Written in honor of the many people and patient advocates who have influenced and left a mark on my life over the years

Yesterday, I learnt of the passing of a friend and fellow advocate Angus Pratt. If you didn’t know him personally, or know of him through his advocacy, he was a gem. Funny, fierce advocate with a strong mission. I feel privileged for the time I spent in his company.

Last night, I remembered all the people that have passed through my life over the past years on this unique road I have travelled.

If you had told me in April 2010 that I would soon meet a community of people—each with their own unique story—whose individual journeys would leave an indelible mark on my heart, I wouldn’t have understood what you meant.

Just one month later, in May 2010, I was diagnosed with a non-malignant brain tumour. That is when I started to meet them.

I found them in the online brain tumour support groups I joined and at the in-person meetings I attended. We were all granted “access” to these places because we were either an individual with a brain tumour or supporting one. We listened, shared, sat in silence, smiled, laughed, supported, and shed tears together.

It was here that I first experienced the loss of a person from my in-person support group. Suddenly, they just weren’t there. Their voice was no longer heard at our monthly meeting. The grief cut deep.

Then, a strange and profound thing happened. At the same time as the grief and sadness washed over me, I remembered something that person had said during a meeting that had profoundly impacted me. I smiled as I remembered.

The combination of grief, impact, the privilege of knowing them, and happiness all converged at the same time. Their life, their story, their wisdom—theirs was the first stitch in the patchwork of my patient advocacy heart.

Time passed, and my personal journey evolved. I moved from being an individual with a brain tumour to undergoing surgery for a rapidly growing one and living with its lasting consequences. My experience as a patient changed, and with it, my grasp of the crucial importance of the patient voice in the healthcare system deepened.

The group of people I met now expanded to include advocates across Canada, championing issues they faced in their patient journeys. These fierce and compassionate individuals and their caregivers mainly came from the brain tumour and cancer community.

Strong. Kind. Honest. Passionate. Fierce. Compassionate. Mortal.

My friendships with each and every one of these people has been a gift. For those who are no longer here, they have added yet another beautiful, unique stitch to my patchwork heart.

While the grief still cuts deep each time someone dies, I would never change the pathway I have chosen. I am a better person for each and every one of these people I am lucky enough to meet. This patchwork heart, stitched together by grief and resilience, is a great treasure, and it beats strongest whenever I speak up for those who can no longer share their own stories.

This last stich is for you Angus.