Chronic Illness & the Space Between Us

Photos: Holly Hursley

No one tells you that you won’t sleep.

When you fall in love with someone that has chronic illness, people don’t tell you that you will spend countless nights awake. A loud noise will wake your partner up. Their body will keep them up. Their restlessness will wake you up. The existential dread of how terrible both of your moods are going to be in the morning will keep you up too.

Nothing you say can make them feel better, though you desperately want them to. Or rather, you’ve already said the things that might make them feel better so many times that those words seem like unintelligible, irrelevant mush. You bicker, not because you both are angry (well, your partner is definitely angry, not necessarily at you), but because you’re both frustrated. Because you’re both tired. You wish they didn’t let themselves get so angry (“It’ll only make it harder for you to sleep.”) They wish you could feel what it’s like to live in their body (“Am I not allowed to be angry?”). Then you both are quiet, because one thing’s for sure: arguing is not sleeping.

You find yourself listening for their deep breaths. The longer you don’t hear the sounds, the more anxious you get about the day ahead. “We’ll both be so cranky.” “We won’t be able to focus.” “Do I have melatonin hiding in a travel bag somewhere?” “Should we take it at 4 am?” “Is it worth turning on all the lights to try to find?”

You play rain sounds on your phone for ambient noise, then remember that Arianna Huffington says electronic light is bad for your sleep cycle. Your partner rolls over, and you wonder if you’ve disturbed them, then you think it’s not so bad because they’ve disturbed you, and then you remember your empathy again.

You don’t know what it feels like to live in your partner’s body. A patchwork of descriptions in conversation, observed body movements, and Google searches give you a vague idea. The majority of the time you don’t notice that anything at all is wrong with them, so you let yourself forget. You Google medication side effects and holistic treatments. One of those searches tells you that 50 million people feel pain in their bodies day in and day out. Between those people and their potential partners, how could nearly a third of Americans not be sleeping well? Not counting the wailing babies or the late night drinkers or people without warm beds or medical students on call or the migrants traveling by night or….

Now they are all in your bed with you, it feels like, between you and your partner. Sometimes it feels better to imagine a world where most people are getting shitty sleep just like you. This is real life, isn’t it? Like taking care of elderly parents and saving for taxes. The things that never make it to social media, that barely make it into polite conversation.

Sometimes you commit to the circumstance, and you find yourself thinking ridiculous things like “It’s ok if I never have a full night’s sleep again.” You tidy the apartment or you pick up your work for the (next) day. You type out your thoughts in an effort to tether your restless mind back to a world that will soon begin to call for you again.

No one tells you about all the sleepless nights. Maybe they forget to mention it after all the graduations and mitzfahs and beautiful sunsets and close hugs. I understand that, because it seems malicious to bring it up alongside all the genuine big and small love. But sleepless nights are there, between midnight and morning, between my partner and me.

23&Me and Me

When I was growing up, my mom’s adoption never seemed like that big of a deal to me. It was a routine confession to doctors, that I only knew half of my family’s medical history. The way she talked about it, she didn’t miss the family that had given her up. If anything, it seemed like maybe she was still a little angry–even if, as an adult, she could fully understand why a woman in the 1950s might choose to give her baby away.

And plus, she always told me, her parents are her parents. They’re the ones who raised her–who took care of her when she was sick. Their relationship wasn’t perfect (let’s face it, who’s is?) but she never seemed to waiver.

Then a few years ago, after her father had died and my brother had been diagnosed with a rare autoimmune disorder and I’d struggled with digestive issues for years, she told me over a breakfast date that she wanted to look for her birth parents. Mostly, she said, for my brother’s and my medical history.

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It’s a complicated prospect to start to look for your birth family at over 60 years old–her parents could be dead. But they also probably went on to have other children and long complicated lives that she was not a part of, and perhaps they stayed together and wondered about her and perhaps they never saw each other again and maybe–maybe, they had given her up and never looked back. Maybe finding them would be an intrusion. Maybe she would find out things about them she didn’t want to know. And maybe she’d never find them at all.

But, she wanted to try. And after the first few phone calls she learned the adoption agency her parents had used closed down in the ‘70s. It became clear that the search would take a while.

