Posts Tagged ‘childrens hospital of eastern ontario’

On Monday, my Wife arrived home just after 11 PM. Her Brother drove her, with his Daughter.
We hung out for two hours as they got ready for Bed.

I usually see his Daughter once a Year, and she’s a great Kid. A little wacky at times, but who isn’t when they’re ten years old.

I remember the first time that I met her.
My In-Laws, & my Wife all went to a Restaurant. I order Deep Fried Ice Cream, and she wanted to feed it to me. I thought that I’d end up wearing it, but no, she did great.

See, Kids, if you offer to feed a Disabled Family Member or Friend, Ice Cream or Beer, it’s a beautiful thing.

First, you’re helping us, which SOME of us truly appreciate, especially with food.

Secondly, it gives them a hands on experience about being around Disabled People, and shows them briefly what we deal with. It also gives you a chance to ask us questions.

Speaking of asking questions, I know I’ve said this before, but I can’t say it enough.
Sometimes when I go out, Kids ask me or their Parents “what happened to me”.
Usually Parents are quick to shush them or something. To me, that’s wrong.

I’d personally prefer if Kids ask me or ask their Parents, and that I or the Parents answer their questions.
Kids are naturally curious about life in general, especially about me.
To them, I probably look like a Giant evil Cyborg.
So, Parents, chill out, let them ask, and let me answer please.

If I can educate them, and hopefully help them not become ignorant, & shallow, & uninformed like alot of Adults, I’ll be happy to talk to them.

Adults, for the most part, are a lost cause.

I’m done my little speech now

Anyways…

We spent the next day together. The Weather was crappy, so we hung out, played some Games.

My Wife and her Brother decided to go get a Pizza, so I got to babysit for about twenty minutes. It was nice cause I never get to spend time alone with his Daughter.

I showed her some Pictures of me online, and played some games online. I wish we had more time together, but it was nice while it lasted.

It reminded me of when I was a Kid living in the Hospital. I looked after TONS of Kids, almost daily. We’d play Video Games, watch TV, listen to Music, play Board Games, or just talk. I’d do whatever it took to cheer them up, and make them forget their illness for a little while.

Anyways, a few hours later, my Brother-In-Law & his Daughter left to head back to his Dad’s, before heading home to Halifax today.

Speaking of today, all I’ve done is I met my Wife for Lunch near her work.
Then, I went to the Bank to get Laundry Change for her.
I’ve done my good deed for the day.

Speaking of Laundry, I’m gonna do some now.

First of all, I’d like to wish all of the Canadians a Happy Canada Day.

So, with today being Canada Day, I figured that I’d share some of my favorite memories of Canada Day.

Let’s start when I was a Kid.

As most of you know, I lived at the Childrens Hospital Of Eastern Ontario. Some of you also know that I spent the first six years in ICU.
At the time, ICU didn’t have any windows, so I wasn’t able to see Fireworks until I was at least six years old.

It was a big event for me.
Not only would I get to see Fireworks, but I also got to stay up late too.

I watched the show on CBC before they started, and suddenly I heard BOOM!
I started crying because I had no idea they’d be so loud.
I went to one of the big windows to watch it with the other kids.
After awhile, I calmed down, and thought they were beautiful.

A few Years later, or something is when my next story takes place.

One Year, my Mom took me to my Dad’s Office to watch the Fireworks.
We had a great view because he worked downtown.
At some point, I had to pee.
Normally, when I pee, I just whip it out and piss into a small Urinal that sits between my legs. Sexy eh?
As it turned out, my Mom forgot to pack it.
We couldn’t find any Cups or jugs that would work, so I ended up peeing into a Rubber Glove.

As if it wasn’t embarassing enough having my Mom help me pee, she also had to hold a Rubber Glove to my Crotch while I peed.

Luckily, everything worked out, and we enjoyed the Fireworks.

So, my next favorite one happened about six years ago.
I had just started talking to my now Wife, and had recently met.
She wasn’t able to be here for Canada Day that year, so I decided to one last hurrah.

I headed to a Bar in the Market, which had turned its Parking Lot into a huge Bar, complete with a Stage.
Lucky for me, the Stage had a ramp.
After a few Beers, I decided that I needed to get on the Stage. So, I started going up the ramp.
Well I tried to, at least.

I got stuck halfway up because the ramp was really steep.
I asked my Attendant to help me up.
We tried again, but something else happened.

