Living with MS as a Family Ripples Through Both Time & Lives
We were a ‘normal’ family of three on Thanksgiving Eve 1989 as Patti and I played with our 18 month old daughter. Well maybe not exactly ‘normal’ as our daughter took turns on her indoor slide with the Butterball Turkey...
Thanksgiving Morning Patti awoke unable to walk and barely able to see or talk.
Yeah Patti had an episode of tingling fingers and numbness that affected work back in 1985 but after longer testing longer than the symptom episode, a neurologist concluded ‘probable’ MS.
No symptoms ever reappeared and life returned to our normal, two incomes and two cats in the yard.
Incredulously that Thanksgiving morning a call to her neurologist was actually answered and Patti was admitted to the hospital for an acute exacerbation of Multiple Sclerosis.
Simultaneously I was juggling the changing, dressing, and holding tight for our 18 month old daughter through all this.
I was scared but looking into our daughter’s eyes I intuitively knew the paradigm of parenting and our family had just shifted.
Dads don’t get to raise daughters alone, unless...
Though that first decade I was stuck in this mind-numbing contradiction: I would have given anything to have pre-MS Patti back yet I was gifted something I never imagined possible. The proverbial "when one door closes another opens."
Falling into a world of dresses and Barbie Dolls I savored every day and created every opportunity to keep Patti a part of it. Well, she never did change another diaper in her life, but that was OK because that early training helped me later when it was her Mom I would need to change and dress.
Time never stops. At age 40 I’m taking ice skating lessons to keep up with our daughter - soon to be good enough that the rinks would let us push Patti around in her wheelchair, keeping Mom part of her daughter’s life. This stuff never happens...not even in fiction.
Recently I stumbled on an old binder given to me by our daughter’s elementary school as a thank you for years of help. Drawings from students, letters from teachers and other parents fill the pages. Let’s face it - as a a kid, when one of your parents cannot help you it’s a scary thing. In school, where just being different is bad enough, the ripples of MS are making you swim upstream each day.
In retrospect I became over-involved to level the playing field in my mind. We were living with MS as a family; MS continued to gnaw at Patti’s abilities so it was up to me to carry us on my back for a while. As John Wayne’s character, Ringo Kid, in Stagecoach remarked “A man’s got to do what a man’s got to do.”
Always working and creating opportunities, somehow I kept Patti involved and this was pre-ADA. I was joined by extraordinary Principal who even got a janitor’s closet converted to what was probably the first accessible commode in the school system.
Before I lose the point, these drawings and letters reflect a ripple in time of an awareness of “abilities” not disabilities pre-ADA from one family living with MS.
MS gnaws at those diagnosed and stepping back can almost make sense. One could write litanies of what MS can steal or deny, but when family holds tight ‘living with MS as a family’ can actually teach and inspire others.
I’m no stary eyed dreamer, MS sucks. But long ago in those days of dial up Usenet newsgroups. long before disease modifying meds, and even a promise of extraordinary and inovative sites like MultipleSclerosis.net....we were a family both before and after MS.
Having to live and learn in the real world by trial and error to live with MS as a family was life changing.
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.
I have the hardest time with my MS during the following season: