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

When it rains it pours

I’m exhausted so let’s talk about the every day struggles around $$ shall we?

Daka and son Dorje

Today I took 1.5 hours of unpaid time off to take our three crazy dogs to the vet. Typically I space out their visits so that financially it works. But we were a tad on the desperate side. See we have used a mobile groomer for well over 6 years. She was awesome, came to our home and took loving care of our three pups. We had her come every three months. Our pups DO not like car rides so any way we can minimize that the easier for all involved. When it came time to schedule their grooming appointment we didn’t get the email out to her before she went on vacation. So as soon as she was back we emailed her, no response. Emailed her again, nothing, called her, no answer and didn’t return our messages. So pretty much after over 6 years we were ghosted by our groomer. So the race was on to see if we could find another mobile groomer. Amazingly they don’t exist, We had one promising lead, but again she decided to also ghost us, cause HEAVEN forbid people just say words to convey a message…..ugh. With the requirement (correctly) of up to date vaccinations we hauled our butts to the vet where I shelled out $822! I love my dogs and it’s not about the money but DAMN there goes the cash I was holding to fix my fence.

LtoR: Dorje, Daka and Ellie. Relaxing after stressful visit to vet

My fence in case you don’t follow me on the social media (Twitter: @PLoker) half fell down. Year or so ago a section of it started leaning heavily but we managed to prop it up. Well earlier this year during an intense wind storm that sucker flat out gave up. So like anyone, I waited until the weather was nicer and I tried to get quotes. I tried, and tried and tried…. I’m confused, if you run a business for anything why is it when people contact you about said anything don’t you use words to convey thoughts? Mainly “super sorry can’t fit you in this season or come out for a quote.” That would be helpful, you know what’s not helpful, just ignoring the people who want to give you money in exchange for doing the thing you created a business for! So after FINALLY getting three quotes ranging from near $10,000 to about $4000 I went with the middle guy who knew budget was a concern. We agreed to only do the one side of the yard for which he quoted me $1600, reasonable. Neighbour I share the lawn with agreed to pay half. Neighbour didn’t find anyone to give quotes or expressed any desire to provide any funds upfront. Cool, all on me, gotcha. Dude asked for $1000 upfront for materials and such, he came, I liked him and his wife. Lovely people. He has some health issues so there started to be some problems….long story short it’s turned in to one of those HGTV horror stories where I’m out $1400 (gave $400 to do my front garden) have a pile of warped wood in my backyard, 6 x 30kg (60 pounds) bags of now garbage concrete and a sour puss dude who refuses to refund me my money.

Bye old fence. Well not by, dude just left this mess!

I also need to re do my driveway, roof, front and side door cause in the winter you can just push my locked door open…that’s safe. And my biggest expense project I can’t get done, my basement which flooded a lot and now has mould.

So needless to say for all those who also bring home the bacon to support your families I GET YOU! You are not alone even though it feel like it. Cause all you want to do is buy yourself some pretty socks but you can’t cause that money needs to buy your family food. Maybe there is a reason why my BP is through the roof lately. LOL 😭

I hope this post doesn’t come off as whiny, I’m really tired cause I don’t sleep much and I’m just trying to put one foot in front of the other. Also my moms PSW is out for two months and we might not get a replacement so those 6 hours my sister used to have to go get groceries may have just dried up so will now have to figure out how we manage bathing mom and getting stuff done after my work hours. Monday’s my sister and I would go out together the only two hours a week we had to spend outside the house with each other. Wednesday’s my sister still gets respite, imma still holding down the fort and working.

What are you struggling with lately? Let’s support each other. Also have I told you that September is Craniofacial Acceptance Month?

With this brush, pencil, marker, I thee art!

“Creativity takes courage” – Henri Matisse

Shout out to Barbra L. for today’s blog post topic, art, my art.

“Pavement Daisies” photo taken by Penny Loker

For as long as I can remember I’ve always had access to crayons, colouring books, and paper. We were dang poor but this is one thing we had. One of my fondest memories is just spending hours colouring with my sister. it was always something I enjoyed doing. Just playing with colours, drawing. It wasn’t something I did consistently.

“Alone” Drew by Penny Loker 2019

One of my favourite classes in school was art. High school was the first time I thought I might be good at something. One time in English class we had a project where we had to do activities from a list regarding a book we were reading. I don’t remember the book but I remember spending a lot of time creating a map of where the book took place. I was SO proud of what I had done, it was SO good. So good in fact my teacher asked if he could keep it. I let him.

