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.

Time, Energy, and Changing Plans

Sometimes I forget that I have chronic illnesses. I’m incredibly lucky to be able to say that, but it can become a problem.

When I’ve put in the work, and planning, and gotten a good day (or few days if I’m lucky) with no health problems…. eating what I want without enzymes, doing what I want and not feeling tired, no dizziness or extreme fatigue, no stomach pains, no muscle or joint pain, no episodes of extreme hypersensitivity…. I forget. Being sick is my normal, so when it doesn’t happen my brain gets excited and forgets so that I can plan all of the wonderful things I want to do.

So I call/text friends and family and make plans. I offer to work extra days at my job; which is a highly physical job and fast paced so it takes a lot out of me while also keeping me healthy. I basically over-book myself. That’s what happened this past week.

Getting my YouTube channel started, making plans with friends, cleaning the apartment completely, all while it was a difficult week at work because the steam in the building was shut down and I work running a giant industrial washer sanitizing supplies like carts etc… proved to be too much.

The steam shut down took all of my extra spoons because I was working in freezing conditions and constantly covered in water or at least had soaked socks and shoes. Along with that, I misjudged the time needed to do some things and lost sleep.

Postponing and then, for another reason, having to reschedule plans with a friend was one consequence. I got lucky and another friend postponed plans which gave me time to rest. Even so, by the time I got to Saturday, a day to visit museums in Cleveland with my dad, I was feeling the week. It was a great day, I saw a lot, but not as much as I wanted. I had to head home early because my body was just done.

Luckily I have an understanding father who didn’t mind making plans to come back another time.

Something a lot of people respond to Spoonies postponing, canceling, or cutting short plans with is anger, or disappointment, or even questioning whether we really want to be there. It’s frustrating and can really make a person want to never make plans with anyone again just to avoid it.

The solution I’ve come up with is to just not give a damn. If I have to do something for my health, and I’ve been honest and upfront with my friend, family member, or boss about my inability to be there, then I have done what I can. There’s no sense in beating myself up when I’ve done nothing wrong.

As Spoonies it’s our job to advocate for ourselves because many times no one else will. It’s difficult, of course, because advocating takes energy. Sometimes the spoons to explain in detail that you don’t dislike a person, you’re just genuinely exhausted, just aren’t there. But here’s the cool thing: it’s a great way to find out who’s worth having in your life and who isn’t.

If someone doesn’t understand your needs, or isn’t compassionate towards you, then maybe they’re not someone who needs to be in your life. If you can’t cut them out for whatever reason then remember that you haven’t done anything wrong. Don’t apologize for doing what you need to be healthy. Apologize for any inconvenience, apologize for changing their plans or schedule, but don’t apologize or feel bad for making healthy choices.

We cannot expect, in a world full of people with no health problems, especially in a country that has a culture of “fix the symptom, take pills, postpone the bad feelings” instead of promoting true overall heath with lifestyle changes, that everyone is going to understand that you’re not jerking them around. That you genuinely need time off to sleep, even if it feels like all you do is sleep or sit.

No one can tell you what you need. You’re the only one living in your body and the only one who’s stuck with it for your whole life. You’re the only one who gets to make decisions about it.

Side note: If you are in a situation where you feel like someone has taken away your choices about your own body, please seek help. Hospitals are equipped with staff who are trained to handle that kind of thing. When they ask if you feel safe in the home or even if they don’t ask, in America it is a patient’s right to request a private meeting, without a family member present and that is a good time to say something. Police also can help and have access to other longterm resources.

Camels, Dolphins, and Exhaustion

It’s taken me a while to write a new post, but I had a lot going on as well as some problems with my illnesses. Here’s the update:

I missed a week of school, before the official week of spring break, to go to Los Cabos San Lucas for spring break. I went to a resort with my family and just spent the time relaxing. This trip was significant because it was a vacation I’d been waiting to go on since 2015, when I got too sick to go and had to let my parents go without me.

I was pretty nervous about going, first for the plane ride, and second for being out of the country. The plane trip made me nervous because I would be confined to a small space and if my symptoms flared there would be no way to help me until we landed. The next concern was that I would have a serious problem while in Mexico, which wouldn’t be too bad given we’d have the funds for adequate medical care…. except…. my condition isn’t directly known. It doesn’t have a true diagnosis and lands in the grey area of cardiovascular no-man’s-land. This makes it difficult to treat without a language barrier, let alone when I have no official term to describe what’s wrong with me.

Well, I put my worries away and went on the trip. It was amazing! I rode a camel, which we were shown are given free, non-fenced, room to roam, and learned about survival methods in the desert. I was shocked I was able to stand the heat, and found out there’s something to be said for clothing designed for a sunny climate. My dad let me borrow a big, UV reflective button down that kept me from overheating or getting sun poisoning. I learned about desert plants and ate a wonderful meal, where our guide Augusto taught us all about making tortillas the traditional way and gave us four kinds of tequila to try (I was having some health problems so drinking wasn’t as feasible for me).

I also got to ride, dance with, and kiss a dolphin, which was an incredible experience not available in the US. Those are memories I’ll never forget.

The trip did have some downsides: I was feeling ill and exhausted for a good portion if it. My stomach and heart giving me problems. I had to worry about things that most vacationers don’t have to think about quite so intensely: am I drinking enough water? Did I reapply sunblock on time? Do I have the energy to be out or should I go to bed? Is this food going to cause my conditions to flare? Is my exhaustion from traveling, or did I get a virus or is something else wrong? All of these concerns had a basis in whether I was going to push my heart or GI system to the edge and need medical care, or at the very least ruin a nice vacation moment for my family by needing to cut it short.

Luckily, I made it back to the states with only some mild discomfort and went back to work (sort of…). I have been experiencing a level of exhaustion I haven’t experienced in quite some time. My school work is stressful and to add to it I’m so exhausted I usually sleep instead of completing it. Or, I wake up and have housework to finish which makes me too tired to study. Needless to say, chronic illness is a vicious cycle. As any Spoonie will tell you, borrowing spoons is tricky work. My spoon borrowing is beyond out of control and it’s going to take a lot of work to get it in check.

Vacations for Spoonies are sometimes more tiring and stressful than relaxing. But I don’t regret my experience and am really glad I was able to go. In my life lately I’ve been trying to push myself more, which, I’ll admit has the effect of making my stress a lot higher and may not be the wisest decision. Life isn’t always easy to figure out. What seems to make perfect sense to one person is incredibly opaque to another. When you add emotions, surprises, and the responses and actions of others, life becomes a seriously frustrating puzzle and borrowing spoons to handle it is even more frustrating.

My puzzle right now is a very tiring one, and I may take longer to post updates. I’ll be doing my best though, and I hope you all enjoy reading about my sometimes wild, sometimes boring and repetitive life.