I’ve previously discussed my condition(s) their names and what about me is physically different but today I wanted to talk a bit more about how much I can see and hear as well as something I haven’t really publicized.

MY EYESIGHT

First, let’s talk about my eye sight (or lack there of). I don’t know the actual visual acuity I have but my next visit to my ophthalmologist I do mean to ask her. Growing up I saw some eye doctors at sick kids but my vision never seemed to be important. One of the known identifiers of one of my conditions is that I do have a dermoid cyst on my right eyeball. Sadly that’s my “good eye” so that kind of sucks. This cyst doesn’t impede my vision but the type of Cyst that it is can have any number of things grow from it. In the last year mine has suddenly decided it wants to grow hair so every month to every 3 months I have to go and get this hair plucked. It’s as painful as you are imagining even after she throws in some freezing drops. It’s better than the painful hair in the eye feeling which is what I have to deal with until I get in to get it plucked. Aside from the cyst I also have Photophobia which essentially (if you didn’t click that link) is my eyes are stupid light sensitive. If I go out when it’s sunny my left eye auto closes and I squint with my right. I have prescription sunglasses which help, they are as dark as they are legally allowed to be. Which isn’t dark enough for me but it does help. In winter I will suffer from snow blindness which makes living in Canada fun! I enjoy dark environments as artificial lights also bother me. I’m lucky at work that my workspace can be in a lowlight area. Even at home I tend to not turn on the bathroom light or any light when I get up early as I can see better in low/no light. Street lights and oncoming car lights when I’m a passenger also really are hard for me to deal with. I also suffer from a condition called Nystagmus this isn’t something that is common with the condition(s) I was born with and I’m unsure how long I’ve had this but I suspect it’s been since I was an infant. Most people with this condition can’t tell that their eyes are moving and for the most part on a day by day basis I can’t either unless I’m actively trying to stare at something than I can feel that my eyes are moving. When I’m exhausted or my eyes are stained sometimes they stop moving at which point I tend not to be able to see anything much at all and it’s time for bed! My eyeballs are also misshapen and the surface of my eyeballs resembles that of a golf ball. I need to put eye drops in frequently as when I blink I don’t lubricate my eyes as well as others. When I was younger I never blinked and actually slept with my eyes open, I’m happy to report this is no longer the case!

With my left eye I don’t see much, when I go for an eye exam I can’t even see that giant “E”it appears as a black blob. If I know you I can generally tell who you are by your overall shape but if I were to meet you for the first time it would take my left eye a while to see you. I can see most big objects, I can see colour and light but mostly everything is horribly out of focus and fuzzy. I’m legally blind in my left eye.

With my right I can see ok, things are in focus when I wear my glasses but I can’t see fine detail and the font size I’m comfortable with is big boarder in on huge. I can’t see street signs unless I’m right on top of them and if it’s sunny out I can miss big things like cars. If I’m with a friend or my sister I tend to have them guide me when out in a parking lot during the day or if we are going over uneven ground as I can’t tell if I. About to step somewhere dangerous. My sister reads all the labels I need to read, and my friends read me the menus at fast food joints because I can’t see them and sometimes even dinner menus. As I get older my vision loss will become a real issue and I will consider getting a guide dog. I wish I had had one the other night walking home from the bus stop a ways from my house because I had the hardest time navigating the sidewalk and ended up taking a cab home the next night.

