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When Jennifer Met Dan: An MS Love Story

When multiple sclerosis cost Jennifer the use of her legs, she never thought she'd date again. Then she met Dan.

Though it’s estimated that each week more than 200 people are diagnosed with multiple sclerosis, “the most widespread disabling neurological condition of young adults around the world,” it’s fairly rare to find two people diagnosed with the disease living together.

But that’s what happened when Jennifer Urick met Dan Digmann at an MS awareness event in rural Michigan in 2002, fell in love, and got married. True story: MS actually brought Dan and Jennifer Digmann together.

Though they both have a different form of MS (Dan, 44, has relapsing-remitting, while 42-year-old Jennifer’s secondary progressive MS took away her ability to walk at 28 years old), they both function as partner-caregiver to the other.

They have made it the mission of their marriage to speak out about the realities of living with MS–through their blog and book, as well through the National MS Society and various organizations around the U.S.–and they have taken their advocacy on behalf of people with disabilities to Washington, D.C.

Folks caught up with the Digmanns following a keynote speech they gave in March at an MS fundraiser in Houston.

Jennifer and Dan Digmann met each other during their own individual battles with multiple sclerosis.

Jennifer, when I hear you tell your story about how you were diagnosed fresh out of college, right at a time when young people feel most free and independent, it guts me. How did you process those feelings?

Jennifer: I think because I got involved with the National MS Society right away, I always met a lot of positive people wherever I went. I knew, ‘This is not going to break me.’ There was a self-help group in Flint, and they needed a leader. It was a challenge I knew I could do. I couldn’t necessarily be a speaker at that point, but I could put together a meeting, I could buy donuts.

Before I met Dan, I didn’t think I would ever date anyone. I had MS and I was in a wheelchair. I just wanted someone to be with, someone who understood what I was going through. … And for as much as it sucks now, tell me I’m not living a dream. Both my parents are here, I have awesome caregivers, I have an amazing husband.

Before I met Dan, I didn’t think I would ever date anyone… Tell me I’m not living a dream.

Tell me about one of your most trying times.

Dan: When I pulled my back out this past summer … I’m on the floor, and Jennifer’s on the floor. I couldn’t transfer her [to her wheelchair]. It was all I could do to call the paramedics. They got her on the bed, they got me on the stretcher. The whole time Jen’s alone in bed, and I’m in my hospital bed recovering, texting her. She called her mom and brother to help. You realize how much you depend on each other, you start thinking about everything we had planned …

Jennifer: That was, pardon my French, a shitstorm. That was when Cooper died [the Digmanns’ beloved cat ran away in the commotion]. I think we both said, ‘God is telling us to slow down.’ It’s just the reality that it took my mom and brother to do what Dan does, and they were both tired at the end of the day.

Have you ever had the thought that you weren’t going to make it?

Dan: I never thought that we were never going to make it. We have too many people behind us, we’ve got God on our side. I think it’s just being patient, asking, ‘How the hell are we going to get it done?’ It sucks, it happened, I hated it. But are you going to make room for better experiences to take up your time? We’ve had vacations or trips when there’s just really bad stuff that happened. You don’t let the bad stuff win.

What word do you use, humble? We’re positive, but we’re not Pollyanna about it. This is hard. I never said, ‘Why me?’ Jennifer was the answer to my prayers. That’s what you do, you find the lessons.

Photo: Emily Mesner

Jennifer, you’ve said that in your dreams you can walk again?

Jennifer: Yes, I have a lot of vivid dreams, I have dreams where I’m walking, and Crystal, my caregiver, has dreams where I’m walking. I believe that I will walk again. I have to believe that.

I never said, ‘Why me?’ Jennifer was the answer to my prayers.

How do you deal with the vulnerability that comes with disease and disability?

