Best Speech/Worst Speech

 

Taking some inspiration from a few months ago, tweaking a Disability Pride Month prompt about the best/worst thing about my disability into about my best and worst speaking experiences.

Since it's earlier chronologically, I'll go worst first.

Sometime shortly after I started college (I want to say 2004/5??), I was still speaking as a part of Easter Seals' Leaders of Tomorrow program. Being in the city, I linked in with Easter Seals' Ottawa office.

One of the annual events they hosted was the Bell Canada Skate with the Senators (Ottawa's professional hockey team). I'd already given a couple speeches and had been to the event before, so they asked me if I would be willing to say something. 

Normally, I would write up a bulleted version of what I wanted to talk about and practice. However, after only a handful of events, I got it in my head that I was quite the speaker, so I got cocky and decided to wing it with no notes or anything. Very bad decision!

When it was my turn to speak, I got up on stage, in front of families, and representatives of Easter Seals, Bell Canada, The Ottawa Senators, and local media represented by Max Keeping, then one of Ottawa's leading broadcast journalists, and spoke about my life with Easter Seals: what they did for me when I was younger, and being a representative for them. 

Then, I started to talk about Camp Merrywood. That was going really well, until I tried to make a joke about a concoction the camp used to make to keep kids...regular. Long story short, I rambled when the "joke" didn't land, my father just about leapt out of his chair to haul my teenage butt off the stage, and I've never forgotten the time I talked about poop with Max Keeping.

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Now onto the best.

Fall, 2011. Shortly after my Joubert syndrome diagnosis, the national news wanted to do a story on rare genetic disorders and my geneticist recommended they interview me and my parents. After a few weeks of scheduling conflicts. representatives from CHEO and a CTV News crew came to our house.

After walking us through the interview and getting set up, filming began.

Since we were in Ottawa and CTV's medical correspondent Avis Favaro was based in Toronto, she conducted the interview via a two-way earpiece. I sat on our couch in front of the camera with the device in my ear, and she fielded questions, asking about my life and recent diagnostic journey. Afterwards, she did the same with my parents.

When the interview portion of the story was done, CTV wanted some clips of me doing various things around the house. First, I was asked to pour myself a glass of juice and pretend to have a conversation with my mother. So awkward! Then, they filmed me walking upstairs. Since I had spoken about writing and using a computer for a lot of things, I was filmed in my room typing (I wrote "I am on TV" ten times 😆) and flipping through a couple comic books. 

It took a while for the story to air but on December 24, I made the national news! After our usual Christmas Eve traditions, me, my parents, sister, and grandmother stayed up late to watch. Mine was the last story, right between something about Vladimir Putin and NORAD's Santa tracker. It was a great segment, though not without a couple embarrassing moments. My mother never realized she cried during her interview, and CTV got a great top-down shot of my gigantic bald spot while I was walking upstairs (I started shaving my head soon after). At least my Dad, sister, and Nanny though it was funny!

 A very nice Christmas gift, and a great opportunity.

Cheers!

Blogtober 2027

It's my favourite time of the year again.

When I can spend 31 days dedicating myself to writing, a little advocacy for JS awareness, recording and marathoning AMC Fearfest's lineup of classic and not-so-classic horror content and, closer to the end of month, stocking up on chocolate.

Fun, fun, fun!

Cheers.

Exercise Hard

 

2026 has sure been a year, full of events. 

Some of those have been painful and/or taxing, some sad, and a few have been pretty awesome. All of them though, have completely thrown me off the exercise routine I was trying to start back in the winter. I was doing some walking and workout videos for a little while after my arm healed, but surgery and summer set me back on my butt.

Lately, those around me have noticed drastic changes in my health, and not good ones. Being honest, I've noticed it too, specifically with my weight and overall sedentary behaviour. 

My annual doctors appointments will be coming up before I know it, and I really don't want to be unhealthy when those come around.

I've sat on it (literally) for weeks, but I'm taking the first steps today by printing off a calendar (first since April) to track anything I do, writing this very post to keep myself honest-ish and, for the first time since my surgery, issuing a challenge for myself: slowly get back on the treadmill (I got scared because of my wrist) and watch Season 2 of Buffy the Vampire Slayer by Halloween. Also, start cutting back the junk food again. Several weeks of "I'm downtown again, let's have all the iced coffees!" followed by a two-week vacation of indulging in Pepsi, seafood and ice cream is awesome at the time, but, well...

It'll be tough but, if I go slow and remember what I was doing back in January, I should be okay (maybe).

Cheers!

To Rant or Not to Rant

 

That IS the question!

Over the last week, and especially the past few days, I've really wanted to rant about the Canada/US situation.

As with other rants I've written, I tried to dance around it, make it as broad in scope as possible, and searched desperately for a positive spin. However, every approach I took sounded stupid and, to be honest, I didn't want to be positive or nice. 

But before I unloaded, I thought about work, as well as friends of mine in the States. A caustic diatribe about geopolitics wouldn't have looked good coming from a government employee, and might have soured a friendship or two. Not worth the trouble.

Instead, I put all my vicious opinions in a Word document (which I usually do anyway), deleted that, and shared this post from two years ago.

Cheers!

Summer 2026 part 2: PEI island time

 

Continuing on...

After Nova Scotia, we made it to our Airbnb rental in PEI. Great place! Buggy, but nice views, pretty central, and very comfortable. 

For our first dinner, we went to Malpeque Oyster Barn. My first time, and it was delicious!

