Disability day of mourning

When I was younger and lived with my mother, she never missed an opportunity to let me know how she wished I didn’t exist. That I was a burden and how I made her life difficult, that if it weren’t for me, she’d be free. Hit me repeatedly if I wouldn’t stop crying from pain. Lock me in the bathroom when I was sick. Threaten me if I told anyone. That I was so very fortunate how if it weren’t for her, I’d be long dead.

I realized if I didn’t get out and tell someone what was going on, I would not survive. I’m eternally grateful to have one parent who loved and encouraged me.

Too many people never get that.

Today is Disability day of mourning. It’s honoring the people who died due to being disabled.

People who were institutionalized.
At the hands of family and/or caretakers
Killed in the name of science.
Killed in the name of religion.

It’s standing up and saying murder is murder. That you get no sympathy for killing us. We are worthy of life, our lives matter.

Today, we mourn the dead. And we fight like hell for the living.

Stream of consciences

I don’t much have the energy to go into full detail, neither do I feel a reason to do so. My business is mine, and not anyone else’s.

However, I want to share these few things that have been twirling around in my head.

I had bad feels and a lot angry feelings about someone I care deeply about. I felt a lot was unresolved and well, basically: I was hurt. I was hurt by someone I care a great deal about.

I was treated in a way I didn’t deserve.

We had to have a conversation that was incredibly hard and uncomfortable for all parties. It was nerve racking and all the feels. But I believe we are in a better space we were before. And here’s some shit I learned.

Confrontation sucks.

It’s just a unpleasant thing. It is, and sometimes one must do it anyways.

Everyone is capable of shitty things.
No matter how awesome someone is, they are capable of shitty things.
– I did shitty things, incredibly shitty things. I wish I hadn’t. And sometimes I lay in bed thinking about all the shitty things I ever done. -which is a waste of fucking time, by the way.

I’d like to think I learned from those shitty things. But I’m human and I will probably do it again and have to relearn the whole damn lesson.

Taking responsibility.

When you do something shitty, take responsibility for that.

If your words and/or actions hurt someone, that’s on you. You are responsible for the energy you bring. No one can force you to make you do shitty things. That’s a choice you made. Own up to that.

Forgiveness does not mean excusing bad actions.

I, in no way condone what was done. I also don’t no longer feel the need to keep it against them. Or more so, it does nothing for me.

It is useless. Should have, would have, could have. I could feel guilty about ALLTHETHINGS. But I rather not. Shit happens.

Always be honest and open with your communication.

This is harder than one would think. But seriously. Just say shit and be open about things with the people around you. Those who care about you will be receptive and those who don’t won’t.

Those who don’t give a shit, will be offended. They will not appreciate whatever you have to say, they will do what they can to undermine you. Those people don’t matter. 

I’m worthy.

I’m fucking worthy. I’m worthy of holding hands in public with, worth telling your friends about. I’m worthy of good relationships that bring me joy in whatever capacity they exist. I am worthy of love and fucking awesomeness.

My boundaries are important.
My needs and wants are also important.
How I feel *is* important. Like, fuck telling myself not to feel something or anyone else doing it to me. -Fuck telling me HOW I should feel.

Barbie Girl?

So, after a long time, I finally got my hands on my old surgical files from 1995. It wasn’t really easy to read. But neither has really been living through anything I have. But I think something about it being written like so, makes it more real?

When I finally got these files, describing what I was born with and what was done to fix it. There was a note made by the surgeon that in someway triggered me to this state of either numbness or something that I cannot quite describe.

“This little girl, age 6 1/2 years, has a very rare type of malformation. As we look at her lower abdomen and pubic region there is absolutely nothing there. She looks like a plastic doll, with no vaginal opening and no urethral opening and no external genitalia. This is a very rare situation.”

Given, the note itself is quite unprofessional and I can just assume he wrote it thinking I would never see it. I don’t agree with it, but I can also say the dude saved my life. He created whatever I have, if any sense of normalcy I do have, it’s because of him. Of course, amazing surgeon=/=asshole human being.

I have spent more time than I’m really willing to admit worrying about my body. Not your typical I’m fat or I dislike the way my right boob is bigger than the left. But it all really comes down to my congenital defect. (Jeez, even the terminology isn’t very flattering. But, clinical terms aren’t generally so anyhow.) Some real talk, I was born with a cloacal malformation. This is super rare already, but mine decided to be difficult. Because WHY NOT. That’s my life. Challenge, I kick ass, survive and carry on and eat cake.

