Walking Away

I saw a post on Facebook highlighting the importance of knowing that “it’s okay to leave”. I don’t know the OP but if you’ve seen it and know who it is please comment or email lockstockandspoonies@gmail.com so that I can cite them.

The post talked all about it being okay to leave uncomfortable situations. It’s okay to leave abusive or toxic relationships. It’s okay to leave a school or job that isn’t working out and is making you miserable. It’s okay to leave family dinners, friend gatherings, competitions, dates etc… if that thing is making you so uncomfortable or miserable it causes you to fear for your safety or causes damage to your mental or physical health. Hell… it’s okay to leave because you want to. It’s okay.

What I did want to talk about is what that means to me personally, and maybe you feel the same way or maybe you don’t. I want to hear other’s opinions:

My close friends and family know me as a “100% gamer”. I want to beat every level, side quest, and storyline. I want every prize. I want every costume change and trophy. They also know I rarely actually do that. Partly because I have limited time and am not always good enough. Partly because I’ve learned to walk away from things that expend more of my energy than they’re worth.

I’ve spent days on games that I no longer enjoyed, just to complete a goal. I’ve “gone down the rabbit hole” hundreds of times – failing to eat, drink, sleep, or take breaks. I’ve gotten so frustrated at a game that it’s eaten at me for days.

It took years for little (okay… younger little) me to learn that it was okay to go to bed at 1 AM, instead of 5 AM without a particular achievement earned in a game. It took countless uncomfortable meetings and miserable days before I learned it was okay to switch the direction my life was going in to a completely new one – to change my college major, decide to leave research, to start working at a job I love instead of one everyone approves of.

So far, I’ve never regretted leaving a situation when I wanted or needed to, but there are countless moments I regret enduring instead of doing what was best for me.

That said, I also believe in putting 100% in. I don’t leave something just because it’s a challenge, or I had one moment where I messed up, or because of one person whom I will rarely interact with. There’s this line in the sand that marks the territory between quitting, and wisely abandoning hopeless causes/physically or mentally harmful people and situations.

My goal is to figure out what my own personal line is, without judging someone else’s.

I may not have a problem with someone telling me that what I just did was stupid, but another person might be deeply affected by it and that would be their line. Everyone is different, have their own past experiences, and their own traumas. It’s a very personal decision to walk away from anything, and while others can give their advice and support, ultimately it’s the individual’s choice.

To me, the important thing is: your life is your own, and no one should ever have to put up with things in their life they’re not comfortable with.

Friendships and Understanding

As I get older I realize more and more that there are big differences between the friends I had when I was younger and the friends I have now. These aren’t bad things, just things. I’m also aware that everyone realizes this at some point and it’s probably pretty well known to anyone who has kept some childhood friends in their lives. The difference is this: I don’t usually have to explain my actions or feelings to childhood friends.

These are friends who watched me grow. They watched the events in my life change me and create my perspectives. They know which things broke my heart. They know which things brought me joy. Some childhood friends know me, probably, better than I know myself. They know which weaknesses I have that continue to kick me in the ass and they don’t make me feel horrible about them.

When I first got sick, I didn’t know what was going to happen. Was I going to get better? Would I get worse? Would I get worse to a point where no one could help and it would kill me? The uncertainty and the mystery of what I had (along with the fact that my doctor was ignoring some pretty obvious clues) meant I reached out to those friends. I called and texted and facebooked, and met with people I hadn’t seen in a while.

My childhood friends are the ones who flew out of the woodwork to help, in whatever way they could. They helped in ways they knew I could handle; hypersensitivity means I can only handle so much excitement or attention at one time before I burn out. They’ve seen me during some of the worst and best times of my life. They also know the majority of my inside jokes.

This isn’t news to anyone. That’s what friends do. My non-childhood friends are great too, but they see me from the perspective of my explanations of my childhood. They weren’t there to see the things about myself that I didn’t see. They don’t know all the different ways I’ve expressed myself over the years or how I’ve changed.

