Let’s Talk

On January 31st Canadians will come together to share their battles with mental health issues or to show their support for others. In today’s post I wanted to open up more about my own struggles. Bare with me as this isn’t easy and I’m trying to convince myself not to just highlight this whole thing and hit delete.

I’ve always thrown my support to others. I’m the one (and proudly so) that people come to when they need to talk, vent, laugh. However as I’ve been the support it’s not always easy to be the one to ask for help. I’ve tried counseling a few times but it was never the right fit. The last time I went the person said “well you seem really well adjusted” I didn’t disagree but that made me feel so much worse. I’m good at faking it until I make it, clearly so well that I fooled a professional. After that session I didn’t go back figured like everything else in my life I’d have to just suck it up and deal. And that’s what I’ve been doing. A few close friends I’ve confided in know some of the struggle I go through but like most people they got their own shit to deal with so I tend not to want to bother anyone.

I’m stubborn and most people who are close to me know I rarely will ask for help, I just figure out how to do something on my own or I just don’t do it and I’m always ok with that. For anything dealing with me I tend just not to care. For example, right now my hair could use a cut but going to hair dressers gives me anxiety so I don’t go. Friends have suggested people who would be awesome but I hate calling places and talking on the phone so I just don’t do it. I think I get this attitude from my mom who despite what people said about her was not that strong of a person as they thought. As soon as she could she gave up that control said “fuck it”and I was left to be the adult. This was many years before her stroke which again really enforced the role reversal.

The idea of mental health and well being is something I strive to understand. Is it a Nature vs. Nurture thing? Is it really all about brain chemistry or is it about genetics? I imagine it’s a combination of all of those things. How can I who has seen some shit, been constantly made to feel inferior by society able to continue putting one foot in front of the other yet someone who is loved by all has had no traumatic events suddenly not able to get of bed?

We all tend to handle stress differently. The fact that I have people depending on me is a huge motivator, it gets me out of the house and on to the dreaded city bus. Helping others is oddly satisfying, I’ve been volunteering for the past 15 years as it gives me a sense of purpose. Although I don’t have an actual service dog (yet) I can say that the three crazy pups I share my life with also help. Something I’ve been doing since childhood that unconsciously I think may help may also be something akin to self harm. Before I continue I’ve never ever before mentioned this to anyone. My sister knows because she lives with me and I know she wishes I would stop but I’m not sure how. Also before I continue it’s not as bad as you are imagining I don’t cut myself. What I have done and still do is pick, I pick at scabs, I pick at cuts, when those don’t exist I pick my nails, or the skin around my finger nails or mostly my toe nails cause it’s easier to hide. I tend to go until they bleed, my sister would ask if it hurts and oddly it’s a different kind of pain. I can’t really describe it, it does hurt but it’s not painful. Am I embarrassed that I just admitted this? Yep, but I’m keeping this in here because I believe I might be able to help someone else, someone else who may have found a creative self harm method that they feel ashamed of or that makes them feel less of a human being.

Below are two pictures which show an example of what I do. They aren’t really gross but viewer discretion is advised.

How do you manage your stress, how do you deal with the crazy, can’t ever unsee things you’ve been thrown? I’m really a “fake it until I make it” when it comes to those I care about I will give more than I have, but when it comes to myself I could care less.

As we look ahead to January 31st remember to be the shoulder someone’s needs or to reach out if you need help. January 31st I will be tweeting up a storm on Twitter so please follow me @PLoker or just say hi to someone, smile, do a random act of kindness.

There is so much darkness in the world be the light someone needs.

Tokyo Treats a taste test blog

I’ve been excited to do this weeks blog because I love trying new and amazing things from all over the world. Today I’m trying items from the Tokyo Treat box. It’s filled with things I’ve never before seen. Here in Waterloo we have access to some great Asian supermarkets but even there I haven’t seen these items.

The box is a vibrant orange with cute little drawings and writing. Typically with these types of subscriptions a little booklet is included which tells you exactly what you are eating; this one not so much. Had to visit their website to get all the details since I know ZERO Japanese. In no particular order here are the items.

