Starting a Podcast

In January 2020 I had an idea to start a Podcast, a specifc one, I wanted my podcast to be about facial differences. Diving deep and talking about all the things I think people should know about. Moreover I wanted to make something I wished had been around when I was growing up.

The phrase “nothing about us without us” is something that rings on so many levels. I’m always advocating for represntation but I know I’ve not always been proactive in my approach. I have horrible sense of self and I always feel like I’m not good enough, that no one will care, that no one would understand, that I will be laughed at. And even if all thouse things are true I need to try to be better at just being. Being me and trying new things.

I knew I didn’t want to do a solo podcast, I have nothing against those who do, but the subject matter I wanted to explore would work best with more than just my voice. I had wanted to do it with a friend who is local but it just never panned out, which is fine. I dropped the matter but continued to think about it.

About a month or so ago I approached my friend Kelsey and asked if she had wanted to join me. I was SO thrilled to learn that she also thought about doing one, and even had an outline and all this detail sorted out. I was very impressed and knew I found the right person.

I did a google search for podcasts that were about/for/from those with facial differences and I only came up against one with the last episode being released back in Oct 2019. There are not a ton of voices out there that really represent me or my expereince. Who better to be a voice in the void than Kelsey and I. We can offer a unique voice, tell our truths . We hail from differnt parts of the country, she is younger by 9 years, our expereinces have been vastly differnt yet similar, and our conditions are not the same. I know that we will not have the same views on all the topics we discuss and I think that’s why I think having Kelsey with me along this journey is a great thing. Not only for me but for our audince. It will continue to foster that just because you share a giant thing in common you won’t always see eye to eye.

under construction – Dictionary.com

In terms of making the actual thing a reality our biggest obstcle is that She’s in Calgary, AB and I’m in Waterloo, ON.; a time difference of 2 hours. Our next obstcle was editing…how does one go about editing. We knew we wanted to do both an audio as well as a visual version of our podcast. This means editing a video, something neither of us had done. I’ve done basic editing for my own YouTube channel but nothing as involved as editing a podcast. I’ve watched quite a few videos and practiced on a practice video her and I shot togheter. Lets say my editing skills are thus far not on fleek (as the kids say). But it’s something I’ve wanted to learn so I figure best to jump in two feet in the deep end and just learn.

It’s not ging to be easy, the editing I mean but it’s a skill that I don’t think anyone is really good at until they actually just start doing it.

We hope that this podcast will be popular, that it will find an audiance not just with those who have lived this shared experince but with the wider public as a whole. To breakdown the barriers that currently exist for those with facial differences. We plan on launching a patreon to help us continue to make content and my hope is to find and pay an editor who will be MUCH better than I! 🙂

I hope you will join Kelsey and I on this journey. You can find our YouTube channel here.

You can find our Facebook page dedicated to our podcast here.

When we do set up a patreon we will let everyone know most likely in the podcast and Facebook so please like, subscribe, share, all the things! Our first podcast should be dropping this coming Monday as long as I can edit the thing…wish me/us luck.

Third kick of the can?

Yesterday’s appointment is still weighing on me so to help me work through that, here’s a public blog post.

To get to present day I want to share how I got here. 5 years ago I had a lower left molar removed. It had to removed because there was only about half left, the rest had cracked and who knows where it went. So an oral surgeon was tasked to help me. Since dental work is expensive I opted for just freezing, it remains the single worst thing I’ve ever been through that’s after 30+ surgeries. It wasn’t the doctor’s fault, it’s just how my jaw is. He couldn’t take out the whole thing, he got the roots out but to this day there are bits of that tooth poking out. The healing from that wasn’t great, took a long time and was pretty painful.

About a year after that he took out my sole wisdom tooth. I got fully knocked out with that and that was so easy. Healed well and with little pain. I went on my merry life. Throughout the years my teeth have shifted and with each time it’s been painful.

That pretty much gets us to present. A about a month or so ago I started getting pain in the area where that tooth is. It was low key and I just dealt with it, it got worse, and again I ignored it. It got to the point where it was pretty swollen, really painful and I couldn’t open my mouth enough to put a cracker in. Eating became a challenge, and I finally decided to get some help.

