Saturday, January 24, 2009


A friend of mine talked to me about one of her family members who has MS... she said that she never talked much about her illness and that others tended to act as if it wasn't there...
This was part of my response to her....

MS is... or can be... such an invisible culprit. For some of us, there aren't a lot of outward signs... to the casual observer, it seems that indeed, nothing IS wrong... so it's easy for people to pretend that nothing is there.

My children... who obviously knew me 'before MS' are so keyed into me that they often notice that something is 'off' even before it completely registers with me... and that is such a blessing. They'll step in and say, "Mom, you're getting tired... or too warm... or shaky... or whatever" and pick up on what I'm doing.

Fatigue is invisible... as are most muscle spasms. To look at me, you would never know that on the right side of my body, I've lost about 30% of my original strength... or that one of my eyes doesn't always judge perception correctly... or that my coordination tanks if I overheat... or a dozen other things.

I don't say any of this in a spirit of "Poor Me"... because honestly, I don't feel that way at all. By the time I was handed a definitive MS diagnosis, it was a relief... most of the other things the doctors had been testing for involved my imminent death. And at the time, I was in a disaster of a marriage (yep, part of the long, messy story) and MS was a cake-walk next to the day-to-day of that.

No... the reason I say these things is perhaps to shine some light on your loved one. Because of her positive attitude, she most likely never points out the 'ouchies' to anyone... and unless she has extremely perceptive people in her life, chances are no one ever notices. The fact that you have the balls to say it out loud and acknowledge her reality is a precious gift that you give her. In a world where most people choose to still expect her to move mountains and smile continually, you give her a place where it's safe to say... "Not such a great day today"

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