MY HEARING

I’m deaf in my left ear. I wasn’t always, before I was 16 I had some hearing however after I was home and pretty much recovered from my jaw reconstruction me and my family noticed I wasn’t all that stable on my feet. I was always considered to be clumsy but this was way more than that. The turning point to me that something was wrong was one morning getting up from the dining room. Table after eating cereal I wanted to make a hard right to head to the kitchen which was behind me. I had sat with my back to the kitchen. Instead of right my body kind of went straight and to the left, I fell, broke the bowl and broke an ornamental big ass elephant thing my mom really loved. My mom made an appointment with sick kids where they did a hearing test, at first they thought maybe there was some wax build up. So after having wax vacuumed out of both ears they ran the hearing test a second time. Let’s just say they didn’t like the results the second time around and they decided exploratory surgery was required to find the answers. Not sure how long between the test and the surgery but they did go in and found that the bone graft they had put in months ago had pinched the ear canal shut thus rendering me deaf in the left ear. No hearing aid was going to fix that so I had to cope with that and fall a few more times. To this day I still kind of fall over. I have moderate hearing loss in my right ear but I’m not deaf. As someone who is hearing impaired I don’t do well in crowds or noisy places. If I’m walking with someone I will automatically walk on their left so that I can hold a conversation. In groups I tend to just shut down and not participate because I can’t hear 90% of what’s going on. My sister again is awesome and even though I think she is lying she says she never gets mad if I ask her to repeat herself 6 times (think that’s my record). I will also agree to shit I didn’t actually hear simply because I don’t want to feel like an ass for asking someone to repeat themselves. My sister warns me that one day I will end up agreeing to something I regret, I say probably but I will deal with that. To be honest as long as I can still hear music through my headphones I’m ok with my hearing loss. I don’t honestly know how you all deal with such a noisy world!

Something that I also have to live/deal with is a brain tumour now this sounds scarier that thankfully it is. In 2012 I went to my ENT specialist with some annoying symptoms. He noticed my nystagmus and asked if this was congenial. Not knowing he decided to order a CT scan and an MRI. I went back after CT results and that’s when he told me that there was something to be worried about but that he had made a referral to a neurologist. Nothing like the words “brain tumour”to wake you up. I had gone to that appointment like to all of my appointments by myself. Probably a week or less later I was fighting a nasty cold and I had stayed home from work, I was in bed when my mom comes in my room to tell me there is a phone call from a doctor. I didn’t think much of it but I answered, the lady on the other end said she was calling from the neurologist office and was telling me my appointment to meet the neurologist was the next day. I really got scared, usually if you get an appointment that easily something is horrible wrong even though with other specialists I was also pretty lucky and never had to wait long. So I called my boss to report that I was going to miss a second day of work. I went and he confirmed that I did have a tumour but he didn’t think it was cancerous but that we’d have to wait for the results of the MRI that was scheduled for the week after. After all of that I learned I have a benign Lipoma tumour situated in my corpus callosum. I have regular MRIs and visits with my amazing neurologist. These types of tumours can grow but mine seems to be stable at 3cm x 1cm and it won’t be removed unless it does grow.

Link to my Vlog

My last few posts have been kind of heavy so I thought this week I’d do something lighter, I took on a would you rather challenge. I just opened Google and clicked on the first link which was one from Buzzfeed. I didn’t do all of them as I like to keep my Vlogs in or around 10 minutes so if you enjoyed the first video and are looking for me to do more just let me know. Like and subscribe, share my YouTube channel with all your friends and family. YouTube has said they would like more female creators and I’d like to be one of them, I will coni tue making videos and create discussions. I’m not the most creative YouTuber (not by a long shot) but I will be authentic and I aim to help normalize facial differences in the media.

So let’s get to it!

Question one: would you rather Be forced to wear wet socks for the rest of your life? OR Be allowed to wash your hair only once a year?

Answer: This first one was easy, I’d opt to only wash my hair once a year. Wet socks in the winter up here in Canada would SUCK, also trying to sleep with wet socks doesn’t appeal to me either. At least I could keep my hair short, and find imaginative ways to conceal my hair during the final months leading up to the one year mark.

Question two: would you rather Have a finger as a tongue? OR Have tongues for fingers?

Answer: well this one just plain sucks I hate either option but I think tongues for fingers is what I’d go for. I’d wear gloves or something, I also hope they are not fully functional, by that I mean, I hope they don’t have tastebuds and such.

Question three: would you rather Wear someone else’s dirty underwear? OR Use someone else’s toothbrush?

