Reminder

Hi guys,
Just a reminder that our Leo Glavine Royal Flush is tomorrow from 9am-5pm. Details are on the events page.

Upcoming events

Hi everybody,
Just a quick note to let you know I updated the events page. Go check it out!

Meeting November 11.

Hi guys,

Just wanted to let you know that our next meeting will be November 11 at at 2615 Northwood terrace starting at 7:30 until 9:30. Hope to see you there!

Look At All My Friends!… Nobody Likes Me!

I wish I could change. I’m not talking about being thinner or taller or even being able bodied, although I sometimes want those things too. I’m talking about my mind; I can’t seem to live in the present. Let me explain.
School kind of sucked for me on a social level; with the exception of a year and a half I only had one really good friend through jr.high and high school. Do I think that was a side effect of being in a chair? I use to and I’m sure it dropped my coolness meter a few points but if I’m being honest, I was kind of odd. I saw things in black and white; this made me super judgemental and kind of sexist on occasion. That being said, all kids say dumb stuff sometimes so I’m not quite sure why I was cast as an outsider. Anyway, fast forward five years and I have a good number of friends who like me in spite of my quirky bluntness or in some cases because of it. And they see the chair as a part of me rather than me as part of the chair. Despite this, I find myself feeling as if I could lose them at any minute. For some reason that insecure 15 year old I was refuses to fade completely into history. These insecurities seem to be strongest when my disability prevents me from doing things without help.
The most recent example of this happened yesterday. Aand I went to this concert. It was an outdoor concert so I went 3 hours early to make sure I got a spot I could see from, sitting down at a standing room concert sucks if you aren’t in front. Anyway, at one point my friend decided he wanted to go around the corner to grab a coffee. When I said that that I might have a hard time navigating through the now considerable crowd he said I could wait back in our spot, which I knew I should have. That’s right; I knew the easier choice and ignored it. Why would I do something a teen would do? The same reason a teen would, a desire to be “normal”. After all, regular girls walk through crowds to go get coffee with their friends. Besides, what if I missed something cool?!
My main fear is that they will realise that I’m a lot of work because I need help with almost everything and it will be too much and they’ll leave. Sometimes I even worry that they’re just friends with me because I’m the girl in the chair with depression. That’s horrible I know! They have never given me cause to think this and if after they read this they get so offended they don’t speak to me for a week I wouldn’t blame them. After all, trust is the main backbone of any relationship and I don’t always have that. Not to mention that having to reassure somebody of something so obvious might get super annoying.
I realise all these problems are caused by a self-esteem that currently resides in a toilet, the question now is how to make sure my self-esteem moves up to the penthouse? I’ve tried affirmations and the power of positive thinking but those just make me feel like I’m lying to make myself feel better. I’m kind of at a loss at what to try next.
What about you guys? Do you feel your disability affects friendships? Or if you’re the parent of someone with a disability, are you worried your child will suffer socially because of it?
Until next time cheers,
Victoria

Today I Feel “Disabled”

Today I feel disabled, I feel physically challenged. That is probably the best way to describe things. I’m on antibiotics and they are giving me tremors that are bigger, stronger than usual. I’m holding the arm of my evil side as if it is limp. I’m biting the inside of my cheeks. My eyes are so bouncy I can’t read anything, no matter how big or small.

Normally I go about my business, zipping around in my wheelchair, bumping into walls as I program my iPod. But these pills just make me want to sleep. Even when I’m sitting still I can feel my insides still shaking. I’m sure there are lots of people for who that is their daily life and I have such strong compassion for you! How? How do you do it?

I know I’m disabled, handicapped, physically challenged, whatever; I especially know it when I go out into ‘the real world’. I feel not just physically challenged by gravel, sand, or the buzz of lots of people, all in a rush, all moving fast on the sidewalk, or in the mall at the food court. By the end I also feel mentally drained. I’m an emotional wreck who bursts into tears at anything, everything.

I like living in my little bubble that is the nursing home where I live. I like the fact that it’s easily accessible to (almost) everything. I like the fact that there are other residents ‘like me’. I don’t feel so physically or mentally challenged when I feel that I know the challenges, the people in my ‘community; others around me who may also be challenged in some way. But this past week, these pills, the tremors and shaking are draining me emotionally. I find myself getting frustrated easily. I’m snapping at people when normally I wouldn’t.

I want to cry, just to sit down and have a good cry. I want to rid my body of these toxins. I need to. I’ll probably have to do another round of antibiotics (thanks, Superbug) and I’m hoping there will be enough of a time lapse that my body will settle down.

Then I will start round two of the pills and again I will feel physically challenged again. I will shake my way through the week!I will feel emotionally and mentally drained. Again I will try to concentrate on making my body do what I want. But it won’t. I know that. I am going to get worse before I get better.

