Send Me More Stories About Genetic & Congenital Diseases
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.
