There’s two of us, so let’s start with our multiple sclerosis elevator speeches:
“I was diagnosed with MS on November 14, 1997, eight days after my 23rd birthday. 23 years old, single and I had a chronic disease of the central nervous system for which there is no cure. I had just graduated from the University of Michigan-Flint and had started my first “big girl” job in Detroit. But only five years after my diagnosis, I was no longer able to work or walk, and I was back to living with my parents.”
“I actually was diagnosed on Valentine’s Day 2000. I was 27 years old and had just started my new job as a writer at Central Michigan University. Even though my hands and feet always feel numb, my disease has stayed somewhat under control. But as you can see between Jennifer and me, symptoms of MS vary from person to person.”
Sounds like a love story in the making, right? For real.
As fate would have it, we met at a National Multiple Sclerosis Society event in 2002 (not sure if it was coincidence that it was called “Finding Your Buried Treasure!” We fell in love and were married in 2005.
This MS life together and serving as each other’s primary caregiver has had more than its share of anxious moments, frustrations and tears. This includes everything from Dan going to the ER because his bronchitis amplified his MS symptoms, Jennifer occasionally needing help feeding herself, or us getting stranded in Virginia because her wheelchair was too big for the airplane cargo ramp.
But through our combined 40+ years living with this chronic disease, we found the keys to our MS happiness were to keep moving forward, stay connected and be your own best advocate.
Don’t look back. You’re not going that way.
We could consume our lives looking back at what we’ve lost because of our MS. For example Jennifer hasn’t been able to walk in over 16 years, and Dan can no longer competitively run in 5K races. Sure, we can pause and reflect on what those times were like, but it’s wasted energy and that keeps us from realizing the new adventures and opportunities of each new day. Like when we discovered a barrier-free boat and went fishing last summer or braved the freezing temperatures and went camping in an accessible cabin late last fall. And now we are looking forward to what this new year has in store for us, like going to Comerica Park for a Detroit Tigers game and raising MS awareness in Motown through MS4MS!
Reach out. Someone needs you today.
We didn’t want to fall trap to the self-imposed side effects of MS. It can be a very isolating disease, but this is the one area where we’ve pushed to stay connected to others and make new connections daily. After all, how would we ever have found our buried treasure? 🙂 Whether it’s calling a friend, commenting on an MS community social media post or sending a letter (how old school, right?), these interactions interrupt any perceived feelings of being alone. And these connections help us as all to move forward.
No one knows your story better than you.
Silence is less than golden when you’re living with MS. Every form of the disease is different, so how else will people know what we need if we don’t speak up for ourselves? This is why we have dedicated our lives to MS activism and annually participate in MS fundraising events and regularly connect with our legislators to encourage support for programs that benefit us and members of the MS community. This includes traveling to Michigan’s capitol and advocating for the MI Choice Medicaid Waiver which provides Jennifer’s caregivers while Dan works during the day and going to Washington, D.C., to encourage legislation that provides for further MS research. It’s all about being your own best advocate.
We never asked to get diagnosed with MS. We truly had no choice in the matter. But what we’ve learned is that it’s up to us how we choose to live with this disease. We both chose to marry another person who is living with this progressive disease, and we continue to live our best life together. Sure, we have daily MS challenges, but fighting MS is a total team effort.
We surround ourselves with a strong team of family, friends, caregivers and medical professionals, but, fortunate for us, we have a co-captain who totally gets MS and is our respective biggest fan.