID forced the gym to close and sent most RSBers to Zoom, Harry has continued to box, following coaches’ instructions on-screen while he works out at home.

Why do it? Why keep boxing at home?

Because, Harry says, “it just makes sense.” Medication has its place, but boxing has been “proven to attack or address the vulnerability” that comes with the disease. “The question is, do you want to invest in prolonging your life while your grandson grows up?”

Overall, Harry says, Parkinson’s has strengthened his relationships, especially with Connie, son Morgan, and daughter Kira. He was delighted when Morgan and his wife had their son, Harry and Connie’s first grandchild, in 2019. And he has found a new source of friendship in his fellow boxers. “This is a group of folks who understand what is going on and the trajectory we’re on and what needs to be done both for our personal lives and those that count on us,” he says. “If you’re going to have Parkinson’s and see it through some difficult times, that’s the group to do it with.”

The spirit of caring for others has defined Harry’s life, from his politics to his profession, his activism to his avocation. It sustains him even now, through the pandemic and his life with Parkinson’s. “The fuel that keeps me going day to day is [the realization that] we’re all in this together. So let’s buckle up, saddle up, and move ahead.”

Photo by Robyn Mathews-Lingen, Designwrite Studios

#ProfilesinCourageRSBoxers #fightback #morethanadisease

Minnesota Humanities Center Rock Steady Boxing International HQ

Spotlight Oral History

1 month 5 days ago

Gordie Hampson, Part 3

“This is the most dedicated I’ve been as far as an exercise program in the past thirty-six years, since I quit playing hockey.”

Gordie knew what it was to be in good shape, especially during his pro hockey career. After his playing days were over, however, he had little incentive to stay in shape – at least until 2013, when he was diagnosed with Parkinson’s.

It took Gordie a while to get back into the exercise routine. “I’m just a hot-shot athlete,” Gordie recalls thinking, “I can turn it on and off whenever I want.” But Parkinson’s interferes with the mind’s control of the body. It wasn’t so easy.

Finally, in the spring of 2019, Gordie joined Rock Steady Boxing at Uppercut Boxing Gym and followed it to Element Gym shortly thereafter. He loves it. The classes are a good test of his athletic skill and provide the camaraderie he had enjoyed while playing hockey--minus the competition. “Everybody’s just doing their best,” he says. “It doesn’t matter if somebody’s doing one push-up or a hundred push-ups, it just doesn’t matter.”

COVID has disrupted the group dynamic a bit, but Gordie participates in RSB over Zoom. It’s too important to give up. “It’s been a lot of ups and downs and twists and turns,” Gordie says of living with Parkinson’s, “but Rock Steady Boxing has been a big positive for me in that journey.”

The other values that have defined Gordie’s life – humility, perseverance, building strong relationships – have also helped him weather the storms of Parkinson’s. He feels more like his old self, less anxious, less self-conscious. He also feels more comfortable talking about Parkinson’s and is happy to help others who have the disease. “There’s such a big pull to turn inward and it’s unnatural,” he says. “To be able to rise above and actually be an encouragement to somebody else and to advocate for somebody else… I think that’s the biggest thing,”

Photo by Robyn Mathews-Lingen, Designwrite Studios
#ProfilesinCourageRSBoxers #fightback #morethanadisease
Minnesota Humanities Center Rock Steady Boxing International HQ

Spotlight Oral History

1 month 1 week ago

Betty White, Part 3

“Parkinson’s does not define who I am.”

One more thing about Betty: she loves life. She also loves boxing.

For a while after her diagnosis in 2014, Betty became depressed and inactive. Then she saw Lesley Stahl’s piece about Rock Steady Boxing, a non-contact boxing program for people with Parkinson’s, on CBS Sunday Morning.

I could do that, she thought.

A couple of years and a couple of moves across the country later, Betty joined Rock Steady Boxing at Uppercut Gym in Minneapolis.

“When I first got to Rock Steady,” she recalls, “I was so out of shape. I could hardly do anything.” She liked the challenge of boxing, though. It improved her balance, her strength, her flexibility. Her mood. She lost weight and gained friends.

She also liked being treated as the athlete she is. “I never have felt like I’m a little old lady who just can’t do anything,” she says. “Coaches are telling me ‘You can do what you can do.’ And we do.”

Betty followed Rock Steady to Element Gym after Uppercut closed in June 2019. Then COVID-19 hit. Betty hasn’t been to the gym since. She and John go for long walks, but it’s not the same. Her balance isn’t as good as it was, her thinking isn’t as clear. She misses her friends. “I’ll be back as soon as I can get a vaccine,” she says. “I just love it so I’m not going to give it up.”

John is still by Betty’s side as she navigates the ups and downs of her disease. They have both volunteered to help RSB Saint Paul reach out to other African Americans with PD, and, once COVID subsides, John plans to become a certified RSB coach.

Betty has learned to accept the role Parkinson’s plays in her life. She knows there are things she can do to feel better, to live better with the disease. She’s grateful for her family, her friends, her ability to move and to move on.

“It’s not an easy disease,” she says. “But it’s okay for me because I learned how to cope with it. I’ve learned how to deal with it. And I think I’ll be okay.”

Photo by Robyn Mathews-Lingen, Designwrite Studios, and Jack Kennelly

#ProfilesinCourageRSBoxers #fightback #morethanadisease
Minnesota Humanities Center
Minnesota Humanities Center
Rock Steady Boxing International HQ

Spotlight Oral History

1 month 1 week ago

Harold Richey, Part 2

“I had the training program [for the race] put together and I discovered I couldn’t meet my goals anymore.”

Harold was diagnosed with Parkinson’s disease in 2016. He had volunteered at the Minnesota Senior Games the year before and watched men his age competing in track. “I saw these guys running quarter miles and half miles and I knew I could run that fast,” he recalls. “So I said, I think I can run that thing for my age group.”

He had a good training season that fall but was having problems the following spring. After reading an article about Parkinson’s, he and Susy agreed that the disease might account for his difficulties. A doctor at the VA hospital confirmed their suspicions: Harold had Parkinson’s.

“After that, it was all just downhill,” Harold says.

He’s had problems with his gait and his balance. He’s experienced depression and some cognitive changes. Recently, he’s been falling more than he used to. He doesn’t drive anymore, either. “If you can’t drive, what can you do?” he asks.

Parkinson’s is hard on Harold, to be sure, but he also worries about its impact on his wife, Susy. “Susy gets beat up all the time,” he says. “She has to do all this stuff for me.” She drives him where he wants to go. She helps him keep track of doctor’s appointments and medication schedules. She helps him up when he falls. They’re moving from Forest Lake to Hudson, WI, to be closer to their daughter Cricket. Susy could use the extra help.

This isn’t easy for an ‘A’-team guy to accept. “I’m not big on help, I guess,” Harold admits.

Sometimes even boxing reminds Harold of what he has lost.

Photo by Robyn Mathews-Lingen, Designwrite Studios
#ProfilesinCourageRSBoxers #fightback #morethanadisease

Minnesota Humanities Center Rock Steady Boxing International HQ

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