This one was a bit odd. I was expecting a chewy texture and for a flavourful sour candy. Sadly this one was underwhelming. The texture was okay but I’d be ok never having this again. The packaging was the highlight of this one.

The packaging really ropes you in. It’s cute and I noticed that it’s from Ban Dai which here in Canada they are known for toys NOT candy. This one is grape flavour and as soon as you open it you smell the fake grape scent. I’m not a fan of grape flavoured things so I wasn’t expecting to like it. To my surprise I didn’t hate it. I didn’t love it but if someone handed me some in the future I’d eat it.

These came in individual bags of what I thought were going to be cookies but turned out to be another item made out of rice. The flavouring was all on the one side so as soon as you put it in your mouth it was WHOOP there I am! It had a mild yet kinda of salty tinge to it. Not bad but not that great either.

Yep…potato chips. Will say the chips here in Canada are better. These were pretty bland with an odd after taste that I couldn’t place. But I will probably finish the bag off because they were horrible and I hate to see an okay chip go to waste.

Things seem to be made out of corn or rice. This hollow tube snack packed all the flavour on the outside. The texture is odd as they seem to puff the corn leaving the majority of this snack without much going for it. This was the first time I tried and I didn’t hate it but I’d be okay never having this again.

These were one of my favourite items from this box. Good crunch and packed with tons of smoky BBQ flavour. They are shaped like Cheetos and are similar to the crunchy Cheetos. Although a while after filming the Vlog I’m still burning the flavour of these …. so there’s that.

These were the dark horse for me. I’m not a fan of kimchi but these were surprisingly really good. They have this cute tiny shape which means I can pop them in to my mouth without any issues. They didn’t remind me of kimchi which is most likely the reason why I liked them.

I was expecting to like these since strawberries are my top of the list fruits. Sadly these were a giant let down for me. They got this odd wet texture to them which is hard to describe I het the act of chewing will make anything wet but this was beyond that. It had a horrible fake strawberry toasted that really didn’t help their cause. I will say this they smelled okay.

After having all of these unique treats ending with a gum was a good idea. If it was any other gum that would have worked. It started out ok. The mint was a different mint than what I’m used to but I wasn’t mad at that, it quickly turned to be mad at me with this nasty flavour that just punched me and made me actually spit it out. I’m trying to figure out how it enhances memory.

I didn’t try these as they are big and would be hard to talk while eating. But pretty sure they will be good.

I love the DIY candy kits. This one remains undone but maybe I will post a video of me doing some various DIY candies in the future.

That’s it for this week. Don’t forget to head over to my YouTube channel (Taste test) to watch my gut reactions as I ate these.

If you’d like more info on Tokyo Treats check them out on their site: https://tokyotreat.com

Check-in: still single

It’s been just over two years since I went head first in to the world of online dating. If you’ve read my post from that time you will already know what a colossal fail that was for me. It might come as a shock to some of you but I’m still single! I will say thanks to an awesome coworker I gathered the courage to try Tinder for a little bit however it produced zero results. I did get one guy who chatted with me for a tiny bit but he was only interested in coming over and tickling me… the world can be a strange place some days. I don’t judge, just wasn’t my thing and we just ended our conversation. I’m thrilled to report that I wasn’t the recipient of any harassment or negative comments like last time. I was however ignored; again nothing new to me here.

My views on relationships haven’t changed. My views on online dating for me haven’t changed. Only difference is I’m two years older and still haven’t really made any meaningful connections. I’m still a hopeless romantic that hopes that aspect of my life blossoms like it does in all those romantic comedies.

I know in order to make those types of connections one must venture out and put ones self out there however being a full time care giver really makes it that much harder. In a group I’m a member of within Facebook this topic hasn’t recently been talked about. Specifically on how it relates to having a facial difference. For me it’s heartwarming and encouraging that so many members of the facial difference community have connected with the loves of their lives or have just dated. It was also kind of comforting to see many facing the same struggles as I do, to be able to see I’m not alone.