This all sounds so ‘woe-is-me’ and I suppose it is, in a way. I guess I am mourning my independence, I’m mourning my feeling of independence, my ability to do certain things that I can’t now, ‘my previous life’. But enough of that. That isn’t who I am. That is not how I want to live my life.

Tomorrow I will feel disabled. And the day after that. And maybe the day after that, too. Then I will begin to feel like myself, I hope. No, I will. I must.

Dear Fears 1: You Always Hurt The Ones You Love

My Folks

They say a parent’s work is never done. Although this is true in an emotional sense for all parents, this encompasses everything when the child in question has a disability. I feel my challenges have had quite an impact on my folks lives and our relationship. Also, living in a nursing home has made the fact that my parents are getting older very real to me. So I have decided to write down my thoughts and fears in a series I call “Dear Fears” in an effort to organize and face them. Besides this I have two side goals for the series:
1. It’s been said that I’m not a very self-reflective person; This is very true. I’ve tried writing a diary but without some sort of reason to keep going I just stop. With this kind of format, not only do I have a deadline (every 2 weeks) but there will be people who’ll be expecting to read it. They may be confused if it’s not there.
2. I know I can’t be the only person with these fears. Hopefully if I write these down I can help someone else and get a discussion going.
I guess that explains everything. Here goes nothing…

Family vacation?
My parents have done a great job making me feel the least disabled possible. Most of the time this is to my benefit. I don’t use my disability as an excuse not to do things. Well most of time. Nobody’s perfect right? Occasionally, however, this can make me feel incredibly naive.
Let me give you the latest instance in which this became painfully clear. When I was first told we were going to London I knew we were going there because of my fascination with British history, culture and people with their super-sexy accents! I knew that for the most part I could make a suggestion about what to do and they’d take me even if they’d rather stick needles in their eyes. They are the best parents ever. (They did that too: M&M’s World.) But I thought they would at least get a little bit of a vacation too. I seem to have forgotten that taking care of a person with severe spastic quadruple palsy is quite labor intensive. Of course they couldn’t relax they were once again, however briefly, on round-the-clock caregiver duty. Hell, with all the extra mishaps, and my inability to drive when my brain gets over stimulated, I was even more work than normal. Fabulous.
It’s been a while since I felt that angry about my disabilities. On our first night there my catheter leaked, causing this 23-year-old advocate and published author to wet the bed. I was furious. Not at anything that had just occurred, Not even about peeing the bed. Catheters sometimes have trouble draining and it has to go somewhere. I was mad that it had happened at a time when the clean up would fall to my parents. No one wants to start their day like that but at least if it happens in my care home people get paid to do it. I’m not a religious person in the slightest but in that moment I closed my eyes and asked the universe for my body to work for 20 minutes. That way I could clean myself up instead of them having to do it. It was pointless, I knew that, but I felt the need to ask anyway.

Super Daddy
I swear there’s a point to my little sob story. My parents were fantastic. They never once complained about my constant need for care or the toll it took on them. I could tell it was harder for them then it had been even two years ago. I mean this makes perfect sense. I’m finally a healthy weight after a 4-year battle with my own mind. My Dad is 51 years old, which is not that old in the grand scheme of things. however my care requires a lot of turning, lifting, etc.. I call it man handling and I could tell it was harder than it once was.
Right now he is still able to do everything. My concern is that when he can no longer able he won’t tell anyone and I’ll end up hurting him. You see my dad’s a doer; He sees something that needs to be done and just does it, quite often refusing help. As much as I admire this about him and try to practice it in my own life, when it comes to my care this scares me. Not because I might get hurt, he would never let that happen but I do believe it will take an injury for him to admit he can’t do it by himself. After all, what father would want to admit he needs help caring for his daughter? I’m not as concerned about this when it comes to my mother because she has accepted it’s ok to ask for help.
I hope this series of inner ramblings helps you as much it’s going to help me. Cheers,
Victoria

Well, That Was Jolly Good! For The Most Part…

 

 

‘Ello Folks,
Victoria here, I come baring stories from my epic journey across the chilly Atlantic. There’s a little bit of everything: humour, history, suspense, daring rescues, and brushes with fame… even tiaras! Awesome, right? So for the next two weeks I will be regaling you with tales of me vacation, focusing mostly on how my disability impacted my experience.

 

Vacation Curse

I’m not a superstitious person but I’m starting to believe I’m under some sort of vacation curse. Every time my parents’ and I plan to go anywhere something seems to go wrong. Hear me out: at 21 my father took me to Broadway and although it was fabulous we had to walk to the hotel from the theatre the first night because wheelchair accessible cabs were not as common as we thought and we ended up getting lost. When my folks took me to Montreal Comic Con with one of my best friends (which was magical) my catheter decided to fall out of my body. Fun, right?
I’m afraid this vacation did not escape this fate, but as you’ll see almost every bad event turned into something cool.