I tried to make an appointment with a new dentist who ignored me. However knowing me, my jaw and from past experiences a regular dentist wasn’t going to help so I didn’t get too angry. I decided to try the surgeon who had taken the tooth out that I felt was giving me problems. His staff is just as great as he is and let me come in. He took a look and said he needed a CT X-Ray to determine if he would be at risk for breaking my jaw in the attempt. Got a script for some heavy painkillers and amoxicillin and waited until I could get this scan done.

CT X-Ray, 4 views of my jaw.

The scan was yesterday. It was quick and easy. The amoxicillin has done its thing and has greatly reduced my pain. The painkillers are a no from me. Tried half a pill and, nope.

I sat across from him, he looked at the scan and I knew from the look on his face he wouldn’t be able to help me. Those with disabilities will most likely understand that look, we tend to get passed around like a hot potato. It’s why I don’t seek help very often, because I either hear “I can’t help you” or “no, there is nothing wrong” in either I feel like I’m a bother, what was the point in even trying.

The doctor I saw yesterday wanted to help, I appreciate that he admits that some things are beyond him. It’s not a money grab for him. But it didn’t surprise me, it didn’t even frustrate me. He did ask me about the last reconstructive surgery, which was in 1996. I won’t go in to a lot of detail about it, but it failed. It was the second attempt and with this one I lost a lot more than I gained. The comment/question he asked is if I would want to try again.

That one question has been rolling around my head since yesterday afternoon. Do I want to try for a third time? Do I want to go through the pain, the recovery, for what?

I haven’t had a lot of success with major surgeries. Most times I get some sort of infection or complication. As I reflect about my times in the hospital it would explain why I seemed to need way more time in hospital than other people. I’m getting older and I assume that you don’t heal like you did when you were young.

I think it would be nice to be able to eat without as much trouble as I do now. I don’t much care about how it would change my appearance but I would welcome any positive changes it would have. It I’m realistic, the chances of having a positive outcome would be low.

With all that said I will be going to the doctor he is referring me to and I will go with an open mind but with a healthy dose of skepticism.

Wish me luck.

Death Positive

I was in the progress of writing another post related to this one but I really wanted to dive in to this one. So the other one is safely in my drafts folder to be completed at another time. I also feel that people who follow me on twitter and/or Facebook might think this post is dealing with a recent rant, it’s not. But since there is interest in my views on that subject, guess I will go down that rabbit hole…..eventually.

TriggerWarning: this post is about death. If this is something that isn’t your thing, please continue to read. I hope that it will help you. But in all seriousness I won’t be offended if you don’t want to read this post. But if you do, I don’t want any negativity.

DISCLAIMER: I’m fine. This post is not some secret post that I’m doing that references my imminent demise. I just want to share my thoughts and hopefully help others. Pretty much the whole point of this bog. So don’t read between the lines, there are NO lines!

Image Credit: https://warandpeas.com/tag/ghost/

I am no stranger to death, if you’ve read my posts before this isn’t surprising. A Disney movie wasn’t my first death experience as it is for a lot of kids. Death has been my constant companion. I don’t have enough fingers and toes to count the number of people I’ve lost. Death is a part of life.

On the flip side, I don’t want to die, I’d be cool to live forever. Im not afraid of dying, I think. Im curious about life, I want to know what the future has in store. Will humans stop killing themselves in pointless conflicts? Will we explore more of space and colonize another planet? Will we meet other intelligent life? You get the picture, I just really want a time machine to see how or if this story ends.

I’ve never had to plan anything for someone that has passed. All my experiences with death have been with going to services. The most profound experience was with my Aunt June, who passed 11 years ago this past June. I had visited with her a number of times prior to her passing. She HATED hospitals and wanted to die at home. My Uncle Denny called us to advise she passed, he came to pick my mom and I up. We got to their house before the funeral home. I got to say goodbye to her. Other than that we were not involved she was taken away and we just hung around and were there for each other. It was an odd night and I don’t think I will forget the way my Aunt looked. That’s not a bad thing, I’m glad I was able to see her and say goodbye.

flower garland

The idea came for this post came from a YouTube channel I recently discovered. I don’t know what video I watched for one of her videos to show up in my recommended but whoop one day it was there. I didn’t click on it right away. Like most people I shy away from anything death related. But I’m SO happy I jumped right in.

