A Little Rusty

 

The last time I spoke in any kind of professional manner was about almost four years ago when a medical website was looking to interview someone with Joubert syndrome.

Last week, I presented to my team at work, and saying my speaking skills were lacking would be an understatement. I made out okay, but I was all over the place. I was totally nervous, stammered a lot, and was somewhat forgetful.

I've been asked to speak with LiveWorkPlay later this month as part of a panel on disability and employment. It's just a brief Q&A from the sound of it, but I'm definitely going to need to synch back up with that part of my brain if I want to do well.

Cheers!

A Spooky Story

 

*This is just for fun. Tongue-in-cheek, no offense meant to anyone.*
 
X-Files has always been one of my all-time favourite shows, and a few years ago I started getting it on DVD, partly as motivation for weight-loss/exercise.
 
Halfway through the first season is the episode “Young at Heart.” It involves agents Mulder and Scully investigating a murder in a prison. This eventually leads them to the National Institute of Health and the case of a doctor who, years earlier, had been performing illegal, genetic experiments on children with Progeria in an attempt to reverse the aging process.
 
In and of itself, it's not a very scary episode. However, I was watching this early in 2016, mere months after the Joubert syndrome conference in Chicago. The National Institute of Health (NIH) is a major centre for research of Joubert syndrome and several specialists are regular conference guests. Many individuals, including myself, have been seen or monitored by someone from NIH at the conferences, with some going to the facility for testing. 

While watching the episode, I heard "rare disorder", "children" and "testing", and horror scenarios started playing in my head, involving myself or others I'd only just gotten to know getting microchips, symbiotes, or some other kind of nefarious implant. I stopped the episode immediately and haven't been able to watch it since! Scarier to me than "Home", the infamous inbred hillbilly episode.

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So, I know nothing like this would ever happen in real life. No doctor I've ever met is going "mad scientist" on anyone with JS. It's just the disabled and geeky parts of my brain coming together in a twisted way, and a story I've wanted to share for many years, but haven't had the guts to.

Cheers! 

Awareness at the Office

 

With my manager's approval, I've been using a slightly modified version of the above image as a background for virtual meetings at work this month for Joubert Syndrome Awareness Month. 

I've already had fellow team members ask about it and have been curious about my story, and my manager asked if she could use the image for herself in additional meetings to spread the awareness further to other employees.

Just a quick something worth sharing.

Cheers!

Reflecting on a Rural Childhood

 

I’ve been living in the city for fifteen years this past summer. The occasion’s made me feel like looking back on my former home.
 
By the time my parents put our house up for sale in 2010, I hated Winchester with a passion! It was in the middle of nowhere, there was nothing to do aside from renting the occasional movie, and I was completely reliant on my family. While I was taking Scriptwriting, I took every single opportunity to stay in the city.

 
When the time came to move that summer, I missed parts of the house like our pool and my room, but I was overjoyed to become a city-dweller and permanent resident of Ottawa.
 
Eventually though, things happened that made me slowly start to appreciate my former rural existence. During Scriptwriting, I got a burst of interaction and communication on Facebook from people I’d gone to high school with more than five years earlier. I’d never been really social back then, so it was a nice and welcome surprise.
 
Second, and one of the few times I’ve seriously missed Winchester, was during the family’s first Christmas in the city. For many Christmases in the old house, I would spend part of the afternoon on Christmas Day laying on the floor of our living room, where we opened presents earlier that morning. I’d have a pillow underneath me, reading whatever large book I’d gotten (usually a Star Wars Essential Guide) munching on a bowl of whatever snack I’d gotten (Doritos or Clodhoppers). Our new living room, with its hardwood floor, made doing this pretty impossible.
 
The rural life sure had a lot of negatives, but I have to admit that I did have a good child/young adulthood. Lots of places to walk to, safely. School, for the most part, was okay. And the small town vibe was pretty nice. 

As I work towards my second decade in the city, moments like the ones above have given me a greater appreciation for where I grew up. 

Cheers

Return to The Scooterverse

 

Past Blogtobers, I'd have a lot more done and shared by now, but the month's been a wee bit busier than I anticipated with work and planning for some near-future events (speaking opportunity, work retreat, and a rock concert, all of which I will write about when done!)

The busyness though, has put me in an extra-creative sort of mood and sucked me back into The Scooterverse.

