Our Extreme Affliction

[Susan Beausang]

Alopecia made the list!  Of “My Extreme Afflictions” that is.  It’s a series on ABC’s news show, 20/20, in which they are covering some truly bizarre health inflictions.  It was emotionally difficult to watch the alopecia segment, but as it was sandwiched between Extreme Hoarders and children suffering from progeria, we alopecians were provided some important perspective on our condition.

The memories and emotions came back like flood waters.  Georgia van Cuylenburg, an Alopecian from Down Under who has made a documentary called Baby Let Your Hair Hang Down, shared her story, her tears, and new-found joys.  She also reminded me of some of the bizarre and almost ridiculous lengths I also went to in an effort to reverse my condition.  I forewent the scalp burning treatment that Georgia suffered through to no hair growth avail, and instead tried a scalp cream that required saran wrapping my head through the night.  Talk about demeaning!  Then demeaning revealed itself as down right insane when I awoke one morning with saran wrap covering my face and realized I was risking suffocation for the sake of a hair growth dream. We alopecians commonly grasp at these kind of whack treatments, desperate for that non-existent cure.

Like Georgia, I felt and always feel liberated when I give up on the tufts of hair and shave my head clean.  And just when I had liberated myself last year, I had a full head of hair re-sprout.  Emotional FIREWORKS - elation, anticipation, realization, disappointment - disappointment when we realize that it’s not our hair, will never grow beyond that inch, and will fall out again and again.  We will never again look like our former selves.

I was once told that as bad as you think your problems are, if you were made to sit with a group of people with their own problems, you would likely find yourself unwilling to swap your problems for someone else’s.  That was definitely the case with the other extreme afflictions showcased before and after alopecia.  It broke my heart to see those children suffering with progeria, their lives drastically shortened by the disease.  Like Georgia, I am grateful for the way alopecia has opened my heart and mind to the suffering of others.

Susan Beausang, 4Women.com