Accessible?
I know it is impossible to put an exact definition of what accessible actually means. True, there is an actual legal definition but when you actually think about it what is accessible for one person may not work for someone else. That being said, getting in the door without having to have your 51 year-old father shove your 250 pound chair while your mom floors it would be nice.
My parents spent a lot of time asking all the right questions and making sure that they had all our bases covered. Unfortunately, sometimes people provide faulty information in their quest for the all mighty dollar.
Oh and the elevator had a lot in common with the following image.

I’ve never been so thankful for the cushy oversized boots my sister bought me a few years back. I’m pretty sure they saved me from a twisted ankle.
Oh and the service was less then ideal. So don’t use Find A Flat if you can help it.

Not Bad for an Old Gal
I don’t know if you guys know this but London, it’s super old! I read an ad on the subway/underground that said London is over 900 years old. Granted, that’s not the age of the city proper (no one knows that, but you get the point).
Despite its age the city has done a tremendous job making itself wheelchair friendly.
The transportation system is the greatest I’ve ever seen. Here in Halifax I have to book an access-a-bus a week in advance if I want to go out. If I lived in London I could just hop on the subway, provided I remember which of the stations are wheelchair accessible.

Progress is slow, but it happens.

Or I could just hail a cab. Seriously, there’s a law in Europe that says every cab has to be able to accommodate a wheelchair. BEST LAW EVER! If we had that here I know my life would open up so much. What are you waiting for Canada?!

FREEDOM!

I also saw an ad for a Shakespeare play told in sign language and our tour of Westminster Abbey came with an audio guide. Cool eh?

 
We had a pretty hard time finding restaurants that I could get my chair in but again when you consider how old the buildings are that kind of makes sense. One thing we’re going to do before we travel again is invest in a manual chair. If I could give one piece of advice to a person with a severe physical disability like myself it would be to travel with a manual chair. Not only will it be easier to get in and out of building’s that have a step or two. If you get easily overwhelmed by crowds or lost and need someone else to steer you like I do it’ll be easier for someone to navigate. Plus chargers can be a pain. Speaking of which…

“Thank You Carlos.”
While we were touring the grounds outside Buckingham Palace my wheelchair battery decided it had had enough of the whole being charged thing. It ran on its last few chugs up a massive hill thanks to some major help from my dad’s brute force. The closest place we found that looked like we could charge my chair? The freaking Ritz Hotel; Yes, that Ritz. Holy crap guys, if you’re going to get stranded somewhere go here! I thought we’d get turned away. After all, we weren’t staying there and we weren’t exactly dressed for somewhere swanky.

Klassy

They were very helpful . The door guy got a pageboy to escort us to a table in the bar next to a plug and a waiter in a fancy suit named Carlos. He brought me and my mother fancy drinks while Dad went back to get the charger. (Don’t worry; He had some much deserved beers when he got back).

 

Unfortunately dad picked up the wrong sized converter so I couldn’t charge the chair, but we got it all figured out and had drinks at The Ritz. I fail to see a down side.

Proud and Patriotic
Remember when I said every bad thing that happened was met with something cool? This is probably the best example of that:
We missed the changing of the guard because we got to Buckingham Palace later then we wanted to. I think the universe must have intervened or something because we got there just in time to watch a special ceremony honouring Canadians who served in Afghanistan. This meant a great deal to us. My father worked for a military contractor for 5 years managing the drone plane project there. He was also in the Air Force for 27 years before he took that job. So in a way, it was like they were honouring him. In any case, it made me proud to be a Canadian and proud to be my father’s daughter.

Dad and I with Brigadier General Overton

 

Princess Victoria
I’ll admit it, most of the time being disabled sucks. You can’t always go where you want, ignorant people say or do dumb things. Sometimes it gets too hard to deal with all the medical crap. Every once in a blue moon, however, being disabled has its perks.
Hear me out?! I’m a giant theater nerd so while we were on vacation my folks took me to two shows in the West End. The first one was The Book of Moron at The Prince of Whales

the theater

Theater. Not only was the show one of- if not the best musical I’ve ever seen live but on top of that we had an usher assigned to us. That’s right, for that night we had people, well a person! I felt like an heiress or something, it was awesome! His job was to make sure we got where we needed to go without having to fight throngs of people.
That’s not the best part though! That was when my mother mentioned how I’d freak if I got to meet the cast and he made it happen! The following picture was taken after I found out it was going to happen:

 

They were really nice people too.

EEEEEEEEEEEEEK!

Best vacay EVER1

                         Photo ops

I also met some of the actors when we went to Phantom of the Opera , also super nice.

