Monday, 23 April 2018

Getting Out, Getting Work (hopefully!), and Getting Realigned

Me with a dinosaur, just because
Things have been pretty eventful here the last little while.

Nice, warm weather has finally come to Ottawa, so that means getting out again and planning trips. Recently, I booked the train trip and hotel for another TCAF (Toronto Comics Art Fest) weekend in a few weeks. Super excited, but due to cost, it'll also be my last so I plan on squeezing every bit of fun out of it. Fingers and toes are crossed for good weather!

In other good news, after politely nagging them for a little while, Live Work Play finally got back to me with a new possible work opportunity. They assigned me a new job coach and upon meeting her for the first time, she immediately presented me with a job opportunity! It would be a part-time administrative job with the Canada Food Inspection Agency doing mostly filing and data entry. Again, fingers and toes are crossed.

And, while it's not necessarily what I'd call news, I've recently started physiotherapy. My family noticed I've been tilted to the left and encouraged me to see a doctor. I sort of put it off for a while but, when I did, she recommended physio. I've been a couple times already. Seems my left hip is tight (I've had issues before) and my right leg may be a little longer. Massages, a few stretching exercises, some heat. I see my orthopedic specialist the end of next month, so hopefully between the two I can get things corrected.

More later when more happens.

Cheers!

Monday, 2 April 2018

CORD Conference 2018


It's taken a lot longer than I thought to get going on this post about the CORD (Canadian Organization for Rare Disorders) conference I attended last month, but here it is now.

I had attended one of their previous conferences here in Ottawa in 2014, but this time I was doing it on my own and as a representative/board member of the Joubert foundation.

The conference started fairly early on the 21st. After getting my name-tag (no Sharpie this time!) and a spot of breakfast, I found my seat. Being on my own, I was a little nervous, but a very friendly group of women from HAE (Hereditary Angioedema) Canada were nice enough to include me.

After a brief message from CORD's president, the presentations began. Most presentations and panels throughout the conference focused a lot on policy and making it easier for individuals in the rare disease community to access research and treatments.

As some of this was for potentially life-threatening conditions, I felt very out of place at times. I had initially wanted to bring up my looking for work, but felt it was in poor taste upon hearing what others were going through. Eventually, I realized that while some things may not have been applicable to me, they could benefit other people I know, so I became more active in the conference's proceedings. And there were still quite a few presentations and testimonials from patients and parents that were different and interesting.

The first speaker was a woman who works in genetics at CHEO (where I got my JS diagnosis). Her presentation was on what she called the "diagnostic odyssey", the journey individuals with rare diseases/disorders often go through to get a diagnosis, and how networks and research databanks are being set up on nation-wide and even global scales to help make the "odyssey" quicker and easier.

More geneticists and researchers spoke of the need for countries, Canada specifically, to make research and science priorities for the goals of organizations like CORD to succeed. Some specialists and patients related stories about going the extra mile to help a family overseas with a daughter with a rare bone disorder, and anecdotes about how Rasputin was the first major patient champion for Hemophilia (the czar's son had it, Rasputin figured out better treatment).

Next was what I thought was one of the most fascinating presentations of the entire event. The speaker was from B-Temia, a tech company from Quebec specializing in human augmentation. The presentation was mainly to showcase their invention the Dermoskeleton, a frame that helps the wearer with balance and support.

From B-Temia's website
Then came a demonstration. A man with a degenerative muscle disorder showed the conference attendees the Dermoskeleton in action. He started by having everyone simply stand and sit back down. He stated that without the Dermoskeleton, that simple action is almost impossible for him. He went on to describe his situation, diagnosed with this disorder only a few years ago, then searching for this technology. It was so amazing!

After lunch, there was a panel discussion/webcast focused on the idea of national pharma-care, and whether or not that would make it easier to access various treatments.

The conference's first day ended with a patient and parent panel, including one of the women I was sitting with, who told her story, as well as that of some of her family members who were affected by the same disorder, and a father who spoke about trying to access assistive devices to help his daughter succeed in school and learn to advocate for herself. Unlike other stories, this one was something I could relate to, and spoke to the man afterwards.

The second day of the conference was broken up into halves. The first was devoted to a group of individuals from Health Canada, discussing changes to their policies concerning rare diseases/disorders, research, reviews and sections of their website devoted to those topics. Very applicable to Canada's Joubert community, so I made sure to get lots of notes!

As a funny aside to that, their system for reviews is nicknamed R2D2. When the moderator joked, one of the women, in all seriousness, admitted that Health Canada also has a C-3PO (related to 3D printing).


After a lunch of fajitas and churros,  which was a real Mission Impossible-level task for someone like myself with dexterity issues and an addiction to Mexican food, who doesn't want to pig out and/or look weird in front of about a hundred or so people. (I made out okay, and lunch was delicious!)

That afternoon was devoted to a presentation and group activity on "Systems thinking", which emphasizes looking at the bigger picture and surrounding factors when analyzing an issue. In the case of a rare disease or disorder, it would mean looking at things like communities, school systems, or a person's income when addressing treatment.

And that was it. The CORD conference was an enlightening, and sometimes fun, experience. I'm glad I attended, and I'm very grateful to the Joubert Foundation for helping me do it and allowing me to represent them.

Cheers!



Sunday, 25 March 2018

Stop The Meanness


Recently, one of our local news personalities ended a segment with the phrase "Stop the meanness."

I believe the piece was about a motorist going at an officer, but it could almost apply to anything lately.