One of the reoccurring thoughts I have in my head is that I’m ugly. That despite my bubbly, witty, and sarcastic personality I won’t find someone simply because of the way I look. Why would a guy choose a short girl with an odd face with a great personality when they can have a tall amazingly beautiful woman with an equally awesome personality? These thoughts tend to spiral and I think that maybe this is why I’m not further ahead in my career…

It’s an odd feeling to be alone when you crave companionship. This is an ongoing story in my life so stay tuned as I continue to navigate this thing called love in life.

As always I’d welcome your stories and thoughts. Feel free to leave a comment. Check out the companion video to this on y YouTube channel.

https://youtu.be/j8sGy4Aa8Z8

EDIT: I’m tired when writing posting this. In the video I elude to my online dating thing happening last year forgot it was TWO years ago. Wow time flies!

Nice to meet you!

For today’s post I’d thought I’d talk a little bit more about myself. My name is Penny Lynn and I was born on September 16th, 1981; which after a quick search on Google I find it was a Wednesday. I could probably use Google to tell me what the weather was like but figured that might be over the top.

I was born in Kitchener Ontario Canada, at the time of my birth my family consisted of my mom Marian, my dad Allan, and my two older sisters Pam and Crystal. I don’t really recall where exactly we were living but I’m pretty sure it was in a little area in town known as Centreville, pretty sure we lived in a townhouse complex.

I’m currently 36 years young and not quite sure how that happened. Time just kind of flew by; it’s odd that with the passage of time it feels as if it goes faster the older you get. Would you agree?

I was born with two craniofacial conditions called Goldenhar Syndrome & Left Hemiofacial Microsomia. I’m not sure if my parents knew ahead of time that I was going to be born this way. I have memories where I thought we talked about how it was a shock but I don’t always trust my memories. I spent a good amount of time at my local hospital KW hospital now known as Grand River Hospital before being all packed up and flown by helicopter to The Hospital for Sick Children in Toronto. I’m ptretty sure based on limited information I have I spent the first year of my life or near it in Hospital. When I was born I weighed about 2.04kg (4.5 pounds) and I was born at full term.

Sadly I don’t have any pictures of me as a baby so I can only imagine what I looked liked. The two conditions I was born with impact the bone and soft tissue formation in the face and typically impact only one side (but not always). For me my left side was just missing a good chunk of the structures. I was born with no bottom left side jaw bone, no left cheek bone, the bridge of my nose was not present, half of my left eye lid was missing, my esophagus slants at an odd angle to the left and my top jaw was in two pieces. I also had a number of skin tags just randomly placed although I’m not sure how many. Must have been quite a few as this is the tissue they used to reconstruct the missing half of an eyelid.

I’m not sure if NG tubes or feeding tubes directly in the stomach were widely used in the 80’s or even trachs but I didn’t have any of those. My mom told me that to feed me she used an eye dropper. Can you imagine how long that would have taken? I know had I been born in the 2000’s I’d most like have been tube fed.

In addition to my eyelid being fixed my palate was sewn together however to this day my top jaw is still technically in two pieces it remains what’s is called as an un-repaired midline cleft. It does make a difference that I can tell but I do know that the roof of my mouth is more like the top of a pyramid and not rounded like yours most likely is. This is probably why I can’t whistle, blow bubbles from bubble gum, or even blow up balloons. My tongue also seems to be misshaped and I actually can’t stick my tongue out. When I try it reaches the very tip of my lips but it’s not very visible. When I was younger and I wanted to stick my tongue out at a kid who was being mean I used to get my sister Crystal to stick her tongue out at them on my behalf.

Most adults who were medically fragile as kids are able to say how many surgeries they went through but I honestly cannot say. I don’t know how many procedures and actual surgeries I had as a kid. From my memory I’ve had my nose fixed twice, deviated septum fixed twice, two attempts to fix my jaw. The first one I kind of remember but nothing really. Two reversals of said attempts to fix my jaw, plus a few minor procedures some to do with my condition some not related at all. Oddly I still have my appendix and tonsils. My mom wasn’t the type to write things down or keep a journal. She also just went along with what the doctors told her and never really asked a lot of questions. I don’t blame her for that it’s just an observation.

