I spent the past two days at Play the Pain, a “participatory free for all event to discuss ideas” about chronic pain.(1) It was conceived of and then planned by a neuroscientist, who enlisted other researchers, as well as artists and therapists who all:
work to advance medicine through communication, community, and creativity.”(2)
My autoimmune and neuro-inflammatory disease causes chronic pain, among other symptoms, so I was attending this event as a ‘pain patient’ rather than as a bioethics professional.
By the time these two days came to an end, I was completely exhausted. The extreme fatigue of my disease had kicked in, despite having slept for over twelve hours last night – and sleeping in is something I rarely do!
I’ve had to cancel plans today, and for tomorrow as well, due to exhaustion. One of the reasons for this was the lack of rest breaks during the event. Although Play the Pain was run with a drop-in type approach – so that attendees could stop by for any of the scheduled lectures, roundtables, and workshops – there were no breaks between these.
The lunch break was only 30 minutes, leaving barely enough time to head to the washroom and grab a bite to eat. That used to be fine with me; I could eat on the run, or at my desk, and still power through my days. My disease, though, changed all that. Complex Regional Pain Syndrome (CRPS) sometimes feels like a parasite, sucking the energy right out of my body while causing constant and often excruciating pain.
When I factor in my more recent cognitive symptoms, which began just before this past New Year, it becomes even more exhausting to participate in events like Play the Pain.
Trying to concentrate and to focus on a presentation, even for just an hour, has become a physical challenge. It’s draining to force myself to pay attention, to absorb and process what’s being presented.
Although the workshops were a good break from the lecture-style presentations, they also required focus. For example, the creating writing workshop was by far my favourite. But, as you can imagine, that also required both concentration and focus! Even the music workshop, which I’d honestly expected to be a bit of a break, required us to memorize and play notes in a specific order – as a group.
As much as I enjoyed Play the Pain – and I really did! – it was all just too much in too short a time. These days, I need to rest. Much more than I ever used to, and much more frequently. I hate to admit it, or to show it, because in some ways I still feel that I should be able to ‘just deal with it’.
After a few years with this disease though, I’m realizing that I have to listen to my body – particularly when it tells me to rest. Otherwise I’ll pay the price afterwards, which is what I’m doing now.
I know that many other autoimmune conditions can cause the same type of fatigue as CRPS, so I’d hoped that the 1000 to 1800 event schedule would incorporate short breaks between sessions. Unfortunately, it didn’t.
There were very few other pain patients there, and two of those I met could only stay for short periods; each told me that there was simply no way that they could manage to stay for a full day. And that’s too bad.
Going somewhere to rest, and then returning to Play the Pain, wasn’t a viable option for me because I live about an hour away from the event site. Nor did I want to miss any of the event’s underlying purpose as a:
discussion forum for us to share ideas about the many ways that pain is experienced and expressed; and the alternative coping strategies that involve psychosocial, or individual creative activities”(2)
One of the reasons I didn’t want to miss anything was to be able to share it here – with all of you who couldn’t attend! Whether due to your own health condition, or physical distance, I’d already received several requests to write about this event.
Which is why I’ll probably write a separate post for each session, so that you can pick and choose what you’d like to read; in much the same way as Play the Pain participants could drop in for any of the sessions ‘-)
Given my current state of exhaustion, I won’t be writing much else over the next few days though. Stay tuned for more on this… hopefully by the end of the month, because I’ll be offline for a week before then.
Another reason for which I wanted to participate in every session was that the concept of Play the Pain was based on integrating the participation of pain researchers, scientists, art and other therapists – with people living with chronic pain conditions. The organizers wanted us to all:
come together to sketch a few ideas about how to use art as an instrument for communicating and documenting the diversity of personal experiences of pain and resilience.”(2)
The other ‘pain participants’ had told me, during the first morning of the event, that they would only be there for limited portions of Play the Pain. That meant that there would likely be sessions in which no pain patients were even present, let alone participating, other than the neuroscientist-organizer herself.
So part of my reason for participating in the entire event, during each of the two days, was to feel that I was helping the organizers meet their goal of creating a “discussion forum”(2); to bridge knowledge gaps between pain patients and the researchers and therapists who study pain.
Play the Pain was an extremely interesting and thought-provoking set of discussions, lectures, and workshops, and I’m very happy to have been there. I’ll be writing a lot more about it soon, to share this fantastic information with you.
That said, the organizers could have benefited from having representatives of their target pain patient audience involved in the event planning. This is why the Patients Included™ “conference charter” was created, to provide organizers with:
a means of demonstrating that their events are committed to incorporating the experience of patients as experts in living with their condition while ensuring they are neither excluded nor exploited.”(3)
Because if a patient is unable to participate in an event – about them or their condition – because of cost, or lack of accessibility, or even because its schedule doesn’t allow for any required breaks, then they are effectively excluded from it. This type of exclusion is often inadvertent, but can be prevented by including patients with the target conditions in the planning of an event.
It’s important to note that Play the Pain did meet the most important criteria for many patient-centric events, in that it was a free event in an accessible building. There were no hidden costs, not even to use the on-site Virtual Reality (VR) experience! And the event took place in a university which meets all the accessibility standards expected of a learning establishment in a major city.
Play the Pain was a fantastic event – with a fantastic intent. I’ll be blogging about the different sessions, many of which were absolutely brilliant; including some of the scientific presentations by young pain researchers.
I’m not sure yet whether I’ll blog about them in chronological order, or starting with the ones that most touched me; I’m simply too tired to think about that now. [To the point where it’s taken me an entire day to just type this post out, on my phone!]
Before signing off, I want to say an enormous “Thank You!” to the organizer of Play the Pain. Thank you so much for planning and hosting an event with the goal of bringing pain patients into the conversations about the emerging and fascinating science and therapies for chronic pain.
It was a truly exceptional event, with an original mix of workshops and presenters. Thank you so very much!
References:
(1) Events; OCT 01, 2019 – OCT 02, 2019: Can we study pain under the
light of play? Technoculture, Art and Games (TAG) Lab, Concordia University.
2019. Online. Accessed 01 Sep 2019.
https://tag.hexagram.ca/events/can-we-study-pain-under-the-light-of-play/
(2) Play the Pain. Media Health; Concordia University [Media Health Lab is a collaborative initiative supported by Concordia University PERFORM Centre and The Milieux for Arts, Culture and Technology]. 2019. Online. Accessed 01 Sep 2019.
(3) Patients Included Charter. Patients Included: Lucien Engelen et al;
REshape & Innovation Cente. April 2015. Online:
https://patientsincluded.org/conferences/