Sadly, for a while now, I’ve had a really hard time dealing with my body. My body dysmorphia has been stronger than ever, I cannot deal with seeing myself. Every day I go to sleep, hoping I wake up and everything will be the way it should, that I’ll have a “normal body” and I wake up and it doesn’t happen. It’s heartbreaking. I worry that one day my partner will wake up and realize he’s made a huge mistake and will want a normal wife, with all the normal bits. I have this horrible feeling that people will see me for the awful frankenstein that I am, and leave me. Perhaps even worse than all that, is my acceptance they wouldn’t be wrong to do so. That I wouldn’t blame him or anyone at all. Why would anyone want to be stuck with this ‘thing”. If given the choice, I would run away too.

Maybe even worse, the thought of self hurt to achieve the goal to have that normal body are stronger. If the tissue was damaged, they would be forced to go and do something about it. -There’s surgical reconstruction, but it’s unfortunately not a choice for me, due to high risk.

I could live without partners or friends, but at the end of the day, I have to live in my body and what does one do when that becomes so difficult.

With everything above said, it’s hard to stay engaged. I’m surrounded by great folks who often question the gender binary, I have good friends who are trans* and I have my little group of support of other folks with my condition.

It’s triggering to engage in conversations where we talk about gender and sex. often those two get conflated, despite not being the same thing. Understandable why this happens, however.

They all intersect. 

For example when I see things pertaining to ‘cisgender” (describe related types of gender identity where individuals’ experiences of their own gender match the sex they were assigned at birth.)

Where do I fall? What happens when you fall somewhere outside cis? You’re basically none of the above. My body? Different. Significantly different. My sex, well. Okay. It functions, because a doctor made it function.

My gender though? I used to rely on the gender binary, actually… I clung to it. For me it was a false sense of safety. It also isn’t what I believe in, not what’s in my head. For me, I don’t believe in the gender binary, I see it do more harm than good. It makes everyone just seem not good enough. So, I reject it. Very personally? I fall in a genderqueer category. This is harder to really accept, when I’m dealing with my body issues. Because that safety net feels too inviting.

But right now I’ve struggled to stay socially engaged. A lot of that has to do with talks of gender/sex and all that jazz. As important as I think those conversations are, I also at times find them making me feel isolated and defensive. I know none if their intentions are malicious. But for me, it can be painful. It’s a reminder that I don’t actually fit anywhere.

What I do really notice though, is the constant trying to tell others what is a “right” or “wrong body”. There is no such thing. All bodies are good bodies; Let’s say that again: ALL BODIES ARE GOOD BODIES.

I don’t think ableism is funny.

I’ll be the first to say, I’m one of those people who has a wicked sense of humor. I tend to deal with my life with a sense of humor. I find laughing preferable to crying. Crying hasn’t done much for me, I’m not one of those people who feels better afterwards.

I say this, because I think at times humor can have a grey area; there’s a time in place for everything. My aim is never to offend, if anything I always hope that somehow my sense of humor will help those around me. Occasionally, my self deprecation might put others at ease. If I hurt someone, I always do my best to apologize for so.

So when it comes to jokes dealing with disability, often more than not I don’t particularly find them amusing. Especially when the humor is at expense of the disenfranchised. I’ll say this much, sometimes there is humor there, it’s usually from someone who themselves are disabled. This happens because many are like myself, and use comic relief to deal.

But when it comes from an abled bodied persons (I’m using abled-bodied here as a catchall. Those with mental illness/invisible illness are indeed still included into what I consider as disabled.) With zero experience of living this life, it’s just not very funny. I don’t think it’s funny to joke about elevators being broken, forcing people to use the stairs. Why?

Because if you are abled-bodied and have the ability to use the stairs, you are very fortunate, Me and others like myself? We are shit out of luck if this happens. Which happens quite often. Living in Boston, it’s terrifying how inaccessible this city is. It’s always terrible when a place is inaccessible, but for a major city it’s somehow more pathetic. Remember, this is a city that very recently had a protest able installing street ramps. Because it would somehow remove our historical value. The “historical” excuse has run it’s course. Time to upgrade.