The following late morning and early afternoon were spent at a really nice, accessible, shallow beach, where I came away with the mother of all sunburns. Later we prepared our own delicious seafood feast for supper.

The next day, we toured and shopped. First stop, my mother got a special tour of her favourite Island Pottery, then on to PEI Island Preserves for jams and sauces. In Charlottetown, I went a little nuts at COWS Creamery. I came away with two shirts (Macho Man Randy Savage and Avengers: Doomsday. Couldn't decide, got both!), another carton of chocolate-covered potato chips (having already bought one in Halifax the week before), and finished with two big scoops of ice cream.

Wowie Cowie, AFTER the scoop of Moo York Cheesecake

 For our final day on the island, I spent the morning relaxing/recovering while the rest of the family went back to the beach. Later, we went out for one last feed of seafood, did some touring around, and enjoyed a night in.

We stayed over in New Brunswick the following night, and met a friend of my Mom's for pizza. 

A long drive, then we were finally home.

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Having been on my own for most of three previous summers, a family vacation felt very weird at times, being honest. 

On the other hand, the past four months have been a gauntlet and a half, so the socializing and relaxation were very welcome!

Back to the old "routine" next week...

Cheers!

Summer 2026 part 1: Nova Scotia family time

 Decompressing after my first real family vacation in quite some time.

Because of either work, appointments, or my own need for independence, I've spent the past three summers on my own in Ottawa while my parents and sister went to the Maritimes. This time we were burying my grandmother, so going was a necessity.

We left ungodly early on a Friday morning and made it to Dartmouth, Nova Scotia later the following day. My sister and I each got our own hotel rooms, so while those were being readied, we went down to Eastern Passage for some lobster sandwiches, donair bites (something new and delicious my sister introduced me to!), and I found a couple used books.

Later, my mother's cousins and members of their family, who were down for my Nanny's burial, arrived and we showed them around a little. 

I hadn't seen any of them in a good 25 years, so it was really nice.

On my own, I absolutely reveled in having my own hotel room for the better part of a week! 

Writing vibes!

 The service for my grandmother was immediately after the weekend. What was originally planned as an intimate burial with family and a few friends turned into a very respectful funeral attended by many including my cousin, my Nanny's home care attendant who helped her until she went into long-term care, and members of my grandmother's family who I had never even met before!

After a sermon from the minister and a very nice speech from my father, we went outside. Instead of flowers, the family had made a last minute choice to surround my Nanny with dulse (dried seaweed, and one of her favourite snacks).

When everything was done, the family went for dinner at Dianne's, a small Port Greville restaurant with amazing fried clams and scallops.

Over the following days, we took my Mom's family over to Halifax for more touring before the left the next day, went and visited my Grampy MacLellan and Uncle Sean, celebrated my mother's birthday, and I enjoyed one final night of Star Trek and junk food in my room.

After all that, we headed to PEI (See next post).

Cheers

Award of Excellence (plus a bit of surgery)

 

Last week was a whirlwind, to put it mildly!

To begin with, the Friday before last, I was notified of a date of June 11 for surgery to replace the tubes in my ears. I'd been waiting for this for a year so, despite the very short notice, I took it. But that meant dealing with a flurry of last minute calls, meetings, and appointments. And a lot of driving, in the case of my Dad!

After a few days of hearing tests, pre-ops, and putting in a week's worth of work in roughly one day, Thursday was surgery day. A few minor complications with my oxygen levels, but everything went pretty well!

But wait! If you think surgery was the highlight of my week, you'd be wrong...

Amidst all that aforementioned craziness, something pretty awesome happened.

A couple months ago, I was notified by my job coach that LiveWorkPlay was in the process of putting my name up for consideration for an award. They went to several coworkers from CanNor and got more good info than they actually needed. Roughly a month passed, and I was told that I'd won! Aside from my family, I had to keep it a secret until the official announcement.

That official announcement came last Wednesday evening during an awards dinner which was part of the 31st annual conference for the Canadian Association for Supportive Employment (CASE), where I was set to accept the Philip Emerson Award for Employment Excellence, an award that "recognizes an outstanding individual that has made significant contributions to the promotion of full citizenship and personal capacity through employment and innovation within the workplace in Canada."

My parents and sister were with me, of course. Also in attendance were my job coach and several other members of LiveWorkPlay. 

I'll be honest and admit that the scope and significance of the award didn't hit me until the moment it was being announced. Presenting it to me was Philip Emerson himself (really good guy), whose intro touched on my time with LiveWorkPlay, starting at CanNor and eventually moving to Communications, and my work with CanNor's Inclusion, Diversity, Equity, and Accessibility (IDEA) committee. 

I walked to the stage, past a standing and cheering crowd, graciously accepted the award, and gave a small impromptu speech, thanking everyone and emphasizing the independence and joy the job at CanNor has given me!

After my award, and listening to an amazing speech by one of CASE's founders, we were directed to the lobby for photos. 

It was a heck of a night, one that I still can barely fathom nearly a week later! 

I remember a moment a couple days before the ceremony where I actually wondered aloud "Why?" and "What's the point?" But a day or two after, a friend whose family I've known for quite a while now, posted on Facebook about her teenage daughter, who has Joubert syndrome like me, getting her first job at a Lego mini-figure store with the help of a group like LiveWorkPlay. Put things right into perspective!

Infinitely big thank-you's to my family, coworkers, and all the folks at LiveWorkPlay and CASE for making this possible.

Cheers!