Sunday, March 31, 2013

I Used to Be Pretty

I used to be pretty.  I know this.  Not in any vain way, but I was aware of how I looked. I had the confidence to approach somebody at a bar.  The confidence to boldly online date.  The knowledge that when somebody of the opposite sex looked at me for an extended period of time, perhaps it was out of interest.

Yesterday when I walked down the street for the first time in 30 days after leaving the Burn Unit ICU at the University of Colorado Hospital, people starred.  And it wasn’t because I was pretty.  I am damaged.  I look strange.  I have considered starting a trend.  An eyelashless, rash-bodied, anorexic-alien inspired big hat massive sunglasses trend.  Or writing a sketch show:  Girls without Eyelashes. 

See, yesterday when I walked down the street my fellow passerby’s stared because something was off and they knew it.  For one thing I do not have eyelashes.  Secondly my face is covered in a red burned rash of new baby skin.   Third my face is lathered in cream and grease.  My eyes must endure 10 drops a day and a clear barrier of gooey protectant that oozes down my face.   I am not pretty.   I am a freak.  I am different.  I perhaps could get by as a super intense downhill skier for a bit, but I believe that persona will change when I travel to Houston, or New York.

I am afraid.  I am afraid that I am now truly ugly.   I am afraid that anybody who once loved me will not think twice about their decision to move on.  I am afraid that I have been vain and relied on my looks.  I mentioned to my friends that perhaps I should take this opportunity to become more entertaining.   Or maybe I should get back into stand up.  I could get through this by making fun of myself.  My physical shortcomings.   My new chicken legs, childlike figure, and bug eyes.  I could point and laugh at how I look like I have the plague, or smallpox, or some bizarre African STD. 

I am at a loss because I used to write about the single life.  The glamorous life.  The being young and twenty something life of a New Yorker.   I am afraid that I will be driven to the young and twenty something life of a hermit.  Or a has been.  Or a once budding actress.  Nobody wants to hire a chick that looks sickly and is missing eye lashes.  Nobody wants to date that.  Nobody wants to kiss that.  And I am truly afraid that nobody wants to tap that.  That I am not pretty.  That I have lost my mojo.   That I will have to rely souly on my wit and sympathy to get by.  But that pisses me off, because that is not me. 

 I am afraid that the boy that I liked before I got Stevens Johnsons Syndrome will no longer like me.  I am afraid that he will see my face and body for the first time and be disgusted.   I am afraid that he will make excuses to not see me and “just want to be friends”.  I am also afraid that my ex-boyfriend doesn’t know what happened to me. 

It’s stupid.  What are you supposed to do?  Message somebody on Linked In (because you are no longer facebook friends) and be like,

“Hey, just wanted to let you know I spent the past month in a coma and almost died.  Oh.  And now I look like an unborn fetus with downs.  You should probably miss me and probably be kicking yourself that you dumped me and shagged your coworker a week later.  You should probably feel sorry for me.  Or say sorry.   Or feel guilty in some way for your lack or contact and/or respect of a broken heart.  You should probably have agreed to marrying me when we couldn’t have been together.  Because I almost died.  I just wanted to tell you that.  

My body blistered over and my face oozed blood and my parents were told to prepare for the worst.   You didn’t know.  You were working for you bank and had no idea, but you should have known.  You should have been aware.  You should be aware when somebody you once loved falls of the map.   Completely.  When they disappear from the stratosphere.  When they almost die.   When the last time you talked to me would have been a quippy message on linked in.  Because that’s fucked.  It really is.”

That’s what I should write.  Right?  I should take the hurt, desperate approach.  But what do you do when you are in a position of something horrible happening to you, but you have physically released ties with others?  When there are people in the world that you wished knew? 

 I know that a few of my friends were trying to play down my illness.  I am aware of this after the fact, but I need them to know.   I need them to know that I very well could not be here right now.  I need them to know that I suffered, greatly.   I need them to know that I was about to go blind.  That I was on life support.  That I almost never spoke to them again.  I don’t want to live in a place of remorse or vanity or regret, but there is this thing called PTSD. 

When I spoke to the SJS survivor Emily about her experiences, she mentioned having to go to groups for Post Traumatic Stress Disorder.  See, now that freaks me out.  Because a large part of me wants to forget the blip.  March of 2013.  The month that I don’t remember.   The month when my body decided to burn me from the inside out.  The month that you saved me.  Your thoughts.  Your prayers.  Your love.  You.  Saved me. 

I do not take that lightly.  Because when it boils down to it my doctor told me that the thing that stopped the illness was my own body.  The meds they injected into my system were too late.  They could only do so much.  Life support can only do so much.  Steroids can only do so much when dealing with a rogue disorder.   So I believe it.  It is Easter, and I have had my brush with death for the month so I think that it is okay to talk about faith.  