But back to the previous; I’m always upset when people think it’s funny when elevators break down, or as many places have taken to making a deal about using the stairs rather than elevator. (ironically, at a hospital often enough.)

Recently I engaged in a post addressing this. It was a picture of a wheelchair user, at a elevator that was urging people to take the stairs rather than the stairs. (irony!) Sponsored by a big insurance company. (Which routinely denies disabled folks the things they need to stay “active”.) And these people will always to deflect to the whole “People are getting fat, lazy and need go to work it off! And if that’s the price we pay for  getting people fit, well so be it!” 

I’m sure plenty of people  and the person  still thinks this is funny. I’m sure many would agree. (On a side note, am always disappointed in folks who engaged against all kind of other -isms choose to willfully ignore ableism. Even when a disabled person openly shares their experience.)

The best part, often these people who make these big assumptions and jokes run to their friends for validation in their bias. (Because obviously the abled bodied folks will agree with them.) To me is somewhat cowardice. If you’re going to talk about something, discuss it with people who live this everyday. It will not kill you to see other viewpoints and challenge your beliefs. As uncomfortable as it may be. And god forbid, you learn something… the horror! 

But, back to this the argument of the general population, is perhaps valid to some extent. I think health is important. I feel if you can take the stairs and be active, please do! If you have the means and access to healthier food options, be my guest! As long as you realize these are often luxuries and you are very fortunate if you have this ability. Staying healthy as one can be is always in the best interest.

(Health being relative and subjective.)

And here’s where I get all honest and personal on you all: I used to be pretty active. I did dance/gymnastics/fencing. Until my condition took away a lot of my mobility. In general, I still struggle with anger and sadness of what my illness took away. I struggle with fat/body shame. I fall into the false dichotomy that if I only did everything right, I would be healthy! I would be that 90 twig thing, blissfully floating through the air. (Despite that I was at my unhealthiest at this time. With no kidney function and everything else. And then again a few years ago, malnourished.) I am not immune to such things, all this comes from a nasty insecure place. I make a mental note about it and do my best to work on this. it’s important to self reflect on your misgivings.

It also comes from internal ableism- if _________ then I wouldn’t be sick. This is in all fairness bullshit. I was born this way, my kidneys failed. I have shitty genetics, to add insult to injury. (pun.) This is what it is. So, rather than dwell, I’d rather do what I can to do what’s my best interest. Isn’t that the healthy thing to do?

But back to my original point (Brain fog and ADD seems to be taking over tonight!) Consider this before you make jokes that affect disabled folks:

Are you a wheelchair user/have limited mobility due to disability. (Especially the former)? 

If so, do you realize how difficult it is to navigate around? Do you realize if a elevator is broken, how screwed you’d be? 

Imagine all the things you do, all the places you go. Now combine that with disability. 

Imagine the location you live, your house. Is it accessible? How would you live if you had to use a wheelchair. 

Imagine your friends no longer hanging out with you, because you are not “fun”. Or getting tired of having to wait for you to catch up, tired of you being sick all the time. 

The last, imagine what would happen if tomorrow you ended up living with chronic pain and your mobility was taken away. Reflect on how your life would change. 

All in all, I don’t think it’s really funny. perhaps because I just don’t think my struggles are funny or a laughing matter. I don’t think it’s funny how hard it was for us to find accessible housing. How often I’m refused a seat in disabled seating on the T or it just being unavailable. I don’t find the humor in being denied things I need to survive. My body is being a target for half-assed attempt at humor.

This is a first part of this, I would like to come to back to this topic. But not tonight. It’s late and past my granny bedtime.

I’ll leave this,

I do think people who think ableism is funny are sad and pathetic people. I will never understand lacking basic empathy skills. To be so narcissistic, you can’t stop and imagine what life may be like for another human being struggling.

I would not wish this life on my worst enemy. I truly hope those people never have to go through such hardship to understand where I am coming from.

But all this reminds me:

I’m a resilient bad ass motherfucker. I have had to relearn basics. Walking/talking/holding things. I’ve had to face who I am and rethink/rebuild myself more times I could count. I wake up every single morning in pain,  I continue to live and do my best. I refuse to give up, refuse to shut up and accept the status quo.

I have burned and remerged. And I will do it over and over again, Because that’s life. To constantly keep going and improving who you are as human being. If that’s not a sign of health…

Coming out

Today is National Coming Out Day.

