7 Questions with A Couple featuring Tanya Nordhaus

Mother, Bike MS team leader and top fundraiser

Motherhood brings with it an immeasurable amount of blessings. It also involves its share of challenges, many of which are amplified when the mother also is living with Multiple Sclerosis. Tanya Nordhaus knows this all too well, but she wasn’t going to let MS prevent her from starting a family with her husband, Mark. As people in the United States and other countries worldwide celebrate Mother’s Day on May 8, we are honored to share Tanya’s stories and experiences as a top Bike MS fundraiser and Circle of Friends team leader and, most importantly, mother to her 10-year-old daughter, Amelia.

1. You were diagnosed with Multiple Sclerosis in 2001, but you actually had participated in and raised money for Bike MS with the team Circle of Friends for several years prior to that. What was that like when you were diagnosed with a disease you had worked so hard to end?

I began biking in the MS rides when I was just 17. I thought it would be a great challenge, and it was for an important cause. Even though, honestly, I knew nothing about MS nor knew anyone with it. I rode for 10 years, mainly by myself. It was just something that I wanted to do each summer.

In February of 2001, I fell very ill. I couldn’t stand nor crawl without falling over. I couldn’t move a ring from one end of a wire to the other. I had severe double vision. It was devastating. When the neurologist came to my hospital room to announce that I had MS, I really couldn’t believe that he was telling me this after I had ridden and fundraised for MS for 10 years… and still knew nothing about it.

Needless to say, I got educated pretty quickly as to what MS is. Beyond my dad, some of the first calls I made were to the bike mechanic who got me involved in the MS bike rides and my friend, Scott, who I met and rode with on the MS bike ride two years before. I knew they wouldn’t believe it either. Scott said that we should start a team at that point, which is actually when Circle of Friends was born. And, despite my neurologist saying that I wouldn’t be doing the MS bike ride that year, I did. Thanks to the support of Scott who helped teach me how to ride a bike again, my dad who helped me rehab, my uncle who rode on the team that first year, and many others.

2. Knowing how challenging MS can be, what gave you the confidence to decide you were ready to start a family just over a decade later?

Honestly, I wasn’t truly confident in our decision. I knew there were other women with MS who could do it, so why couldn’t I? I have an amazing husband, who I knew would be very supportive and helpful. So, we took the leap. I have never been someone to let MS get in the way of anything, and this was no different. That all being said, we knew we had to stop at one. I admire women with MS who have multiple children. I really admire them. Sadly, I just couldn’t do it.

3. How do you talk to your daughter, Amelia, about your MS and the realities you face each day?

Since a very young age, she has known that Mommy suffers from what she used to call “multiple elerosis.” It’s hard to hide. When she was really young, she just knew Mommy was tired. She loved it because she was a big snuggler and would take advantage of my napping every time. As she got older, I explained that it affects the brain and spine and that I needed to stay healthy. She helps me every time she gets an opportunity to do so. Always has. I think my MS has made her more empathetic and compassionate than she would otherwise be. Or I just got lucky with her.

4. How did the idea for annual Amelia’s Little Bike-a-Thon for MS come about, and how proud does this event make you feel?

Amelia has literally been attending Bike MS rides since she was 2-weeks-old. My husband did the Bike MS in Ohio for years before even meeting me, and I’ve been doing it, as I mentioned, since I was 17. Bike MS is in her blood. When she was just 5, she came and sat down next to me on the couch. She said, “I want to do my own Bike MS ride with my friends and people my age.” How could I say “no” to that? So Amelia’s Little Bike-a-Thon for MS came to be that spring. She had to pivot during COVID and do Amelia’s Little Workout for MS on Zoom, but the bike-a-thon is back this June. She’s already working hard on it. She’s 10 now and still wants to put the brakes on MS. I really could not be prouder of her. How could I not be?

5. What is the best advice you ever received about being a mother in spite of your MS? And what is the best advice you can give to other mothers who are living with MS?

The best advice I ever received was “rest when you can.” This was when I was expecting, and it was great advice. I took advantage of her every sleeping moment to rest. I didn’t clean. I didn’t get stuff done. I rested. It gave me her waking time to play with her, read to her, and just be there for her. My best advice for mothers living with MS and really any mother is to make memories and share their life stories with their children. I think both are essential. I am always trying to make great memories with Amelia. It has been evident to her, and she is grateful. It’s my snuggle night every other night. I share a story from my life each of those nights and have done so for years and years. She will even ask me to repeat stories. It is an extraordinary bonding time for us. So yes, make memories and share your story.

6. You are a self-described “near life-long vegetarian.” How have you seen this positively impacting your health and managing your MS?

I have been a vegetarian since I was a kid, so I don’t know how to answer that question. I don’t remember what I felt like when I ate meat. I just know that eating vegetarian makes me feel good, feel healthy. I often wonder if it has helped my immune system. Despite my disease-modifying drug, it is a rare day that I get sick.

7. You taught English and Spanish for seven years and served as the director of a learning center for nearly three years. You now are pursuing a doctoral degree in Curriculum, Instruction, and Assessment. How do you find the energy to stay fresh and keep going?

Energy? What’s that? The last time I felt a burst of energy was about 17 years ago. I remember it well, but it has eluded me since. However, I do get a lot done, considering my lack of energy. Everyone is always amazed at how much I accomplish in a day. I’m a passionate person, passionate about everything and everyone in my life, and that’s what drives me. That and naps. I get tons done between my naps, but I must take naps. Really, that passion, though, drives me to get so much done and keep going.