Posts Tagged ‘living on my own’

On Tuesday, I headed over by the casino to meet one of the organizers of the casino sound & light festival to discuss improving wheelchair accessibility.

The ride there was interesting.

The para transpo driver had no idea where I was going, and it had been two years since I had been there. For some odd reason, he kept asking me for directions on how to get there.
There’s a few reasons why that’s a horrible idea.

1. I don’t drive.
2. I assume most disabled People don’t go to home renovation stores often, so I had no idea where to turn off, or what streets to take. (I was going to Reno Depot, which is the french version of Home Depot.)
3. My direction skills are HORRIBLE. I’m not kidding either. I once got lost when I came out another Door of my wife’s workplace.

After about 45 minutes of trying to read french road signs, and asking 3 random car drivers on the road, we discovered that we were in the opposite end of Gatineau. I somehow still managed to make the Meeting semi on time.

Our meeting went well. I was given a very thoroughed tour of the site. As it turned out, the main reason, I had so much trouble 2 years ago is because my wife and I had general admission tickets instead of reserved seating. If you buy tickets for the reserved seating section, you can sit on a platform, which is directly in front of the fireworks.

The view there was absolutely beautiful, and it seems like it’d be incredible at night.
One of my beefs is that I’d have to pay extra for my attendant, which is extremely stupid, plus expensive. So, I will be writing a letter to the festival president to see if they’ll drop that policy.

When I was a kid, a roommate (at the hospital) went on TV to discuss how unfair it was that we had to pay for our personal care attendants if we wanted to see a movie. It turned out that our complaining made life easier for us, and other severely disabled people.

After that, it was up to the theatres on whether or not to let them in for free. Nowadays, for the past few Years, we’ve been issued an “Access 2 Entertainment” card. Whenever I go see a movie or a special event (like wrestling) at the movie theatre, I show them the card, and just pay for myself. The next step is trying to convince concert/sports venues to do the same. I’ve been discussing it with different places for many years now, and it’s a never ending battle.

Speaking of movies, on Tuesday night, I checked out The Other Guys, starring Mark Wahlberg & Will Ferrell.

For those who don’t know, Mark & Will work for the Police Force, but not as Cops.
Will’s an Accountant, and Mark was relieved of his cop job after shooting Derek Jeter.
The two of them team up to try to solve a crime in the hopes that they can earn a cop job.

This movie pokes fun of other cop movies, especially buddy cops movies.
The duo of Will Ferrell and Mark Wahlberg came off very well, and extremely funny, and it also helped that Eve Mendes was in it too. She played Will’s wife, and Mark’s absolutely stunned that she’s married to Will.

To me, Will Ferrell is a hot/cold type of actor.
On the hot side, he’s been in such great movies as, A Night At The Roxbury, Old School, Anchorman, Elf, Talladega Nights, Step Brothers, and Blades Of Glory.
On the cold side, he’s been in movies like Bewitched, Semi Pro, Stranger Than Fiction, and Land Of The Lost.

To me, The Other Guys, is one of his better movies.

As far as the rating, well, I give it a solid joysticks up. I highly recommend it, especially if you’re a Will Ferrell fan.

The rest of my week was spent trying to fix the weekend schedule for my attendants. For the longest time, I’d be without anyone for 32 hours, which is very bad considering I require 24/7 care.
Luckily, I managed to convince people to work, including a brand new attendant, and 2 that no longer work here regularly.
All that matters is that everything worked out, and I’m proud of myself.

As for my weekend plans, Saturday’s gonna be a busy day.
My sister and nephew are in town.

Saturday morning will be spent with my family visiting my Grandmother. My Grandma will be having major surgery next Wednesday, so we’re all gonna visit her at the nursing home.

After that, my sister and I will be heading to a Tattoo Shop to get tattoos. My wife’s coming too, but not getting one done. I hope to shoot some video footage of me getting my tattoo done.

After that, we’re all heading to East Side Mario’s for a family dinner. It’s very rare that we’re all able to be together, so this will be a special occasion, and I’m really looking forward to it.