Thinking about all of this, I think about other Spoonies as well. In my case, I don’t have many close childhood friends left. There are that wonderful few who have hung on through all my mood swings and withdrawals from general socializing. I’m lucky. Many Spoonies have spent so much of their lives in hospital that they never had an opportunity to make those friends, or those friends have left because let’s face it, being friends with and supporting a Spoonie can be difficult.

This is something every Spoonie is acutely aware of. We know we can be burdens. We know it gets tiring dealing with an exhausted, sometimes depressed person. Depending on the illness, a friend’s job can be difficult. Here’s the thing though: If you are not a fan of my life imagine how I feel.

I follow quite a few Spoonies on social media as well as having some as friends in my “real life” (the internet is real life, if your only friends are online they’re still real). I have seen multiple rants about how hard it is to listen to “you’re so depressing all the time”, “why can you just handle it?”, ” I know your life is hard, and you’re hurting, but I can’t deal with this right now.”

These most likely well intentioned, tired friends/family members probably don’t mean to hurt us. They probably just want to be honest about how they’re feeling. This is fair. This is normal. As a friend I owe it in return to also be understanding of their situation.

Recently in my life people have been very understanding. They’ve been patient. They’ve given me the time, love, and consideration I need to deal with my illness while in school and working. This blog is coming from my want to express the frustration of others as well as “past me”.

We are people. We are exhausted. We are not exaggerating our symptoms. Life for many Spoonies can be complete and utter torture. In fact, a sentiment I hear often which might be shocking to many non-Spoonies, is “I’m only suffering through because it would break my friends and family’s hearts if I died.”

If you’re part of a Spoonies support system, you’re probably very important to them. They’re most likely trying so hard because you’re in their life. If you’re a Spoonie, it might be hard to hear frank statements from your friends and family but they deserve our understanding too.

Our world lately seems like there’s so much arguing and us vs. thems that it can be overwhelming, to say the least. If we stick together, even in small ways, if we have more understanding for the people around us the way we want to be understood… maybe we’ll have more friendships like childhood friendships and less lonely people. A small moment of understanding towards anyone, Spoonie or not, can go a long way. ⏺️

Note: This blog isn’t my best. It was a bit all over the place. I’m having a Spoonie day with low spoons.

Humanity, Not Machinery.

As a college student, I’m faced, every day, with the pressure to be perfect. I’ve talked about this before. As a person with chronic illness, I am simultaneously told by society (particularly American society) that I need to be the same as someone without an illness to overcome, and by medical personnel and other Spoonies that I need to rest and realize that I am human.

Being human, however, isn’t desired. Our society wants machines: be perfect, feel only what we say to feel, push forward.

Maybe that’s what our country lacks. We’re expecting machine-like qualities from humans. Machines are cold, unfeeling, and can easily be used to harm. If you hit someone with a car, the car doesn’t feel bad, the human does. If you fail to follow safety regulations and someone is hurt by a machine, the machine feels nothing, the human feels regret and guilt. If you shoot someone with a gun, the gun doesn’t know the difference, but the human shooting it knows they’re hurting someone else.

We are not machines. We are humans. When you try to block out humanity for perfection you lose the entire beauty of humanity. It’s beautiful because it’s imperfect. It’s beautiful because in spite of its imperfections it creates art, helps others, solves mathematical theorems….. humanity is not perfect. Humanity is messy.

Humanity is feeling a million conflicting things at once. Humanity is feeling apathy towards one person and loving another. Humanity is working painstakingly on a project, only to destroy it later. Humanity is crying over rejection while simultaneously checking out someone attractive. Humanity is doing your best and still failing. Humanity is getting a degree and then getting a job in a different field. Humanity is both hating and loving someone at the same time. Humanity is wanting to be alone but also not wanting to be. Humanity is wanting to sleep but not being able to. Humanity is uncertain. Humanity is calmness. Humanity is anger. Humanity is sheer panic. Humanity is knowing everything will work out just fine. Humanity is the acceptance of imperfection and the acceptance of our individuality.