“For small creatures such as we the vastness is bearable only through love.”
I have all the feelings.

I remember being a very confused teen. I was sad, angry and again, confused. No one said adolescences was easy.

Today I’m eternally grateful to be surrounded with support and love. That I am very fortunate to be able to be who I am. I’m reminded that sadly this isn’t true for everyone. That there are still people who are forced to deny who they are for many reasons, many in fear they will be abandoned. Or worse, be seriously hurt and killed over who they are.

I hope today encourages people to be true to who they are and know they are loved and they matter, That you are never truly alone. And, thank you to Mr. Kameny and everyone who ever did and does continue to fight for the rights of all LGBTQA individuals.

So today, once again I come out as Queer and Proud.

Plus, closets are for fabulousness, not hiding in.

A honest look look at depression.

Content Warning: Suicide 

With the recent sadness of Robin Williams suicide. There’s been a lot of talk of suicide/mental health. A lot of it unsavory, but a lot of what I’ve seen is starting real conversations about suicide and mental health. Which is such a overdue and needed conversation we need to have. 

But I thought I’d take this note to share my own struggles and feelings on the matter. 

The first time I contemplated suicide I was six/seven years old. I remember it quite clearly, I was standing on the balcony looking down. Thinking how easy it would be to just fall. I thought, like Rapunzel, if I didn’t have anyone to save me, it would be best to fall than to live a day longer. 

Thankfully, I didn’t do it. And things turned around later on. To be perfectly honest, I’ve dealt a lot with my feelings and life with sense of humor. This is a coping mechanism that works for me. But it often is the way I deflect from my own feelings. Sometimes, I’m really struggling and the thing that keeps me going is knowing I can somehow make someone else laugh. I desperately want to make sure no one else around me is feeling just as horribly. To do the very best I can do, to make sure they aren’t feeling as alone and scared as I am. It’s why I do my best to also let those around me know how valuable they are. To tell them good things, I don’t know if they are being told that. So I will make that effort to let them know. 

But throughout my own life, I’ve still struggled with suicidal thoughts. 

In fact, I’ve long had a suicide note I’ve worked on for years. I keep revising it. On some absurd morbid level, that note helps me through my very bad days. All that editing, reminds me how life keeps changing. The one constant is how much I have loved and how insanely grateful I am for those in my life. How the very last thing, I wish is to hurt them. But when it comes down to it, i hope they realize it is not their fault. And that my own demons were too big for me to battle. 

So far, I’ve managed it. But there are times, I have zero clue how. A lot of it was surviving from moment to moment. 

Dealing with my mind is a constant battle. It’s often a bigger battle than my chronic/physical illnesses. It’s fair to say, they both depend on each other heavily. If I’m not doing well mentally, chances are neither is my physical health. If my physical health isn’t doing great, neither is my mental health. All the things are connected. 

When I think about suicide, it’s not that I’m ungrateful for life. Quite the opposite, actually. It’s that I cannot think of why on earth I exist. I see my personal existence as a bad thing. That by just existing, I am wasting space/energy, I think about how someone is more deserving of life than me. I truly believe far too often than I would like to admit, that those around me would be better off without me in their lives. 

On some level, I know this is silly. But it’s hard to rationalize with a brain that doesn’t want to be rational or a chemical imbalance. I sometimes compare it to being on dialysis. I can’t just wish and rationalize my kidneys into working and not needing dialysis/transplant (given, I don’t have any native kidneys. But if you did!) You can’t just WISH or PRAY into things working. There’s some amount of effort involved. 

For me, that’s reminding myself almost daily I have a right to exist. That I am indeed important in this universe and that my existence matters. Sometimes, I really need those around me to remind me of this, when my brain is being a total jerk. And very fortunately, I have those people. Even with all that love, it’s really hard to see through all the awful things my depression is telling me. That voice can be louder than anyone else’s. 

It is a constant battle and upkeep to keep myself safe. If you think about it, I have spent the last 19 years of my life maintaining my safety. 

But let me say something here: Depression is like having your worst enemy constantly whispering nasty evil things to you. It makes you believe those things, believe that you are indeed worthless and no one actually cares about you. 