During the pandemic, I did a lot of free writing and creative challenges. One month, I combined ideas from a couple Scriptwriting projects like a one-act play and TV series-turned comic book pitch, as well as characters I created messing around on Heromachine, a character creation website that's sadly no longer functioning, to create my own fictional universe, The Scooterverse, writing profiles and mini origins for the various characters and creatures I made.

Suffering a bit of writer's block a couple weeks ago, I opened a few Scooterverse documents up and expanded on things here and there, just for fun. I've been writing since, and just turned one of my origins into a four-page story, The Trial of Sekhmet. Nothing to post, share, or submit anywhere (sorry), and could use polishing, but it looks pretty good!

I'll still try and write one or two Blogtober posts, but I also want to try and write at least one more story too.

Cheers!

Where to Next?

 

In the last three years, I've been to The Royal Tyrrell Museum in Drumheller, Science North in Sudbury, and The Biodome in Montreal. 

So, where do I go next??

There's the Joggins Fossil Cliffs in Nova Scotia, where I could also squeeze in some family visits. L'Anse aux Meadows Viking settlement in Newfoundland is still high on the destination list. Or do I go big for my 40th and plan for the Smithsonian? All good choices.

Something to think about.

Cheers!

Biodome/Insectarium 2024

 

I never took much of a vacation over the summer, so a few weeks ago my father and I took a fairly spontaneous day trip to Montreal’s Biodome and Insectarium.
 
We had a lunch lovingly made and packed for us the night before, left early the next morning, got breakfast, and drove to Montreal.
 
The Biodome is part of Montreal’s former Olympic Stadium (the velodrome). 

A lot of walking to and from where we wanted to go, but worth it.

 
The Biodome contains five ecosystems representing life in parts of the Americas: the Gulf of St. Lawrence, Sub-Antarctic Islands, Labrador Coast, Tropical Rainforest, and Laurentian Maple Forest.
 
Dad and I did the Gulf first, which was two levels. The top level was a few tidal pools with starfish, urchins, and anemones, then rocky outcrops and perches for ducks and seabirds. 

The bottom level was an aquarium. There were small tanks with lamprey, more starfish and anemones, and shrimp, and a much larger tank with bigger fish, chief among them several black sturgeon.

 

At first I thought they were sharks! Photos don’t do justice to just how massive and prehistoric-looking these things were.
 
Next, we went into the shared Sub-Antarctic and Labrador environ. Freezing cold with icy walls, but nice on a hot day. This was filled with puffins, murres and my Dad’s favourite, penguins!

All different species of them, from one or two gigantic king penguins to smaller rockhoppers, some of which were pretty good at showing off for people.

From there, we went into the incredibly humid rainforest. Pro-tip: do this BEFORE the cold stuff!
 
In the main environment, we saw macaws, an alligator, tamarins (tiny monkeys), very well-camouflaged capybaras, and a couple odd-looking birds. Attached was a darker exhibit with poison dart frogs, bats, and piranhas.

Lastly was the Maple Forest, basically the same ecosystem as where our family’s cabin is. A beaver lodge, raccoon, a couple river otters, and a pair of lynx (one of my favourites!)

That was it. I bought a little souvenir magnet before leaving.

We then walked back to where we parked, looking at various Olympic displays on the way.

Inhaled our lunch and drove to the Insectarium, located in a nice little park around the corner.

A very random place, but probably more fun than the Biodome. The entrance is modeled after a termite mound. Very tight and narrow, brownish stucco looking like dirt and almost pitch black, with little tunnels (obviously made for little kids).

Around certain corners are little visual treats like flower-shaped lights on the floor and a Bug's-eye View simulator.

This leads to a room full of mounted insects, collected together based on themes like colour, size, antennas, and horns.

Camouflage

The final part of the Insectarium was a giant greenhouse, teaming with butterflies and other insects. I got dive-bombed more than once, and had one or two briefly land on me.

One of the employees was showing a group of visitors a Caribbean stick insect. When they were finished, I approached to learn more, and she asked me if I wanted to hold it. Tickled a little bit, but otherwise didn't feel weird at all!

 Right before the exit, we saw a tree full of leaf cutter ants, actually cutting, eating, and marching with leaves!

We drove to a deli for a smoked-meat sandwich before driving home.

Another year, another fun trip, and sciencey place I can say I've visited.

Cheers!

Blogtober 2024

 

It's almost time...

Taking advantage of a nice, sunny, long weekend to plan a month of blogging, start writing a couple posts, look up AMC's Fearfest schedule for this year, and make sure the first few spooky movies are set to record. I may even engage in some light Joubert syndrome awareness/advocacy at work this month.

