No Motivation

 

Having one of those days where I just have zero motivation to do anything productive. Maybe it's the weather. Or, since tomorrow's Halloween, maybe a gremlin's messing with me. Is it weird that I hope it's the latter?

Cheers until my brain kicks back into gear!

Carleton U Speech and Considering More Professionalism

This Tuesday, I spoke to a group of Social Work students at Carleton University here in Ottawa as part of a panel about family and disability. The panel consisted of me and an older man who had become a quadriplegic after a diving accident at the age of 19. Between him and the professor, I think I learnt as much as the students did!

For my part, I spoke about living with a disability, focusing on family, being independent, and Joubert syndrome. People were very interested to learn about Joubert, and asked several good questions about getting diagnosed later and what my family members and I thought of it.

Overall, everything went well. Though, I forgot to mention the blog when I had the opportunity. Guess I've got to work on self-promotion a bit.

After the class, the professor asked me if I wanted a letter, for proof or a keep-sake. At the time I declined, feeling that it would be too forward to ask for something. Later though, I sent him an email asking for one at his convenience. I had decided it would seem more professional to have something like that.

Speaking of professionalism, this speaking opportunity has convinced me that I need to step-up my game a bit. When I get the letter, I'm going to combine it with the articles I've written, some of my longer blog posts (the ones about bullying, words, the conferences, etc.), and maybe a résumé for speaking and writing into a portfolio of sorts. I'm also going to start looking for more paid opportunities.

Cheers!

What's It Mean to Me?

I often hear the question "What's it mean to you?" posed or asked in relation to different aspects of Joubert syndrome. People are curious about how topics like genetics, getting a diagnosis, and even social media apply to you personally. I've even asked people about genetics a couple times. Well, I was reading a couple of posts on a Joubert Facebook group the last couple days that sort of relate to the subject, and I thought I'd write about what it all means to me.

I can't comment too much about genetics because, to be honest, I don't know all that much about the subject, so I'll skip right ahead to what I thought about getting diagnosed.

As I've mentioned before, I was diagnosed with Joubert syndrome relatively recently (a few weeks shy of my 26th birthday). When I got home after meeting with a geneticist and getting the formal JS diagnosis, my mother asked me how I felt about it. I said I felt that "Joubert syndrome" was just a name. Now, I think my mother was looking for a more profound answer, but the truth is that's what it was at the time, just a name. I didn't wake up the next morning a different person, and my life up until that day wasn't magically erased because of a diagnosis. Not to make light of anything, but they could have called it Scott MacLellan syndrome for all I cared at the time.

Beyond seeing a couple new doctors, Joubert syndrome never really meant anything to me until the conference in Minneapolis, when I actually got to meet others with JS in person for the first time. And now, as I continue to meet and interact with more people, especially other adults with the syndrome, Joubert syndrome means a lot more.

And speaking of meeting and interacting with people, there are a lot of posts and articles out there about what social media sites like Facebook mean to special needs parents and/or families, but not much about what they mean to the people with special needs themselves. Now, I'll probably expand on this in another post (in fact, I think I will) but for now I'll say that for the past four years, social media has been a lifeline. I've met so many great people, from literally all over the world. Without social media, specifically Facebook, I would have never met anyone else with Joubert my age. And, I wouldn't be writing this post, allowing me to share my thoughts and opinions on subjects like this one.

So that, in a nutshell, is what it all means to me.

Cheers!

(Probably) One Last Big Adventure

Yesterday was my usual monthly afternoon/night out (not that that's the only time I get out) for dinner, drawing, and comics with the Ottawa Comix Jam.

Since the weather this time next month most likely won't be optimal for walking around, yesterday was probably my last big excursion to downtown Ottawa for the year, too.

This time I chose to do a bit of exploring, going past one of my usual stops to see what new places I could find.

On my little journey, I first found a new book store where I actually got some early Christmas shopping done. Yes, me, the person who usually draws a blank on what to get people until mid-December, then frantically begs to get driven around to various stores with only a week to spare, started shopping in September!

I also went to a really nice British-style pub for lunch, which ended up being a great place to get some writing done.

After that, it was the same-old usual of new comics, a chai latte, then dinner, drawing, and book/TV recommendations at the Jam.

I'm still going to get downtown as much as possible until the (arrgh!) snow comes but as I said, this was my last big push and it was a pretty good one.

Cheers!