Tuesday, 14 November 2017
While it's true that the Joubert syndrome went unnoticed for that long, even when it was noted on an MRI, I did still have an answer.
For 26 years, I had cerebral palsy or some form of it. It's what doctors noted on my files, what teachers and school staff heard in IEP meetings, and what I used to get various services and participate in disability-related activities. In hindsight, it wasn't an accurate diagnosis, but it was one that fit and made sense at the time.
Yes, there were things that didn't mesh with a traditional cerebral palsy diagnosis, but most of those things were either fixed (extra finger, crossed eyes), or just dealt with as best as possible (frustration, leaning). The important things is everything was handled, regardless of what I was diagnosed with at the time.
So, while finally getting the Joubert diagnosis was great and has made a huge difference, going 26 years without it wasn't all that bad, either.
Thursday, 2 November 2017
Well, Joubert Awareness Month and Blogtober are officially over, and I'd say they were both huge successes!
JS Awareness Month went over very well, with many people contributing in their own way.
The Joubert Foundation surpassed their fundraising goal of $31 000 in 31 days! Some people shared daily facts, photos, or stories about their children. One friend of mine, whose little girl has JS, collected and shared 65 stories/photos of affected individuals, myself included.
For my part, I was able to crank out 13 posts on the blog this month thanks to Blogtober, with 2145 views in total. 1543 of those views went to Joubert and disability-related posts!
Blogtober proved to be a pretty good experiment and kept me busy for most of the month. Definitely something to do again next year.
Tuesday, 31 October 2017
I post a lot about adults with Joubert syndrome. There are many reasons for that, the most obvious one being I am one. And as an adult with Joubert syndrome, I feel it's important to make it known that there are many other adults like myself out there with this rare disorder.
I've connected with quite a few of those adults over the years, but I wanted to save this final post of Joubert syndrome Awareness Month to show off some of those folks who I feel have become friends and were awesome enough to let me include them in a post.
*Photos and inclusion used with people's permission*
Johan, from Sweden. Johan was one of the first adults I connected with shortly after I was diagnosed. A pretty big movie fan, he's currently going for his Masters in Internet Security.
Crystal, from Washington State. Crystal and I met shortly after she was diagnosed with JS, when her mother reached out to people on social media. My father told her about me, then she and I connected. Within minutes of that, Crystal and I were chatting and quickly became friends!
I've used the photo at the beginning of this post several times before, but they're pretty great people so it's being used again. Left to right, we have Alex, from Florida. Met him at the conference in Chicago after my presentation. We connected on social media soon after and like a lot of the same movies and TV shows. On the other side of me is Noldon from Ohio, who I've mentioned a few times on here already. Then there's Erika from Saskatchewan. Erika's one of the few Canadians I've met with Joubert syndrome, is always a good source of encouragement and a quick chat, and has recently started an internship.
Kaci, from Arizona. Kaci and I connected through the Youth and Adults with JS group I created on Facebook and quickly became friends, often chatting about books or whatever. We met in person at the Phoenix conference, where we led a discussion group for the teens and younger adults in attendance.
When I was diagnosed, I knew Joubert syndrome was rare enough that the chances of meeting someone like myself would be few and far between, and I was okay with that. That's why getting to know these awesome people, and others like them, is always so great!
Many thanks to each of them again for allowing me to include them in this post.
Monday, 30 October 2017
This past August, my grandmother came to visit for a while. Since she's not well, my mother thought it would be best for her to stay in my room. It's on the same floor as my parents and sister, close to a bathroom, and the stairs are easier to climb. That meant I was able to stay in our basement.
I did this for a little while last Christmas, and it was pretty fun. Had my own space and was able to do things after my grandmother went to bed. That lasted for just under a month.
This time around, my grandmother stayed for about two weeks. Originally, I was going to move back to my room a day after she left, but my father wanted to go to our cabin that weekend so I stayed for a couple more days. Then a couple days became another week. That turned into a month and now, as of this week, I'll have been staying in our basement for three whole months!
It's a pretty nice space. It's furnished, with a living room area and TV. We sectioned off part of the area to make a small bedroom which is nice too.
Mostly, I just like the feeling of having my own space that's far enough away from the rest of my family, without actually leaving home.
I may move back to my room soon, especially with the colder weather coming. On the other hand, my grandmother's going to be here for Christmas, so I may just stick it out until the new year!