 Cheers!

Work Series: Work and Self-Esteem

 

Work has done a lot of good for me. 

I’ve written about how my current job has made me realize how much I’ve accomplished, and given me plenty of opportunities to get out and enjoy some time to myself. Some added financial independence has been nice as well.
 
Above all else though, paid employment has helped a lot with my psyche and self-esteem.
 
My search for work was long and occasionally frustrating. With the exception of a brief volunteer gig at the local hospital one summer, the small, rural town I grew up in offered no opportunities for a physically disabled adult looking for a job. Moving to the city and taking Scriptwriting provided significantly more, and better, prospects, as did a few volunteer opportunities and internships soon after, but regular employment and a paycheck still eluded me. My parents were getting frustrated and I was getting desperate. Worse, I was starting to feel like I was conforming to the stereotype of a “lazy pensioner.”
 
Things hit rock bottom around the beginning of summer 2017. The employment agency I was with at the time wasn’t getting me anything, and I had ben pretty-well blown off by a couple local politicians after turning to them for help with searching for work and other disability-related services. It came to a head quickly, and I broke down one evening. That, and some encouraging conversations at the Phoenix Joubert conference the following month, were what convinced me to join LiveWorkPlay. Within a year, I had a job!
 
Work necessitated finally setting up some homecare, which meant more self-advocacy and responsibility on my part and, just as important, less for my parents. All of this led to more freedom, independence, and the sense that I was making a contribution and really doing something.

Cheers!

Work Series: Work as Respite

 

I'm grateful for every bit of help I receive on a daily basis, and for those who give it, but the regular routine of family, work, supports like homecare and Para Transpo and, depending on the time of year, medical/care appointments, can get overwhelming. It doesn't take long before I find I need a break.

I've been fortunate to have been able to work right in the heart of downtown Ottawa for the past two years, where there's lots to see and do. Plenty of opportunities to get out and be on my own for a bit.

Even if it's pushing my ride ahead in the morning or back in the afternoon by a half-hour to an hour before or after work, that's plenty of time for a decent walk or a chance to sit and read a chapter or two of a book with a nice drink. Those little moments make all the difference between sanity and frustration.

Cheers

Work Series: Drawing on Experience

 

For most jobs or opportunities I’ve applied to, I’ve never been able to go into much detail about past experience, since I either didn’t have any or it wasn’t very applicable.

 

While going through the process that led to my current Communications position at work, I was able to rely on pretty well everything, including public speaking, what little I did in Public Relations, and this blog! I was even asked for writing samples and sent links to some old disability articles.

 

Impressive as it was, it was also a slightly strange feeling. I’ve never been able to draw on so much before. And, weird as it may sound, I never really realized until this moment just how much I’ve done in my adult life.

 

A very amazing feeling, for sure.

Cheers!

The Work Series - LiveWorkPlay

 

I’ve been wanting to do another series for a while, and recent good happenings have inspired me to write a couple posts about work.

 

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Might as well begin (roughly) at the beginning.

I became a client of LiveWorkPlay seven years ago, after many years of either unsuccessfully searching for work on my own, or relying on other job agencies with roughly similar results.

I remember being reluctant to work with them, mostly because of some stupid personal prejudices, but their attention to inclusion and individuality won me over.

LiveWorkPlay’s approach to securing employment was different compared to what I’d gone through before. A few months after becoming a client, I met with a woman who worked with me to create a profile based on what I was looking for, my strengths and weaknesses, and any restrictions/limitations I had. Since I already had a resumé, she worked that in as well.

 

The following winter, I got a couple offers from a new job coach. Those fell through, but later in the spring I got one with a guaranteed interview (softer, as per LiveWorkPlay’s style) and document based on the information in my profile. That was an administrative position with the government, which I accepted. My coach met me on my first day to make sure I was set up fine, then left when I was comfortable.

 

That’s typically been the approach with subsequent job coaches I’ve had through the group. They know I’m capable of being relatively independent so they act more hands-off, usually looking for regular email updates and meetings when needed/wanted.

 

In 2022, they were quick to find me another job, where I’ve just extended my contract into next year.

 

Since joining LiveWorkPlay, I’ve used them exclusively for employment assistance, but I’ve recently started getting involved with them in other ways.

 

Last month, my job coach invited me to a barbecue LiveWorkPlay was holding one evening on the field of Ottawa’s pro football stadium. I’d never given much thought to attending any of their events in the past, except for briefly jumping on a free virtual one during COVID, but I’d seen photos of this barbecue from a year before and it looked like fun, so I got myself a ticket.

