Our Best of Possible Worlds
“How do you deal the envy you may feel toward others who lead seemingly “normal” lives?”
Frankly I couldn’t even tell you what ‘normal’ is anymore. People who devote their life to caring for a family member, risk ending up living under the bridge. People who devote their life to a career retire. U.S. Senator Sheldon Whitehouse (D-RI) once remarked “Families may be one accident, injury, or diagnosis away from bankruptcy.”
Even within the MS community there are families who lead seemingly ‘normal’ lives to us. Pushing Patti’s wheelchair through the last 20 years I’ve slalomed through sidewalks of people at MS walks.
Every MS caregiver is different and every family brings different variables to the equation. Envy was far less a factor in the beginning as my previous 10 years on the road seeing the country and the world with popular rock n’ roll bands usually left most people ‘envious’ of my life to date.
Showing my age here, I attended segregated schools until I went to college. I have never forgotten one of my first conversations with a student with a different skin color – “your world” was her concise observation to my rambling questions about how she felt about everything.
Bottom line, it is an able-bodied, able-minded world. We try to survive in “their world”. Yet in reality we exist in our best of possible worlds.
No, we do not own a fancy new car, but we own a functional used wheelchair accessible van. Which, truth be told, often draws more attention from inquiring minds than a luxury car.
Let’s face it – living with severe Multiple Sclerosis also isolates you as a family. Friends from the time before MS drifted away. We all have little in common anymore.
Through the decades it alternated between feeling like proverbial beggars at the window to strangers in a strange land. As a caregiver spouse it was my job to make our best of possible worlds better.
Our exception was in my basically single parenting our daughter. She needed to be raised to live and succeed in an able-bodied able-minded world.
In the early 90’s in one of our excursions to our public library, I found a misfiled copy of “Mainstay: For The Well Spouse Of The Chronically Ill”, written by Zane Kotker under the nom de plume, Maggie Strong, which chronicled the story of a family living with progressive MS.
In hindsight she offered that the immediate needs of the children MUST be the focus of the relationship, not MS. Accepting this premise in the now (rather than hindsight) we began to carve out ‘MS time’ and ‘Well time’.
Putting ‘MS time’ aside somewhat leveled the playing field when it came to ‘normal lives’. With Patti safely attended either at home or at her parents’ house, I would head out with our daughter for well family time and vacations such as hiking in the mountains or the beach.
Once even ‘MS time’ was the envy of an entire pre-school haunted hay ride. Earlier that day I had hernia surgery from lifting Patti’s scooter in and out of our station wagon. After interviewing a couple of surgeons, I found a retired military guy who had done years of battlefield sutures in Vietnam designed to “hold” and get a soldier on his feet. Arriving on site that evening we discovered the hay wagon was not accessible. I couldn’t allow our daughter to be heartbroken, so hoisting her on my shoulders I pushed and pulled Patti’s wheelchair through the fields behind the hay wagon. Surprised actors began improvising interacting with us. My blood began oozing around my battlefield sutures and through my shirt, as our daughter’s classmates squealed with delight from the hay wagon.
Depending on the caregiver, yes even our best of possible worlds can be envied…if only for a moment.
Editor’s note: We are extremely saddened to say that on November 11, 2013, Patrick Leer passed away. Patrick was an essential member of the MultipleSclerosis.net community, providing unique insight and perspective as the primary caregiver to his wife, who has MS. His heartful writing continues to reach many. He is deeply missed.