Let me introduce you to Caitlin Doughty.

Her YouTube channel goes by the title “Ask A Mortician”. She is delightful. Brings the conversation of and about death to an easy to consume thing. She is an advocate for death positivity. before her I’d never heard those two words together in the same sentence. It’s about time that everyone thinks those two words belong.

I’ve learned a lot. I learned what adipocere is. I’m not going to ruin that for you. Google at your own risk.

I also learned that you don’t HAVE to be embalmed. I could see myself believing a not so great funeral director who said it’s the only option. I’m not a fan of confrontation and during a stressful time such as loss of a loved one I’d be apt to go with whatever.

From what I know about funeral, they are COSTLY AF, What I learned is that they don’t have to be.

Having a plan and having conversations about what your wishes are is super important. My sister and I have had fairly informal conversations. I love that we’ve even had that. So many people shy away from that. I will be making sure that I have a plan written out that I can share with the people I trust and I hope you do as well.

At the end of the day however you feel about death is ok, what I hope by writing this and helping people find this amazing channel is that people will get more comfy with just having that conversation while we are healthy.

Here is a link to a great video of hers to jump in to. You can find her on Facebook.

Caitlin has also written a bunch of books, all of which I hope to get.

What do you think, what is something you are or are not comfortable with when it comes to this subject matter?

What do you want me to write about next?

3 things that make me smile

Square: top left Daka, top right Dorje, bottom right Ellie, bottom right paw with the words “I love my dogs”

Three things that make me smile

1) Daka

2) Dorje

3) Ellie

Well that was a short blog post. See you all tomorrow.

Just kidding, today’s idea comes to us by my friend Steve. Who asked me to write about the 3 things that make me smile. As I laid in bed last night thinking about what I would write I was met with a wall of anxiety. But not for the reasons you might be assuming. I wasn’t worried about how I would only choose 3. I was worried about finding anything to write about. Contrary to what you might think what lives in my head are dark echos, darkness of many kinds. This makes finding specific things hard. I’m taking a a broad approach to these three things. They encompass the true things that make me smile.

In no specific order here are my picks for the three things that make me truly smile.

Image belongs to: https://www.etsy.com/au/listing/616099743/i-love-animals

I Smile for: Animals

It shouldn’t be a surprise this is one. A look at my social media and you will see three puppers frequently front and centre. When I am having a rough day these three dogs are my connection. But I love all animals. I don’t see any animal as “ugly” I love cats, otters, birds all the animals. I love searching out funny and cute animal videos. I recently found a Buzzfeed twitter handle devoted to animals and LOVE losing myself in their short cute videos. It sponsored but here is their handle. https://mobile.twitter.com/adorably?lang=en

Every time I see a special needs animal not getting adopted I want to rescue them. There are many breeds of dogs and cats I would love in my life. Bylaws here in Waterloo Region prevent me from having more than 3 dogs. Which I guess is ok but if it didn’t exist I’d prob have more dogs. I have more love to give.

I Smile for: altruism

I love giving. Whether it’s my time or buying something for someone (or animals). I enjoy surprising my sister when I can with something that she wants. I love being able to get things for friends and always want to give. I got a lot of personal satisfaction from volunteering and hope to get back to it. However right now (not Covid related) I can’t. I’m just so exhausted that I can’t provide the time I want to various causes. I donate money when I can to various charities and GoFundMe campaigns. Giving, making others smile or in some small way blighting their day fills me with purpose and never fails to make me smile.

Blades of grass.

I Smile for: Scents

This one might be a surprise to some. Those who really know me know just how sensitive I am to scents. Most scents will trigger a migraine, make me nauseous or give me sinus pain that stays for days. However there are a number of scents that when I smell them truly make me smile. Dress cut grass, fresh baked bread, lumber, my puppies after they’ve been groomed. A few perfumes I can still wear are White Musk from The Body Shop, Pleasures from Estée Lauder and Happy from Clinique. A really nice wine and a good dinner are also scents that genuinely make me smile.

