For the last two weeks I have spent more time at my new home in Peterborough than I have in Toronto, and I can already feel some of the tension melting out of my shoulder blades. The migraines are still frequent, but being in pain poolside, in a quiet, scent-free, tree-surrounded oasis is a best case scenario. Also, I set up my studio. Come July, the writing and plate painting will recommence, full speed ahead.
Pretty sweet, right? Mouse poo, moth infestation, cobwebs, and pool replacement parts notwithstanding, we scored SO big.
I’m still trying to absorb all of the wonderful responses to This Day, my winning film in the AMF and AHS’s Migraine Moment film contest. As a newbie to filmmaking, I am amazed at how successfully we (cinematographer Ian Macmillan, editor Shawn Beckwith, and myself) were able to covey the frustration and isolation of living with migraine. And the only reason I know we did this successfully is because of your feedback. When I watch the video, I just see pieces of my life, but apparently many others can relate, and some people without migraine have said the video has helped them to understand the impact of migraine a bit better. I am so glad.
To provide a bit more context for the film, here is the speech I wrote to introduce the film at the American Headache Society’s 58th annual scientific meeting:
Four years ago, my face met the pavement in a cycling accident. Shortly after, I had the second migraine of my life. And then the third, fourth, fifth, and so on. My body, no stranger to pain, but a resilient, strong, and capable body nonetheless, quickly gave way to an array of symptoms that left me unable to do my job, unable to leave the house most days, and unable to comprehend the unexpected nose dive my life had just taken.
I had never experienced loss so intensely. I sought and acted on the medical advice of my GP, but when my health worsened instead of improving, I began to struggle with depression and anxiety. Fortunately, I had done a good round of counselling already, and I knew that to dig myself out of such a rut would take extraordinary courage: the courage to acknowledge my fear and vulnerability; the courage to fight for a better life; and the courage to reach out to connect with others in whatever ways I could.
I started with my family: my mother, who – like my grandmothers had lived with migraine for decades – offered empathy, but little knowledge of treatment options, and was heartbroken at her helplessness. Next, I met with friends of friends; people who lived with “chronic pain:” a label with implications I was only beginning to understand. Then I started a blog: an online diary created for purely personal, cathartic reasons, but which consequently connected me with a whole world of migraine sheroes, both familiar names and strangers, who revealed themselves to me with words of kindness, echoes of my own experience, and invaluable knowledge. Then I turned to my employer, who at first pleaded ignorance, asking me to prove my illness in order to receive the sick pay I needed to maintain my dignity and independence; then to more doctors, some dismissive and unhelpful, even harmful, then to year-long waitlists, and finally doctors and so-called alternative practitioners who could and did help.
My story is not unique, but the details hold significance, because the only reason that I am still here today; that I can stand before you and declare how far I have come; that I have been able to carve out a new, good life for myself, is because of the incredible network of support, both emotional and financial, to which I have access, mostly as a result of my enormous privilege.
My socio-economic status, the time and place of my birth (thank you for universal healthcare Mr. Tommy Douglas), and the good fortune to encounter migraine AFTER the work of destigmatization, legitimation, and advocacy was well underway, have all buoyed me along on the path to wellness.
Yet for all my privilege, support, resilience, and success, migraine is still a constant source of isolation. The disease necessitates sensory deprivation, and in some ways the absence of living — existing, yes — but living, not always. And that is what I aimed to convey in this short film: the physical and emotional isolation that crowds in on daily life for people with migraine, that we must constantly fend off through no small effort, but also how migraine can make us stronger, because after years of learning to live with pain, I now trust myself to get up each morning and live to the best of my ability, and enjoy a new life that is different, but not less than the life I enjoyed before my face met the pavement.
Thank you to both the American Headache Society and The American Migraine Foundation for creating the Migraine Moment Film Contest, and for allowing me to be here today. It is an honour to say the least.
The lyrics of the song are as follows:
Start the day just right
Move with ease don’t fight
Make the most of a certainty
This day will go on with me
Sirens smells and stress
The fog on your brain
Push through anything that would stop you
This is what you were born to do
Maybe it’ll be one of those days
Where I don’t have to pretend
Maybe it’ll be one of those days
Where I am actually okay
Wait and this shall pass
Nothing this bad can last
Time will see you through
This day will go on with you
Maybe it’ll be one of those days…
The conference was held in San Diego, and while the travelling was a strain on the system, I think it was worth it.
By far, the best part of the whole event was meeting fellow advocates who are making big plans and working their butts off to educate and unite the migraine community. I made connections which I am certain will lead to the building of both local and national organizations here in Canada to support people with migraine. Stay tuned.