We are adamant that Multiple Sclerosis doesn’t define who we are. It just happens that we are two people who happen to both live with this chronic progressive disease.
MS doesn’t define Jennifer and me; rather, we are doing what we can to redefine what MS is and what it looks like.
Yes, we live with it each day, and here is what MS looked like for us in a recent week.
Thursday, May 5
We woke up to a notification that the Brain & Life Magazine’s Brian and Life Podcast featuring Dr. Daniel José Correa’s interview with us went live. Check out its episode “Voices from the Multiple Sclerosis Community” to hear our thoughts and perspectives about life, love and co-caregiving.
Friday, May 6
This was a night we waited for three years to happen! Jennifer and I traveled 75 minutes southeast of our home to meet my sister, Dawn, and her family in Frankenmuth, Michigan, for our weekend of Walk MS activities. The pandemic had canceled the in-person event each year since 2019, and we were determined to make up for lost time.
Dawn, her husband, Mike, and daughter, Elizabeth, drive out from Iowa and met us at the hotel, and we then ventured out to enjoy the chicken dinners for which Frankenmuth is famous. Bonus this year: Jennifer’s caregiver Jenn and her family also made it to the hotel that night, and Dawn, Jenn, Jennifer and I finished the evening with beverages, chips and fried cheese curds at the hotel family fun center.
Saturday, May 7
Finally! Walk MS returned to Frankenmuth and so did Team MonsterS, the walk team Jennifer has captained the past 20+ years. The team was 29 people strong and was the top fundraising team when the event kicked off at 10 a.m. that day. It has raised $7,255 so far. If you are interested in contributing to the team and support its efforts to raise money for MS programs and research, click here to donate today.
Jennifer and I were honored to serve as the mission speakers and cut the ribbon to start the hundreds of walkers on the route through the scenic city. In addition, Ron Hilliard from the TV station NBC25 FOX 66, interviewed us and featured Team MonsterS for a Mid Michigan NOW News story.
Sunday, May 8
As soon as the date for Walk MS in Frankenmuth is announced, the next thing Jennifer, Dawn and I do is check to see if the Great Lakes Loons are playing at home in Midland that same weekend. The Minor League Baseball High-A affiliate of the Los Angeles Dodgers didn’t disappoint 🙂
Dawn, Mike, Elizabeth, Jennifer and I spent Sunday afternoon watching the Loons edge out the Beloit Sky Carp 5-4, with the go-ahead winning run getting scored in the bottom of the eighth inning. Then, we got to watch Elizabeth and Mike join all the other kids in attendance run the bases!
Monday, May 9
This was a special day for me as the Multiple Sclerosis Foundation posted my essay of exclusive content for its MS Focus magazine online. Think of “Sleepless in spite of MS” as my Ode to Netflix’s Ozark and how it helped Jennifer and me to forget about Multiple Sclerosis (literally) for one whole night.
Tuesday, May 10
Jennifer and I participated in the National Multiple Sclerosis Society Virtual State Action Day in Michigan. It was so empowering to join other MS activists statewide and urge our state legislators to rebalance Medicaid long-term services and supports In Michigan by appropriating at least 50% of funding to Home and Community Based Services.
Wednesday, May 11
Jennifer and I, along with her caregiver Jenn ventured down to the state in Capitol in Lansing to advocate at Older Michiganians Day. We were so grateful for our State Representative Roger Hauck who took the time to meet with us on the Capitol lawn and discuss the benefits of the Michigan MI Choice Waiver Program and how it helps seniors and people living with disabilities to stay in their own homes. It also was a pleasure to meet and chat with State Representative Annette Glenn from nearby Midland County about the same legislation.
Again, we live with MS each day, and we are doing what we can to redefine what MS looks like. That’s one more week down, myriad more to go.
What a lovely, joyful, and uplifting blog, Dan!