Letter 2: What I would say to Skeletal Dysplasia

Dear Skeletal Dysplasia:

I've written a lot of letters in my life.  I've written letters to people that I love and never mailed them.  I've written letters to politians, editors, friends, neighbors and organizations.

I never thought I would write a letter to a disease.  Until today.

You can't hear me, you can't understand.  No one expects you to; you just exist as a disease.  I can't feel you or hear you or talk to you, but you have been one of the biggest constants in my life.  If you were a person I bumped into on the street, I wonder what you would look like.  Would you be the scary old man who humped over on a cane?  Would you be a mysterious woman?  Would you look deep into my eyes; so deep that I could see your soul?  Would you even have a soul?

Yet then there is a more important question - what would I do if I met you?  I think I would spit on your face and scream "I hate you!" just to get the anger off my chest for possessing me all this time. Then I would run away.  I would not run out of fear; I would run to have the simple thrill of the last word.  I will win.


I'm glad I would never get to meet you in person, because if you were a person, I'd have to forgive you.  And I just can't.  Do you know what it is like to have people watch you suffer?  No.  Do you understand what it feels like to be teased as a child for a mysterious disease you did not sign up for?  No.  Do you know what it's like to spend your life in pain?  No.  Do you cringe getting the "what's wrong with you?" question?  No.

The reason you don't understand this pain is because you've caused it in me and managed to escape free.  You will never understand what you did.  And I am glad you are only a disease; because if you were a person you could never look at yourself in the mirror.

But I will not say that you've ruined my life.  First, because I have lived an incredible life, and secondly, because I don't want to give you that much credit.  You don't have all power over me.  You can't ruin me that easily.

You torture me with questions.  I wonder who I would have been without you.  The doctors tell me I would have been tall and athletic.  Whenever I see a tall, athletic girl on the cover of a magazine, I think "that's me in another life."  Perhaps one of the worst griefs of all is contemplating who we might have been if things are different.  I try not to think about it anymore.  Being four feet and eleven inches tall isn't so bad, and through many years, I've grown more content being myself with you along.

It has been a great accomplishment to look in the mirror and see myself instead of seeing you.

I have a distinct memory with you from high school biology class.  In fact, I think I read something about you in my textbook once.  My teacher said that it's impossible to walk without cartilage between your bones.  When I raised my hand and told her about you - and that you've caused me to walk that way my whole life - she didn't believe me.  Most "experts" don't.

You were also there while I was going through message therapy, and the therapist asked me about the scars you gave me.  She gasped when she asked, "did you have surgery here?"  Those scars have been there since I was twelve years old, and they are probably permanent.  I remember after the surgery was over, the surgeon admitted the surgery was a mistake, and I once was angry over a pointless surgery and permanent scars for awhile.  And even though I have finally let that go, it hurts when people point it out.  I looked at my therapist and told her they were not scars, they were beauty marks.  She never asked about my marks again.

You have changed everything.  You've changed my childhood, my family, my relationships, my fears, my dreams, my self-image, my career, my personality.  My spirituality.

The truth is, I cannot completely hate you.  You are part of who I am.  But even though I can be at peace with you, I will not accept your lies.  I refuse to believe that I am unworthy of love, that I'm un-beautiful and that I will never be healed.  

It's funny how much your pain has transformed my faith.  Pain is like being poor - it tells you what you're really made out of.  Because lets be honest, it's easy to say you love God when you have a lot of money.  It's easy to love God when you're always feeling well.  It's those times when I feel terrible, when I don't know how I will move forward that is the litmus test of my faith.  If someone wants to know if their faith is real, try getting a painful and incurable disease and you'll know if you are genuine soon enough.

You have taught me that everyday is a gift, and yet I should still wait for an even greater gift.  My spirit is in God's image - and it's far too resilient to be taken down by you.  One day I will fly away to a place where you cannot reach.

SD - where is your victory?  Where is your sting?

Pain divides people into two camps.  People who are beautiful despite their pain, and people who are beautiful because of it.  I hope that one day I can say I am the latter.

SD, I don't know who you are.  I cannot feel you, taste you, see you, speak to you, or know you.  But I just want to you to know that you will not win.  I'm already spoken for by Someone who went through the ultimate pain so that one day I would be free.  He has the last word.

Sincerely,

Ashley Renee