Did these surprise you? What are the three things that make you smile.

Food is fuel

Another blog idea from the awesome Becky. All about some of my fav recipes. Please if you want me to write about something please leave a comment below.

I’m not the worlds best cook. To be honest if I lived alone I’d most like order in most days. I don’t mind cooking but I even ok not cooking. My sister also hates cooking but she is dang good at it and is the one that primarily cooks in our house. I tend to act as her sous chef, doing as I’m told.

Like most households we tend to have a set of rotating meal ideas and for the most part don’t venture too far from that. We are a meat and potatoes family but we love Asian influenced dishes. We are more likely to explore Japanese, Korean and Chinese flavours.

Tonight’s dinner was not those flavours. My sister and I made our chicken post pie and salad. This came from the one time I did make something all myself. One year after Christmas we had some turkey left over, as one does. And I searched for something to do with those leftovers. I found Jamie Oliver’s leek, bacon and turkey pot pie. So I got the stuffs to make it and made it. It was REALLY good. I made it again when my sister came and she loved it. We didn’t make it on the regular but when we moved to our house we remembered it and tried our version. And now we make our own version that isn’t hard, but is time consuming and tastes so good.

Pot pie with salad

I’m sad I can’t find the OG recipe from Jamie Oliver. But if you google “Jamie Oliver leftover leek” it will provide links to,other people who have recorded the recipe.

The most recent add to our dinners have been to do homemade pizzas. We make dough from scratch and allows us to more customize it. I can’t handle a ton of cheese so by making it ourselves I can control the cheese factor.

Cooked pizza with green olives, green peppers and pepperoni.

Baking is something my sister and I remember our mom doing quite a bit growing up. If she had spare time she was making pies, tarts, cakes or fudge. Mom’s baking was amazing. It’s also something my sister prefers to do. We do not do a lot but we love a good banana bread loaf or muffins, we love a yummy strawberry pie. Also lemon loaf is a staple since the first time we made it.

Classic lemon loaf

It’s so good. You should 100% make it and send me pictures if you do. I’ve made other loaves but the lemon is by far our favourite.

We don’t do a ton for breakfast or make anything specific for lunch either now that I’m thinking of it. We grab some toast or a bowl of cereal. Lunch is a sandwich, hot dogs or macaroni & cheese. Not very adventurous.

We have only ordered in a couple of times other than coffee which we’ve been doing as a weekly treat on Sunday’s.

Do you have recipes that you make on the reg? What are your staples.

We all have a poop story

Poop emoji

Today’s post comes from my friend Becky who texted me a few ideas. One was titled “Storytelling” she followed it up saying should be a “fun, sad or embarrassing story. So looking to bring some light to your day wanted to share my funny poop stories.

I’ve been thinking on and off about writing a book and had this idea that these stories would be placed smack dab in the middle of the book. For the same reason, to add some levity. The book I envisioned is heavier in nature dealing with my life and insecurities so having a funny middle book would be a nice resting spot. So without further ado let me embarrass myself.

Story #1: don’t take candy from strangers

You learn from an early age to NOT accept anything edible from strangers. I have no doubt my mom said this. But being a kid that was always around adults who were strangers who did offer me things for which my mom never took away I got some mixed messages.

The scene: sister and I sitting on a giant tire swing on the playground of our school. I was probably in grade one. I was a tiny, tiny kid. I was usually older than the kids in same grade but half the size. I remember sitting on the swing feet never touching the ground. My sister would have to help me get on the swing. We were just sitting on the swing and these older kids come up to us. They were not adults most likely teenagers that didn’t go to our school. Our school faced the street and it’s easy for strangers to interact with the kids. Sadly I can’t find a picture of what the playground used to look like. They came up to us asking if we wanted a piece of chocolate. I said yes and promptly ate it. My sister had taken one but smarty decided not to eat it. I remember saying “if you don’t want it I will take it” and I did, and I ate it. If you don’t see where this is going….I don’t know what to say. I ate two whole squares of what I’m sure was exlax. I don’t remember much of the rest of the day. I know I had a number of accidents. One of my most vivid memories was after school. Clearly the school called my mom but my mom didn’t get me early. Instead I walked from the side of the school to the back. Attached to the back of our school was an entrance to the back of the gym and a set of stairs. On those stairs sat my older sister and my mom. I walked over shyly, as soon as they saw me both of them burst out laughing. We lived in a house right beside the back of the school so wasn’t a long walk home which was nice. That laughter still stuck in my head. Needles to say I learned the hard way NOT to take candy from strangers.