Saturday, 28 October 2017
|No way was I using that other symbol|
I've tried to think of a nicer way to spin the following post, but I can't. Deepest apologies if it upsets anyone. Here goes...
Why can't humanity get it that the Nazis weren't a good thing?!
I can't and won't begin to understand the political climates of other countries. I also realize that people are entitled to their own beliefs. However, I can not get over the seemingly global current obsession with a group that did so much evil!
As someone with a disability, it's a little sickening to see the resurgence of a belief system that ultimately lead to people like myself being thrown in gas chambers.
It's not my place to totally understand what's going on in the world, but can we all please just show each other a little more respect and kindness?
No, that's not a typo up there.
With this being Joubert syndrome awareness month, I wanted to put some other JS-related blogs in the spotlight. Many of them have been kind enough to mention me, so it only seems right to do the same for them!
Mack's Mom by Whitney Steele
Whitney started Mack's Mom in 2011, shortly after her daughter Mackenzie was diagnosed with Ocular Motor Apraxia (OMA) and continued it when Mackenzie was diagnosed with Joubert syndrome the following year. In 2013, Whitney attended my presentation at the Joubert syndrome conference in Minneapolis, connecting with me shortly after. That fall, a video of my presentation was included in a post Whitney wrote about the conference. Mack's Mom continued until earlier this year, with Whitney hoping that someday, Mackenzie might tell her own story.
The Unexpected Journey by Anna Dietzen
I first heard about The Unexpected Journey in 2014, when Anna was looking to share the stories of people within the JS community. I sent her an email and she posted my story. Since then, I've been an avid follower of Anna's blog, which focuses on her family and the lives of her boys Parker and Lane, who both have Joubert syndrome.
The Journey Ahead by Stephen Mack
Though I've only just started following this blog, I've known Stephen and his family for quite some time now. Most posts in The Journey Ahead are about Stephen's family, especially his daughter Isabella, who has Joubert syndrome. Looking forward to following this one.
Embrace Positivity by Noldon Starks
Those who've followed my conference posts will be familiar with Noldon as a friend and fellow adult with JS. I started following Noldon's blog two years ago after we mentioned each other in posts about the Joubert conference in Chicago. Since then, I've followed his many posts, which are about a number of subjects and usually end with a very positive message.
Thanks to the author's for allowing me to share glimpses into their various stories.
Thursday, 26 October 2017
It's not too often disability collides with my various geeky interests but when it does, it's always exciting!
I heard about this book a few months ago and ordered it the second I was able to. Defying Doomsday is "an anthology of apocalypse fiction featuring disabled and chronically ill protagonists, proving that it's not always the fittest who survive."
I have to admit, when I saw the words disabled and apocalypse in the same sentence, my first thought was "The Walking Dead with wheelchairs. Cool." While that in and of itself would've been enough to pique my interest, I was surprised when the book contained nothing like that at all!
Instead, the stories in Defying Doomsday feature individuals with a wide variety of impairments like spina bifida and hydrocephalus, arthritis, autism, and schizophrenia, and look at how they cope in equally varied apocalypse and post-apocalypse scenarios such as alien invasions, acid rain, extreme drought, and even a world besieged by giant spiders!
The story that I feel showcases both disability and the apocalyptic setting the best would be the book's first, And The Rest of Us Wait, about a former pop star with spina bifida and hydrocephalus who's forced into a bunker with her family and others when part of Europe is threatened by an asteroid strike. When the impact happens, she forms a band to entertain the bunker's other occupants, while dealing with pain caused by a lack of access to medication and implants (the future!) made useless by a power-out, and facing other's concerns that her disability will hinder her should they ever return to the surface.
Probably the best part of the anthology, in my opinion, is a story featuring a war correspondent with cerebral palsy, who has a communication device implanted in her skull (seriously, the future!), protecting a fleeing spaceship from hostile aliens. Just writing that is amazing!
Not every story in Defying Doomsday is so uplifting though. Some can be pretty dark. Like one about a family afflicted with cystic fibrosis travelling through a nuclear war-ravaged landscape to a hospital hoping for a lung transplant for one of their daughters, only to find out on arrival that the
hospital was shelled. Or a story about a woman with autism whose lack of social skills, fixation on her cat, and strict adherence to routines cause her to let a former bully die in a downpour of acid rain.
Overall, Defying Doomsday was a great book to read, and I'd definitely recommend it.