Progression is Real

Hope is the thing with feathers – That perches in the soul – And sings the tune without the words – And never stops – at all – – Emily Dickinson
Recently, we redid our website and as part of our fundraising page, we were asked to supply a statement on “why we walk.”  I took some time to think through this and came back to our very first walk, where I signed up and fundraised because I didn’t know what else to do…I felt so helpless.
When Gary was diagnosed, I only knew one person who had MS.  That summer, we travelled to  NYC to visit some friends and they introduced us to a mutual friend who also had MS.  As I sat at the bar with the woman living with MS she schooled me on how I would never be able to understand what my husband was going through and that MS would put up this huge wall between us.  My feelings of hopelessness were compounded by her negativity.
The quote I chose to include on the website is “I walk because HOPE keeps us out of the darkness.”  It seems cliche and even dramatic…but goodness, it’s so prevalent in our life.  Actually, this whole post is a little dramatic.  Bear with me. 
Over the course of the last 11 years, I’ve watched Gary’s disease progress.  When dealing with a chronic illness, like MS, patients and carepartners are often walked through the stages of grief since it is similar to dealing with a significant loss.  The loss of control, the loss of independence, the loss of plans…It’s really hard to deal with.
And each year has felt different – some years we’ve seen major progression, other years have felt like nothing changed….but I curse Facebook so frequently (like many of us do) when it shows me the memories from previous years because it highlights what change has occurred since Gary’s diagnosis. 
This time, 6 years ago, we were door-knocking 2-3 weeknights and every weekend, for hours at a time. 4 years ago we were playing our annual Farm Golf with the Matarazzo’s at Thanksgiving.  2 summers ago, on our 10th anniversary trip, Gary used his cane for the first time but his gait was still normal.  These days, Gary gets home from work and needs to rest for a good 20-30 minutes before he’s ready to join the chaos that is our household.  He recently got rug burn from going up-and-down steps at my parents house because he had to take one step at a time and kept rubbing his heel on the step.  His mobility issues are ever-present and noticeable.  As we considered what to do amidst COVID for our kids winter birthdays, we thought about renting a cabin in the woods – but to do what.  Our family doesn’t hike or spend the day roaming around cute towns in a socially-distanced manner. 
This disease is doing exactly what it set out to do.  Asshole disease. It can feel really dark and lonely at times.   
So I walk and I raise funds and I gather friends and spend far too many hours focused on MS because it gives me hope.  And hope keeps the darkness at bay.  And we need that. And I realize this whole post is a little negative – but my mom has always said it’s important for me to share our story and what it really feels like and this is it, friends.