Thursday, April 29, 2010

Do I look like a FAQ?

Ever watch the ‘dance of the questions’ that flitter around anyone with visible chronic illness or disability? For two decades as a Multiple Sclerosis spouse caregiver I have held a front row seat. 

Any caregiver often assumes the role of medical information officer or family spokesperson.

Maybe it is about taking the heat off the person you care for. How many times can Patti answer the same questions? 

Maybe it is about a phenomena that ‘inquiring minds’ when confronted with a person in a wheelchair and a standing caregiver for some reason seem to often direct their question to the standing person. 

For whatever reason you do field the questions asked and unasked.

While a flawed logic, none the less there is logic to an individual as archetype. I know X, and X has MS, therefore I know MS.

For whatever reason inquiring minds seem drawn to that which they can see touch and feel over the abstract.

Through two decades of observing I have come to my own theory that sometimes it is simply about being remarkable.

Exhaustion and frustration may cloud any self perception that living with X is also about being remarkable.

However able bodied able minded people struggling through a mundane day may see one overcoming the challenges of living with X as extraordinary.

When you are ‘simply remarkable dahling’ … the questions follow you like paparazzi. 

Caregivingly Yours, Patrick Leer
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  1. I used to think wearing a tee-shirt with all the answers would be a good way to take care of this or handing out a card with all the answers there. Saves time and perhaps embarassment on the part of the people asking the questions

    butremember, you are educating them right? and I always welcomed questions from little girls because they were curious but not cruel.


  2. Patrick - the first time we experienced the questions being posed to the caregiver was in Las Vegas on vacation, probably 15 years ago. Skip was still ambulatory for short distances but used a wheelchair for longer treks. We were staying at the Desert Inn (sadly, now gone) and went down on our first morning to the coffee shop for breakfast. I pushed Skip in. The hostess looked at both of us then looked up at me and said, "can she transfer?" as if Skip was deaf and dumb. We still reminisce about that event, our entre into the world of "the person in the wheelchair can't speak for herself."

  3. Cranky, thanks for the memory of the Desert Inn. Great minds must think a like. Pre-MS, (maybe 25 years ago) Patti and I spent several enjoyable days at the Desert Inn.



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