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…