As an adult I’m fairly healthy I’d say in the last 5 Year’s I’ve gained some unwanted weight and I’m not eating the healthiest but sometimes the easiest food to eat due to my jaw is the stuff that is pretty bad for you. Like cheesecake that stuff doesn’t require a whole ton of chewing power for me to plough one down my gullet….dang now I want cheesecake…

Well guess that’s the best place to leave this post. Until next Monday!

Feel free to like and subscribe to my YouTube channel

Happy New Year

I hope everyone had an amazing Christmas, holiday season, or just enjoyed some much needed rest. We haven’t been big in to Christmas for a number or years so it’s not something that’s important to me but I did enjoy my long weekend.

I wanted to try something out this year different from what I’ve done in the past. I want to try to do a weekly blog on my YouTube channel and pair it with a written blog. So that they compliment each other. Also I know I’m not tech savvy enough to know how to add closed captioning to my YouTube videos but I want them to be accessible so if I write a blog post as a companion it will be a great way for all to be able to be included.

I wanted to try and set goals as I’ve never been one to really finish much I’ve started, doing one weekly I’m hoping will be achievable. I’ve got about 8 weeks worth of ideas written down. If you have suggestions on things you want me to cover let me know. I don’t have a real niche I’m kind of all over the map I like that about me. Some of what I will talk about will be about living with a facial difference but other stuff will be just random.

Some of my other goals for 2018:

~ will be to lose some weight would love to lose 10-15kg (20-30lbs).

~ will be to get some awesome make up and get good at applying it myself.

~ knit myself something awesome

~ pay off my credit card debit. Thankfully it’s not crazy high but still keeps me up at night.

Those are about it. Nothing really “out there”. All of those goals are obtainable, tried to keep them realistic. These are goals I can break down and have milestones set throughout the year. What are some of your goals?

I wish all my readers, friends, and family a wonderful 2018. Let the lows just flow away and let the highs be your light. Be kind to those around you and know I’m always here for you!

I Wonder

wonderimage

 

With the movie Wonder just released I thought I’d I share my two cents worth (pun very much intended). My mind is wired in a way that sometimes annoys even myself. I can see both sides to most situations. There are very few situations where my brain draws a hard-line and refuses to see both sides. The reason why I’ve even said this is that it’s important for the following blog post.

 

The book and the movie have sparked fierce debate in my Facial Differences Facebook group. I won’t be sharing details but it’s safe to say there are strong feels on both sides. There are some who feel the book and movie are awesome and an amazing step forward for those with facial differences. On the other side there are some that see the book and movie as disgusting way to make money on our backs. I’m in the middle; I see both sides of this coin.

 

When I first saw the trailer for the movie adaptation of Wonder I didn’t get through it. I broke down and cried like I haven’t cried in a long time. I can’t describe the feeling that washed over me but I can say I was moved. Before I did a deep dive or talked with others I was excited for the movie. I was excited that in 2017 there was finally a movie that allowed me to “see” myself (so to speak). At this point I hadn’t read the book. Did you know that Wonder is only the 2nd movie to focus on facial differences? Did you know that the major difference between them is Wonder is a complete work of fiction and Mask was based on a true story. This difference is important to note; and a point of contention. The book wonder was born from the author’s briefest contact in an ice cream shop where her son reacted rudely to a little girl who had a facial difference. There are those in the facial Difference community who see that the author is making money by sharing a story that is not hers to tell.

 

Here’s my take understanding I have not seen the movie but I have read the book. I choose to see this book as the tiniest pebble in what I hope is finally a foundation that we’ve been working on for the longest time. We being those in the facial difference community and our allies. The book doesn’t tell my story but it does give the smallest glimpse in to some of the feelings I’ve had in my life. That’s what I want those who read Wonder to get; but to also remember that this wasn’t written by a member of the facial difference community. The book unlike real life puts a nice neat bow at the end of the story it told however even that end carries concerns that I shall leave for another post where I will do a deep dive and review. The aim of this post is to help people understand the role this movie is playing.

