Rowan

I'm Rowan, a transman (he/him pronouns) of color who has been chronically ill for more than half my life (to the point that I have no recollection of what it was like before.) I just had my twenty-fifth birthday ten days ago while in quarantine, having to accept that homemade brownies and a few well wishes over text were all that encompassed my birthday this year given everything going on. I've since had to stop going to work as being high risk would make going into my essential job (veterinarian nurse at a high volume ER/ICU) more than it would be worth. My partner has had to isolate themselves as well to make sure she doesn't bring anything home to me. 

I have severe asthma, fibromyalgia, endometriosis, chronic migraines, bipolar disorder, and autism. All of which I've had to hide and minimize the majority of my life in most circumstances because the world is unforgiving and not at all patient for any of my disabilities. I don't let people know I'm in pain, I don't tell people the hoards of medications I have at home for any given reason that I might flare up. I don't let people know that I'm triggered by their actions or words because I know they won't take it seriously and I can't bear to be laughed at. I swallow it all down because that's what I discovered I have to do. 
I spend my time trying to write again (as I used to write all the time before the stress of having to work 40+ hours a week exhausted me mentally/physically) and mostly just manage the shift in the world and my day to day life now. 

My twitter: @wilted_blossom

How are you doing?

With all the stress of the impending bills that are approaching, I try to keep my focus on keeping a schedule for my animals (two dogs and four cats) that are thrilled that I'm home all the time. I try not to think about the outside world and how I'm once again falling behind because the virus doesn't just mean a few days or a couple weeks ill, it could mean hospitalization and my life. Sitting at home doesn't just mean I'm stopping the spread, it means I'm having to protect myself at all costs. I'm managing in whatever ways I can, hoping that there will be some relief soon, whether it be the stimulus package, the unemployment I ended up having to apply for (which I initially only got approved for $100/week in my state; and am now hoping I get that boost of $600 to make my bills), or simply a solution to this virus that could kill me or my loved ones. 

I'm managing the best that I can, to put it simply. Even with my landlord telling me he needs money for his livelihood and demanding to know how I could possibly be highrisk and no consideration that my life is at risk each time I have to leave the house. 

How do you feel?

I feel in a constant state of panic, but also numbness. If I had to use one word to sum up how I felt, it would be numb. I was initially scared, when I was still going to work. I worked myself up into a near panic attack from being so terrified at exposing myself to something that could kill me and yet not feeling as though I could just stop going to work because then who would pay the bills? What would my coworkers say? How am I supposed to support myself and my family if I'm self-isolated? 

And even though I have a manager who understands that my self isolation is less of a choice and more of a requirement, and a family who pushed for me to protect myself, it's still terribly hard for me. I have lived 14 years in pain. I have worked for years despite how hard it is for me to get out of bed sometimes, put on or take off my clothes, wash my hair or clean my body. And despite all this, I work 40+ hours a week because I have to or else I can't live on my own, but I also have no family who would be able to support me. And so swallowing down the fact that I've 'let my disability control my life' and stopped going to work is really hard for me to do without guilt. Because I've let down my coworkers and my family will have to help support me in the next week as bills are due. 

I feel angry when I look at people's posts about how they still have to go to work during this situation. And while I know it's not that simple, because I know that these healthy people are putting themselves at risk each time they go out, I still wish that I was able to go to work. I get annoyed at myself that I'm sitting at home and not accomplishing anything. I'm irritated each time I check the news and see nothing more than the case count and mortality rate and the dumb politicians fighting over how much help we deserve. I am frustrated that I have to stay home to protect myself but still somehow come up with the money for bills or risk issues in the future when my landlord inevitable wants to evict me when the moratorium is over. 

What do you need?

This is a loaded question, I feel. For years, I've just needed understanding. I don't like to be hopeful and wish that any of the problems I have would be cured at some point. I do hurt and get upset that I hurt and feel terrible that this is what my life is some days, but for the most part, I just need compassion. I would like to have compassion. I don't want to be written off as someone who is just being lazy or over dramatic, especially during a pandemic like this. I want people to look at me and know that I've done my absolute best and have fought tooth and nail to get where I am. I need someone to remind me that I'm not a failure as I take yet another nap becacuse this entire thing has put me in a constant state of exhaustion and none of my migraine medicines are enough to keep them at bay. 

I would like for people to stop emphasizing that it's older people or sickly people that need the protection and for them to start realizing it's the person that laughs with them at work, that comes in two hours early or stays an hour late for their shift to help out when things just aren't caught up, that needs their help. 

While I need money to live as everyone else does, I think what I need more is the thoughts and care and compassion. Maybe that's selfish of me.. 

What do you wish was different?

I've known from a very young age that anyone who is different, not even just chronically ill or disabled people, get looked at different. Any outliers are pushed to the side, or dismissed, or told to be more like the status quo so they don't bother anyone. I wish that was different, that anyone who is different, or ill, or simply dependent in some way, isn't seen as a burden. I would like if people didn't need the most extreme circumstances to have compassion for those not in their immediate circle. I wish I was seen and recognized as someone who is able in some ways, and respected even in the times in which I'm not. 

I also simply wish I had to stop forcing and pushing my body to its limit every day, because I feel it wearing on me. 

Leah Lakshmi Piepzna-Samarasinha coined the term "Crip Emotional Intelligence." What crip intelligence, whether emotional or otherwise, that you have developed is coming in handy right now? 

Crip intelligence is something I've implemented in my daily life before I even knew the term. Being chronically ill means I know what it's like to feel tired, feel unheard, not be seen (but of course, I don't speak for all who fall under the category.)  I know what it's like to be called a 'bitch' or called 'confrontational' without meaning to have come across that way but I was too tired because I got two hours of sleep after eight hours of agonizing pain, or I can't help but vomit everything I try to keep down for whatever reason, or I had bad dreams and so the noises grate on my ears wrong and I come out snappy. I let people have their moments, because I know it's not directed at me. I know sometimes it's hard to keep it all in and leave it all at home where it can't bother everyone, and I wouldn't dare burden someone with that when they're clearly already low on spoons to begin with. 

And right now, I feel that it's helping me keep in contact with people, keeping myself somewhat connected. I'm making sure to message people that I sometimes let fall to the wayside when life happens. I'm reaching out to check on them, to let them vent, to let them just tell me that they're scared or worried or they wish they had something to do at home. I know I appreciate just being able to tell someone how crappy I slept and vent that my landlord is being inconsiderate. I figure other people need the same, too. 

Maybe there's more that I could or should be able to do, but I know I also have to accept my limitations more than ever, and sometimes all I can manage is to tell someone I care and I'm listening. 

What are you dreaming of?

It's hard to say right now. Some days, I dream of not having to work anymore so I can focus on my health and my schoolwork so I can actually complete my master's degree before I'm 40. Some days, I dream of not being sick at all and being able to function like an abled person who can work full time and go to school and have a social life and family obligations without having to pick and choose what's more important. Some days, I just dream of not being so tired so I can take my dog on that walk I know she loves. Right now, I'd say I'm likely only dreaming that all of this will pass quickly and easily, with the least amount of collateral damage as possible because I don't know how much more I can take. 

Interview by Bára Hladík

Recording by Malek Robbana