Jennifer: I feel pretty vulnerable right now. Not to get too political, but with all of the talk surrounding cuts to Medicaid, I fear the possibility that the Medicaid waiver program could be in jeopardy. Without that program [which provides 32 hours of paid in-home caregiving each week], I wouldn’t be able to live in my house. I would potentially have to go live in a group home. I don’t dwell on that vulnerability. I know it exists, but I also know I have good neighbors, good caregivers.

Does your advocacy work help you feel less vulnerable?

Jennifer: With the advocacy and the public speaking, it makes me feel stronger just knowing that at least I got my voice out there. Plus, we meet so many people. The networking really helps. And today was pretty darn good.

Dan: We knew there were going to be over 400 people [attending the fundraising event]. I just looked at her today, and she was talking, and I was so impressed and mesmerized. She just hit her stride, she was so in her element. We were in our element. No one can do what we’re doing, no one can tell our story.

Jennifer: And none of this would be possible without

Dan: Well, none of this would be possible without you.

Top photo by Steve Jessmore.

Health & Fitness

Sex In The City (When You’re Disabled)

Fashion model, beauty queen, and psychoanalyst Danielle Sheypuk is the Carrie Bradshaw of dating with disability

“I don’t consider myself a fashion model,” explains, Dr. Danielle Sheypuk. “I just use my body through modeling to show people with disabilities that they can do it too and that we’re cool.”

Danielle Sheypuk.

Danielle Sheypuk’s mission is to make disability chic, sexy, and cool.

Danielle’s mission is to make disabilities chic, sexy, and cool. Born with spinal muscular atrophy, Danielle works at this both on a micro and macro level. “The PhD definitely helps.” she says. “People listen to me because I’m educated.” And while she’s careful to stress that foremost, she’s a clinical psychologist, she’s also a model-beauty-queen-consultant-activist. Each hat plays a role in her mission, which can be summed up by the excellent hashtag she coined: #disabilityisthenewblack.

“My mission is inherently a part of me. What I’m doing just feels really right and intrinsically fulfilling and like it’s what I’m meant to do,” says the undeniably glamorous doctor, clad in a black pinstripe suit with fur-topped shiny loafers. Her fashion sense is more obvious than her wheelchair.

Her fashion sense is more obvious than her wheelchair.

Danielle always loved putting outfits together and shopping. But now, it’s not just for fun. Looking great in public is important to Danielle because “a lot of people have still never seen someone in a wheelchair, so I want the imprint in their mind to veer as far away from the stereotypes of frumpiness as possible.”

Then she laughs and says, “I mean it’s not hard, I do it on the daily anyway.”

Danielle is a super in-demand shrink, working with clients from all over the country. Though she works with disabled and non-disabled patients alike, she designed her practice to be Skype-accessible, to make it easier for those with disabilities to come to sessions. She treats all types of issues–including situational anxiety, work stress, bipolar disorder and depression–but her specialty is in dating, sexuality, and relationships.

Growing up, Danielle realized there was a discrepancy: she felt normal but never got asked on dates through high school and college.  “A lot of things about disabilities are heavily advocated for, but when it comes to sex and dating, it’s still taboo,” she says. She had only had one incident ever in which someone talked to her about dating and they gave her terrible advice.

A lot of things about disabilities are heavily advocated for, but when it comes to sex and dating, it’s still taboo.

It was during high school. There had been an online chat room that for one night only was going to discuss disability and dating. She waited all day, super anxious and excited for the chat. When the time came, she expressed her difficulty finding a boyfriend, and the group leader’s advice was simply that it was going to take a really long time to find someone. “That was really awful advice,” says Danielle. “It was demoralizing.”

She left her home in Scranton, Pennsylvania–that’s the town where The Office takes place–for New York City. Excited and hopeful, it was there she got her PhD from the New School for Social Research in Manhattan. A huge fan of the show Sex and the City, she had what she called “big Sex-and-the-City-dreams” of finding love. Upon arrival, she set up a Match.com profile, but still found it was more difficult to date than it was for her more able-bodied peers.

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Danielle as Ms. Wheelchair New York.