“29 fallen stars” painted by Penny Loker Aug 4th, 2019

As I got older, and life happened art was something I got away from.I still doodled but nothing more. In the last 6 years I’ve found a lot of happiness in creating art of all kinds. Whether it’s drawing, doodles, painting, playing with clay or more recently digital art I find myself able to channel stress in to my art. I find comfort and community.

“Spacing Dreams” painted by Penny Loker May 6th, 2019

Art can mean and be so many things to so many people. I love watching other people do their art and love just looking at art. I don’t have a process or any specific techniques. A lot of times I get an idea and I’m compelled to make it happen. Most times it really doesn’t turn out as expected a lot of the feedback I get leads me to think I’m doing a decent job. There are some pieces that I look at and I can’t believe my hand created them, both the good and the bad, lol.

“Summer Storm Brewing” painted by Penny Loker March 20th, 2019

I love taking awesome photographs, and just letting my feelings out in any medium I can. I’m glad that art doesn’t have to be done with the most expensive of tools. If I could create art all day and make a living I would. I would love to have a dedicate art space.

“Flower in the storm” created by Penny Loker

Art is a kind of hope, for me. I hope so much when I do the art that most times it’s exhausting. What are some of you favourite artists?

Zentangle drew by Penny Loker

All of the art work pictures are all available for purchase. If interested please send me an email and we can review pricing. I will explore this topic in future posts. When I do what are you interested in knowing about my art?

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.

It’s all a matter of perspective

“You’re such an inspiration.”

“I don’t know how you do it.”

“When I’m having a bad day I just remember what <insert name here> is going through and realize I have nothing to complain about.”

“I shouldn’t complain, there is always someone worse off”

You’ve probably read these few starting sentences nodding to yourself. Agreeing with them, or have uttered them on a number of occasions. I’d be lying if I said I never have, I have. I wish I could go back in history and stop myself. I know one thing, future self won’t say them. I’m writing this in the hopes you also will reconsider those words in the future.

I have heard these sentences directed to me on more than one occasion. More so recently for some reason. I’m not a saint, I’m not an inspiration and I’m 100% NOT a meter stick.

Every time you compare your hardships to those going through a difficult time, or are living with a difference it doesn’t accomplish what you think it does. Let’s look at just the examples below. As I write this I will try to be as well rounded at seeing both sides as I can

“You’re such an inspiration,”

I’ve covered this one before. When I think about the other side of this one, I know that it’s not said with any malice. It’s said as a term of appreciation for the strength of character, determination, and drive that person is showing in the face of adversity. This one is very universal in its application, said to literally anyone going through a giant life altering struggles or perceived struggle. A lot of times it’s said about people we don’t even know.

How it lands is that you are praising me for simply existing. That fact that I can do the same mundane tasks as you; like doing dishes, paying bills or taking out the trash, shouldn’t elevate me on to some pedestal to be admired just because I do those tasks with a difference. On the other hand if my choosing to share a story inspires you to do good, donate to a charity, or be less like an asshole, I’m ok with that. What my ask is, think about WHY you say/said this, try to be more specific with how you are feeling. If the reason why you are saying this is because my struggle or existence makes your life more shiny or tolerable than maybe you need to have a deep thought session and reevaluate things.

“I don’t know how you do it”

This one when said can go either way. When I hear it from loved ones I know there is no ill behind it. This is not one I’ve said to another human so am struggling a bit to be on the other side. Every time I hear it it always hits me with a negative connotation. Like “I don’t know how you do it, looking like you” or “man, I don’t know how you do it looking after your <insert loved one here>”. I know my friend who has twins got this question a lot in the first few years of her becoming a mom.

This sediment is often used as a meter stick to ones own life and struggles. It really only serves to devalue not only those it’s directed at but the individual who utters them.

As the one who gets it directed at, here’s the thing. My life, struggles, hardships, or wins (lol) are NOT a meter stick for which to measure yourself on. Just because I’ve had to deal with one thing after another after another doesn’t make me an inspiration any more than it makes me unlucky. I share my life and struggles willingly not out of some need for vanity, or for validation that I’m living up to what you feel I should. Rather I share my shit show of a life to be a part of a greater community, the human community. I share my struggles with living with a facial difference not to gain your pity, sympathy or even empathy but rather to normalize looking different.

