This is Why I Do What I Do - Uncover Ostomy
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This is Why I Do What I Do

Yesterday it all came back to me.

Yesterday for the first time in a very very long time, I walked down the halls of the 6A unit at the Hospital for Sick Children in downtown Toronto.

That used to be my “hangout” spot.

6A is the GI [gastrointestinal] unit of the hospital where they stick all the kids with Crohn’s or Colitis or things similar to those. I was a regular there for 2 years between the ages of 11-13. I remember when I had to get a room up there, it took days [it was a popular place]. Eventually I became a regular and had my own VIP room waiting for me every time. Sweet, eh?

I went back yesterday because I was asked for help by my old GI doctor. She had emailed me about a 12 year old girl who was in desperate need for surgery but both her and her mother were opposed to getting an ostomy. They needed me to come in and be, in essence, real life “proof” of what surgery can do.

When I first got onto 6A, before seeing the girl, I was met at the front desk by two receptionists who had been working there while I was a patient. The three of us talked and reminisced about how my mom used to come from her job at a different hospital nearby to visit me on her lunch hour and how my dad would wander the halls and the receptionists would tease him at any chance they had. I didn’t like telling them he had passed away…

Anyways, so after we had our little catchup session I was taken down the hall [not the hall I had always been in, which I oddly remembered] to see this girl. But as I’m about to walk into this girl’s room, a mother comes running down the hall and says, “Are you Jessica, the ostomy model? Miss Canada told us all about you, can we talk after?” I was taken completely off guard, but of course I agreed to see her after. [It turns out, one of my friends who was recently crowned Miss Canada Galaxy, Natalie, had met this woman and her young daughter on the train. They had begun discussing how the young girl had an ostomy and Natalie showed them my campaign. I just so happened to be in the hospital when they were there! What a coincidence!]

Anywayssss, I got ready to walk into the room but before I could even step foot into it, this little, extremely emaciated and pale and small and sick 12 year old girl came to her door and stared at me in my super way too tight skinny jeans and said “I can’t see it. Where is it?” I told her to guess where my ostomy was. She guessed wrong.

I walked in with my old Dr. and stood in front of her and her mom and began to just talk. I explained my medical past and all the things I had gone through and hoped that this would help the girl and her mother relate. It seemed to work. My Dr. then quietly excused herself and I was left to continue talking to the two. They both had tons of questions and wanted to know everything they could. I wasn’t surprised they had so many questions as they kept saying “well on the internet we saw…”

Never look on the internet for stuff like this.

So an hour and half later both the mom and the girl seem to be out of questions. I’m just about done and I start to talk about ostomy camp and how I was volunteering there this summer and the girl says, “Ostomy camp?! I want to go to ostomy camp!”

I had clearly won her over.

I think I helped saved her life.

Jessica Grossman
info@uncoverostomy.org
3 Comments
  • Jearlean Taylor
    Posted at 15:36h, 19 May

    Thank you Jessica for sharing

    I AM PRETTY GIRL BLUES

    Pretty girl blues; was this label I put on myself or allowed others to give me? Why did I allow myself to hide deep in my pain? I hid behind my pretty looks, clothes, and the truth within. My outer beauty always shined, but I was suffering on the inside with low self-esteem, pity, and unhappiness. Could my beauty cover up my hurt? I desperately wanted to be accepted. Yes, I have a darling personality and nobody could take that away, but was it enough to mend the hurt and internal pain? My parent’s sacrificed and cared for all my brothers and sisters, but would they anticipate one of their children developing cancer at the age of two.
    We are familiar with several types of cancer, but a baby developing this type (Rhabdomyosarcoma) was unheard of. This was such a rare form of cancer the doctors’ thought I would not live to celebrate my 3rd birthday. How could this be and why? Most importantly how would doctor’s care for me? My care began at the University Maryland Hospital in Baltimore, but my family was later advised to seek a second opinion at Sloan Kettering Cancer Hospital in New York City. The majority of my childhood and adolescent years are spent in New York City. At Sloan Kettering I would have many surgeries, chemotherapy, and radiation treatments. Because of the cancer, reconstructive surgery was not optional. This procedure would cause me to have a colostomy and ileostomy bag to aid my bladder and bowel function for the rest of my life. Even after that surgeries seem to never stop. Imagine growing up wearing two bags, being teased and set aside because you can not tell if it is time to change your bags. “Hey what is that smell”, they would say. I had incidents in school and when I did not know how to handle these situations it really caused my low self-esteem. I had it bad. My hearts desire was to be like other children. To be teased by my peers was heart breaking.

    Becoming a teenager and maturing into a young adult were difficult years. I later involved myself in boyfriends, but when they got close I would break it off, fearing they would not understand. I had a method of trying to hide “the secret”. Someone will understand, I thought. It seem like no one did, what a fool I felt like. Continuing to hide behind my family, friends, and pretty looks, I developed the craft of covering and dressing up the outside. This disease causes me to hide deep in my pain. Questions would arise. How would I cope? How would I handle what life have dealt me? Can I continue to hide “the secret”? So I asked myself, “Why do I feel so blue, and how can I change the way I am feeling”

    Surely, there was an answer. I could not imagine, but my relationship with God would change my life. He healed me from cancer. I am His miracle child. He protected and assured me everything was going to be alright. God not only healed my physical body, but my spirit and mind. That is what needed to be healed desperately. I am thankful for that spiritual process which took place within me. My insecurities did not change overnight, but I learned how to be a survivor. The question was not “Why Me”, but “Why Not Me”. This “secret” would no longer be a secret, but a triumphant story. My trials and tribulations tested my faith, but it made me stronger. God instilled in me an inner strength I thought I did not have. This journey has taught me so much and I will use this experience for my aspirations in life.

    One of my biggest dreams is to walk that big catwalk as a fashion model. I know my situation is unusual in this modeling industry, but I thank God for opening closed doors. Many people thought it would not happen, considering my minor restrictions. God can do all things. He has brought me this far and I will continue to believe all things are possible. To see the outer beauty you could never tell I live with these adversities. After all I have gone through, who would have thought becoming a fashion model, inspirational writer, motivational speaker, and owner of a Christian based modeling company was in the plans for me.

    This story may seem personal, but because of my adversities in life I will continue to reach out, encourage, uplift, listen, understand, and help those in need. My faith and trust in God makes all the difference. I am thankful for my family, friends, and most of all angels that watches over me.

    Today, at 42 years old I am blessed with a wonderful husband of 14 years that appreciates, understands, and accepts me for me. I will continue to have one-colostomy bag and the use of a self-catheter for the rest of my life. I am very thankful for this journey. I am a Fashion Model, WOW; sometimes I can not believe it. As I look back over my life I would not change anything. My light will continue to shine so others can witness and know they can overcome obstacles. Do not be ashamed or afraid to tell your story because you never know how “blue” someone may feel. I can and will live a full and vibrant life.

  • Josh Lipovetsky
    Posted at 01:57h, 20 May

    Wow, that was a powerful story. I’m so glad that you had the opportunity, to help her see the positives in her situation, and save her life! Thanks for being a great role model. I would love to have the opportunity to do the same, one day! Congrats!

    I’m so jealous of your VIP Room, Jess. 🙂

    My floor was 8 South, at CHOP. I must’ve been to half of the 24 rooms on the floor. Made a ton of friends with nurses/doctors/staff. It was a whole bunch of fun, minus the physical disease. What I have noticed about hospitals: Some of the most amazing people you will meet, all work at hospitals. Seriously, I love all of the people there.

    Even after everything that people with UC/Crohn’s have to go through, we do make a lot of good friends. And that is probably the best part.

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