Now, compound that with the fact that we as a society shame those who have mental illness and depression. We tell them they are weak for not fighting back, that it’s our fault we don’t think positively enough! We tell them they are cowards. Do you realize how much we already tell ourselves that? At some point, a person hears something enough, we start believing it. Or we simply give into this idea that we are horrible awful people, that don’t deserve to be alive. That only those who truly understand how valuable life is, deserve it. 

So, it is no surprise to me why people who do commit suicide don’t always think of others. They already believe the things our brains tell us.  And really, there is nothing that anyone has said, that I haven’t said worse to my own self. 

 I would be lying if I said I still don’t think about suicide. Yes, I’m confident, happily married. My life is pretty great. And yet, I still can’t stop my mind from turning inward and dark. If I could prevent it, I would. And I’m still here. I’m still fighting. 

But I still struggle really hard to accept my body at times. It’s really hard to accept the pain my body inflicts. I’m the one who has to live within my body, no one else. No one else is feeling the pain I do, has to look at my body and feel so incredibly displaced from it. But again, I’m working on this. I realize it’s not very fun living with those feelings. So, I talk about them, I face them head on. I don’t allow more hatred enter my life than already seems to exist. (Why have more enemies when you do a fine job on your own!?) 

It’s not just that; It’s knowing one day I very well might have to make a hard choice about my life. That very well, one day my kidney may/will fail. (They aren’t forever. It is a treatment, not cure) and we are uncertain if dialysis will be an option. I hope dearly medicine advances. But I also want to die on my own terms when they time comes. 

Yes, I said that. After a lifetime spent in a hospital, I want to be able to choose how I exit this world. If the possibility presents itself, I wish it to be on my terms. For me, the most selfish thing is not allowing me the human decency to exist the way I wish. I’m not going to be the hypocrite that says which situation is okay and not okay. 

‘Til that times comes, I will fight like hell. I’m far too stubborn to just give up. I’m too curious to see what will happen next. Be it good or bad. I’m willing to face whatever life throws at me. I know, if I’m capable of surviving my own mind, I can survive a hell a lot more. 

But I want to finish this post this this: 

If you’re reading this. Realize you are important. Your existence matters, you matter. There is nothing anyone can say that makes this untrue. If you are struggling with suicidal thoughts, please reach out. I’m providing some helpful link below. 

Suicide Prevention Hotline


Why #YesToAllWomen matters to me, personally.

Trigger Warning: Domestic violence

I’ve been making sense of the whole #yesallwomen business. Mostly thinking about it to myself and discussions with my partners and friends. When I really think about the feeling I get, it’s enraged and perhaps a good amount of regret and guilt. Processing things is never an easy task.

I grew up in a home with a lot of domestic violence. Beating your wife or children was/is very common from my culture. It’s not seen as bad, it’s seen as behavior modification.

With brings me to this,

I remember very clearly the domestic abuse I witnessed my mother had to go through. Her ex-husband was quite abusive and I experienced my share of it. He once beat her so bad that she got a concussion, he beaten her into a closet. There was screaming, crying and begging. The whole thing is still pretty burnt into my mind. 

 I tried to defend her for a little while, but then I started to feel maybe she did deserve it. I was angry that we had to be part of it. I was angry that I was being hurt by this person myself. That she didn’t defend me, like a mother should. I felt this way for a long time. I blamed her for the domestic violence we all suffered at her exe’s hands. That she should have know better. 

But the sad thing is, we assume all people should “know better” in these situations, we don’t take into account how easy it is to fall into these situations. These abusers don’t come at you swinging, they usually are sweet and do all the right things to earn trust. Along with the all the hell my mother’s ex put us through, I can still remember him buying me penny candy. I remember him being nice to me. I remembered a time he treated my mother well. 

We do this thing, as a society towards women. We excuse their abuser’s behavior, that because said abuser says nice things, does nice things sometimes, that it’s our duty to accept the “not so great parts”. That as long as they are kept happy, they aren’t terrible people. Well, if this shitty person has to rely on others to keep them happy and not lose their shit like a toddler, they aren’t good people. Plain and simple.

And much like a small child who doesn’t know better; if you can’t use your words to express yourself properly, you get a time out.

I’m still angry at those who don’t notice or excuse it for whatever reason. Because the idea is “Yeah, that kinda shit happens, what are you gonna do about it?”

