Sunday, May 27, 2012

My Life with Crohn's Disease: "Kiss Me Goodbye"

By Laurel Schwartz Monday, April 07, 2008

"Kiss me good bye, I'm defying gravity, and you can't pull me down!!!" These words came from the mouth of a girl most of America has grown very well acquainted with over the years. They were said by the Wicked Witch of The West from the Wizard of Oz. When most people think of the Wicked Witch of the West, they think of the quintessential Margaret Hamilton zooming around on her broomstick raising goose-bumps by shrieking at the top of her lungs, "I'll get you my pretty and your little dog too!" But, we have never stopped to think about what came before.

 

In 2003, the musical Wicked opened on Broadway. Wicked is the untold story of the Witches of Oz and it chronicles the life of Elphaba, the Wicked Witch, before she became wicked. Elphaba lived a very challenging childhood. Her green skin made her the object of ridicule of many of her peers. In her teen years, Elphaba discovers that she has some very unique powers that could be used for good. The song Defying Gravity, falls at the end of the first act of the musical when Eplphaba decides that she is not going to let anyone put her down anymore and she is literally going to "defy gravity"!

 

Now, what would you say if I said that I have learned to fly? Science has proven that it is physically impossible to flap my arms and levitate, but I have learned to fly in a different way. I have learned how to grasp my broomstick firmly by its handle and soar above the expectations of the people around me.

 

Laurel and her family
I was diagnosed with Crohn's Disease in 2002, when I was nine years old. I had it in my trachea, bones, joints, bladder, mouth and gut. After I had been sick for six months I went to The Mayo Clinic, where I was diagnosed. At first, I was put on Prednisone for about 9 months. During that time I acquired bad sleeping and eating habits. Doctors were finally able to stop the Prednisone after starting Remicade and 6MP. Since then, I have been on and off of steroids over the years. This past year, I missed one month of school because I was in the hospital with a flare. Now I am on Modulen IBD, a liquid diet to help me with a flare and keep me off of steroids.

 

 

I was forced to quit my sports and dance classes. My disease was pulling me down and forcing me to stop doing the things that I treasured most. But, instead of living with it and accepting that I couldn't do everything that other people could, I wanted to continue to lead a normal life. Instead of participating in sports, I turned to acting and musical theater. While I can't play sports anymore, I have found a love for something equally, if not more thrilling. I have been singing in my school choir for 5 years. I have participated in all of the plays at my school. I have also played violin since I was five and I have been in orchestra for the past four years.

 

Laurel and friend I have also learned how to fly from volunteering for the Crohn's and Colitis Foundation of America (CCFA). Over the years, I have found my voice within the CCFA community. I am the current Youth Ambassador for my local chapter of the CCFA. I have shared my story at many of the CCFA fundraisers. I have created a video chronicling my journey with this disease that has been shared at fundraisers and education conferences and to promote awareness about the disease across America and the UK. After contacting local media, I appeared on in the newspaper and on TV, telling my story and spreading awareness.

Anonymous
CAM
4/ 7/08 4:25pm

Hi Laurel,

 

My name is Camilo and I just finished reading your story. Frankly, I found it quite inspiring how you have managed to find so much strength in something that usually debilitates most. You did not chose to have Crohn's disease, but you have chosen to try to make Crohn's disease a positive part of your life with everything you do to help yourself and others that have Crohn's disease and similar conditions. I am currently pursuing a career in medicine and I hope to be able to meet more people like yourself, so that I can try to find what it is that drives you to such a great degree and attempt to encourage my lest fortunate, disheartned, patients to do the same. Thank you once again for sharing your story, I thoroughly enjoyed reading about all of your accomplishments--keep flying!

 

CAM

Anonymous
carole mayer
4/10/08 11:06pm

you are truly a remarkable girl.....I am an "old" friend of your grandmother, once a room-mate of hers at the University of Connecticut.  She sent me this website because she wanted to share your story with me.  She is so proud of you and wanted to me to know what you've been doing.  Keep up the good work, because as you said...you can't be pulled down.  You are truly an inspiration.

Carole 

Anonymous
Ellis Lichtfuss
6/14/08 9:03pm

I love your article. it's Ellis by the way. From your acting class at stepping stone. last summer. :)

This made me cry. It was so inspirational. Whenever we hung out i couldn't even tell you had Crohn's disease even after you told me. Acting is something you do great. We had so much fun.

i hope you do it again this summer at stepping stone!

:)

 

miss you and stay strong girl.

just like Miss Elphaba says.

 

Idina Menzel would be proud!

 

 

Anonymous
Laurel Schwartz
7/ 2/08 2:56pm

Hi Ellis!

 

I tried emailing, but you must have changed your address...

 

Anyways, I wanted to thank you for that beautiful comment.  It means a lot to me to know that my friends do think of me any differently.

 

I hope to see you next week at stepping stone!  It should be very fun!

 

See you soon!

 

xoxo,

Laurel

 

ps- Did you hear that Idina Menzel is coming to the Fitzgerald theater?

Anonymous
Ellis Lichtfuss
7/23/08 12:03am

oh heyy i tried texting you but it must not have gone through.

i got accepted to jrp so i had to drop stepping stone. i felt so bad.

:(

but ily girl and you're so strong!

 

my new email is ellislichtfuss@yahoo.com

we need to go to a movie or something.

i miss you!

 

or we need to do another sleepover but just me and you!

 

i did hear that I love Idina and I know you do too

Anonymous
Kate Sandvik
2/ 9/09 1:10am

Laurel-

Hey girl! It's Kate from Broadway Bound! I know you know it but you're awesome! I love the whole defying gravity theme. Beautiful article. It made me cry, because I just love you so much!!!! I miss hanging out with you! I'm so proud to know you! How can I get a bracelet from your fundraiser? You're my hero!

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By Laurel Schwartz— Last Modified: 12/20/10, First Published: 04/07/08