Story #2: I blame the meds

Front of Sick Kids hospital in Toronto

I had major surgery in 1996 when I was 16. After getting out of the ICU and having been in my room for a bit. Being independent and knowing how hard nurses work I though I could take care of myself. So when I had to go the bathroom I didn’t call for a nurse. I got my feet over the edge. I stood up and things just lined up and I shat myself. I was so mad at myself I cried as I called the nurse. She was super sweet and helped me clean up.

Story #3: The trouble with Tim Bits

Timbit character

I’m not sure the exact year this happened but was not more than 15 years ago. I lived about a 5 minute walk from the local neighbourhood Tim Horton’s coffee shop. One evening as I often did I decided to walk and grab a coffee for my mom and I. I decided at the last minute to grab a couple of chocolate glazed Timbits. I was feeling ok, just as I got to Tim Horton’s I had felt some rumbling but ignored it. Got my order and went on my way. The Timbits were fresh, indeed still warm. As I transitioned from the parking lot pavement to the concrete of the sidewalk, something off happened. My tummy rumbled and well….they emptied. Walked home in my soiled jeans. Soon as I got in the house I called for my mommy like I never had before.

Well that’s it those are my poopy pants stories. I hope you enjoyed them and laughed alongside me as I wrote them. These are just a few embarrassing stories. If you want to know more or think I should actually write a memoir let me know.

Canadian eh!

Canadian flag on a pole.

Problem with setting a goal to write every day means I run out of ideas. My life isn’t exciting to write about every day so I crowd sourced some ideas. Today’s came from an awesome Twitter follower who wanted to know “Things that people elsewhere misunderstood about Canada?” I asked her if she had any specific questions and I love her question. So today’s blog post I’m going to try and answer her question (listed below).

I’m by far not the only one to write about this. Or talk about this. In fact one of my fav YouTubers is putting together a Podcast exploring this very topic. They are releasing it next Tuesday so I will link to it when I can.

I live in Waterloo, part of the region of Waterloo in the province of Ontario. I do say sorry and eh a lot, sorry. I also love poutine and maple syrup. Winter sucks!

The question posed by Belinda on Twitter is “How do Canadians draw Canada with all those islands” she was referring to growing up in school. I had to think but I’m almost positive I never had to actually draw Canada. We were always given maps that were printed out. We coloured them and had to identify the province, territories and capitals. Now I kind of want to try to draw that. If you want to see that let me know, I will make a YouTube video with that.

One of the things most joked about when people talk about Canada is how NICE we are how polite we are. I don’t know where this came from but if I had to take a guess and NOT google it I would say we are a nation that welcomes people. We have a history of being open to those in need. I’m sure the reputation is well founded but not entirely true. There are plenty of people who are assholes. I just need to go out in public to prove this.

Some weird random things I can think to mention are:

~ In Ontario where I live our milk comes in bags. Why you ask? Well it’s better for the environment. I like having bagged milk my sister does not.

~ Our $1 and $2 comes as coins. The $1 is known as a Loonie and the $2 is known as a Toonie. We also did away with the penny since it cost more to make than it was worth.

Loonie & Toonie. Which may have been my nickname in middle school.