My leg had fallen off the side of my Chair. Whenever we tried going up the ramp, my foot kept getting sandwiched between the ramp, and my Chair.
I started yelling, but my Attendant couldn’t hear me.
Eventually, we made it up on Stage, and I started dancing on Stage.
At that point, all was fine, until I went pee.

The Bar had set up Port-O-Potties, but I couldn’t fit inside. I peed outside, which was understood, but my Attendant decided to do the same.
He got caught, and they kicked us both out.
As for my leg, I woke up the next day to it being black & blue.
I thought I broke it, but luckily I didn’t.

My next & last memory that I’ll share here happened a few years ago.
My Wife & I were near Parliament Hill watching the Fireworks.
Suddenly, the Battery for my Ventilator started beeping just as the Fireworks began.

So picture this…

Most people had started running down the Street towards the Fireworks.
We were running away from them, and for some reason, screaming and yelling.
People were looking at us like we had done Acid and thought we were being attacked.

We made it home safe & sound.

So as you can see, I’ve had some crazy times on Canada Day. No matter what, I always make it a point of seeing the Fireworks.

I guess in a way, it reminds me of the first time I saw them.

All those Years ago, back in the Hospital.

Happy Canada Day!

Congrats to everyone involved in the CHEO Telethon this year. They managed to raise 6.2 Million Dollars, which is a new record.

I watched the show for most of the Afternoon, and even called in.
I donated $10, and I challenged anyone who knew me from 1975-1994 to double my $10 donation.
Sadly, they didn’t mention it on the air. It’s too bad because I’m pretty certain that it could’ve brought in alot of money for them.
TONS of people know me just from my days of living there.
Nurses, Doctors, Former Patients, Families, & the list goes on & on & on.

In an odd way, I feel like a former Childhood Actor.
As a kid, I was always featured on the Telethons, and interviewed for various things.

Ever since I left CHEO, I haven’t really been asked to return.
I did a Radiothon for them about five years ago, but that’s about it.
I really don’t get it.
In my mind, I’d be a great success story for them.

We could discuss my time there, and all the great Nurses & Doctors there, plus what I’ve been up to since I left in 1994.
It’d be like a “where are they now” type of segment.
Not to sound high on myself, but I really think they’re missing out on something here.

I plan on fixing that though, or at least trying to.
Over the next while, I’ll be trying to make my presence known to them.
Through emails, & networking with people, I’m going to try to return to them, more or less.

I hope to be on the actual Telethon next year.
Alot of people out there would really appreciate seeing me and helping them out.

My Wife knows about my plan and fully supports it.
Being in the spotlight or public eye isn’t her thing, so if it does happen, you’ll be seeing me back solo on the CHEO Telethon next year.

I like to hope that I’ll be involved in at least one or two CHEO fundraisers before then.

Stay tuned

As some of you know, I lived at the Childrens Hospital Of Eastern Ontario for nineteen years.
This weekend is their annual Telethon on CTV Ottawa, so I’d like to take a few moments to talk about them, and how they helped me.

I was born in 1975 with a rare form of Muscular Dystrophy called Nemaline Myopathy.
When I was six months old, my lungs collapsed, and I was rushed to CHEO, where I’d live unti 1994.

For the first six years, I lived in ICU, mostly because I was only given a year to live.
Due to my strength, and determination, and the Doctors & Nurses, I refused to give up.

Six years later, they decided to transfer me to 4 West.
4 West was full of kids my own age, and I was able to interact with them, which was a whole new experience for me.
I made a ton of friends, and was considered the “big Brother” to many. I’d literally spend hours hanging out with kids, and trying to distract them from their worries.
Whenever a new kid arrived, I’d be the one to show them around, and try to calm their fears.

Sadly, most of those kids passed away.

Despite that happening, I wouldn’t trade those memories in for anything. I learned quite alot at a very young age, which has helped me today.

In 1992, due to funding cuts, 4 West was closed.
Myself, & another Male Patient were transferred to 5 North.

I refer to these times as my dark days of CHEO. The reason is because 5 North is where they put the long term care patients. It mostly consisted of babies, and/or kids who weren’t really able to communicate. Needless to say, I wasn’t happy to be there, and I refused to let my friends see me like that.

In 1994, I left CHEO.
At the time, and for several years following, I tried to seperate myself as much as I could.
In my mind, I didn’t want to only be known as “CHEO’s longest resident”.
I wanted to be my own person, and do other incredible things with my life.
I’ve certainly done many things since 1994.

