Posts Tagged ‘19 years of living in a hospital’

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.

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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.

Not a whole lot happened last night. My Wife was busy cleaning her place before she goes away this weekend.

I figured today that I’d answer some questions that I get asked often or just things people wonder about me.

So here are some questions that people ask me or wonder about. (probably)

Are you actually disabled?

BS Answer: No, I’m just really freakin lazy, and I’m in it for the chicks and the SWEET parking spots.

Truth: Yes, I was born on January 4th, 1975 with a rare form of Muscular Dystrophy called Nemaline Myopathy. Muscular Dystrophy kills muscle cells. There’s various forms of NM and it affects people differently. My form affects my lungs, which renders me unable to breathe, so I use a Ventilator to breathe. I’m also unable to walk and other various things.

Is it true that you lived in a Hospital for 19 years?

BS Answer: No, I just tell that to people to see if they’re paying attention.

Truth: I lived at the Childrens Hospital Of Eastern Ontario from 1975-1994, which is infact, 19 years. When I was born, they only gave me a year to live. I lived in ICU from 1975-1981 and then got transferred to a School Aged Ward with kids who WEREN’T in Comas. I made a shitload of friends, but sadly, many of them died due to various illnesses. When the time came near that I was getting too old to be there, they asked me if I wanted to live in a Group Home or another Hospital. I chose a third option, to live on my own. On March 16th, 1994, I moved into my own Apartment with 24 hour care. At the time, I was the first person on a Ventilator to attempt it. I’m proud to say that I’m still on my own, 15 years later.

Can you speak?

BS Answer: No, I just blink & grunt when someone pisses me off.

Truth: Of course, I can speak. It can sometimes be really hard to understand me. I sound like a cross between Eric Cartman & Darth Vader. I can ONLY speak when it’s giving me a breath and that’s why I pause when I speak. Just be patient with me and don’t worry about asking me to repeat myself. I’d prefer you hear & understand me, instead of being misunderstood.

Can you have sex?

BS Answer: No, disabled people can’t have sex, should never even think about sex, or even date. If they do date, the other person MUST be disabled.

Truth: I can have sex & I abosolutely LOVE sex. The best part is that I don’t have to stop to breathe. For the record, my Wife is able bodied.

Are you married?

BS Answer: No, I sit on a street corner begging to show my penis for $1.

Truth: Yes, technically, I’m married, but not by law. Due to the type of funding that I recieve, I’m unable to marry or live with her.

Do you have any Tattoos or Piercings?

BS Answer: No, I refuse to experess myself. Tattoos are evil and my body is a Temple.

Truth: I have 5 Tattoos. My tattoos are lightning bolt on left bicep, barbwire around left wrist, chain link around my right wrist, pot leaf below left knee shaped like the Canadian Flag, and below it, it says OH CANABIS, and chinese wording which means unique, on my lower right leg. I want to get at least one more one day.

Are you Mentally Challenged?

BS Answer: Yes, I personally think I’m the King of Siam and Birds are out to get me.

Truth: While some people would argue that I am, I’m in fact NOT Mentally Challenged.

Is it true that you did Stand-Up Comedy?

BS Answer: No, I sat outside The Salvation Army for two years yelling at people. It was GOLD, baby!

Truth: Yes, I did Stand-Up Comedy for two years at Yuk Yuk’s and other local venues from 2006-2008.

Why don’t you do it anymore?

BS Answer: Too many people started throwing shit at me and I kept forgetting to wear a Helmet for protection.

Truth: Long story short, there’s no more Wheelchair Accessible Comedy Clubs in Ottawa, including the main one I performed at. Yuk Yuk’s changed locations and it’s no longer Wheelchair Accessible.

Do you miss it?

BS Answer: No, I make others laugh. Mostly old people when I run them over.

Truth: Honestly, I miss certain aspects of it like making people laugh. However, I don’t miss the politics of it or the brown nosing involved. I do plan to return someday/ somehow, but it’ll be done on MY terms. Believe me, the curtain hasn’t closed yet.

