Thursday, August 29, 2013

Dream outshines Reality

After six years, one would think dreams about my beloved career as an administrator of a science research unit would fade. But, a couple nights ago, the siren song of dreams beckoned. In it, a colleague phoned and asked me to lunch. Once I arrived it was to find a panel of faculty; some I knew and some new to me. The purpose of the lunch was to ask me to return to work to lead the administrative efforts for a new institute. I smiled politely, feeling my usual mix of frustration and invisibility when someone means well but doesn't seem to see “ME.” {That is the wheelchair, the chronic pain, the cognitive decline, the shortened life span, and all that goes with progressive forms of MS} As is the nature of dreams every obstacle I raised was met with well-thought out answers, "we have already spoken to your doctors and arranged your schedule to work from home," "we are hiring an executive assistant to be your eyes and ears," "we don't want what your body can do, just the knowledge and skills that you possess." The overriding theme was that they first saw me as a person with valuable skills and abilities and second as a sick disabled woman whose needs could be managed by administrative steps. 
Reality is a much different kettle of fish. More and more I am seen and treated as a rather child-like marginalized patient who needs to be told how to live. If I mention to a receptionist to repeat details due to my cognitive issues they often switch to a sing song voice and baby talk. Yesterday, at the 11th hour, I cancelled a visit with an elder from my church who I have not met. I apologized for the last minute, said afternoons are tough for me, and that my aide would call him back to reschedule because I have trouble with dates. In what I heard as a condescending voice, he replied, "Let's not forget to take my schedule into account too!" 
Yes let us not forget. That what a well person can do in seconds takes me hours. That a 45 minute trip to the grocery lands me in bed for 3 hours. That all the time, every minute, my arms burn and ache and every movement makes it that much worse. That I can no longer follow simple recipes, write down phone numbers, or remember that you called. 
Most of all, let us not forget that all of the layers of challenge that MS has layered on hasn't changed my personality or my professional knowledge or my social graces.
Too bad I can't go back to work, but then that was just a dream.


Muffie said...

Don't you just love it when the able-bodied seem to be so burdened by our petty little problems? They need a good smack of karma to set them straight!
I, too, have such dreams! I almost hate to wake up and realize it's not true!

Judy said...

Janine, I was so glad to read your blog...mainly because I have been thinking about and praying for you all day.

Your cognitive abilities evidenced by your writing, as always, continue to put mine to shame.

Hang in there. You are surrounded by love.