At this point of my life, I feel that I’d like to do my part in discussing CHEO and everything they did for me in nineteen years. The Nurses & Doctors there saved my life many many times, and for that, I will always be grateful.

Recently, I’ve been lucky enough to have contact again with a few Nurses there, and they’ve shed light on what I was like back then.

It was tough for all of us, but we made the best of it, and most importantly, they helped me survive, and made me into the person that I am today.

Without CHEO, I wouldn’t be here right now.

To those of you in Ottawa, Canada, I ask you to please donate to CHEO.
My Story is only one of millions & millions of kids that have been helped by them.

For those not living in Ottawa, please donate to your local Childrens Hospital.
There might just be another kid growing up there like I did.

Thank you

So I had an Appointment today.
I don’t really mind discussing it, because I think it’s beneficial, not just for me, but for others too.

I’ve been seeing a Social Worker for a few years now.
The main reason why I see her is because I have issues stemming from my nineteen years of living in a Hospital.
Let’s face it, I think most people who survived an ordeal like that, would have issues.
To this day, I still don’t fully understand how Nurses, Doctors, and Hospital Staff do it.

Anyways, I started seeing Psychiatrists when I was a Kid, and continued throughout my Teen years.
Being a Teenager’s hard enough for most, but toss in constant death & dispair, and that’s just not good or healthy.

I need to point something out though.
I don’t want people to get the impression that I only had bad times in the Hospital.
Obviously, I had some good times, and I do have many fond memories.
Most of the Nurses & Patients played a huge role in making me who I am today, which for the most part, is a good thing.

Generally speaking, I think I do a good job of running my life.
For the first years of living on my own, it was rough.
I drank alot, did Drugs, and alot of other stuff that I shouldn’t have done.
In theory, I probably could’ve ended up in Jail.
But hey, nobody’s perfect.

All that matters right now is that I’m much better off now than I was 7-8 years ago.
Somehow, I’ve managed to survive that.

My sanity on the other hand, well, the verdict’s still out on that one.

Serenity now, sanity later.

I decided to post yet again.

I’ve always considered myself a Media Whore of sorts.
When I was a Kid, the Media were all over me, mostly because of my situation. No, I’m not talking about my Abs. I call my Abs, the Disaster Zone, for the record.

My “situation” refers to my rare Disabilty, and the fact that I was living in the Hospital. Everyone loved to hear that stuff, especially when it was Telethon time.

Between the Telethon for the Hospital, and the Jerry Lewis one for Muscular Dystrophy, I was seen alot, at least locally.

When I left the Children’s Hospital Of Eastern Ontario in 1994, there was tons of Media Coverage about that.
Everything from Radio to TV, I was visible.
I even remember getting asked for Autographs for awhile after, which, I must say, was kinda odd. It felt pretty damn good though.

I think the last time I did a Media Blitz was in 2005.
At the time, I faced the possibility of losing my independence due to funding cuts.
Through letters, will power, and determination, I managed to convince the Government that I was worth spending the Money on.

Nowadays, I’m pretty much just shown on TV if I happen to be passing a TV Camera while they’re filming something. I don’t really have a problem with that, per se. It just makes me feel like I’m blending in with the rest of the World, and not just a sideshow attraction.

Luckily, I’ve never had the Media spread lies about me, or make my life worse. In my case, they’ve only helped me, and I don’t think I’d be where I am today without their help.

Thank you for letting me get my various messages out there to the masses.

The next time I’m on TV, get noticed/get mentioned on the Radio/TV/Newspaper/Websites, I really hope it’s for my Comedy, or my Blog, or at least something good or worthwhile.

I’m not just another freak show, at least not in the Media.
Let’s leave that crap to Tiger Woods, and Jesse James.

In other news, I’ve been training new Personal Care Attendants.
For those unaware, I require 24/7 care, mostly because I use a Respirator 24/7 to breathe.

Speaking of which, the other day, a Woman I’ve known for many years messaged me on Facebook. She was actually surprised to learn that I use a Respirator and “have something in my throat”. I found it surprised because we used to hang out pretty often. We were pretty drunk usually, but I still found it surprising.

To me, it’s a compliment actually.
I always do my best to hide the thing in my throat when I go out anywhere.
Needless to say, I’m doing a pretty good job then.

Well that’s it for now.

