By: Zal Press

I came out of the subway into air that was just cool enough to keep me focussed on my thoughts rather than the weather. Throughout the subway ride I was riddled with anxiety about my new Health Mentor group I was about to meet.

This is my second year in the program. As a so-called veteran I knew what to expect, but I felt that this was going to be different. The students were going to be different. And so was I because I also knew that I was going to be writing this blog about the experience and I was feeling some self-generated pressure to produce a kick-ass piece.

Would that prejudice or bias my session? I was worried I might manipulate the session just to satisfy my selfish need for literary recognition. “These students deserve to get the best I have to offer in terms of insights from a chronic illness patient”, I kept telling myself. As I jumped up the stairs at 500 University through the front doors and up the elevator to meet the group, I focused on being authentic, real and honest and pledged that my literary ambitions wouldn’t get in the way.

The minute I met these 3 young women all from first year programs in different disciplines I was reminded of how “young” they all are. Of course at 61 I’m definitely not young anymore. Most of the health care providers I see on a regular basis are also not young anymore either. I blocked all thoughts of warning them “do you have any idea what you’re all in for?” The warning was two-fold: one for what they’re facing as practitioners in a healthcare system that is becoming exceedingly more complex and second, for what they’ll be facing in the next 3 sessions with me, the Patient Commando.

I held back knowing that we desperately need fresh blood in the system and scaring them off wouldn’t serve this need, and second, that as the prototypical “engaged” patient I am probably the perfect subject for the program anyways. Pretty smug.

The session started off tentatively enough with some open ended questions about my life, my personal history, and my illness history. This is not typical of my office experience with new providers who usually get right to the heart of the matter – “Hello Mr Press, what seems to be the problem?”

Beyond the generalities, I’ve got to say that this group was open to discussion and exploration of some of the underlying principles that govern the management of my illness. The highlight of the session revolved around a collection I have been developing of 4-letter words that are used in hospitals and health care. Words like “cure”, “hope”, “care”, “sick” etc. I find some of these words offensive. I came to accept many years ago the reality that my condition has no cure. How many times have we heard a phrase like “hope for the cure” bandied about like it was right around the corner and a donation today was going to make it happen tomorrow. My ass! Hope is way too abstract for me. Give me something today. Give me something that’s going to make a difference in my life today because this illness of mine is with me every single day of my life. Hope just doesn’t cut it for me. It may be effective in making people feel guilty enough to cough up a donation but it offends my intelligence and belittles my experience. Enable me with something concrete.

In the Canadian Comedy Award winning one-man show “Cancer Can’t Dance Like This”, Daniel Stolfi, a 25 year old cancer survivor asks an obvious question, “Have you heard about The Weekend to End Women’s Cancers? That’s right. They’re going to end all cancers in one weekend. That’s ambitious.” That’s for sure.

I think my group was a little surprised by my perspectives at first, but to their credit, they began to make sense of it for themselves. They shared how hope is viewed through the lens of their discipline. What was remarkable, and honourable, was how they didn’t get defensive but rather sought to explain, relate and interpret. Right then and there I saw the value of this Health Mentor program. Catch these students at the outset of their training and expose them to the realities of the lived illness experience as a way to inspire critical thinking. It provides balance to all the regimented training their discipline demands from the very beginning of their profession. You’ve got to have an eye on the long ball to be able to see how this will make a difference in health outcomes once these practitioners start practicing.

This was an interactive session. I learned things like “focusing on your future self” as an understanding of the application of hope. I learned about “eco-models” as a structured method of understanding the patient from a world view.

I really learned that the notion of patient centred care and patient engagement are not just buzz words to these students. They may not totally understand their implementation but the idea that patient participation in healthcare can lead to improved outcomes didn’t seem like a foreign language, despite the new vocabularies of tens of thousands of words that they’re ingesting like buffalo at a buffet. They asked careful and conscientious questions about my personal engagement, how it manifested itself and what differences increased engagement made in my life.

As we left the building back into the cool night air, I was excited, invigorated, and relieved that the organic nature of the meeting was directed by the needs of the dialogue and the interests of the students rather than my self-professed writing ambitions.

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