 

No biggie, just hangin out with famous people…

Nicest guy in London

Do you honestly think I’d get that opportunity if I wasn’t in a chair? I sure don’t.

That’s it for this week. Next week I gush about my awesome parents and get stuck on a plane for 45 minutes.
I shall leave you with a picture of me with a transformer, because it’s awesome.
Cheers,
Victoria

Cause and Effect

My neighbour died three days ago. We’ve lived in rooms next to each other for two and a half years. We had our own little wing, just her and I. It was the most bittersweet of deaths I’ve experienced. Although I was so happy for her I was so sad for me.

Why? Nellie had rheumatoid arthritis and was in a lot of pain. She had been praying every day for the last two years to go. It was a true sin to see her being alive when she didn’t want to be. I can honestly say I was glad for her when it finally happened.

But that only comforts me a little when I allow myself to be sad. I know the sadness is shared by myself and everyone else who loved her but we ultimately should be happy. She isn’t in pain anymore or oh so unhappy. We all knew it was what she wanted.

Nellie isn’t the first person I’ve cared about, loved, here who has died. She isn’t the first person whose death has affected me physically, where my MS has gotten worse because I cared. Every time someone dies not only do I have to deal with any emotional fallout I may have personally but then I get physical ramifications from it. My family here is palliative, in the final phase of life and yet it is only worsening my disease.

MS is by far not the only disorder that reacts negatively to stress. We shouldn’t have to deal with such a high percentage of end of life issues, such as watching a friend or loved one ‘in the final stages of life’. We are trying to deal with our own quality of life issues that require our full attention. Attention that should not have to be shared with constant goodbyes.

I’m not really sure if I am writing my own goodbye to Nellie, honouring my dear friend, or if I’m reaffirming the need for specialized housing, or both.
Probably both. Either way, there is love or passion; there is always love for our housemates. Do not forget, however, that having to experience the end of a life gives me the passion to advocate for housing for young adults with physical needs and/or disabilities.

Goodbye, Sweet Nellie. I am glad your prayers were finally answered. Literally.

I have MS

I have Multiple Sclerosis. I was diagnosed in 2002, the week of my birthday. Happy birthday to me! People always ask me what was my first sign; it was Bell’s Palsy. How did I know something was wrong? I couldn’t tweeze my eyebrow!

The entire right side of my face drooped and was paralized. My smile was crooked. I knew something was wrong. After many tests, including a spinal tap (ow) my now familiar neurologist put it down on paper: Melanie Gaunt has Multiple Sclerosis.

I have to say that when I call it MS, I’m okay with it, but if myself or someone else calls it Multiple Sclerosis I get scared. Things seem much more serious, my illness seems much more ominous. I tend to realize the gravity of my situation much more.

My MS friends, for the most part, have progressed more than me, which scares the shit out of me. I don’t want to lose my independence. I’ve realized over the years of life with MS that I have to fight the MS oh so hard and sometimes it wins. Use it or lose it, right?

I’m not saying I don’t have bad days that frustrate me to the point of tears. I do. I’m not saying I’m better than my MS friends. I’m not. But I’m saying that today I can and do fight my MS. Tomorrow? We’ll see.

Some people ask me how I feel about my MS. Well, I have blue eyes, straight hair and MS. I recently realized that in some bittersweet way, I love my MS. It’s like family: I don’t have to like it but I love it nonetheless.

My MS is part of me and it has allowed me to make incredible friendships that I wouldn’t -couldn’t- give up for anything. Sick or not. That is true today as it will be tomorrow.

We Can End This!

I’d like to take this opportunity to talk about a condition that doesn’t get the attention it deserves, Tiny Tim Syndrome:

What is Tiny Tim Syndrome?

TTS is a serious condition that causes able bodied individuals to view those with disabilities with pity or as perfect angels. These thoughts are harmless when kept to oneself. Unfortunately, people with this condition feel it appropriate to voice this delusion aloud. It can cause anger and annoyance in those around them to rise.

It also has the unfortunate side effect of making you look dumb.

Some of the other symptoms include:

Head patting 

Talking in the high pitched voice one uses with a toddler. 

Acting shocked when people with disabilities act their age or are skilled in some way. 

And possibly the most shocking…

becoming dumbfounded when those with disabilities express interest in romance or sex.

Fortunately, there is a cure but we can’t administer it without your help.

Next time you see a TTS sufferer, sit them down and administer a large dose of education. Be gentle.

Just remember, as Mary Poppins once said “A spoonful of sugar helps the medicine go down.”

Together we can end this unfortunate condition before it becomes an epidemic.

For more information follow and share this blog.

Thank you for joining the fight.

Victoria

Question: What are some of the TTS symptoms you’ve noticed?