marycapaldi
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Two Quiet Years
🕑 Added 2023-03-21 20:02:23 +0000 UTCI've been debating with myself for months about whether to write this post. I don't have to, I know. I don't owe the internet my life story. But I've thought about it enough to know that I want to talk about what's been going on - why I've been quieter in recent times, not made as many new original pieces or designs as I once did, not able to complete as many commissions as quickly as I once did. We've all been dealing with the many immediate and lingering effects of the pandemic, and that has played into what's changed, of course. But that's not really the whole picture for me. Thank you for bearing with me and being present for what I've endured. I hope that laying all this out will help me continue to pave a road back to where I want to be.
The whole story kind of starts back in 2018 when I was having a lot of mysterious and disruptive digestive problems. My appetite disappeared, I was in a lot of pain every day, and I was constantly exhausted. It took many, many months and a lot of fighting with my primary doctor at the time to finally see a specialist who was able to recognize what was wrong and correct it with a difficult and extensive treatment. I don't really want to name the issue specifically to avoid people commenting with remedy suggestions and other speculation, so please forgive my vagueness about it. At the time, my coffee habit was blamed as a contributor and I spoke a little about what I was going through as related to that. This digestive issue can and does come back in some people, and I had to seek treatment for it again after moving to Canada. Finding a doctor here willing to actually listen to me proved an enormous challenge, and it took many months of fighting and waiting again to see someone who agreed to treat me but was still doubtful of my previous diagnosis, suggesting instead I probably just had IBS and would have to learn to live with it. The treatment did help, and I was back to normal for about a year. This brings us to the beginning of 2021.
Pretty early in 2021, I started having symptoms again, and I called the gastroenterologist I had last seen here to arrange a phone appointment (in-office appointments were rarely granted at that point in the pandemic). When I was finally able to speak to him, he was ultimately dismissive and only offered me an antispasmodic that had nothing to do with what I was experiencing. I tried it anyway to rule it out, and nothing changed. He refused to speak to me again any earlier than a follow-up scheduled in November. I started talking to my family doctor about other options, like trying to see another specialist or what she could do for me herself, but got essentially nowhere through the summer and autumn. My diet was reduced to a small number of foods that didn't set off my symptoms too badly, but even with that, I had no appetite most days, had to force myself to eat, was in pain within a few hours of eating, and was completely exhausted most of the time. I was not digesting anything properly, without getting into too much detail. Any time in the day I could be reasonably functional was divided between getting what work done I still could and looking for any other ideas or resources that might help me get better or at least get some sort of social support until that was possible. I kept coming up empty.
At the worst point of my suffering, I had stretches where I slept for 16 hours a day, woke up still exhausted to eat something, and after eating was so completely drained by my body trying to digest that I had to lie back down. I had a week where I lost seven pounds. I was partly surviving on Boost drinks. A blood test my family doctor ordered showed my iron was startlingly low. The gastroenterologist had at least suggested I get tested for any reproductive involvement by a gynecologist, but when I finally got in to see one, she refused anything other than hormonal birth control, saying the waiting list was so long it was not worth it to put me on it at all. I developed a vitamin regimen to try to help make up for nutrients I was clearly not getting normally. I did as much work as I still could to try to keep some of the stress of all this off my spouse. Some of you might remember I designed, launched, funded, and fulfilled the Celestial Insects 2 Kickstarter in 2021. I made that happen despite all of this occurring behind the scenes. I don't actually know how, looking back.
It took almost the whole year for me to speak to another gastroenterologist, who sent me for my first colonoscopy at 32 to rule out IBD. Everything came back normal, with no answers for my problems. I kept eating as carefully as possible, slamming vitamins, resting when I had to, getting fresh air, and going for short walks even when I barely felt up to it. I'm truly not sure how I managed it without any real intervention, but gradually, my symptoms started to improve in early 2022. I felt overall drained and weakened by the length and severity of the experience, yet tried my best not to show it or speak of it too much. I had a convention to prepare for in March, Furnal Equinox, and I hoped that the upswing in my health would mean I could start getting back to business as usual with the gusto I once held for my work. However, that was not to be.
I have come to call the events of spring 2022 "support network collapse." At a time when I was already depleted of personal resources from the year I just described, friends kept coming to me with serious problems they often couldn't talk to many people about to vent or ask for assistance. I tried my best to listen and do what I could for them, often giving more of myself in an attempt to help than I truly could afford to offer from the state I was in. I didn't feel like I could ask for support in the same way when my close friends were suffering, even though I was also in a place of difficulty and trying to recover from hardship. But eventually I hit a point where I hurt so much from this overexertion that I had to start insisting on boundaries, first in a soft way, then more directly. These boundaries were not respected as I would've hoped. I withdrew socially as a consequence, and with no real outlet for the pain and exhaustion I was emotionally feeling, I felt alternatingly overwhelmed and numb for a very long time. I lost interest in my work and in life. I couldn't care about things I wanted to care about or knew I should care about. I was aware I probably needed help, but I also knew it would be nearly impossible to find, with mental health care being even more difficult to secure in Ontario than the physical health care I had struggled so severely to obtain not long before. There was nothing I could do but drag myself forward the best that I could, just making myself get things done whenever possible.
Much of last year felt like I was limping through it, pushing whenever I had a little energy to make as much progress as I could, then falling quiet again for a while because carrying on imperfectly felt like such failure. My patrons and supporters deserve a share of credit for the distance I've been able to travel back to myself so far for their generous patience and understanding when I've gotten behind on promises and had to catch up in a way I never struggled with this badly before. While it might seem odd from the outside, I also have to partly credit playing FFXIV and the friendships I've forged through it with my gradual recovery, which I still consider ongoing. By sheer happenstance, I met a close and dear friend through the game so alike to me that we understand each other innately, often finishing each other's sentences, guessing each other's thoughts, even accidentally gesturing or posing the same way when together in person without realizing it. I've shared conversations with them that have made me feel like I am completely seen for the first time in my life. I've also forged new connections with people who used to only know me through my art, which has done a lot to validate that I am worthy of fun time, rest, and recovery like anyone else and has reaffirmed I can be a valued friend beyond simply what I'm able to do or give. The type of deep burnout I have been clawing my way back from is not resolved quickly or easily, nor will it be a straight path I can chart and know for certain in advance. I am going to keep doing the best I can and try to find peace with those moments when it isn't quite what I would have preferred. I am going to keep going.
I had a friend at this year's Furnal Equinox a couple days ago mention to me that they noticed I'd been quiet the last couple years. I want to believe there is still space for me to return and rebuild in all my iridescent nonsense and silly bug shenanigans and ambition to explore in ink and color. I want to believe that the sun comes up again after the deepest dark of night. The company of the weekend past has given me hope. I am still here to keep trying, after all. So I will.
I hope this year will be loud.
Comments
I realize I'm replying a bit late, but thank you for this kind comment. It has been a challenging time with many setbacks that have made it difficult for me to fulfill the standard I intend for myself at times. Things have been going a little better recently, and I continue to persevere.
Marian Goldeen
I'm so concerned for you! I can only imagine how discouraged and desperate you must feel with such a failure of health care on your behalf. And that on top of the emotional impact of physical illness. Not to mention the physical impact! All sympathy from me
