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.

Zech Whitby

“I love you, know that…..You have the world ahead of you, and it will be great”~Zech Whitby

On September 6th, 2018 the world lost a good man. Our friends at Bitter Hearts Tattoo lost a part of themselves.

My roommate and I have found a sort-of home at Bitter Hearts, and we care about the people there. Last Thursday, while sitting in class, I received a text from him. It was a screenshot of a post that Zech made on Facebook the night before:

https://www.facebook.com/plugins/post.php?href=https%3A%2F%2Fwww.facebook.com%2Fzech.whitby%2Fposts%2F1817868241667377&width=500

What happened with my roommate and I next doesn’t matter. What matters is what Zech wrote. Please read it all. Then read it again. Then show it to everyone you know, because that’s what Zech would’ve wanted.

I don’t have much to say, because there are no words for the pain that not just I feel but that our friends at Bitter Hearts feel. No words for what I see in their exhausted faces after a week of his absence.

What I do have to say is this: There ARE people out there who will listen. People who want to help. People who don’t ever want another person to end their own life.

How do I know?

That Saturday, the 8th, we attended a gathering at the shop of everyone who’s ever cared about Zech who was able to be there that day. Most got tree tattoos (his specialty) in memory of him. Over 130 of us got tattoos and are now connected by our love for Zech. Some drove hours, or flew in from other states; some came to help give tattoos. Within the first 30 minutes, they had around 40 people signed up. The cost of the tattoos plus any donations were given to Zech’s family to help pay for funeral costs. The turn out was overwhelming. What was most overwhelming was how much we’d all wished he had just asked for us all to come. How much his friends and family wished he could’ve seen the crowd, the tears, the family of people come to pay respects and share their memories, and their love.

Every one of those people would gladly give their time to listen to someone who needed it. To help someone who was giving up, whether they knew them or not.

If you or someone you know is struggling with suicidal thoughts please call the suicide hotline: 1-800-273-8255 and the text line is: 741741 (text “TALK” )… The national suicide prevention website also has a computer chat feature.

“I’m sorry I wasn’t there.”-Zech

If you would like to see Zech’s art, please check out his Facebook page, personal instagram, and his Dead Trees Art Insta.

If you would like to see Bitter Hearts collective work as well as posts for Zech, please check out their Instagram page.

Missing Work, Loyalty, and Determination

These past two weeks have been stressful, to say the least. My overall sense of calm, loyalty, judgement, and resilience were tested in ways I did not see coming.

First, I had a minor health complication that normally would have been a quick fix in the form of an outpatient procedure with minimal fuss. Unfortunately, my health insurance does not cover my doctors whom have been familiar with my personal history (even though the company said it would). This meant I could either tackle the problem with rest and an old medication which I was not fond of, or go to a doctor who doesn’t know me and certainly wouldn’t understand how my current problem tied in with my complex history. I chose to rest.

The American Medical System, everyone…..the one place you’ll find people choosing not to see a doctor to avoid bills for visits and procedures which may make them worse or that would not be helpful even though the prices make you think they would be the best in the world. (If you’re looking for a good YouTube channel about healthcare and insurance check out Healthcare Triage)

I had to take time off of work to heal, which isn’t ideal considering I can’t exactly afford that. Now, my much needed student loan refund is probably going to go towards supplementing that lost income.

On top of that, I took more time off to help a friend with their own personal health crisis. Which is where my patience was tested. My friend was not the problem. I will not get into details, for their privacy and general courtesy for all involved. I don’t see the point in publicly shaming someone in this particular situation.

Details aside, I learned things about myself and have found I’m quite proud of those discoveries. I found that I’m willing to stand up for a friend and protect their freedom to choose, and their basic autonomy. I found that I could withstand mental intimidation and childish retaliation and respond with maturity and a sense of calm and rationality. That’s not to say I didn’t feel anger, because I was beyond angry, but I didn’t act on it and I am glad I did not.

I was deeply invested in maintaining my friend’s freedom and autonomy, probably because it’s something many of us in the chronic illness community lose for many reasons. Sometimes, it can’t be helped. But when another person over-steps their bounds and threatens, needlessly, someone else’s freedoms that makes me extremely upset. I believe that people are healthiest when they’re given the chance to be responsible for their own lives, decisions, and bodies. I’ve seen people thrive once they had full control over these things.

Additionally, no one can grow or learn if they only take other people’s advice or orders; if you did not make the decision yourself there is always the question of “would it have turned out better if I’d done it my way?”. People typically learn better when they experience consequences for themselves, instead of listening to the consequences another experienced. This isn’t to say that we should all go and do things someone else has found to hold undesirable consequences; advice should be listened to and other people’s viewpoints taken into consideration. But don’t forget to form your own opinions. Trust your gut, your heart, and your mind, while also listening to the opinions of multiple people and sources to form your own opinions.

Whether it’s your healthcare, or your personal life, or your career or education, your decisions are your own and no one can (and no one should) take that away from you. The very few exceptions are if you are directly harming another person, or yourself, or if your own mental illness has made reality very…. cloudy. But even in these circumstances, there are people who have the training and the knowledge to assist and whom we give this authority to, and there are people who do not.

I know a lot of this depends on the situation and which person is trying to take away the free choice of another. In my own situation I asked for advice from multiple people and I stood by what I strongly felt was right. I will never regret that.

I’m back to work now and excited to start the new school year soon. I hope I’ll be able to bring you all more content and that we all have a low stress week. Thanks for reading!

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.