“When I’m having a bad day I just remember what <insert name here> is going through and realize I have nothing to complain about.”

I would say this one seems a lot more prevalent in recent years. Another one who’s intentions are rooted in good soil but end up in a bad place. Yet another meter stick. Another one I struggle to see both sides of.

Why is it ok to feel better about yourself or your life after thinking about someone who is struggling? Whether that person be rich, poor, famous or infamous, their life is not ok to use as a crutch to make you feel better.

“I shouldn’t complain, there is always someone worse off”

Related a bit to the last one, and the one I heard most often by those saying it to me, when I voiced fears. The one I internalized and said not only to myself but to others. When I said it it was to give me strength. I said it because I thought it meant that I was honouring those who maybe had struggles greater than me. If I could get through that day, that procedure, that minute I would be better off. I was oh so wrong.

I’ve learned that it’s not ok to belittle your own struggles, fears or feelings not matter how small they seem to you or others. It only serves to give you a false sense of security instead of dealing with what you are going through. I get we humans tend to be competitive but this is not an area where the strongest or weakest are at odds.

I hope that writing this it doesn’t come off as preachy. I know I’m not the first one to write this sort of thing. I love to let you all in to my life but I also share things in part to help me process my world. I don’t always need a solution, suggestion, or comment, what I need it to be heard, to exist sometimes outside of my own head. Hopefully one day those with differences of any kind are given level footing.

Still here, day 17 of bleeding.

Written on Thursday June 27th, 2019

So it’s been 3 days since I wrote my last post, since I saw the nurse practitioner at my doctors office. I had bloodwork which came back quickly, the office hasn’t called so I’m taking that as a good sign. I can see the results and there are no flags but I’m not able to fully grasp the picture it’s painting.

The other test she has ordered is a transvaginal ultrasound. If that doesn’t sound fun to you I’m in agreement with that. I’m not looking forward to it. I googled it extensively and found that it will not be pleasant. The lady who booked it said I have to drink 1L of water about an hour before hand and hold it in. I can assure you that will NOT be happening. I will drink what I can but 1L is impossible with out me vomiting it up or peeing my pants on the way there. They are so booked up that I can’t get one until July 12th with my follow up being on the 15th. That means these posts may go live at that point or may just get deleted, I’m hoping for that.

I’ve never been ashamed of having my period, I never openly talked about it outside of talking with my sister but in recent years I’ve followed in some amazingly awesome women’s footsteps. When I’m at work and have to change my pad, I don’t hide it, I carry it out in the open. I’ve openly told co-workers that I have it as a reason why I I’m feeling shitty that day. I’ve told both male and female co-workers, I don’t care! If a guy doesn’t know that this happens to women by now, not my problem. I will not be ashamed, I will be honest.

The following was written on Sunday June 30th, 2019

I feel like I should start these posts with a star date as if we are in the Star Trek universe…lol

I’m still bleeding so it’s day 16, that’s nuts. I’m uncomfortable to the point if I sit in an desk chair for long periods of time I start feeling sick. I hope that symptom is all in my head.

My sleep seems to be fairly normal but my appetite and how much food I can eat seems to be low lately. Also I’m peeing a hella much. I used to be able to go a crazy (most likely unhealthily) amount of time between feeling the need and actually peeing. Now I not only going more frequently I can’t seem to hold it as long.

I’m trying not to think of the worst but that’s always where my thoughts go to. I have a brain tumour for heavens sake so ya know… thankfully that has turned out ok-ish (so far).

I think about past lives and think I must have been a horrible person to explain all the crap I’ve had to deal with in this life. But then I think about how much easier for me it will be to be the one going through it, whatever it might be. It would be so much harder if it was my sister, or my mom going through any medical crisis, but I’m a seasoned pro. My brain also thinks that after all the testing and what not nothing will show up and the doctor will just shrug it off and I will just have to deal with it.

Written July 1st

Random thought: how can my body still be bleeding FFS? Seriously 17 days straight, morning, noon, night…where the hell is it coming from? Between the 11th and 14th day it got quite a bit heavier but has gone back to the flow rate of what it was on day 10. Still there, but heavier than what a light days pad could handle. Day 17, wow…