Open Minded Teens – Class of 2010

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This week I was a guest speaker during my daughter’s presentation on Crohn’s and Colitis in her High School Health Class. I’ve shared my story with many people over the years, but never before a group that was not directly affected by Inflammatory Bowel Disease (IBD). Talking with people who relate to the shame and fear is one thing, but sharing this deeply personal story to my daughters’ peers was an entirely different experience. It was another first, another milestone, and another moment of knowing I have this crazy ileostomy for a reason.

When I faced the group the reality of how long IBD has affected my life was intense. I was just a little older than them when I started to feel the life altering affects of Ulcerative Colitis. I will be honest, going in I didn’t know how a group of teenagers would respond to my condition. As lead by their open minded teacher, they listened respectfully and I went for it and shared it all. I pulled out a pouch and showed them how the appliance works (with my clothes on of course) and told them stories of misery and isolation. I spared no details and allowed them to ask me questions. I spoke of my confidence and belief that I can do anything. I also shared how some people I try to support are so disgusted at their own body changes, that they see me in an equally dark light.

I am also very proud that both my teenagers were comfortable with me exposing such a private part of our life. Family is affected profoundly by illness and my girls know it first hand. We’ve had plenty of emergencies because of medical complications and I’ve become dehydrated so many times that a bottle of Gatorade sets panic in the eyes of my girls – it means a trip to the ER for IV fluids is near. Seeing a parent weak is nothing a child should ever face, but for my girls, they have moved through it with privacy and poise.

The swing side of living through fearful situations is the story of resilience and grace. When you have a bowel disease, feeling confident doesn’t come easily and depression and isolation are common. My girls have at times been burdened with a bedridden mother and one who has said goodbye many times for mysterious and scary visits to the hospital. My daughters are lovely and in spite of all they have experienced, they are strong. They live with dignity despite the strangeness of having a Mum without a colon and all the “baggage”, stigmas and bad jokes that comes with it.

This generation of young adults that are open to talking about anything. I thank them for inviting me in and to their teacher for helping create awareness. I left the visit, feeling inspired to do more.

To the Class of 2010 – Thanks for having so much class.

Karen

Good Form

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When I was in the hospital recovering from ostomy surgery, I was very low emotionally. Despite my attempts to cope, some days I just couldn’t muster up a smile, and felt little comfort in the smiles of others. Some days I felt shame, dull sadness or simply felt sorry for myself.

One day, perhaps on a whim, my parents brought me an artist’s figure. This simple gift turned out to be a coping mechanism for me, helping me face the day. Not only did I spend hours bending and twisting it’s joints, this figure became a tool for communication – acting as a barometer for those that entered my life and my room. Each day I would pose it to reflect my mood. Typically the form’s head was low, or arms crossed, some days the face was in the hands or cradling it’s belly. Other days I lay it face down flat on it’s stomach – something I imaged I would never do again.

One day the fog of my misery cleared and I felt hopeful. I thought about sketching my little wooden friend and about all the other things I would do once I was released and able to restart my life anew. I’ll never forget that day my parents entered my room and saw my little figure, back arched and arms stretched – palms up to the sky. They smiled knowing I’d turned the corner. 

Get one for someone you love who’s suffering. It’s the simple things that can turn the day around.