As for Sunday, I’ll probably sleep and relax after a long day.

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.

Nah, not really…

So my Wife’s Niece left just after 7 last night with her Grandpa.
My Wife’s place suddenly felt quiet for awhile. We hung out for awhile without the TV on even, which was nice.

We came back to my place and emailed some pictures to her Relatives, and then she left.

As for myself, I twittered chatted with some people, which was fun.
Most of the people on my Twitter list are complete strangers. Either, we met through a certain topic and they like what I said or through something called Follow Friday. Basically, you whore yourself on Fridays to get more followers.

My Wife tends to get suspicious with me talking to Strangers online. She doesn’t think that I’m gonna cheat or anything. She’s just worried that I’ll share too much personal information and someone will use it against me or something like that.

While that’s a legitimate concern, I’m pretty careful when it comes to posting pictures online. I only put personal pictures on Facebook, where I know everyone personally in some way.

I mainly use Twitter to (corrupt) meet new people and show them that I’m just a regular guy who happens to be Physically Disabled.
That’s also the main reason why I blog.

Update on the Montreal Trip:
As alot of you know, my trip to Montreal today was cancelled due to a Staff shortage of my Personal Care Attendants. I’m happy to report my Wife managed to exchange the Tickets for next Sunday instead. Keep your fingers crossed for us cause it’s been a rough year for both of us, so we deserve this.

It’ll also be our Third Anniversary of our Engagement. As most of you know, we can’t get married or live together. If we did, I’d lose my funding.
Wednesday is the actual day of the Anniversary. I’ll share the story of how I proposed on Wednesday.

My Wife and I are going to a Movie soon.
We’re gonna see The Time Traveler’s Wife.
I’ll be back tomorrow with a review.

Thanks for reading.

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.

I haven’t felt like posting for the past few days because I’m tired of talking about my health issues. I’m happy to report though that I’m off the needle though and today was my last day for my Antibiotics. So, that means that as of now, I have only one drug to deal with. It happens to be the Rat Poison Pills, which taste really really bad.

Last night, my Wife & I were finally gonna have a night out and go see The Wrestler.Just before we left, I started having Stomach issues. Once they subsided, we rented WALL-E, which I recommend you check out if you haven’t already.

By now, you’re probably wondering why is this a historic day for me.

On March 16th, 1994, I left the Childrens Hospital Of Eastern Ontario after living there for 19 years. The main reason that I stayed there for so long is because there wasn’t anywhere else to put me.

My years included 6 years in ICU, followed by 9 years on a ward full of school aged kids, followed by 2 years on a ward full of babies and other kids that needed long term care. From there, they sent me back with the school aged kids.

My “happiest* time was being with the school aged kids. I was able to make TONS of friends. We got to hang out, play video games, or we’d just talk and I’d try to cheer them up during their stay. Whenever there was a new kid or family, I’d usually show them around the ward and answer any questions they had. The downside was that ALOT of my friends passed away due to various diseases & illnesses.

When I was about 14, I got asked if I wanted to live in a Group Home or in a Long Term Care Hospital. My response was that I wanted to live in my own place. At the time, a person requiring 24/7 care wanting to live on their own was simply unheard of, at least here in Canada.

My Mom & I quickly started a letter writing campaign to see if it was at all possible. We hit many roadblocks as expected, but in the end, we prevailed.

On March 16th, 1994, I woke up for the last time at CHEO. The Hospital threw me a big party, the Nurses & other Staff came to say goodbye,  and the Media was out in full force. I was the first guy in Canada to attempt this.

It definitely hasn’t been easy, but it still feels amazing.

Just 4 years ago, they tried to kick me out of my home, simply because it was too expensive to keep me here. This time around, my Wife & I successfully won that arguement and I’m still here.

15 years later

My goal is to surpass 19 years and at least be able to say that I survived longer on my own than I did in the Hospital.

As the song goes, “Nothing is better than freedom”.

Thanks for reading.