You.  My friend.  Saved my life.  

Because you believed in me.   Because you prayed for me.  Because I had the Baptists, Unitarians, Agnostics, Catholics, Jews, Methodists, Lutherans, Presbyterians, Spiritual Healers, Yogis,  non-denominational and atheists praying for me.  Because you sent your love.  And your thoughts.  And I truly believe that I was strong because of you.  That I came through for you. 

The Universe works in mysterious ways. 

  I believe that my brother was meant to get this disease.  He was on the medication first, and by fluke I was prescribed Lamictal for depression, not knowing it’s potential deadly side affects.  Not knowing that I was put on the same medication that my brother had been warned, “Could burn off your skin”.  I feel this strange sensation that in a greater cosmic sense, I took one for the team.  I experienced psychosis and pain to further understand what it is that my brother and others like my brother go through on a daily basis.  I believe that this has been a test.  A test of strength.   A test of faith.  A test of love.  A test of understanding.  There is no way to not come out of a situation like this stronger.  With a shifted sense of purpose. 

So maybe, at the moment, I am not so pretty.   But I think that is probably doesn’t matter.  People will stare.  They will stare at me and wonder.  They will rack their brains for why I look so different.  So scary.  So alien.  And I will be able to tell them.  I will be able to educate about Stevens Johnsons Syndrome.   I will be able to spread the word about my new production company: The 26 Percent, that is dedicating itself to telling the stories of those who suffer from mental illness.   Or telling the stories of those who do not have a voice or the means to do so.  Maybe my illness will make me more approachable.  More likeable.  More relatable.   Maybe people who suffer greatly will feel a calm when speaking to somebody who doesn’t look quite right.  

I will heal.  I have faith in that. 

  When SJS Survivor Emily spoke to me, I know that her heart was in the right place but her dose of reality terrified me.  Months.  A year.  The time to heal. The time to slow down.

I don’t know how to slow down.  I got out of the hospital and got on the News.  I flew out my friends to start changing the world.  So maybe I can slow down in the non-traditional, “I’ll hang out in Texas for a bit and maybe try to run a marathon and raise awareness for the work we are trying to do.”  

Last night a father wrote on the wall of 26 Percent Productions.  It was under the ABC News article we had released.

He said this: “We had a similar incident with our son. For days nobody knew what he had. It wasn't until a doctor who was examining his eyes alerted everyone he had SJS. He was immediately transferred to a burn unit, but unfortunately didn't survive the ordeal. Our thoughts and prayers are with you.---.”

This man and his son are why I am writing.  Are why we are filming.  Are why this matters.  Because people don’t know.  Doctors don’t know.  And people go misdiagnosed.  And are told by the urgent care centers that they have Herpes and need to get their lives in order.  Or they have the flu.  Or some other odd combination of calamities. 

So we must push on.  We must fight.  We must believe in something greater than ourselves.  We must have faith.   Faith in love.  Faith in humanity.  Faith in the human condition.  Faith in healing.  Faith in energy.  And I will say it.  Faith in God.  Whatever your God may be.  A man with a grey flowing beard.  A strong willed woman.  A sense of something bigger.  Mother earth.  The human spirit.  A yoga inspired guru.  We must have faith.  Today.  Tomorrow.   For the future.  We must believe that the world can change.  That we can shift human perception.  That we can understand what it is like to walk in another’s shoes.  To take on another’s burden. 

That is what is beautiful.  That is what is pretty.  To become a person of greater purpose.  To want to change the world.  I may not have my face.  Or my body.  Or even my freaking eyelashes.  But I have a desire to make a change and I ask you to join me.  Join us.  Join our cause.  Our fight for understanding.  Our desire to end stigma and educate upon the human condition.  For myself.  For my brother.  For my family.  For your family.  For your best friend.  For that kid you went to school with.  For the self-loather and self-lover.   For your brother or sister or mother or father.   Join us in understanding.  

What is it.  Truly.  What does it mean.  To be Normal?

Join us in our fight and follow 26 Percent Productions.  

26 percent of Americans suffer from a diagnosable mental illness in a given year. We are filmmakers who want you to ask yourself: What is 'normal'?