 

When I’m seeing the tweets from people who have seen the movie I’m truly concerned that people aren’t getting it. Not understanding the true impact having a facial difference has on lives. I see tons of people describing the movie as “awe-inspiring” “heart warming” and such. Pretty standard for movies that focus on personal struggles while showing a character going through life with the added stress of something out of the ordinary. I’ve heard before that people see me as an inspiration, as their hero and I’m not comfy with that. It’s as if I should be put on a pedestal just because I get up go to work, look after my mom, pay my bills..etc while having and dealing with a facial difference. My real triumph is I don’t tell everyone off who stare at me is and this is something I would accept being applauded for ’cause that’s a feat. Everyone has their battles, everyone has to juggle home and work balance and some also have to be care givers. The fact that I also have to juggle having a facial difference doesn’t make me any more of a special person than you who read this. It absolutely adds additional challenges and means I have to spend way more money on things like Dental care, eye glasses, and a ton more time doing various things but that’s it.

 

The other concerns I have with the movie and the book are the marketing strategy / campaign. Specifically the #ChooseKind and the actual image used on the books cover and now on posters and such. Let me first address the #ChooseKind hashtag; to be honest I’m not 100% hating it; as a big picture; it works. Because sadly we do need to be a little more kind to one another. We need to actively teach our kids to be kind because sometimes they grow up to be assholes. I’ve often thought about how sad it is that there needs to exist a chapter or at the vary least a sentence in all employee handbooks addressing this very thing (looking at you Sportchek). As for the image I can say at this point I think I’m 100% against it. Maybe someone will be able to enlighten me as to why a solid white face with no features save for 1 right eye is a good representation for the book; cause I ready it and Auggie has both eyes. I feel like it was almost a cop-out; not showing an actual facial difference being represented does a disservice to the story.

 

I’ve been getting asked quite a bit if I’m going to see the movie; right now the answer is no. When I go to a movie (which hasn’t happened in a long time) I want to escape my reality, I want to laugh, or be thrilled, what I don’t want is to be confronted with the telling of a story that will have me relive what I went through just to get in to the theatre.

 

At the end of the day I hope tons of people see this movie so that my (and everyone else’s) facial difference is more normalized. I’m pretty tired and jaded so I’m thinking this movie will get tons of award buzz and lots of people are going to get a ton of money because of it however it will help the community very little. It won’t ensure that kids with facial differences get access to the care they need more easily, it won’t ensure that they truly can grow up and choose any profession they want (actor, news anchor on the evening news, model… etc), it won’t stop kids growing up like I did with no friends. We are all human and flawed and one movie based on a book written I’m sure with the best of intentions won’t make my life any different. For those who see the movie seeing your difference being represented by an able-bodied actor wearing make up to look like you is akin to mocking us. I had kids try to contort their features to try and mock the way I look which was something I had forgotten about for a long time and something I hope to once again forget; but movies like this won’t make that happen. Remember that you can make a difference by having real conversations with kids about differences; facial differences, is just one. Talk to your kids about how wheelchairs are not a burden but provide much needed access to mobility and thus freedom to do the simplest tasks. Tell your kids that those with wheelchairs or facial differences or any difference shouldn’t be pitied or admired but respected as you would respect anyone. Remember that this is only a movie, and that those who live with a facial difference don’t always get happy endings. Remember that love is a powerful tool and can overcome a lot.

Rant…I’m pissed! Again!

Bare with me… rant incoming with F bombs. You’ve been warned.

This photo is a still from an upcoming / already aired episode of Legends of Tomorrow.

flash

If you can’t figure out yet what this rant is going to be about… you clearly don’t know me.

This Character is known as the Black Flash and as you can see like so many other fucking villains they’ve decided to make him “scary.” How did they achieve this… well they decided to fuck up his face.

I’m so fucking tired of never “seeing” myself on TV and instead seeing “bad dudes” made up to look like a version of me. I’m tired of saying that the only character I can identify with is The Phantom (he doesn’t even have a name!) from The Phantom of the Opera. I’m tired of realizing that kids today born as I was STILL have never seen a true, honest, “normal” role in a movie or TV show that represents them.

When they choose to cast able bodied or “normal” looking folks in roles in which they play someone disabled or with a visible difference (facial or otherwise) I often hear people say (in defence when I start ranting) that “well maybe no one with that disorder, disability, facial difference auditioned or may not have been a good enough actor to play the role or that they don’t exist”. You know why that is? Because we are not GIVEN A SNOWBALLS CHANCE IN FUCKING HELL to try.

