Sunday, June 12, 2011

Jennie's Halifax HnW Speech 2011

The below speech was read at the 2011 Heel n' Wheel at the Halifax Waterfront. (Picture: Jennie on left)


Once our lives collide with the medical world, there are many things demanded of us – to take our pills, be active, report new symptoms, and attend all appointments. I can remember those first few months after my diagnosis at 12 years old, going through the movements as if I was a puppet dancing. The steps of the dance aren’t hard to learn; in fact they’re rote and there are people whisking you around the dance floor. Knowing was one thing; knowing that I had Crohn’s and that I required medications and treatments was understandable logically. Acceptance, however, was not. I could not, and would not, accept that the rest of my life would involve medications and blood work and doctors. I held my doctors responsible for my disease, and viewed them as the people who had stripped me of my identity and wanted me to accept the new path they had superimposed on me. Acceptance felt like the ultimate confession, the ultimate defeat, when I would lose any remaining piece of myself and dissolve into my medical records.

Acceptance and resignation had always been synonymous to me – giving up and giving in. When I thought of accepting my disease, it infuriated me that it also implied that it was in some way it was only my problem to deal with. To me, acceptance of a disease was never leaving bed, not going to school, and having a poor quality of life – no one dreams of ending up like that. So I fought and I struggled and refused to be consumed by my Crohn’s.

But I was very wrong. Acceptance did not mean resignation in the least. Taking responsibility is a part of acceptance, but not in the way of burdening ourselves with the illness, but rather taking control of the situation. Acceptance has a reputation for being passive and submissive, but it might just be the hardest thing you’ve ever had to do. And after all, acceptance is not the final destination. It’s like having batter without a cake pan, or bed sheets without a bed – you need acceptance before you can get to a better place.

Acceptance means understanding, it means that I’m aware of the challenges or responsibilities around me. The next step is crucial – what do you do with acceptance? When the horror that we are accepting is inside our bodies, we can feel all the more betrayed and angry.

The best advice I received before having my permanent ileostomy surgery last year was to not look until I was ready. And although it was a good and decent suggestion, I couldn’t resist the temptation of pulling up my oversized Johnny to reveal the little bag that had saved my life. The bag was rubbery and medicinal, and beneath it was the meaty red intestine sticking out. My first thought was what did I do? How was I ever going to manage to accept my permanent internal tailoring and be happy about it? The answer: moment by moment, step by step. On my last day in the hospital, I decided to empty my bag in the toilet ‘like a big girl’ as the nurses had been emptying it bedside. As I attempted to model what I imagined it would be like, I opened the lip of the bag before pointing it towards the toilet. Needless to say, before I knew it, I had drowned myself and the bathroom with output and as I sat there laughing, I knew I was going to be okay.

And that is why it’s so exciting to be here today. We can accept that we have inflammatory bowel disease, we can accept that our bodies function partially as its own enemies, but we cannot – and will not – accept that nothing can be done about it. Today we are taking the metaphorical steps to bring an end to the pain, we are raising our voices and raising awareness. We have to accept our disease before we can fight for our future.

This is my pledge and this is my mission: I accept my disease, I accept my ostomy, I accept my responsibility to be a part of the cure, and I refuse to accept the limitations people think there are – because the truth is, there aren’t any.

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