Check out our News Article on ABC


  1. Jojo you are so incredibly strong. I have run with you and know you have endless endurance- physically and emotionally. You are going to be ok because you will make yourself be ok. You will heal because of your strength. This link is for the last paragraph you wrote:

    Sending you lots of love xxx

  2. You have a beautiful heart, and thats what truly matters.

    -Lizzy (not quite anonymous)

  3. This is truly amazing. You are an inspiration.

  4. Jo, you are beautiful. This is beautiful. I won't pretend I know what you're going through, but I recovered from a long illness that left me looking like a freak (a heart problem - I had a bunch of surgeries in my early 20s and got down to 90-something lbs on my 5'7 frame, boy did I hear whispers everywhere I went) so I do know what it's like to walk down the street and feel crazy self-conscious. It did take years to get back to (almost) full-strength, but I'm a survivor now and so are you. You're on your way and you're going to make a difference, and that is as beautiful as it gets :)

  5. Jo - I have only just heard your nightmare - what can I say but my heart and love go out to you - be proud of yourself and hold your head high - you are a survivor - you used to be pretty now you are beautiful

    ness - also not quite anonymous

  6. beautifully written - chin up! I suffered SJS at the age of 7. Today (AT 36) I havent a single scar or marking on my body to show for the horrible ordeal that almost took my life - I pray the same for you. God bless - you are a Surviver and beautiful! Faith

  7. You are still beautiful. Inside and out. I dont know what you are experiencing right now, but I do know God knows you can handle it. You are a strong, young, vibrant woman with a vivid future ahead. I wish you all the success and so much more. I will continue to pray for you and your beautiful future.

    Kysha :)

  8. I am so very happy that you have made it through! You are alive and able to walk down that street! You are beautiful. True beauty really is about what radiates from within. Your inner energy and character and love. Look at that burned soldier that was on dancing with the stars.... all you saw was his spark and character and was instantly drawn to him. You will do wonderful things with this new life, I just know it. But I do want to point out that... you were still a little hesitant to call it faith in God. That is what got you through! No need to be afraid to say it. God heard the prayers of your friends. Not any "higher power". The God of Abraham, through Jesus... The prayers prayed through Jesus the Son to the only true God... and it was not the energy from such prayers... it was GOD. If you have never prayed to accept Jesus as your personal savior... do that today... He has His hand extended to you and has already carried you with His arms. Pray this: Dear Lord, I know that I have sinned, as we all do. But I know that you died on the cross to save us from our sins. Forgive me of my sins and I humbly ask that you come into my life and fill my being with your spirit. I believe that you are God's son, Jesus. I will make you my Lord, on which I will rely and grow closer to day by day... Amen..... You are now a new creation and will know it immediately.... love to you dear girl

  9. Hi Josephine,

    My daughter Julie had Stevens - Johnson Syndrome when she was 11 months old. Unfortunately they didn't use amniotic membrane grafts back then and she suffered a great deal of ocular damage. We are so happy that you were treated by Dr. Gregory. He is amazing and one of the most knowledgeable cornea specialist in treating SJS eyes in the United States. Julie is now 19. She recently had another adverse drug reaction. We were right next door to you at Denver Children's unaware that you were so close by. In 1996 we founded the Stevens Johnson Syndrome Foundation to provide support and resources and spread SJS Awareness. Since then we have spoken with thousands of SJS families around the world. You are not alone Josephine. We have hundreds of people praying for you. You will get better and the scars will fade. You are still beautiful and to those of us that did not know you before, we not only see your outer beauty but we see your inner beauty as well.

    With warmest regards,

    Jean McCawley

  10. Josephine, this post hits home. Although my daughter was only 6 when she had SJS, I feel that your words are what's in her heart now that she is 16. She is also missing her eyelashes, discharge is always coming out of her eyes, she is always coughing and her nose is forever runny. She is always questioning her beauty and lashes out in anger at the people who love her the most because she can't lash out at every single person that stares at her in the street like she is from another planet. I understand her and some of her feelings thankss to you. Time will heal your scars....your soul is already beautiful.

    1. I'd like to help your daughter. I had SJS when I was 10 and am now 40. I still don't feel beautiful all the time, but I'v elearned to cope.

      I'm on the SJS Foundation page under California.


    2. Jo, WOW. The raw honesty of your words reminded me of the myriad of emotions I've been navigating for the last 30 years. Thank you.

      You know you are beautiful. But you also know how you feel when others don't see you that way initially. I will not minimize that, because I still feel it at times.

      Harness your strength, but don't feel that you always have to be strong. It is only when you grieve what you have lost that you can open yourself up to what you have gained - an inner resolve that lights up the world and makes it a more beautiful place.

  11. You are so brave. Do not give up, continue to use your experience for something so much greater than yourself. Personally, I believe when we are put through the fire and come out on the other side, we have been saved for a greater purpose. God allows everything for a reason and you have been chosen to make a difference. It's a big responsibility and I have great faith that you will do great things. What is truly beautiful is that you have realized this and are working towards something that will make a difference.

    Faith, Hope & Love,

  12. As a complete stranger, I want to thank you for your courage to share your story. Your strength is something to be admired by everyone. Not many of us will understand what you're going through, but we have to thank you for shining light on something besides yourself. I wish you speedy recovery. I'm glad you made it out of the hospital. With time, your journey will only become more magical and fulfilling. You are still beautiful.