That was when Danielle came to a critical realization: there was no Carrie Bradshaw writing about dating with a disability. So she decided to assume the role.  She published a few pieces, and the topic eventually turned into the focus of her practice.

Shortly after, while still in grad school in early 2012, a friend told her about the Ms. Wheelchair New York pageant. It was the first time she had heard about anything that combined ‘glamor’ with ‘wheelchair. She knew if she could win, it would be a platform for her to start talking about her topic publicly. “We are a pop culture culture,” she says. So she entered, and she won.

She once told a doctor that she was completing her PhD and received little reaction until she told him she was Ms. Wheelchair New York at which he totally freaked out, and brought nurses in to get autographs.  She laughs about the absurdity of this, but she’s fully using it to her advantage. While she might be a powerhouse mind, she doesn’t downplay the importance of glamour.

She hired a publicist. “I took it and ran,” she says.  She knows the combination of having a PhD and also being a beauty queen is interesting to people. “That’s the idea behind my brand. I want to change the image of people with disabilities into an image that’s cool and glamorous and chic,” she says. “It’s already common for us to be pushed toward academic achievement with the underlying message ‘ok, you’re not going to get married, your body isn’t working. So use your brain.’” But she wants to balance this out. She wants the world to see that people with disabilities are also sexy and dateable and great romantic partners.

I want to change the image of people with disabilities into an image that’s cool and glamorous and chic.

In 2013, she met the fashion designer Carrie Hammer at a benefit.  They decided to have Danielle model in her New York Fashion Week show. The story went viral. Danielle and Carey hadn’t realized they were making history: Danielle was the first model in a wheelchair ever to grace the Fashion Week stage. Next thing she knew she was doing the morning show circuit, preaching her gospel of glamour on a macro level.

“Seeing me as a model wearing fashion, looking great is inspiring,” she says, then self corrects, “Actually I hate the word inspiring.” Above inspired, she just wants people with disabilities to feel integrated. “We’re often put in the ‘inspirational’ role and it’s just cliché! It’s played out. It goes back to the telethon days where we were used to raise money because ‘oh wow, my life is hard but Danielle is an inspiration, look what she goes through!’  It’s old! We have great lives. Just because you have a disability doesn’t mean your life sucks.”

Danielle at a recent TEDx talk at Barnard College.

Danielle at a recent TEDx talk at Barnard College.

Far from it. In fact, in her psychology practice, she works on something she calls “dateable self-esteem” because, she says, in general people with disabilities often have high self-esteem with their families, friends, and careers, but not when it comes to dating. She explains that self-doubt stems from thoughts like “who’s going to accept all my physical problems?” and “Who’s going to desire me sexually when my body is so different from the norm?” She gets it.  Her practice with her clients is largely informed by her own dating experiences.

Her younger sister, an anesthesiologist in the Air Force, does not have a disability but is also single. They commiserate about dating.

“A lot of dating problems are universal,” she explains. “It’s hard no matter what to find a quality man, to find chemistry, and for some reason, to find a guy with a job—even in New York City!” It’s hard, but it’s not only about the disability. “I may be single because I’m disabled, or I may be single because I’m an educated woman with a career,” she says, “but there are millions of couples where one or both partners have a disability and they have gotten married, given birth, and have great families. It’s all possible.” That’s what her clinical practice works to reaffirm on a micro, person-by-person basis.

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Danielle’s headshot. Photo: Peter Hurley

On an industry-wide basis, Danielle is changing the way designers think about product design. In a recent talk she gave at Parsons School of Design, she discussed disability and the concept of universal design. “They brought me in because the fashion market is saturated with designers who want to make beautiful luxurious clothes. But I say, do something different, look at the populations that aren’t yet designed for.”  She’s not a proponent of clothes and products specially designed for people with disabilities, but rather for creating design solutions that are more universally viable. Because, she points out, a solution for one is often a solution for many.

