Does this urn make my ash look big?

For a disease that robs your future, there sure is a lot of advanced planning with ALS. This past few weeks, we took care of three things pertaining to end-of-life. First up, Island Health folks stopped by and I was registered as a palliative patient, and with hospice, which allows us access to a wide... Continue Reading →

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Dear Santa

Dear Santa You know that Christmas has always been a difficult time for me, no visions of sugarplums or happy Christmas mornings or big turkey dinners or family visits danced in my brain. Until, that is, I met Mike and was introduced to his family. It seemed like a fairy tale to me, his mother... Continue Reading →

On Death & Dying, Luckily

Okay maybe "luckily" is too strong a word, but I didn't want you all to be scared off by the headline. I have an incurable disease, and I Have Thoughts to share. Well, many thoughts but just two today, a rant and a reassurance. Starting with the rant, so I can end on a high.... Continue Reading →

Actual Food for Thought

I'm coming off a very difficult week, one of the hardest weeks I've had for quite some time. With ALS, every time you lose the ability to do something to some degree it's the disease asserting itself, reminding you that it will, in the end, win. I've learned to deal with such losses by allowing... Continue Reading →

Land of Smoke & Fog

The mainland BC forest fires continue to rage, and the smoke has now drifted over Southern Vancouver Island. There's no world outside the cove, and that suits my mood of the last day. I don't very often allow myself to wallow in self-pity, to indulge in "why meeeeee" wailing; that's not to say I don't... Continue Reading →

ALS Awareness: Last Word

Strip my bones, make sinews scream As muscles waste away Erode my independence, day by day Legs hang useless, arms grow weak Next, rip away my strength to speak Diaphragm slows, a struggle for breath.  ...I will lose, you'll have my death But until then, I won't give in.          I'll give... Continue Reading →

ALS Awareness: death stats

One thousand Canadians doesn't seem a lot, really. After all, 48,000 people will die from heart disease, and a staggering 78,800 will succumb to cancer in the same time frame. * But here's the difference. With cancer and heart disease, there are survival statistics. Those diseases have a chance to be managed, treated, forced into... Continue Reading →

ALS Awareness: One Year In

Today marks the anniversaries of tragedy on large and small scales. D-Day, 2500 Allied lives lost. Shawnadithit, the last known Beothuk, died of tuberculosis. Certainly puts the day in perspective for me, because it's one year ago today for my personal "D-Day", my ALS diagnosis. Yes, it was a terrible day, I can hardly bring... Continue Reading →

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