Hanging With "My People"

Last night I was able to make it to the hospital in Toronto to attend the dedication ceremony for my doctor with the help of a family friend who drove me to the train station and my husband who "caught" me on the other end.

What an evening it was. Maybe eighty people were there, mostly doctors, a very generous philanthropist who has donated millions over time to the division that takes care of me, and one patient. Me.

I can't tell you what an honour it was to be there. I had a special role - it was the unveiling of a painting/portrait of my doctor for which I had taken the original photograph earlier this year as a special request (it even has my husband and daughter in it too!). The painting will hang in the newly renamed wing; the one I frequent so often that many of the doctors passing through will wave in recognition when we catch sight of each other.


I was among "my people". Certainly not as a peer, this was a gathering of some of the most respected doctors in this city. But I was among people who get what this battle is all about. Who have great respect for this amazing doctor that cares for me, but also respect me for trying to beat this with a smile on my face.


They understood that it was hard to physically get there last night. They get that this disease has a poor prognosis, yet applaud my efforts to keep a brave face.


With a few exceptions, most people outside of the medical community just don't get it. I could go into examples of how little others often understand the challenges of dealing with a serious illness but I'm going to let someone else speak on this frustration - I recently became aware of a blog written from the perspective of a spouse of a person with ECD. She writes frankly about their experiences with "the outside world", and I have to say although not all of their frustrations are what I've experienced, enough of them were similar that she and I connected immediately in emails that have gone back and forth.

If you'd like to read about their lives - the blog can be found here. And I'll post a link on this blog too.


I'd also mentioned in yesterday's blog that I would be going to the dentist today to check on my painful jaw. Not good news I'm afraid, it would appear that ECD has asserted itself there as well. But in need of a "yay", this household is glad that that I've kicked my recent grumpiness aside!