Be vocal, stop silencing, stop treating it like it’s okay. Stop treating it like it’s a “private matter” It’s that kind of shit that causes women to never seek help. By keeping this up, we keep accepting it. Being quiet and bystanders to abuse, we accept it. By inaction, we are automatically siding with abusers. 

Even worse, by not stopping this and changing our handling of violence towards women (or anyone) we are telling the next generation of women that it’s acceptable to be treated so. That your discomfort to change the status quo, is more important than making sure our daughters don’t have to go through this. That they should accept mediocrity. And there’s never a good reason to accept mediocrity. 

So, Yes to all women. Yes to all humans to not make violence acceptable. It’s not. 

If you or someone you know is being abused, here is some numbers for help. Please do not hesitate to call. Remember, it is never your fault. 
National Domestic Violence Hotline 
GLBTQ Domestic Violence Project
More information

What if we treated all illnesses for exactly how they are?

Many friends have shared this comic. It’s a comic called “What if we treated physical illnesses like we do mental illnesses” 

The assumption is that we treat physical illnesses more seriously than mental. 

And there’s truth in that, but there’s also some falsehood. 

As someone who has both physically and mental illness. I will say both hold their challenges and both are often dismissed. 

I can’t explain the amount of anger, hurt and suffering I’ve felt being dismissed. Be it for mental or physical issues. 

I’m about two years into having some neurological issues, that have yet to be figured out. I only now am seeing a doctor who has taken me seriously. It’s still impacting me. I constantly deal with my health issues, I take a lot of pills. Many of which are a active conscience effort for survival. Without my transplant meds, I lose my transplant. 

Without my mental health support, I climb into a dark hole that very much feels impossible to get out of. My mental health also has impact on my physical wellbeing. Some days, the effort to do all those things just to bring myself to the next day, all of the responsibilities make it a struggle to remember the why I’m doing all of it. If I cannot remember why, then the task becomes obsolete. 

People with chronic pain/chronic illness are often easily dismissed. We’re told things like “Oh, I’m ache-y too. I wasn’t feeling well either!” by others who don’t quite “get it”. We’re outright dismissed. Told if we are only more “be positive!” that we could overcome anything. That the only disability in life is a “bad attitude”. We’re concern trolled, everything from our diets to work ethic is brought up to public scrutiny, questioned. As if eating more kale is going to make my leg magically work. Sorry, but no amount of positive thinking is going to make a staircase accessible. No amount of echinacea is going to magically grow my own kidneys. 

Unfortunately, it’s hard to understand both side, unless you’ve lived it. I’ve often discovered that  unless someone has personally experienced chronic illness or mental illness, they don’t get it. 

Both are pretty much the shit end of the stick. Both are illnesses that impact your daily life. 

Because, some days I can’t get out of bed, because my body simply is out of energy, it hurts down to it’s core. Sometimes, it’s because I feel so utterly worthless and life just seems very very dark. 

Asking someone to “choose” one of those, is a strange concept. But it’s something we do. 

But the way the comic implied that physical illness is taken more seriously, really bugs me. Because it’s simply not true. It may appear so, but it’s not so. It also slightly ignores that there’s a lot of same symptoms. Those who are depressed or are dealing with a mental health issue, often have physical illness too. There’s a lot of cross over we ignore, we ignore it because ableism tells us one can be overcome and another can’t. One is “better” than the other. Illness is no better or worse. It’s not a competition. Disability and illness are shitty, each of us are going to have to deal with us, to the best of our own ability. The game of “Who has it worse/who’s worse off” helps no one, what if we just accepted illnesses, as illnesses. Strive to understand them rather than dismiss? 

The world would be a much better place.


In any case, the comic left a bitter taste in my mouth. I hope this post makes people think a bit.  Perhaps, even acknowledge how both are so equally shitty, how both are pushing ableist misconceptions of how illness is. 


The Spoon Theory in action.

I cannot judge anyone’s ability level. I’ve experienced how invisible illness, including mental health is treated. I’m not willing to do that to anyone else. 

I first heard the spoon theory when I was 14 and a nurse was explaining to me, that I cannot do it all. I had just crashed on dialysis hardcore, I was having a panic attack because I had a physics exam coming up, still had homework left and was trying to keep up with the intense class I was in. Meanwhile, doing dialysis three times a week. 