~ Our healthcare isn’t “free”. We do have what is called Universal Healthcare. This means a portion of our taxes goes to supporting healthcare. Having Universal Healthcare is absolutely amazing. When I visit my neurologist, respirologist, or local ER I don’t leave worrying about a bill in the mail. If an ambulance is required it’s about $40. Medication is not covered nor is services such as massage therapy, optometrists, chiropractor and the like. A tweak to this optometrist are covered for kids 16 and under, seniors 65 and older or if you have specific medical conditions. My visits are covered, I go once a year, most go once every two years. Most employers will offer benefits which reduce cost of medications, cover portion of other services. My employer covers $200 every two year for eye glasses and a decent lump sum to divide amongst other services. There are exceptions for seniors over 65 getting government support, they pay between $0.11-$6.11 per prescription in Ontario but pay $100 yearly deductible. Other programs exists to help those in need.

~ In Canada we differentiate between University and College. Mostly you go to collage for more trades or certificate level trainings but not always. It used to be Nursing was offered at colleges that’s still the case but there is more connection with a University for a degree instead of a diploma or certificate. University is for degree programs. We don’t use their term collage for all/any post secondary school education.

~ There is no where in Canada that minimum wage is lower than $11.

Map of Canada where min wage is shown by province.

I’m a very proud Canadian. There are lots of things to like but I wouldn’t sugar coat the bad. This land was taken from the indigenous population and the treatment of our indigenous lands and people is nothing to celebrate. We have a lot of work to do to make up for that.

If there is something specific about Canada you want to know just leave a comment below. Maybe a part 2 will be required.

Draw me like one of those Facebook avatars

An online friend Carly who is a published author and overall amazing human recently reached out to me. She wanted to know my opinion on filters used by various social media platform. I won’t share here what I shared with her but once she published what she is writing I will link it. Whatever she says is going to be what I think, just written 1000 times better.

Her questions did get me thinking about something else that has been becoming more of a trend. Those custom avatars. A lot of my FB friends have been posting them. I’ve enjoyed seeing them. However I do kind of feel left out. I can’t get one to look like me. Because as with anything to do with these, they are not friendly to those with differences.

Facebook avatar vs. Me

Yes, I know these things might be trivial for you. Not a big deal, not worth my time. I’m not overreacting or being childish. With how fast technology is developing I don’t think it’s unreasonable to think that in 2020 I wouldn’t still fell like I’m in school being shunned.

When technology doesn’t include everyone it’s failing. Those with disabilities are always the last thought, an afterthought or at worse not given any thought. That’s how I feel when I see my friends posting their cute avatars that they’ve created. They are sharing them and using them in every day interactions. I’m just as always on the outside looking in.

Please don’t take this to mean I don’t think people shouldn’t use them. Have fun. Share them, I love seeing how cute you would be in a cartoon. I don’t need or want anyone’s pity. I just for once want companies to provide a more inclusive experience.

It’s the same when I try to use the Animojis or Memojis through Apple. It can’t really track my face and the end result does nothing for my self esteem.

As soon as Apple announced that these would be a feature I instantly knew they would be useless to me. There isn’t a way to get them to work I’m a way that makes me smile. Again it’s a random silly little thing and yet it angers me. Makes me sad and is something I’ve thought about going to the Apple store to actually complain about. But my better sense comes along and I go about my day.

I use facial recognition to unlock my phone and I can tell you the process for that was about what I expected. To this day when I use it it’s at odd angles that I notice my sister and her BF don’t have to use. In some cases mine lets me unlock my phone from quite a distance which isn’t half bad. It makes me wonder what surveillance type facial recognition would see me as. Would it dismiss my face as little more than white noise?

Me looking straight on camera with my Memoji.

What tech do you get frustrated with?

Covid-19 My experience

I’m off work this week, a staycation, cause you know, reasons. I have a few goals and one of them is to try and to do a blog post a day. Fingers crossed, thoughts and prayers.

Tonight I wanted to talk about my experience during this very odd time we are in.

We, like the rest of the world first heard about this new virus in early January. Canada had its first confirmed case of of Covid-19 on January 15th, 2020. Sooner than most countries, including the states which wouldn’t see its first case until January 19th. Public heath told us that we shouldn’t worry, wasn’t any evidence that this new virus was easily transferable from person to person. I don’t think I gave it much thought at all. In early February I got a call from a friend that sounded more alarm than anything we heard before. We took that warning with a grain of salt but we did heed it and did stock up on some items.

