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.
- More Health Mentor Stories
By: Zal Press The word "stigma" makes my blood boil. The session started out with questions about my hospital discharge experiences. For the first 6-8 years of my illness I was in and out of hospital like a revolving door. On discharge I would be visited by a dietician who would give me a standard "low residue" list of foods. Basically stuff to stay away from that would get stuck in my gut and give me an obstruction. The amusing part of this list is that it was the same one year after year and became increasingly blurry as a Read More…
By: Annette McKinnon I arrived for the final session and had no trouble finding the students. Because of bad weather and flu 2 were missing so the remaining three started with the questions. This module was about Patient and Client Safety, so in a way, with no hospital stays and discharges I have had it easier than some. We got into a discussion of how the ordinary preventative medicine can be overlooked in a patient with chronic illness when the focus is always on the main problem. Referrals are not always made to associated disciplines either when all of the Read More…
By: Jennifer Ladrillo For years following my diagnosis, I believed that the only way I could find a job and truly be able to build a genuine, solid foundation for my career, was if I kept my “disability” a secret. I thought that in doing so, I would be protected from people judging me as “un-fit”, and from pitying me in any way. Now though, 14 years later, I am not only happy, but eager to tell my story to people (strangers at that!), openly and honestly - no holds barred! How had I come to be here? A girlfriend Read More…
By: Annette McKinnon Just as happened at the last session all 5 of the participants are here for today's meeting. The major topic is Ethical and Professional issues this week, but as usual we go where the conversation takes us. Unlike Zal, I really like to sit at the head of the table because of the limitations in the movement of my neck. If I twist it one way for too long I get spasms and pain so it's the best way for me to see everyone. When it comes to the impact of the health care system on me Read More…
By: Zal Press I’m looking at 4 vibrant young faces as we gather around a rectangular formation of tables in a small, bland meeting room that I found uncomfortable and opposed to my nature. I’ve made a habit of never sitting at the proverbial “head” of the table. Not at home or away. The implication of authority contradicts my principle of equity. I didn’t change my habit for this meeting either and found the “square” didn’t work. I much prefer a circle. Easier to see faces. In education, though, there’s always an authority. There’s judgement and punishment and there’s always Read More…
By: Chrystal Gomes I was nervous. This was the first time I was to be a Health Mentor. Although I had shared “my story” time and time again, this was going to be different. This time, it could, and hopefully would, make a real difference within the context of a future medical community. My biggest dilemma: How much do I share? Do I share the good, the bad, AND the ugly? I was so nervous, I arrived at the building downtown one hour early. I stopped in at the coffee shop across the street for a comforting French Vanilla Cappuccino. Read More…
By: Annette McKinnon It is interesting to be a Health Mentor and talk to students in various disciplines who will ultimately have to work together for the good of the whole patient. You have some great ideas Zal, for engagement. I told my group that there was a "Patient Commando" out there and I have no doubt you are much discussed, even as we speak. I think that in the past when I participated I talked too much - I am learning to shut up and answer the questions so that things can proceed better. The students were very interested Read More…
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 Read More…