Answer: I dislike sharing people socks that are clean let alone anything else but underwear is 100% out of the question and thus the toothbrush to me seems less gross. Don’t get me wrong I’d still run that sucker under really hot water for a good long time before using it but at least after that it wouldn’t feel used, not like underwear would…ewww!

Question four: would you rather shit bricks? OR pPuke slugs?

Answer: since I can count on one hand the number of times I’ve puked in my life I’d go with that. I poop just about every day so the ides of having to pass a brick daily or multiple times a day isn’t remotely ok with me.

Question five: would you rather pee yourself in public once a week? OR Shit yourself in private daily?

Answer: I went back and forth on this one. There is no clear favourite here. The once a week appealed to me since it’s not daily but the being in public is really what threw me off. So pooping in private it is, just hope it would be at home where I could hop in the shower, kind of what I’d like to do after even thinking of this one.

Question six: would you rather always tell the truth? OR Always lie?

Answer: unlike the last one this one was easy, tell the truth. Although I like to think I’m a good liar I would opt to tell the truth since for the most part the truth is always the best thing.

Question seven: would you rather never have internet access again! OR Never be able to take an airplane anywhere again?

Answer: another easy one here, not ever taking a plane again wouldn’t be the worst. I don’t travel anywhere now so I’m not really giving up on anything. If I lost internet I’d lose my connection to all of you, that would make me sad.

Question eight: would you rather have your body found in a pile of sex toys? OR Have everyone you know see your browser history?

Answer: well I don’t search for anything crazy so have at it everyone! Although I’d kind of like to see the news headline on the first option there… hmmmm…. lol

Question nine: would you rather be the real-life version of “American Horror Story” ? OR Be the real-life version of “The Walking Dead”?

Answer: well if you know me at all it shouldn’t be a surprise as to which one I’m going to choose here…. Kind of already living the first one so figure might as well rock it and keep going! Zombies are overrated anyways.

Question ten: would you rather only be able to whisper everything? OR Only be able to shout everything?

Answer: shouting would be tiring for all involved so I’d opt to whisper. At least those I know are already used to asking me to repeat myself.

Question ten: would you rather run your tongue down a New York City sidewalk? OR Press your tongue into a stranger’s nostril?

Answer: I can’t physically stick out my tongue far enough for the second one so you’d think I’d choose that one, but nope, I’m not up for being in someone’s personal space. I’d just find the least dirty part of the sidewalk and have at it.

Question eleven: would you rather find true love? OR Win the lottery?

Answer: I’ve been alone this long and although it’d be sweet to have my one true love, right this second I’d choose to win the lottery. I have a basement that I need to completely gut, fix, than re-do, roof, driveway and fence I need to replace, and honestly I’d love to go on a trip somewhere warm. Call me jaded but love can’t help me take care of my house and this my family.

Question twelve: would you rather fight off a dog-sized cockroach? OR A horse-sized rat?

Answer: I’m going for the horse-sized rat cause cockroaches are just nasty.

Question thirteen: would you rather immerse yourself in a bathtub of spiders? OR A bathtub of tobacco spit?

Answer: well truth be told, neither….like ever… yuck. However since I had to choose one it’s be the spit followed by a very long shower. Spiders don’t scare me however a tub full of them just crawling on me… yeah no thanks.

Question fourteen: would you rather receive a lifetime supply of meals from your favourite restaurant? OR Receive a lifetime of free gasoline?

Answer: again another super easy one. I can’t drive so free food for the rest of my life? Yes please!

And last one

Question fifteen: would you rather Have a photographic memory? OR Be able to totally forget anything you want?

Answer: although forgetting some stuff would be cool I think those memories also make me who I’ve become and so far there has been nothing in my life I’d really want to forget. Well I think my brain took care of most of that on its own, it’s scary the amount of my childhood I simply don’t recall. So having a photographic memory would most likely come in handy.

So those were my choices, what would you have picked? Again feel free to share and let me know what you’d like to see more of.