In late February I had to take a trip to my Neurologist‘s office in Toronto. I travelled in crowded conditions both to and from. I answered a questionnaire asking pointed questions. Reminding me a lot like what happened during SARS some many years before (2003). I will need to admit that I was annoyed. I did sit beside an older lady who was coughing. Which I’d be lying if that didn’t give me pause as I was answering those few questions. But again I didn’t think much about it.

In the first week of March I had to go to my optometrist’s office to get a hair plucked out of my eyeball. At this point it was clear this virus wasn’t to be ignored. There was real fear. I remember taking public transit but being extremely careful not to touch any surface. I was very proud of the fact I didn’t touch anything other than my bum to seat and used my jacket to pull the cord to get off. Got home washed my hands and that was it.

On March 16th I noticed I wasn’t feeling well. My throat was sore and I had developed a fever. Knowing this might be nothing or something I didn’t say anything to my sister. I managed to work my shift on the Tuesday but as the day wore on I knew I couldn’t ignore my symptoms. I contacted my local Public Health Department. I spoke with a lovely person who took my info and said I would be contacted if I would need to be tested. I was then told to self-isolate. I told my manager than I told my sister. That wasn’t a conversation I wanted to have. After finishing my work day, I began a long two+ weeks alone in my tiny AF bedroom.

I had a fever for much of those two weeks. I slept most of the time and barely ate. I coughed a ton and had more than one night where my coughing kept me awake. There were times I’d cough so hard I’d bring up the little water I drank. It wasn’t a fun time.

The first few days I waited to hear from public health. I was also in contact with my family doctor. Public heath got back to me via email, they would state that due to the lack of testing kits, I would not be tested. To this day some almost 3 months later I don’t know if I contracted Covid-19 but based on the fact my lungs are still not healed my respirologist is pretty confident I did. I’m now on two daily inhalers which I take every 6 hours and recently had to take prednisone for 5 days just to get the inflammation under control. I don’t know the exact nature of the damage my lungs suffered and might be some time until I do. It sucks.

My health is just one aspect of how Covid-19 has impacted my life. Mom hasn’t been able to go to her day program on Wednesday’s which has meant my sister and I get no real respite. When we have our PSW we used to be able to go out, have coffee but now we either stay home or got for a walk. Getting groceries has been a challenge as it has been for everyone.

Image Credits
Copyright: (c) Sergio Yoneda | Dreamstime.com

It’s now recommended that one wears a face mask when distancing can’t be observed. Well I’ve had a hard time getting some. I’ve ordered from two places one in early April and one early May and so far, nothing. I wish I had my dream sewing machine so I could make a customized one to fit me. But as someone with a facial difference with severe asthma I’m not keen on them. Facial masks are made for the population who are normal, I’m not that. I have the head the size of a four year old. I assume I will be knitting an ear saver, not to save my ear but to ensure I can tighten the masks. Fingers crossed the masks I ordered show up soon. Also fingers crossed Lysol wipes are not so hard to get, I have senior dogs one of whom is not above doing his business of the floor and I need more to help clean up the mess.

We are at the point where things are going to slowly reopen. I’m not sure how I feel about it. I think it’s too soon. I don’t think we will adjust what we have been doing.

On the topic of masks, I’m seeing an awful lot of mask shamming. Whereby people are being AHoles to anyone not wearing one. Here’s the thing I’ve always been one to mind my own business. Unless there is a danger to someone else or anything like that, I don’t people watch and try to judge someone for what they do. I have a feeling when I do get out more and if I can’t wear a mask imma going to have a hard time with people. I doubt very much I will be able to safely wear a mask. I think it’s going to be like herd immunity. As long as the majority of people wear one it will help those few of us who can’t. People to that will than tell me I have no business being out in public then. Damn that sounds familiar, that’s what disabled people have faced since the dawn of time. We are always forced in to darkness and kept indoors, being told we are not welcome because we are different. Well, I’m not having that. I have JUST as much right to be out in public as anyone else. I will not be held up in my home when I need to go out. Of course that means more when things are opened up. Not quite at this point where everyone is still staying indoors. So please if you see someone without a mask just keep going about your day.