When did we start becoming so universally antagonistic to each other? It seems like every day there's another protest, Twitter beef, attack, or something someone's offended by. Always accompanied by the usual classless insults and, of course, the people who seem to show up and make things worse by being like those kids on the schoolyard who would chant "Fight, fight, fight!" Only now it's like "Retweet, retweet, retweet", maybe?

Have people just generally reverted to being a bunch of whiny four-year-olds??

Like this weekend. I'm reading the news about the gun control protests in the States, and right below are stories about representatives from the NRA and certain media outlets slinging insults at those involved. That's right, grown adults bullying kids (and others) for not wanting to die!

But that's just one specific example. This whole "culture of meanness" seems to be a worldwide thing. People need to grow up and stop it before someone decides to sling nukes instead of insults.

Just be kind, respect people's opinions and choices and, if you can't, then at least try to keep quiet and relax.

Cheers!

Saturday, 10 March 2018

That Other Adult Stuff


I write a lot about transitioning to adulthood with a disability and doing adult things, like going to college, looking for work, and travelling on my own, but there are still some adult experiences I haven't written about. Ones that some people may frown upon but, to me, were as noteworthy as any interview or solo plane trip.

I'm talking about things like watching adult entertainment (you know what I mean), trying various types of alcohol, being offered marijuana, and going to a bar.

For the record, my family members know about all of this stuff, so no big surprises here.

My first year in college, my roommate and I got cable for our TVs. On top of it, my roommate got pay-per-view. Mostly, we watched movies and wrestling specials, but one night a friend of ours came over and the two of them decided to rent an adult film and encouraged me to watch it with them. At first I was hesitant, having only been in college and on my own for a mere six months at that point, but I decided that whatever they were doing sounded a lot more exciting than watching the latest episode of Smallville by myself, so I joined in. Couple of guys, late teens to early twenties watching porn. Definitely an experience, albeit a ridiculous one.

My next big adult milestone came when I was old enough to drink. I'm not a drinker, but I have at least tried different kinds of alcohol. Some things I've liked, most I haven't. More of a Pepsi guy!

Speaking of drinking, soon after I was of legal age, I went with some then-classmates to a bar near the college I was going to one night. Hated the entire experience. Too crowded, too noisy, not my thing at all! Looking back, I think I was trying way too hard to fit in. I did it though.

Last on that list, marijuana. During my last stint of college, some friends were smoking pot and offered me a joint. I declined, not knowing how it would affect my breathing, but I did think about it for a few moments. Best part was my friends were really respectful when I declined and even started smoking from a distance where I could breath fine!

These experiences definitely aren't for a lot of people, and some readers may find this post a little odd, but they were all significant moments (to me, anyway) in my transition to adulthood, and ones I think individuals with disabilities, as well as their families, should be aware of.

I never continued doing these various things beyond the times mentioned, but I still had the experiences of each and, as a credit to my parents, I knew enough to handle those situations as maturely as possible.

And with all this talk of maturity and adulthood finished, back to watching some cartoons. (Kidding, but not really.)

Cheers!




Thursday, 22 February 2018

A Mighty Fine Opportunity


Bragging time!

Several months ago, I looked into submitting articles and previously written blog posts to websites for publication. I found one or two that offered payment, but first I wanted to try submitting somewhere that didn't, mainly for practice.

I found The Mighty, a health and disability website I've followed off and on for a while and one I've seen publish stories from friends in the past.

After signing up, I edited and submitted my recent Boy With The Beard post. I received a notification from them saying that they get so many submissions that mine may take a while to be published, or may not be published at all so, while positive, I didn't really get my hopes up.

I sort of forgot all about it, until today, when The Mighty finally published my story!!

For the first time in about four years, I've gotten something out and published! Again, this one was for free, but The Mighty is affiliated with other sites like Yahoo and The Huffington post, and there's a small chance that my story could appear on either of those!

So yeah, feeling pretty awesome over here! Now to do some more research into places that could actually pay me to write.

Cheers


Tuesday, 20 February 2018

A "Fantastic" Anniversary


Get it? Because Fantastic Four, and I'm a comic geek? Anyone?

Moving on.

This week marks The Rare Writer's fourth anniversary, and it's been my most productive year yet. As always, thanks to all the readers and followers out there.

Cheers!


Saturday, 17 February 2018

Innovation & Accessibility

This past Wednesday, I attended a really interesting event at Carleton University about innovation and accessibility. It was mainly a press conference to launch several initiatives by both the university and the Canadian government.

The event itself was recommended to me by the employment centre I'm getting help from as a potentially good networking event. Not many personal connections, but I did get a lot of information that could be useful in the near future. Maybe...

I'll be honest, when the representative for the Minister of Sport and Disability spoke and started using the same old terms and phrases like "inclusion", "government pushing towards...", and "aging population", the cynical part of me rolled my eyes and debated whether or not to walk out. I also contemplated standing up and shouting "I WANT A JOB!" at one point. Common sense prevailed however, and I stayed seated.

Eventually the stage was handed over to a group of professors who specialized in robotics, engineering, design, and computer programming.

They spoke about disability issues facing Canadians, accessibility programs at the university that enable students within those above fields to assist people with disabilities, and some of the projects that students and graduates have worked on.

Some of the more interesting projects included specialized machines to assist people with balance and prevent falling that could connect to the individual's shoes, accessible planters for the new healing garden at the Children's Hospital of Eastern Ontario, the creation of accessible tricycles, walkers, and other gadgets for residents of a rural Ugandan village, and a study into the bio-mechanics of sledge hockey players.

By no means am I a science and tech person, but this was just fascinating!

There's a similar event in a couple months where some of the projects mentioned will actually be shown off, so I might go to that too.

Cheers