Q & A — Part Two

Posted: August 11, 2009 in canada, comedy, Daily Life, Daily Living, disability, ontario, ottawa, personal, Uncategorized, writing
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Last night, I did Laundry and helped my Wife with Grocery Shopping. I like to push the Cart around & then I carry her bags home. Yes, even disabled people can help able bodied people. I put the handy in Handicapped. Alot of people look at me and seem amused that I can push a Cart with my feet & legs.
I’ve got mad skills.

Tonight, we’re gonna watch America’s Got Talent.

After I did my post yesterday, I thought of more questions for the Q & A, so here’s some more.

What’s your favorite food?

BS Answer: I eat power pellets like Pacman.

Truth: I have a hard time chewing food, so I usually drink Ensure & Isosource. Basically, they’re meals in a can, or as I call it, shit in a can. When I was younger, I used to eat pureed Hospital food. If you’ve ever seen or had Pureed Green Peas, you know why I choose to eat from a can now.

Occasionally, I enjoy eating soft foods like Ice Cream, Yogurt, Popsicles, Gelato, Chocolate anything, Creme Brulee, Cake, Pancakes, etc etc etc

What TV shows do you watch?

BS Answer: Informercials! Lots & lots of Infomercials!

Truth: I’m a big fan of Family Guy, The Simpsons, & South Park. I also watch CSI, CSI: New York, Law & Order: SVU, Criminal Minds, Big Bang Theory, Two & A Half Men, How I Met Your Mother, The Daily Show, The Colbert Report, The Tonight Show With Conan O’Brien, Jimmy Kimmel Live, Late Night With Jimmy Fallon, WWE Monday Night Raw, WWE Friday Night Smackdown, & many others.

What Music do you listen to?

BS Answer: I LOVE Elevator Music & sometimes I dance to the beats of people farting.

Truth: I like different types of Music. It depends on my mood. Mostly, I’m a Rock guy, but sometimes I listen to Blues or Jazz. One of my guilty pleasures is watching Music Videos from the 80s on my TV. It’s cheesy as hell, but HILARIOUS, and brings back memories.

What kind of Movies do you like?

BS Answer: Porn! I’m a huge Perv for Porn. I’m Pervy for Porn, baby!

Truth: I’m a big fan of Comedies. I have so many favorite Movies that it’s not even funny.

Do you drink and/or do drugs?

BS Answer: Well I snort two lines of Metamucil every day. That’s why I’m such a happy person now.

Truth: While I enjoy the odd Beer or Wine, my drinking days are behind me. As for Drugs, yeah I’ve done Drugs in the past, but that’s behind me too. Basically, I managed to quit both cold turkey, which was really tough to do.

When’s your Birthday?

BS Answer: I don’t really have one because I was made in a Factory.

Truth: January 4th.

What’s your opinion of the Internet & Social Networking?

BS Answer: If I can get free Porn, bring it on!

Truth: I LOVE the Internet & Social Networking. It gives disabled people a bigger & better chance to be seen & heard. I don’t always understand how certain sites or things work, but I have a big online pressence, and I plan on expanding that, as much as I can.

What’s the story, morning glory?

BS Answer: A stupid name for a CD.

Truth: How the hell would I know? Ask Oasis & let me know what Noel said after he punches you.

What’s your goal in life?

BS Answer: I want to solve World Hunger.

Truth: This is gonna sound selfish, but I want to be famous Worldwide. I don’t care if it’s a Movie, a Talk Show, a TV show cameo, or a Commercial, I want to be famous. I was actually in a Movie/Interactive DVD Video Game a few years ago, which was pretty fun. The “set” was right near where I live. I played a bad guy, which was the main reason why I signed up for it. Sadly, I don’t think it ever got released.

Besides that, I’d love to live in a Wheelchair Accessible House with my Wife. It’d probably be a two bedroom. Of course, the Basement would be like Pee-Wee’s Playhouse, or close to it.

What’s the meaning of life?

BS Answer: Well, Life is a Cereal apparently, so it’s tasty.

Truth: Life’s too short to even consider that. Life is what YOU want it to be. Have fun, gamble, drink, do drugs, work, sleep, be rich, be poor. Whatever your life consists of, enjoy it, and have fun. It’s a big plus if you can make a difference in a someone’s life, but you don’t HAVE to. As long as you’re enjoying it, nobody gets hurts, & you’re not doing too many illegal things, that’s what life should mean.

That’s it for now, I’m all tapped out.
I’ll be back tomorrow with a recap of America’s Got Talent.

Thanks for reading.