My disease is progressive meaning my life has dramatically changed over the years as my body is faced with more and more difficult adjustments. And even when my disease was not as challenging as it is now, I still saw others who weren’t disabled as being better than I was and with a perfect future that I could never have.

High School

My thoughts were whirling around in my head as if a tornado had taken residence there, how do I tell him something I don’t even want to admit to myself. “I’m sick and I’m going to get sicker until I die, the doctors have given me until I’m 30 years old”, is what I should have said, but afraid I would start crying before I got it all out I simply said “I’m dying”. A little dramatic, but I wanted him to understand that my life would be dramatic.

“Beauty is in the eye of the beholder”

What is beautiful or perfect isn’t for us to decide, but someone wiser who has created true perfection and seen the purest forms of beauty.

The meaning of perfection is the condition, state, or quality of being free or as free as possible from all flaws or defects. I have never thought of perfection as being free, but it is a beautiful way of looking at it. Maybe being free of what others think is a sort of perfection.

Two years after I told Stephen my big dramatic secret (which I think he some how already knew), he married me. Turns out he didn’t want perfection, he just wanted me!!!

Stephen & Alicia Weston

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