I have my entire life pushed and pushed. I refuse to accept that I am unable to do something because of my situation. This in many ways has helped me, I have done a lot. Coming from where I am, that is a lot. 

It is a double edged sword, a catch 22. I push so hard, I get myself in trouble. Doctor says walk 20 steps, I walk 30. Partner wants to help me with something, I want to prove that I can do it myself. Even when I cannot. Which leads to more issue later on. It took me age and getting sicker to realize I am one human being,  I cannot do it all. As much as I will try, I cannot. That’s a hard pill to swallow and believe me, I’ve swallowed many. 

The Spoon Theory is based on a chronic illness, Majority of which are invisible. Which includes mental health as well. It’s not a synonymous with “I’m tired, because I’ve had a long day.” 

The thing with “invisible illness” It’s not really “invisible” they are hidden. 

You are often seeing what the person allows. Be it saying “I’m okay/fine”, not using the aides they otherwise would. Or in general, doing the best to appear as “normal” as one can. 

This year brought on more illness for me. It’s brought me to my breaking point. It’s made me question once again, my own existence. When I’m home alone and every bone hurts, when I can’t remember even the most basic things, when as much as I want to be doing things for those around me, I cannot. Hell, I can’t even gather the strength some days to take a shower. It’s dehumanizing. 

I use “dehumanizing” often when talking about illness. History and experience has proved, the disabled are often treated in a dehumanizing manner. Sometimes, that’s not on purpose. In order to figure out what is going on, we have to be stuck and prodded. But it’s not something people think about. 

Illness takes things away from you. To me, I forget I’m human. I feel anything but. Like some thing that just is going on. Even my very basic survival is thanks to toxic medications that keep my organs going. It’s those toxic medications that literally keep me alive. 

When I hear people mock or groan about “the spoon theory” it hurts. It lets me know, the person didn’t actually absorb anything that the theory itself talked about. It’s a reminder that we don’t give a shit about the humans around us. 

Personally, It reminds me of how pathetic I must seem when I need to excuse myself from things. How pathetic my life must be, because I can’t do basic person things. The things we attach so much worth to. That all anyone will see is a “excuse”. No matter how hard I try, how much I push. Unless I’m at your level, I’m just making excuses. And just not as worthy. We support this by our actions towards social, economical and political aspects of disability. Or anyone who is not living up to the idea of what we think it is to be successful, a worthy good person. 

I’m never going to tell someone how to use the spoon theory. Because that’s not my job, nor is it appropriate for me to do so. I cannot gauge another person’s abilities or how they deal with things. I’ve experienced what it feels when we judge before knowing anything about the other person. I prefer to err on the side of caution. To be kind to people, and acknowledge they must have their own battles, and I don’t know about it. But I will sure respect them for doing whatever they must do to keep going. 

Because fact is; you are here,  I am here. And we are doing our fucking best at this moment right now. We are surviving and preserving, even if it’s the hardest thing to be doing. 

Who are you to police behavior?

I’ve recently been dealing with body issues. Specifically, severe body dysmorphic issues that tends to come along with my pre-existing condition. I’ve been dealing with emotions that have reared their ugly head, after over a decade.  I feel like I’m back in the same headspace I thought I’ve already conquered a long time ago.

Unfortunately, our own demons often come to haunt us. Ten years go, I worried that no one would love me. That I was too abnormal/weird/odd/ugly to be loved. I was dealing with health issues most teenagers weren’t dealing with, so that didn’t help in that whole “adolescent journey”. But now I’m married to someone who I adore. I even have more than one partner!   

The thing that really grabbed recently was that ten years ago I struggled with the idea of “would anyone ever love me?” but now it’s “Will I ever accept and love myself completely?” 

I can say with decent amount of confidence, I do love myself. I struggle far less to accept and love myself than I previously did. I still have bad days, who doesn’t. But I accept that a lot what I struggle dealing with conflicting messages of what we’re supposed be. Be it in the heteronormative sense or what even makes us queer “enough” and everything else under the sun we spend far too many hours worried about.  We have a million messages coming from all sides of society regardless of how mainstream or not. So, it takes actual a conscience effort for us to say “Fuck it” and truly be who we are meant in this world. I have made those steps, and they indeed make a difference. I notice when I stop worrying how I’m perceived or whether I’m doing it “right” I’m a happier person. I’m also a generally better person. 

