It’s ok not to be ok

TRIGGER WARNING: this post talks about suicide, please only read if you have the emotional currency to.

Before you read further know that I’m ok.

When I got my clinic notes last year and read through them the emphasis was to “fix” because my mom was worried about how other kids would see me. It wasn’t about teaching me how to cope with my facial difference it was about teaching me we needed to fix my difference because of how other people see me. I blocked out so much of my childhood, I have no doubt there were some peers of mine who did treat me ok.

I don’t remember any adults sitting me down telling me it’s ok to be angry, sad, frustrated or scared. I learned from an early age what it meant to just get on with it and not complain. I stopped telling anyone about what kids said to me and we as a family NEVER talked about it or talked about what happened when we went out in public. I’ve written before about how when in public my mom’s solution was to force me behind either her or my sister and put my head down. I remember protesting this on a number of occasions but eventually just gave up and started doing that all on my own, still do. One of the lasting impacts of my childhood is my inability to hold my head high in public. I walk with my head down, it’s hard to hold one heads high when one is met with stares and points in your direction.

There have been times in my life where my self esteem was so low that I didn’t know why I was even here. Why would I continue when no one liked me, no one wanted to be my friend. Why continue to be a part of a society who saw me as nothing more than a throw away character undeserving of love.

All I heard from peers was either silence or menacing comments, day in and day out. When I got home I had no one I could talk to, mom worked and told me to just ignore them, my sister tried and always came to my defence when she could but at some point she too just said I should ignore them. No one understood what was going on in my head, no one asked, got the impression that no one much cared. I never got to any kind of formal planning but I did have thoughts of suicide, I thought about best way, thought about what I would write in a note. I never formulated anything outside my own head, I never dared to say it out loud, my mom used to call people who killed themselves cowards. One of the big things that ensured the thoughts stayed as thoughts was my mom and my sister. I thought about someone having to tell them, of how she had been through so much and lost so many, how could I do that to her. I have wrestled with those thoughts and how it would play out on and off throughout my childhood and teenage years, it has been a long while since I’ve had those arguments with myself but they too have made a lasting impression.

Having a visible difference wears on a person, as I got older I got really good at hiding my feelings and never shared with anyone how I really was. Even now on my bad days I’m “fine” because what choice do I have?

Like everyone, I have a family to provide for, a house to upkeep and bills to keep on top of. In some cases this is what keeps me going. One foot in front of the other, it’s been how I’ve lived my life and how I will continue to keep on going.

I understand and it hits me deep every time I hear that someone has taken their own life. I understand when loved ones say “we never saw it coming”, because they didn’t. Not all people who suffer do so in a way that you would ever begin to imagine, in a way that you could see, or even prevent. I think as a society we are getting better at knowing this, but there is still a long way to go. Almost everyone who talks about suicide will always say “just reach out to a trusted person” or wonder why someone didn’t. I don’t think I can find the words to help you understand why that isn’t always an option. There won’t always be “a cry for help” there won’t always be a moment where YOU could have made a difference. I found a tribe online, on twitter where I know I can say the smallest thing and they will pick up on something I might not even know it came off as that. I know that if one of us doesn’t post for a day or so we are demanding a check in, just to make sure we are all ok, this tribe is something that I fell in to and it has become my safety net. Please note I KNOW I have a lot of real life connections that I know I could go to I know there will be lots of comments and such of my amazingly awesome friends that reassure me of this, and I love all of you for that.

If you’ve read this and you have felt that I have spoken your truth, know now that you are not alone. I know that on those dark days the words “you are not alone” are shrouded in darkness and seem so, so far away, I can only ask you to stay, because I need you to.

#CraniofacialAcceptanceMonth

Adventures ahead

A friend of mine approached me a few months ago asking what I had planned for next year. The answer is SO easy, big fat nothing. Being a caregiver and the person who brings home the bacon doesn’t leave me any energy or the ability to just go on vacation.

He has such a great idea and I’m stoked about it. I can’t wait to go on this adventure and for those local I have good news, you can come to! What we are planning is a motorcycle trip either our west or going east. Think my vote would be east. I will 100% NOT be on a motorcycle but in some type of RV. What my hope/dream is as I write this, is to get as many sponsors as possible and try to raise a bunch of money for charity. But also to take my family with me. We haven’t all been on a proper vacation in more years than I know.

The biggest obstacle right now is trying to find the means to rent a giant wheelchair accessible RV so that my mom is comfy, and has access to a bathroom. My plan is to vlog/blog and do other crazy things along the way to fundraise for both AboutFace and Sick Kids Hospital, if I’m super amazing lucky I’d like to add Grand River Hospital to the list.

This adventure is still in the early stages of planning. There isn’t a specific date set, I haven’t secured any sponsors or even have any clue HOW to do that. If anyone knows how best to get sponsors or may be interested in sponsoring me, hit me up!

I’m putting this out in to the world to bring good vibes and luck my way. Typically when I look forward to something it never happens but I hope this will be different.

Remember September is Craniofacial Acceptance Month, I aim to do a blog post every day this month and thanks to some really great suggestions I’m well on my way. If you have an idea for something you want me to write about, leave it in the comments!

TTYAT (talk to you all tomorrow)! ❤️

Craniofacial Acceptance Month

Acceptance, not awareness, that’s a difference between this and other month long campaigns.

I don’t know when or why September was chosen to represent Facial Difference, but since it’s my birthday month, it works.

Campaigns for cancers and loads of other illness will label their campaigns as “awareness”. They raise money to hopefully forever get rid of whatever it is they are raising money for. There are some exceptions, but not many. One of the giant exceptions is for those like me, with a facial difference. No amount of money is going to fix my face. Organizations like AboutFace, CCAKids, Changing Faces and Faces all raise money to help kids, teens and adults deal with having a facial difference. Because as far as we think we’ve come, it’s not far enough.

Each day kids who for no fault of their own are bullied, shunned, and physically attacked simply because of how they look. Every day teenagers flip through beauty magazines and see perfect faces staring back at them. And every day adults like me attempt to use online dating sites only to be told “no one wants to be with someone who looks like that.” The money raised by these vital organizations goes to programs to advocate and help those with facial differences navigate the world around them. We spend a good chunk of our lives teaching others how not to assholes. This still is insane to me, because we shouldn’t be a teachable moment. We shouldn’t have to answer constantly “what’s wrong with your face?” We shouldn’t worry about how much going out is going to cause us anxiety. And parents of newborns with facial differences shouldn’t have to worry the pic they post will be reported as “violating community standards”, or have to see comment saying that their child should never have been born, ALL because of how they look. This is INSANE to me, I can’t wrap my mind around it.

I know what it’s like NOT have a facial difference. I know because it’s all I see. In my everyday life, media, books, everywhere I’m bombarded with what it’s like to navigate the world without the added complexity of looking different.

When I get asked if given the choice not to have a facial difference the answer depends on the day. What doesn’t change is that I wouldn’t change WHO I’ve become because of my facial difference. But most days I’d love to know what it’s like to go out without a facial difference.