The Inbox…

Thank you for the huge wave of support sent my, and my daughter’s way after my most recent post. Although I’d mentioned it in last year’s Rare Disease Day post, I had decided that I wasn’t this year going to mention the petition asking our government for help addressing rare illness concerns (you might see it on the right hand side of this blog depending on your browser). What point? After almost two years it sat only around 1200 signatures.

Thanks to my daughter and a dear friend who shared a request to sign the petition on their Facebook pages, it now sits a little higher. Certainly not representative of the hundreds of thousands of Canadians who suffer from rare illness. But it’s a start. And the lovely notes and words sent our way were heart warming, especially for my daughter who was for the first time widely acknowledging to her circle of friends what we’re up against. I’m so proud of her bravery. As she stated, “people are so kind if you let them be”. I concur. Most of the time.

With my body not cooperating much at all, I truly have no choice but to be confined to bed very close to 100% of the time. I’ve written about my various diversions – learning continues to a preoccupation with me.

One subject that I’ve tentatively broached over the last few years is the subject of how to die. I’m learning through the wisdom of others about different ways on how one can go about it when death is known to be on its way.

I’m often given the opportunity to speak freely with my palliative team, friends and volunteers about their own experiences and about how I’m doing on my journey. When I was first diagnosed it was reasonable to speak in increments of years, realistically that no longer applies.

This week I’ve been reading a book called “Final Journeys” by Maggie Callanan. It’s meant for caregivers of the terminally ill but I found it helpful nonetheless.

One simple paragraph from the book lifted a huge weight off my shoulders today. “We are never done. The inbox is never empty. The desk is never cleared. The dreams are never all realized, nor the projects all completed”.

This past week I’ve been able to tick a few major items off my to-do list. It lifted weight off my shoulders, yet it nags at me what I still feel I need to accomplish before I leave.

Being the uber-organizer that I am (a few of you who know me all too well can stop laughing anytime now…I’m not blind to how annoying that trait can be at times!) I need to give myself permission to accept that I won’t get everything done. And believe that those whom I love will see what I was able to do, and not what was left undone on my list.