For example, she recently spoke to a large corporation that produces paper-based consumer products.  She specifically addressed their fem-care product line and possible designs that would work better for women in wheelchairs. Turns out the design solutions that she offered would also be a better for women with arthritis, one arm, or even a broken arm. She acknowledges that Nordstrom does use some women in wheelchairs in their advertising, but points out that disabled people are a $220 billion-dollar industry and are still virtually ignored. If Danielle has her way, they won’t be for much longer.

Between modeling, speaking, and consulting gigs, Danielle’s still somehow accepting new clients. Get in touch on her website.

Health & Fitness

Finding Power Within

Born with one arm shorter than the other, Mark Chaffer found love and acceptance in weightlifting.

Like a true athlete of the 21st century, Mark Chaffer met his girlfriend  just where you might expect–Twitter. Haley Deutsch was trash talking Chaffer’s favorite hockey team, the Washington Capitals, and their teasing friendship grew from there.

One day, Deutsch tweeted that her date had stood her up. Coincidentally, the same thing had happened to Chaffer that night. They decided to correct the karma in the world by going out with each other, to an outdoor screening of Top Gun at a local Baltimore brewery.

Mark Chaffer and his fellow powerlifter girlfriend, Haley Deutsch

Mark Chaffer and his fellow powerlifter girlfriend, Haley Deutsch

In Deutsche, Chaffer not only found a romantic interest. He found the motivation to transform his life through powerlifting.

Before meeting , Deutsch, the well-rounded sportsman had played lacrosse, soccer, cycling, baseball, football… and messed around aimlessly at his college gym. But nothing felt quite right.

“Lacrosse was the first thing I wasn’t good at because of my arm,” he remembers. “There was a whole section of skill that I wasn’t good at because I wasn’t able to use my right arm as well as everyone else. I liked playing, but I didn’t like competing.”

Born with an umbilical cord tied around his neck, Chaffer was stuck and forcibly removed during labor. As a result, Chaffer has Erb’s Palsy: a rare neurological condition which stretches the nerve between his arm and shoulder, causing motor issues. In Chaffer’s case, this has resulted in his right arm being three inches shorter than his left.

That didn’t stop him from loving sports. Nor did Deutsch’s childhood injury.

“When she was younger she was thrown off a horse and broke her back, but she squats two times her body weight,” explains Chaffer, 26, who works as a production support analyst at a mutual fund company when he isn’t at the gym. Through his girlfriend, he learned about yet another sport he could try on for size.

“She had already done a couple of powerlifting competitions at that point, and I didn’t know anything about powerlifting,” he says. “I was just going to the gym to screw around.”

Powerlifters train to maximize their strength in three main movements: bench pressing, deadlifting (raising a barbell from the ground, until the lifter stands straight and holds the bar), and squatting. With his shorter right arm, Chaffer struggles to bench press because his arms can’t raise the bar evenly. The same goes for deadlifting. But in the squat, Chaffer is a beast. Today, he can squat 601 pounds—but he had to surmount a few serious stumbles to get there.

In the squat, Chaffer is a beast.

Inspired by Deutsch’s fearlessness, Chaffer started training more seriously. At the time, he was “only” benching around 200 pounds. Gradually, he began to enjoy the rituals of the gym and the community there. He says powerlifters don’t take themselves too seriously because they aren’t competing with each other, just with themselves. Chaffer joined a discussion group on Reddit (called a subreddit) filled with self-deprecating lifters who made him feel more lighthearted about his “crappy bench presses.” (Full disclosure: My boyfriend is a member of said subreddit.) “The majority of people do it for fun. With bicycle racing, people take it insanely seriously, they’ll buy $10,000 bikes for a low-level race. The proportion of people in powerlifting who [take it to those extremes] are way less.”

Still, he was afraid to sign up for the crowning event of powerlifting: a competition.

“It was partly because I didn’t want to get embarrassed, and I wasn’t sure about myself as a lifter, I guess. My disability played into that a lot. The only thing I was good at, and it’s still true, is squatting.” When he squatted 500 pounds for the first time, he thought, “Eh, whatever, maybe I’ll like it.” Deutsch encouraged him to go the whole way.

