The documentary about my struggle with EDS has finished! First my dad and I watched it together and were both moved to tears, it really did exceed all our expectations. Ordinarily the rest of my family would have attended a screening so they could see it as well but due to the covid pandemic we had to settle for watching it online together again with most of the extended family. As you might expect more tears were shed but incredibly even as a select few non-family watched it being moved to tears was also the most common reaction! There were even things my family didn’t realize about my past until they saw it in the documentary. For example, they had assumed my first pill overdose suicide attempt was a cry for help rather than serious because I had messaged my brother Evan and told him what I had done. As I explain in the film this was not so he would save me, rather I did that because I was unaware of all the methods the hospitals possessed to save someone who overdoses. I thought as soon as I took all those pills my death was inevitable and I simply was scared like any 16 year old would be and did not want to die alone. This came as bit of a shock to my family and it was why I didn’t tell anyone what I had done after my second nearly fatal and even more determined attempt.
The next step for the documentary was to enter the film
festival circuit and as of writing this one festival (the Calcutta
International Film Festival) has concluded and already blown our minds. The
film won an Outstanding Achievement Award and was also a finalist for Best
Picture! The more awards it wins the better the chance that the film will get a
great distribution deal, with the best case scenario being Netflix. The film
festivals are expected to continue all the way until the summer of 2022.
The excitement does not end there however, as
I sent the film to my sociology professor and the response was greater than I
could have ever expected. She thought the film was so touching that she asked
if she could add it to her curriculum for her classes! I explained that the
film can’t be released publicly until the festivals are all finished because
that would disqualify the film from the festivals. She then requested to
interview me as we wait for the film to go public. I took her class last
semester and she has case study assignments where she interviews people with
interesting stories and then asks the students to answer questions based on
those interviews. She wanted to use me for one of the case studies! When the
interview phone call started she said they usually last about 15 minutes. By
the end of the call we had been talking about my journey for one hour! She
teaches possibly the biggest class in the entire university with close to 1000
students and so for them to see the interview and the documentary each semester
will be amazing for EDS awareness! What follows is the message I received after
her viewing:
“I just finished
watching the video..Oh my goodness... thank you for sharing this with me.
I have no words to express my compassion and
empathy for you, and further, I thank you for being such an amazing human.. you
have taken this unbelievably painful life experience and turned it into
something beautiful with the work you do with the support network and your role
in bringing about the opening of the clinic. That’s extraordinary.
If you haven’t already, please take a
moment to honour your courage and strength.
I feel blessed to have had you in my class and
to have learned from you.
If I can ever do anything to support you or if
I can be of help in whatever way, please feel free to reach out.
Please also send my regards to your beautiful
family.
The stakes for me personally got even higher because as all
this was happening the head of EDS Canada, a large non-profit that advocates
for EDS patients in Canada in many different ways saw the documentary herself.
Afterwards she messaged me saying that she was so impressed that she sees me
taking over the reins of leading the EDS Canada organization one day! Her
response to the documentary was just as touching and meaningful to me:
“I watched the Bend or Break movie today and I must say that not only was I
blown away but it was also super emotional for me. It's taken a couple of hours
to 'get over' those feelings. I want you to know how important you are and that
I see you taking the reins of this movement over when the time is right. I
really do. I have fortunately lived long enough to now see that each difficult
passage(s) that we go through is a stepping stone for what's to come. It all culminates
into something that we can't see at the beginning of our lives and journeys but
someday when you are looking back it will make total sense. I have so much to
say about the movie, too much to really to write here. I hope we can connect
someday soon or when the movie comes to fruition to discuss. Your story
matters, your experiences matter, YOU matter.”
Even my doctors saw the documentary and thought it was
excellent. My original ketamine doctor who was responsible for prescribing my ketamine
nasal spray started to distance himself from us when he heard the last infusion
turned out to be useless. However after I said the nasal spray still has a
significant impact on my functioning and he saw the film he fully reaffirmed
his willingness to continue prescribing the crucially important nasal spray.
Although he referred me to my current ketamine doctor a long time ago, he was
the only one still willing to prescribe the spray. My current doctor explained
that no one else does it anymore because it was so heavily abused in the U.S.
that prescribing it was heavily discouraged. Stuff like that nearly screwing me
over is why I admit to having a hard time sympathizing with addicts who abuse
their prescription drugs and ruin it for the rest of us. I recognize it’s
slightly hypocritical given that I abused my medications by attempting suicide
with them but I was very young and never abused them due to an addiction.
This was his message:
Thank you for sending me the link to the documentary. I was
very moved to see and hear Mitch, you, your wife and Mitch's siblings talk
about his struggles with EDS. As physicians, we often detach ourselves from our
patients' and their family/friends' emotions to allow us to focus on the
clinical issues in front of us. This documentary is a powerful reminder to me
(and I am sure for everyone who will see this) that our patients represent not
just their medical condition but also their feelings, and emotions and those of
the people who care for them.
Things have been going great academically as well. For the
first time I’ve been able to do three courses at once for two semesters in a
row and I’m doing very well in all of them! Last semester my 3 course average
was 87% and this semester it is so far 96%. My overall GPA is 82.5% and 80 is
more than good enough for law school. If I can keep up the momentum this
semester I expect my GPA to be bumped up to about 85% which could land me a law
school scholarship! Waking up rested consistently has more than made up for the
lost productivity of being awake so long since I am only able to be productive
for a fraction of that extended wakefulness cycle. At my current rate I expect
to graduate in two years and on top of that at the end of the current semester
I will have achieved a Certificate in Public Policy and Administration which
will look great on my application.
The Dark Knight (batman) is my favourite movie of all time
and some of the scenes make me think about my illness whenever I rewatch them.
The most important of these is the scene where batman interrogates the Joker. I’ll
link it here: https://www.youtube.com/watch?v=jane6C4rIwc&ab_channel=FlashbackFM
Batman eventually gets so frustrated with Joker’s taunting
that he starts beating him up. However Joker doesn’t care, the harder batman
hits him the more Joker starts laughing. This reminds me of my struggle against
my own defective body. Every time I push harder to achieve my goals my body
throws ever increasing levels of pain back at me. Imagine the frustration that
every time you punch someone in the face they laugh harder with each hit. This
brings us to Joker’s most important line: “You have nothing on me! Nothing to
threaten me with. Nothing to do with all your strength!” My body might as well
be saying that to me. I have no leverage in this battle. The harder I fight the
more things can lean towards self-destructive actions. I may be strong but what
am I supposed to do with that? My opponents are my own joints. It’s not like I
can punch myself in the face to get them to work properly. With that all said I
certainly relate to Batman’s frustration in facing an enemy immune to brute
force.