What do you do for fun these days?

BS Answer: I sit home all day and think about myself in a different City or Country, while I hold a Gun to my head.

Truth: During the day, I usually take care of business, making phone calls, emailing people, and taking care of my life. In between that, I’m usually on Twitter or Facebook, or just surfing the web. I spend alot of time outdoors in the Summer doing various things. I also enjoy watching TV, listening to music, watching movies. The time that I have left over is usually spent with my Wife.

Aren’t you that guy I see everywhere in Ottawa, such as the Market, downtovn, Sparks Street etc etc.

BS Answer: No, that’s my Twin Brother, Juan.

Truth: Yup, if you’re from Ottawa, and you’re downtown often, you’ve probably seen me, especially in the Summer. So, if you see me around in person, don’t be shy to approach me. I like knowing that you’ve seen me or you read my blog.

Are you a happy person?

BS Answer:
No, I’m a very angry, bitter person, and I hate my life.

Truth: I’m generally a very happy, easy-going, laid back type of person. While it’s no secret that I’ve had my ups & downs in life, the same can be said about pretty much anyone reading this. I have a good life, a great Wife. I also believe that OJ used a knife. How’s that for rhyming skills?

Well, that’s it for now.
If any of you have any questions, please feel free to contact me through here, or by email, or on Facebook or Twitter.

Perhaps I’ll even do another Q & A post in the future.

Thanks for reading.

My Wife & I headed to Lebreton Flats to hear some free Beethoven Music. It felt very strange going to the same place where Bluesfest was held a week earlier. There were people sitting in Lawnchairs that were my Parent’s ages & even the age of my Grandparents, and kids & babies.

I had the thought in my head of showing up there with my KISS makeup and thinking that Bluesfest was still on. I would’ve done it too, but I don’t have a Video Camera. That’s the kinda thing that I NEED to capture and put it on youtube. People’s reactions would’ve been simply priceless I think.

We stayed there for about 45 minutes relaxing & enjoying the music. It was kinda odd for us, especially for me because I’m not exactly a fan of Classical Music. At least it was free & outdoors.

It rained earlier today & will probably rain more later tonight.
That means it’s time for another childhood memory.

Today, I’m gonna talk about the first time that I broke my leg.
Yes, even people who can’t move much, can still be spazzy.

I was eleven or twelve years old at the time and just recently got my first powered wheelchair. I was in a friend’s room in the Hospital. We were talking about a cute girl that was staying there at the time. We had both wanted to see which one of us would have the guts to go talk to her. I said that I’d go first. So, off I went.

I left his room and started driving my chair really fast up & down the hallway outside her room. In my head I’m thinking that this is gonna impress her & she’ll fall for me solely based on my Wheelchair driving skills.

Wrong!

In my moment of glory, I forgot to take my finger off of the button & I drove right into the window ledge beside the main entrance to the ward. The ledge was at the perfect level to hit just below my right knee.

I immediately started crying right before the Nurses ran towards me to help. At this point, I slowly returned to my room in pain. The whole time, the girl was sitting by her door & laughing at me. To make matters worse, nobody believed me when I said that I thought I broke my leg.

Two weeks later, a Nurse noticed while giving me a bath, that my leg was blueish. As far as we knew, it’s bad when a body part goes blue. Later that day, I had my right leg x-rayed and sure enough, it was broken.

I’m still not sure how I lasted two weeks with a broken leg without a cast. Back then, I was swimming three times a week, plus all the lifting from bed/chair/pool/bath tub etc etc. It’s a miracle that I didn’t need Surgery to repair the bones.

However, there’s a happy ending.
The girl remembered me the next time she returned to the Hospital. She apologized for laughing at me & we became really good friends for a little while. As for the other guy, as it turned out, she wasn’t too fond of him. Sadly, she passed away a few years later and he soon followed.

I guess it’s a happy/sad ending.

Thanks for reading.