“Everyone was really supportive,” he says. “That was a year and a half ago, and I still find people who say ‘Oh, I remember you from that meet last year!’ I wish I’d done it earlier because I learned how to enjoy the experience and not be worried about what people will think and if I can fit in.”

Chaffer's specialty is the squat. Photo: Ashley Sauers

Chaffer’s specialty is the squat. Photo: Ashley Sauers

Then, Chaffer was tested to his core, physically and emotionally. He flew to the American Open in Boston, determined to hit more personal records (PRs). After preparing for months, he squatted 540 pounds, a PR by 22 pounds.

“That was awesome, and as soon as bench started, everything went downhill. I got the first bench, and then my body didn’t do what I wanted it to do. Deadlifting went as poorly as it could have gone … and I got a little disillusioned after that.”

For months, he had been in constant pain. “I was trying to force my body to do stuff that it wasn’t made to do,” he says. “That’s where I figured out: OK, I can’t bench like other people or deadlift like other people, and I need to reassess. I took a few weeks off, and went back in with a different approach. I decided to listen to my body more.

“I had to stop and relearn from the ground up. It took forever, and it was terrible.”

Chaffer was grappling with the cognitive dissonance of his invisible disability. Most people didn’t notice it, so he was often attempting movements to be as similar to the standard as possible. “If you talk to people who don’t do sports, they would say, ‘You’re normal.’ That’s not true, but that’s how people see others with invisible disabilities.”

Chaffer was grappling with the cognitive dissonance of his invisible disability.

After hearing about the organization I Am Adaptive, Chaffer began to view his body in a more holistic way. Through months of trial and error, he learned stances that would make his bench press and deadlift feel better. “It’s about constant adaptation,” Chaffer says. “Because you can’t function like a—quote—‘normal’ person, you keep adapting and changing.”

In the end, that’s why Chaffer connected with powerlifting more than any other sport.

“It’s empowering,” he says. “I can go to the gym and learn how my body works or interacts with the world around it. With the constant of the three lifts, I can go in and tweak small things and take that micromanaging control of something and try to analyze it and solve the riddle. When I started thinking of things more like I could work on and adapt to them, and that I could use it as a personal challenge, it started to feel really good.”

In May, Chaffer did a local meet “for shits and giggles” and set a state record for the knee-wrap division by squatting 590 pounds without wrapped knees. He shares his lifting videos online and has grown a following on Instagram (@ineffective_platemath), and he’s vocal about his struggles with Erb’s Palsy.

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Chaffer after listing 590 pounds, a new personal record. Photo: Ashley Sauers

“When I share and have a big audience, people say, ‘That’s awesome you’re able to do this, I have the same condition, can you share something that will help me?’ People seeing me as a success has helped them see they can have success and keep trying.”

His next goal? Squatting 700 pounds. Instead of contributing to his pain, powerlifting is the first sport that has most improved the symptoms of Chaffer’s injury. “Now that I’ve been lifting for a couple of years, I don’t get the kind of back pain or shoulder pain that I used to get because I got the parts of my body that are screwed up, stronger. So it’s been good for my general existence. My body is better able to support itself.”

Despite all his personal success, Chaffer knows whom to thank: He continues to follow in the footsteps of his powerlifting girlfriend. They’ve moved in together in a Baltimore suburb near Catonsville. When the brawny couple isn’t at the gym, they coddle their 20-pound miniature pinscher, Diesel (“very anxious and excitable—does not like being left alone”). Chaffer says, “Everyone has weak a overhead press, except for my girlfriend who overhead presses more than I do. … No matter how discouraged she got, she just kept doing it. She would get knocked off and start again, and that really inspires me. That’s what I find awesome: hitting adversity and having things not work out the way you want, and keeping on going with whatever it is you’re working on.”