Link to my Vlog

Link to Buzzfeed Article:

Over the last 2 months 3 of my favourite shows have used a sad cliche/trope and I want to share my feelings, share where my heads at. This isn’t the first post on this blog where I’ve talked about this issue and by the looks of it, it won’t be the last.

The issue? The cliche/trope I’m talking about is the use of a facial difference to signify to an audience that a particular character is evil, or “the bad guy”. In the last two months alone there have been not one, not two, but three instances of my favourite shows using this as catalyst to tell their stories. These are shows where I’m a fan, where I’ve watched every episode, where I’m invested in both the characters and the stories. But watching these episodes left me angry, sad, and confused.

I’ve been told that I should just suck it up, that I shouldn’t take it personally, I need to get over it. I would love to, nothing would make me happier than to just watch my favourite movies and shows and just get lost in story. I’m writing this because I’m trying to help kids who have and will be born like me. Kids who will already face a life time of struggles I know all too well. I want kids with facial differences to be able to turn on the tv, open a magazine, and watch a movie, and see themselves. I have ZERO clue what’s that’s like. For 99% of you who read this you will not get what I’m talking about because all that is portrayed are versions of yourself. Are all minorities positively represented as much as they should? Of course not, society needs to do a lot better for a lot of people. There are so many injustices I wish I could fix, but this one that I’m talking about today is personal. I’m not going to “get over it” and I assure you this is t simply “butt hurt” it’s an actual problem of systemic, institutionalized discrimination and I’m tired of it. As a society we’ve determined that blackface is wrong, that white washing is wrong, yet somehow I’m just supposed to accept that using prosthetics to mark up an actors face so that they can appear to be “ugly” thus evil is not a slight against me. That is ok that the only time there is a facial difference on screen it’s a big red arrow showing that this character that they see is absolutely the bad guy, not a hero, not someone to invest your time in, not someone that should be loved, just a throw away character, someone for the hero’s to kill.

I get that most of you who read this don’t have a facial difference and some of you won’t be able to wrap your brain around the message I’m trying to convey. Honestly if that’s the case please tell me what part of my discussion is unclear? Tell me please, without using the justification “it’s just a story” or “it’s just made up” how wrong I am.

Earlier I mentioned three shows in the last two months that have made me cry, make me think there is zero hope for the future regarding this concern.

November 8th, 2017 I was catching up on an episode of Hawaii Five-0, it was their Halloween episode and they made up a character, a girl who’s backstory states had been kidnaped, brutally beaten and held captive only to be tied to a tree where her half her face was pretty much eaten off by some wild animal. The writers than saw fit to use this as the reason why she turned into this evil monster hell bent on killing people. Here is my Twitter rant I went on that night so you can get a a sense as to where my head was at when watching it. Hawaii Five-0

November 11th, 2017 I was catching up on an episode of Blindspot and the bad guy had a giant scar down his face.

Last night I was catching up on an episode of Frankie Drake Mysteries, you’d be forgiven if you’ve never heard or seen the show. It airs here in Canada on CBC (and I think a few other countries not sure where or what networks). It’s a great show set in Toronto in the 1920’s and follows a forward thinking group of amazingly badass women solving what cases land on their door step. The episode titled Ghosts sees a few guys murdered and off they go to gather clues. As soon as I seen the main character pick up a “mask” that had a partial face drawn on it, I knew. I hoped I’d be proven oh so wrong, but I knew I wouldn’t be. The “bad guy”was killing those responsible for his facial difference.

In each of these three instances (there are more) I’ve tired to use social media to engage the writers, show runners etc. In each case there has been crickets in return. It’s frustrating because no one responsible is willing to engage. I’m not unreasonable I want the opportunity to have that conversation to see what their thought process was.

As exhausted, angry, and sad I am, despite the fact that some days I want to give up on this whole advocacy thing, I can’t. Even if it’s me against the world I will continue to call this BS out every time I see it. I’m not the villain, and I refuse to accept that this the only way I “see”myself in media.

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