With all this said. I recently had a crap experience in the hospital. Some dude decided while I’m clearly tired and trying to figure out where I should be for my appointment at the hospital, that this was an ideal time to hit on me. He kept commenting on my beauty, and then decided to go further by commenting on my ass. Sweet, right?

I’m sure some feel that you should just appreciate the “compliment” and maybe he was just trying to be nice! And hey, maybe he was. But, I can assure you that hospital waiting rooms are not the right place to hit on women. There was no consideration that I might be dealing with serious illness, that I’m nervous, and that I clearly was not interested, like having headphones in and texting. It was just a shitty situation,  when I go to the hospital I’m dealing with life and that means I’m not interested in romantic connections. I can safely say many people there are in the same position.

When I mentioned this on my Facebook someone decided to ask “Who are you to police behavior?”

I felt enraged.  First, most people will tell you that a hospital waiting room is a ill chosen place to pick anyone up. It’s common sense/decency. But really, who am I to police behavior?

I’m Me. I’m not the police of my body, I’m the fucking dictator. It’s mine, and when you make the choice to open dialogue about it, I’m going to respond and you may not like it. Because I refuse to be nice about it, to accept those uncomfortable situations. If you make me uncomfortable, I’m not going to be quiet about it, I’m not going to accept it. I will actively make you as uncomfortable as you’ve made me.  I’ve been around long enough, to know in these situations, that the expectation for me is to avoid conflict and to just ignore it. That If I hide enough, if I don’t speak up, they/the situation will go away.

But it doesn’t. These things don’t go away. They go away when we get up and speak up. They go away when there is consequence to those actions.

If you come at me with respect, I will respond likewise.

Because say yes, you wish to engage me. There’s ways to do so that are respectful and will give us both a better experience. But if you engage me with shitty desperate half-assed compliments or worse, “Negging” why should the result be positive?

Take this OkCupid dude’s comment. “You’re very pretty, but I don’t like women with tattoos and short hair.”

So, should I be complimented by this? Should I excuse myself, and apologize because I’m not his type? Ignore it? I could ignore it. But, if he didn’t want a response from me, he would have just moved on. So, I got sassy, like I do. He didn’t like that. So, now the fool thinks I’m a “fat bitch”.

Cool story, bro. Tell me something I don’t know.

Yes, I’m fat. I also have fingernails. Am I fingernails now? (Hey, I also have skin. I guess I’m skinny? The miracle of human bodies, y’all!) 

And if asserting myself is equivalent to a female dog, so be it. I much rather be a bitch than stay quite. Be aware, I don’t just bark, I bite too. 

And this comes to my bigger issue. Why do we feel the need to comment on other’s bodies? Of any gender, why do we feel the need to point out something “negative” about another person’s body? This is something we all do. But if we really think about the why of it, it seriously comes down to insecurity and false sense of being superior. When we put down another person we are doing it because there’s something in our own lives we are unhappy about. That if we can point out the flaws in someone else, it’s easier to feel better about our own lives. It’s much easier to put others down, to talk of other’s faults, than it is to face your own or put in the hard effort into yourself. 

It just seems silly and unnecessary to put anyone down for their body. It’s not your body, you don’t need to live in it. 

Which brings me to the whole “being decent human being” subject. I wonder how many of us insult a body and ever think about the consequences of that. Do we ever consider how someone feels in their body, do we realize that we are insulting the very thing that keeps them here. Whatever body we have, it’s our vessel. It’s not like we have any other choice of bodies. When I reflect on my own body issues, the overwhelming hatred I’ve had towards me body is unbelievable. It becomes to insidious, I start hating my existence. Because, this ugly thing, I’m stuck in it. So my choices become, escape this thing any way I can. Which ends up being self destructive. Or, I accept it. The latter has worked out better for the longterm. The work that goes into acceptance is no small feat, it’s a lot easier to deflect, insult other’s than accept yourself and put in that hard work.

After all that hard work, I personally felt I don’t have time or energy to focus on other’s bodies. I’m too busy living in mine, appreciating mine. 

There’s a Russian saying, about looking into your own plate. To not focus on someone else’s. Because while you’re staring at someone else’s plate, your food is going to get cold/stolen.

The same applies. While you’re focused on someone else and their business, your own life is going to pass you by. And that’s a tragic way to spend life.