 

Decent food, good weather, a great venue (I accomplished a minor Bucket List item by running onto the football field before leaving!), and met some very nice people. I was even asked if I would be willing to speak as a panelist for them at a future employment event. I’d definitely consider attending future occasions.

 

For being hesitant and taking so long to be a part of LiveWorkPlay's greater community, I’m impressed with what I’ve been able to accomplish, thanks to their support.

Cheers!

A Great Summer Read

 

Two years ago, my mother got me James Rollins' Kingdom of Bones for my birthday. The cover mentioned soldiers, scientists, and supernatural stuff, so she figured I'd like it.

She was right!

I read it later during my trip to Drumheller, finishing it by summer's end over the course of a few trips to the family cabin, and thoroughly enjoyed it.

 I came to find out afterwards that it was the latest book in Rollins’ Sigma Force series. Sigma is a government-affiliated team of “scientists with guns.” Each novel focuses on mostly standalone missions that often combine historical events with scientific and pseudoscientific details. Very much Dan Brown, Michael Crichton, and Tom Clancy combined. 

Rollins always includes notes about the historic record and scientific record at the beginning of every book, and a “Fact versus Fiction” section at the end with the truth and inspiration behind the major plot points.

While the novels are pretty self-contained, they do include overarching elements like characters’ relationships and families, as well as a rivalry with The Guild, Sigma Force’s evil opposite.

 After Kingdom of Bones, I went backwards and got the previous Sigma novel, The Last Odyssey. Lost civilizations, ancient wars, and gigantic Grecian robot monsters drew me into this one. After that, I was addicted and quickly sought to fill out the rest of the series, with most books being small and engaging enough to enjoy during summer trips, cabin time, and sunny trips around the city.

I just got the newest release, Arkangel, the other night (at a reduced price!), which follows up on a massive cliffhanger. A few other books in the decent stack I’ve been accumulating since around May to get through first, but looking forward to diving in.

 Cheers!

Solo Staycation: The Sequel

 

I managed to survive another Summer on my own, with my family being on the East Coast since the end of June.

Like last year, there was plenty of work, junk food, Netflix, getting out when it wasn't blistering hot outside, and a weekend at the cabin when my Dad flew home for a week.

Unlike last year, there were a lot of surprising firsts.

Literally the day my Dad left, our oven overheated and smoked up the main floor of our house pretty bad. Smoke filling the kitchen and smoke alarm sounding, I went into total panic mode. I got things stable, but I was pretty frazzled. Called my father to talk me down, and he figured something on the oven's bottom caused it to smoke. He was right, and told me I'd need to clean it. I waited a few hours for it to cool down, then got soapy water and some scrubbing pads, removed the grates (easier than I thought), and scrubbed the best I could. I repeated the process the following day, turned the oven on, and let it go for a couple minutes. No more smoke and very little smell!

More firsts came near the end of July. 

For a few different reasons, I was unable to get my nails cut by my homecare worker, and my toenails were getting rather long and unseemly. In a bind, I started to brainstorm possible solutions. Rather than putting up with an expensive assessment at a foot care clinic, I phoned a local spa for help. I'd been there once before for a quick haircut and they were pretty good. I explained my situation to the receptionist, and she recommended a mini pedicure, so that weekend I booked Para Transpo to Exhalo Spa and enjoyed a pedicure. Great service!

I also went and got groceries that same afternoon. Something I've done before, but not since college.

Definitely not as fun, but that week was the first time I've gotten through a cold on my own.

At the end of that week, my cold having thankfully broken about a day prior, I went to CHEO on my own for a follow-up appointment with Genetics (first since the pandemic). 

A little more work and that brings me to now, with my family set to come home this weekend.

It's been a fun, adventurous time, but I have to say that I missed everyone A LOT more than last year. If I had to do it over I probably would've been tempted to book a couple days off to fly down with them, even for just a little while. Lesson for another time, maybe.

Cheers!

First Good Day in a Week

 

Last week was not the best.

I developed a cold early on, which lingered for a few days. After that, temperatures here skyrocketed, with the humidity pushing things into the high 30s/low 40s by the weekend! Both events necessitated a week of working from home, which would have been nicer if not for the aforementioned illness and weather.

Things always seem to balance out though, and the powers that be granted me a really good day today.

I started a new contract with work. Same place, but a new position with their Communications team, which lets me write and draw on more of my background and experience!

