Last week, Bruce Springsteen released his epic collection of previously unreleased songs, “Tracks II.” Listening to these recordings reminded me of how much his music has supported me through my journey life with Multiple Sclerosis and as Jennifer’s primary caregiver.
This led me to think of an essay I wrote that was directly inspired by one of Springsteen’s songs from his 2014 album, “High Hopes.” I originally wrote it as a guest post for Donna Steigleder’s blog, MS Caregiver Sharing. I am grateful she gave me the opportunity to share it with her readers then and that I, in turn, can share it with you on Jennifer’s and my blog today.
Birds are chirping. Breeze is blowing. Mourning doves are … mourning. And I’m that man sitting on the deck typing.
Having free time to write like this is what I hoped for more than 17 years ago when I was first diagnosed with MS. Back then, I feared the unpredictable nature of the disease. I anticipated the worst when I first took a walk through the woulds:
- Would my MS rapidly progress?
- Would I still have a job?
- Would I remain able-bodied?
Over a decade and a half later, here I am. I’m that man, typing on the deck … and I’m drinking a beer after a long day of work at the same place I was employed when I was diagnosed in 2000 — a workplace that has promoted me three times since then.
I’m on the deck of the house I share with Jennifer. She’s my rock in fighting this disease. This isn’t only because she is my spouse who vowed to love and support me in health and in sickness. Jennifer also has MS and understands my reality.
But she is nowhere near me at this moment.
Jennifer is at the pizzeria with her girlfriends for their monthly book club meeting. They’re meeting there because The Cabin serves some of the best pizza in town, and it’s also because it’s handicapped accessible to accommodate Jennifer’s wheelchair.
The wheelchair is the last thing they see when they look at Jennifer. They see her, not her disease. Looking at the two of us together, people often think I’m the caregiver in our relationship. That’s only half true. For as much as I care for her, she cares for me equally as much.
Together we continue to help each other wander through the ever-changing woulds of MS.
In addition to braving the “what-if” woulds, we are in the thick of the “in-our-faces” woulds; such as: would you give me my shot? Would you skip this event because I don’t have the energy to go out tonight? Would you get the Hoyer lift to help me off the floor? Would we be able to manage our life together if we got any worse?
These are our everyday questions and realities. But we’ve discovered that you never know the answers until you’re in the thick of the woulds and are required to respond.
That’s the beauty and the key to caregiving, whether it’s as a spouse. A parent. A child. A friend.
We always are serving as the helping hand when the other falls — both literally and figuratively. Blazing ahead and warning of the potential pitfalls we experienced when facing similar situations on our own journeys.
So I’m that man sitting on the deck typing as my wife is at the pizzeria with her book club. And I’ll go pick her up in about 20 minutes — not just because her MS makes it so she can no longer drive.
It’s because I’m her caregiver, and I said I would.
Source: acoupletakesonms.com