What happens if you tell a young man, that his humanity is flawed? If you tell him every day that his feelings (except anger, you know… for sports) make him weak. If you tell him that he’s not allowed to fail in any way, that he has to have friends, enjoy only certain things, get all the girls, dislike only certain things, be anything other than human. What happens when that same boy is so privileged in our society that he usually gets what he wants either through his own privilege or his parent’s? What happens when that same boy comes across a moment in his life where his imperfections show through and he starts to feel something other than anger, like hurt?

Well, he fixes it the way he’s been told to. He stops, and erases his humanity. He kills the thing that causes him to feel empathy, towards himself and towards others. He kills his heart. He kills himself internally. Then he steps forward, weapon in hand, to show the world how well he did at killing his own humanity…

… by killing every classmate and teacher he can. By killing every theater-goer. By killing every cheering concert fan. By killing someone’s baby, someone’s best friend, someone’s uncle, brother, sister, mother, surgeon, teacher, crossing guard… by killing someone’s everything.

We have completely failed young kids, if we enact gun laws but fail to fix the systemic problem as well. Humanity is knowing there’s a short term solution and a long term (this also goes for systemic racial oppression). We cannot change the systemic destruction of an individual’s humanity in one night. But, we can put protections in place to make it harder for a young man, who has everything to prove and nothing to lose, to get ahold of a gun. Then, we can focus on the aspect that includes mental illness.

As Spoonies, we know well what it’s like to face the realities of humanity. Many of us also know what it’s like to face those realities with mental illness. However, mental illness is never an excuse to kill. The men who have stood up and decided that their pride, their pain, their lives, were more important than the lives of others, deserve to be punished for it. But as a society we also need to stop this idiotic bickering over which problem is really to blame.

Humanity is full of multiple problems acting in tandem. It’s looking at a situation like this and realizing it’s a gun problem AND a mental health problem. It’s a problem at home AND a problem with society as a whole. It’s a problem with failure to report AND with failure to realize that reporting isn’t as simple as the president makes it sound.

Humanity works in shades of greys. It rarely looks clean cut. It’s messy and difficult and filled with regret and pain but also of beauty. It’s filled with bitter arguments with cruel words, and then tears of remorse and embraces of forgiveness. It’s filled with acceptance of other’s imperfections even if they don’t accept your own. It’s filled with groaning because you have to wake up for work/school, while also marveling at the beauty of your sleeping child, the sunrise, your cute pet, or significant other. It’s waking up realizing, and possibly feeling disgust at, the fact that your loved one has shit the bed because of their illness, but lovingly helping them anyway. It’s long nights in hospital rooms, with occasional small moments of joy at a new visitor or a small amount of precious time gained. It’s dying a little inside every day watching a patient suffer, while you step forward to make their lives a bit easier instead of running away from that pain. It’s seeing the anxiety in the eyes of your students, and postponing an exam, or letting class out early. It’s taking the bad with the good and doing your best.

Humanity is all we have. Humanity gives us compassion. It gives us love, which can both create the highest euphoria and the greatest pain. If we could stop, for one moment and embrace humanity instead of trying to shut it out….maybe our world wouldn’t be so cold. It would still have pain, there’s no erasing that. But, it would be less cold and grey metal, and more warmth and color. It would be beautiful and exciting instead of dismal and soul crushing. Accepting our humanity lets us accept our failures with the ability to stand up and try again instead of giving up with “I’m no good at this”.

I know that my efforts to embrace my humanity will never be perfect. That’s the point. I will do my best to face the pain in my world. I will do my best to look at other’s pain and show them I care instead of turning away because it makes me uncomfortable. I will do my best to always have empathy. I will do my best. That’s all we can do.

Embrace humanity and stop expecting perfection from imperfect humans. We are not machines.