If I went to an open casting call I’d be laughed out the door. If they are looking for someone with a difference it’s normally a tiny role meant to further the plot in some way or the actor/difference is being used as inspirational porn.

I get that I will never win an Oscar, I will never be an actor. I work in a call centre because I was NEVER told I could be anything I wanted to be or DO anything I wanted to do. You know what? That’s because I never had to be told that, I already knew. It’s 20FUCKING17 and in a time where we are focused on valid world issues such as #BlackLivesMatter (Damn right they do), #Feminism and all of the other valid struggles;  those with facial differences are STILL screwed over. There is ZERO public outcry, or a desire for society to change this. Zero movements or effort to raise funds for organizations that actively help those with facial differences navigate life.

Side note: In most workshops I have attended run by groups like this they actually advocate to call the employer ahead of time to “warn” them that you have a facial difference. FUCK THAT, if you see me and the first thought is FUCK she’s ugly and you decide NOT to hire me, you can go tuck yourself. I have ZERO desire to give anyone the chance to prejudge me. I’m tired of the fact that there is a HUGE assumption that just because we look different it automatically means we have a lower IQ. When I’m with anyone and we encounter a stranger the stranger will AUTOMATICALLY start talking with the person I’m with as if I don’t even exist. This is ALWAYS the most evident when I’m training a new volunteer. Someone will walk through the door and even when I say “can I help you” with my trainee by my side, the person will IGNORE me and first speak with my trainee (they clearly miss the deer in headlights vacant look most of my trainees have that first day). I have NEVER mentioned this but anyone of my trainees who reads this can probably remember this happening.

I step out in public every fucking day to provide for my family when there are days I’d rather stay home than venture out KNOWING I’m going to get stared at, looked at, laughed at, pointed at, and talked about. I step outside every fucking day and endure that and when it happens I either want to cry or snap. I FUCKING gave the finger to a kid at Costco yesterday and I laughed. I laughed because the alternative was either teaching that kid a few new swear words or cry. I can’t go out and shop in piece… nope I have to deal with shit like that. Most articles produced for those with facial differences talk about how to approach such topics, suggesting we make eye contact or politely strike up a conversation. I disagree with ALL of these methods; how about we start teaching children at an early age that people come in all sorts of shapes, colours, and flavours. How about we start producing movies, art, TV that show all walks of life so that when everyone is growing up we see EVERYONE and oh look no one is considered a freak (unless you like that sort of thing). It’s akin to victim blaming; I have to approach you differently simply because you’ve never seen another human being that looks different even though unless you are a twin we all look different from one another anyways.  I’m ok with being the anti-role model; I’m ok teaching kids to stick up for themselves and being able to tell others to mind their own business and stop fucking starring at them; they should be allowed to be anything they want to be but instead we teach little kids with differences that you have to teach others ducking decent human manners.

YES, I have a job, I have a house, I have a sister who is my rock (shout out and lots of love to Crystal), I have amazing friends and co-workers and complete strangers who think I’m awesome. That helps it really does however this post if for the rest of the world, to those agents, casting managers, film makers etc… Pull your heads out of your ass! I’m FUCKING tired of all of this shit. Yes to those who support me (you know who you are) I get that I’m loved, I get that I’m luckier that probably 80% of the world but that doesn’t help me get out the door every morning. If anything it adds to it. I have a voice I can say ALL of this but it won’t make a difference. Those countries who treat their disabled like shit will continue to do so, those countries who throw away their children because they look different will continue to do so. Until we as a society decide that those with differences are a VALUE and not trash, not something to be pitted the world will NOT change and I will continue to have to write these words. I won’t stop, as much as it gets me mad, upset, everything I will gladly take on ALL of that. I would take on all the hurt that children suffer and I would be ok, I’m USED to it! I keep putting one foot in front of the other because if I dared to stop, I would crumble and I wouldn’t be any good to anyone.

PLEASE share this, please ADD to it. Tell YOUR story! Together we can change the world; one voice really CAN make a difference.