Janet’s Story

MS helped Janet overcome self-imposed barriers as she stepped through the mirror to know her core values.

Spring 2022: Typically at this time of year I’ve assisted in coordinating a run/walk for non-profits in the NH Seacoast area. I have always been drawn to assisting my community in any way; a crew member behind the scenes of an event, by bringing awareness and support to the participants of a local group, as well as being a paraeducator in our local school district. But this year I wasn’t assisting the community. I was the community.

My first introduction to MS was In the summer of 1987.  My twin sister and I participated in Venture Unlimited Bicycle Tour across America. We were raising funds for Multiple Sclerosis, which I knew nothing about. In fact, I wasn’t sure if I was even pronouncing it correctly. 

As life progressed into my 40’s, symptoms quietly crept into my daily functions.  Geez.. I’m getting old… time to train more, stretch more, condition more.   The harder I tried to work out, my body became weaker and would function less. With feelings of frustration I needed to know:  ‘What is going on?’ Finally after four years of seeing different doctors for the collection of varied symptoms and with a lumbar puncture at St. Elizabeth’s Hospital, it was confirmed…Yes Janet, it’s all in your head!  

I was diagnosed with Primary Progressive Multiple Sclerosis.   

After three years of navigating the understanding of PPMS and beginning to see myself differently through the mirror of my diagnosis, my husband and I decided to become members of The ELC fundraising team Walk MS in Boston 2022.  Fundraising, I know how to do that…but this was different.

At first I didn’t want to share with anyone that we were walking.  I felt selfish and didn’t want to burden anyone with fundraising or even giving up their Sunday to walk with us in Boston.  It’s ok. I don’t need to reach out for support. I thought, this walk is for my husband and I.  

What I didn’t realize, until I shared my intent to participate in Walk MS Boston, was the loving support that flooded my inbox, fundraising page, texts messages and emails.  So this is what it feels like.  I’m the recipient of a fundraising event.    

My neighborhood walking crew had embraced walking with me in Boston.  I was a bit, I don’t know the correct word…hesitant, for them to see what happens when I walk 3 miles, exhausting my nerves and the time it takes for me to complete it.  Typically I limit my walking to 1 1/2 miles because I know what happens when I crest that mileage…wobbly legs, buckling knees, off balance, tripping over big toes, needing to rest more often before continuing my walk.  3 miles is my max…taking about 1hr 45 min including rest stops to complete. As I share this experience, I’m stepping through the mirror and being vulnerable.  

The experience was awesome! My friends didn’t feel bad, or think less of my athletic abilities. In fact it was quite the opposite.  We became closer.  Walking through the mirror and sharing my whole self that day was what I needed to see that PPMS is a situation that doesn’t take away from who I am.  Going through the mirror image gave me a new perspective.

The Walk MS Boston event was a full circle experience for me.  By changing my personal narrative, attending my MS monthly group meetings, and 3 years of infusions at The Elliot Lewis Center,  I have a better understanding of who I am as I look into the mirror.