For lunch, I made a last-second decision to take a quick walk and get some A&W. Great weather and tasted delicious.

And for the past few hours, I've been glued to my computer reading through Knee Brace Press, a disability/chronic illness-focused website. They accept submissions for short stories and essays, so I've also been brainstorming ideas. 

Haven't felt this creative in ages!

Cheers

Necessary Spa Day

 

Often, I can count on a few of my homecare workers to be able to cut my nails for me, since poor coordination prevents me from doing it myself. Barring that, I'll ask a family member for help.

Unfortunately, I wasn't able to get them done this week.

Not wanting to go into work with gross-looking nails, I brainstormed possible solutions.

It came down to a local footcare clinic or spa. 

The clinic required an assessment on top of the appointment and was a little more expensive, so a spa day it was!

I'd been to Exhalo Spa before for a quick haircut, so they had my information. They were pretty understanding when I told them about my situation, and recommended a quick pedicure, which I booked for earlier today.

Got there roughly on time, and the the woman doing the pedicure was very nice and helpful, even helping me up the two small, but precarious steps to the station. 

I got my cuticles done, nails cut, and callouses (caused by my orthotics) shaved and scrubbed. 

Walked over to the grocery store for a few things afterwards and got a quick cab ride home (didn't want to wait too long for Para Transpo with bags of food on a hot day).

Another good hack for when I'm on my own and in a little bit of a bind. Also, a nice treat.

Cheers!

The Deliverance of Delivery

 

When you're on your own and the forecast starts calling for a multi-day heat event with humidity reaching into the high 30's, and you've got various mobility and respiratory issues, restaurant delivery is your friend.

Is it healthy? Usually not. 

Can it be expensive? Sometimes.

But it beats wasting the time and energy to make something, using appliances that will likely heat your living space up in the process, or checking the weather to calculate the best time (if any at all) to venture outdoors. 

It's not an every day thing, but it is a life-line, and a nice treat.

And, if you're lucky, you might end up with leftovers for several additional meals, another time saver.

Strange that at least one place knows me, but thankful for the service during this sweltering summer.

Cheers!

Forty Minus One

 

Monday May the 27th was my 39th birthday.

The family were all busy with work and other things Monday, so my official birthday celebrations started Friday and continued throughout the weekend.

Unofficially, I started things myself on Thursday by pushing my pick-up in the afternoon back by an hour and treating myself to a whistle dog and root beer at A&W downtown after work.

Friday, my mother and I went to see Kingdom of the Planet of the Apes. Great movie!

Early Saturday afternoon, my Dad and I changed things up a little from the traditional birthday burger and went to Ahora, a small Mexican restaurant in Ottawa's Byward Market that I've been meaning to try for a while. Decent burrito and nachos, and I tried horchata (sweet, rice-based drink) for the first time which was so good. As were their churros for desert!

My birthday dinner was Sunday evening. Lobster rolls, coleslaw, ceviche, and grilled shrimp with a delicious lobster roe butter made by my sister. It took about nine tries to blow out the candle on my brownie cheesecake, and got some nice gifts. 

And finally, Mother Nature paused a torrential downpour literally minutes before I was dropped off early for work yesterday morning, so I moved extra quickly and got myself an almond croissant and iced coffee for a birthday morning breakfast treat. 

A very nice, enjoyable few days. 

Cheers!

Review: The Subtle Art of...

 

The Subtle Art of Not Giving a F#$% by Mark Manson was recommended to me last year by the counsellor I was speaking with for help with some mental health issues.

The core message of the book is: "We only have so many f#$%s to give in this life, why waste them on stuff that's not important." The author explains how we're not as important as we think we are sometimes, and relates that to getting one's priorities in order and ultimately, learning how to relax and not stress out as much.

Around the time I bought the book, I was doing a lot of worrying, especially about trivial stuff like the weather and Para Transpo being a little late/early. "Subtle Art" helped a lot with managing that, and the crassness was a welcome bonus. 

Highly recommended for anyone dealing with similar issues.

Cheers!

Gettin' Out 2024: Semi-regular Occurrence?

 

A very nice afternoon of lunch, reading, and enjoying the Spring weather after an especially productive day of work, and a good end to a very wonky week. 

That makes two Thursdays in a row I've pushed back Para Transpo by an hour or so to enjoy a bit of "me" time, and I think it's something I may try and do as often as possible, so long as the weather is decent.

Glad Para Transpo's online portal allows for a little more flexibility sometimes.

Cheers!