What has changed for you.

See you tomorrow!

Well?

I feel like most of my blogs posts lately start out as twitter rants or threads about what I’m feeling. Today’s is no different. While watching the most recent episode of Coroner on CBC something the main character said near the end of the episode caught me off guard. To most I bet it wouldn’t have done much. It (as always) was a great piece of dialogue, but for me, it hit me like a ton of bricks.

I wanted to start off by asking you, my reader a question. Have you ever been watching a movie, commercial or episode of TV and felt like the writers made the characters say exactly what you were saying, thinking or even have felt? Ever hear one of your most guarded secrets Being said out loud by a character looked around to see if someone was catching on to you? Something that you have lived or are living? It’s an odd feeling no? It can be something so little, so minor but it’s impact is so real and anything but small. It’s something that happens to me a lot. I don’t know why that is but it happened again. Only this time it was a secret.

I can’t and won’t recap the whole episode but I will provide the dialogue which prompted this post. I could keep silent about this. Writing this post is scary for me. As I type my anxiety is telling me NO, don’t post this. No one needed to know, but since I can’t afford or find a psychiatrist this blog will have to be a stand in.

Jenny: “you know sometimes I um…have this uncontrollable well of anger.. inside me and um… and it really scares me…”

I remember when I was watching this, I was a little struck, also a little excited. Ever since I was a kid I’ve lived with that uncontrollable well. I always joked that I was slow to anger but once there, BOOM! But now as I think on it I’m not so sure that’s the case. I don’t think I was/am slow to anger, I thin I am subconsciously trying to seal the well shut and keeping it that way. For the most part I’ve succeeded but there have been a few times I haven’t. You will forgive me for keeping those incidents to myself. They are not something I’m proud of but none of them broke a law.

I wish I knew better words and imagery I could evoke to help you all understand. I know most people will just assume I’m talking about your mundane anger outburst. I can assure you that what I’m describing isn’t “normal” anger like you feel when your spouse, sibling, parent, co-worker, etc. does something wrong. The anger that I can experience outside of the traditional anger is deeper (which is why calling it a well is apt) harder to control if you let it spark. I don’t see red or anything like that. I guess it’s almost like a panic attack, comes out of something otherwise normal and threatens to burst forward and ruin everything in that moment. I’ve sometimes described it to myself as needing a physical representation for my anger. Needing to snap pencils, punch a wall, scream… that sort of thing.

For me because I’ve lived with it for so long, I can feel it, I can see it spark feel a change in body chemistry and know that I have to back off. I know what could happen if I didn’t catch it. It’s not pretty, it’s damn scary.

This part of me is something I’ve kept secret, for a long time I told no one. Only in the past year did I open up to my sister and our core group of friends about it. I’m not sure how it got brought up but I was discussing my asthma and how one of the treatment options my doctors have mentioned is prednisone. This medication has a known issue where because it’s a serious and strong steroid it can cause aggression. I told my sister and friends that I would rather be short of breath all the time than take that. I have a tight hold on my anger, if I took prednisone I’m afraid that the control would be ripped away and I would do something I can’t take back.

We’ve all seen those cases in the news where the perp says they “lost control”. Most people will shake their heads and blame them for not holding control. I’ve never done that, I’ve immediately understood. I can imagine what it feels like to have that control and I know the consequences of losing that control is catastrophic. My sister has maintained that she can’t fathom the need to punch a wall. That’s she has never been that angry before. Yet when I dip in to that well I do know what it’s like.

Don’t get me wrong the consequences are valid and just. Losing that control doesn’t absolve you of responsibility. This well is most likely something one is born with. But I could be wrong on that.

I guess I’m opening up on this blog post because Again I can’t afford a psychiatrist so this is my therapy. Just hoping I’m not alone, and if you can see yourself in these words, you are also not alone. Even if you don’t tell anyone just know it’s ok to feel this way. But know your limits, know and learn to feel the spark, be cautious. Ask for help if you feel like you are losing that control.