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So in the meantime, that Christmas, I gifted her a 23&Me genetic test; figuring the most it would do would give her a clue to her background and maybe make her feel a little more connected to her biological family. I didn’t realize they allowed you to contact possible close family members until she mentioned she matched with some third cousins.

Meanwhile, the months slipped by and she spent more hours on the phone with the state of Texas, digging through possible avenues to find out about her parents. They narrowed it down to the last possible option–she’d need to get an original copy of her birth certificate, which would have, at the very least, the name of her biological mother.

Then suddenly, the way these things do, everything changed. 23&Me sent her a notification: they’d found her half sister.

It was exactly what she always thought might happen. Out of nowhere, she has a sister; one who grew up knowing her biological father and who begins to put the pieces of my mother’s origin together.

Since the story is only just beginning I’ll save it for my mother to tell. But when she spit into the tube that day after Christmas two years ago, I never imagined my gift might open the door to that story.


WTF is Community?

I had the same group of friends from about 6th grade through high school graduation. I had known most of them since I was 7. We were best of buds through movie premieres, mall loitering, and the Myspace Top 8. I grew up with them, then I felt like I outgrew them and the suburb we grew up in.

I went to a small college with lots of intersecting groups, that I learned had often already been intersecting for years through boarding schools and small East Coast towns. I studied abroad twice while in college: once for a month, and then for a semester. We bonded over wild misadventures and a false sense of independence. We came back home with stories that almost felt like secrets.

After graduation, a bunch of us from college were all part of a bubble that moved from our college town up to the Big Smoke (aka Denver), a big-little city of its own. There was Rock Bar with its terrible carpet. Cheesman Park which we frequented like climate change was going to take it the very next day. D’s parties that everyone came out of the woodwork to attend because they felt just like the parties we remembered on the quad.

Slowly but surely, things changed. People left to Mexico, NYC, San Francisco. I left for a while too, more out of obligation than self-interest, for the Bahamas and then to Mississippi for grad school. Two more places, many more friends. As you might have gathered, I’m quick to make friends. A good roommate of mine graduated a semester early, and I remember feeling like I was being left behind. I felt oddly betrayed, and then instantly ashamed at how childish that was.

I moved back to Denver, but Rock Bar had closed, D (and everyone else, it felt like) had moved, and we were all suddenly too busy to wile away an afternoon at the park. There were new friends, a new roommate, and new things to do like Motown Thursdays at the delightfully kitschy Beauty Bar. Spoiler alert: Beauty Bar closed, and that roommate moved away too. I worked a job for 2 years, but by the end, everyone had either left or been fired. I switched careers (again) and found new community in activism and progressive politics, but I was beginning to wonder if maybe the trick was to always be the one who leaves first.

A friend told me about the book, “Attached”. In the interest of full disclosure, I put the title into a note on my phone because I thought I might read it, but I’m pretty sure I never actually will. The TLDR is that there are 3 types of people when it comes to relationships: Anxious (constantly yearning), Avoidant (constantly withdrawing), and Secure (give and take within your means). I’d always thought of myself as pretty secure in my romantic relationships, maybe erring on avoidant when I felt like my needs weren’t being met. I’m an independent person who feels confident moving with others as well as breaking new territory if something doesn’t work for me. But maybe that independence is a bit false, like the independence I felt studying abroad while my parents and student loans footed the bill. Maybe I didn’t want to go to new places all the time and make friends everywhere I went. Maybe what I’ve always really wanted is my own version of Cheers.

At the top of last year, a friend and I started a group to foster community. We wanted to bring people together around issues and passions that united us, to have fun and to work through the not-so-fun. As that chapter closes, I realize that the group was successful in many ways — so many stick and poke tattoos, group texts, business ventures, and genuine friendships made. In fact, I wouldn’t be here, writing to you on this beautiful website in this wonderful neighborhood of the internet, if it wasn’t for the connections I made in that community. It is not lost on me just how fulfilling and magical it is to create things with people you care about, with people who care about you.

But I think I need to stop chasing after my Cheers moment. I still feel betrayed when people leave or don’t show up, and I feel ashamed that I haven’t grown up enough not to feel that way anymore. The truth is, as independent as I think I am, I’ve decided to live in Denver because that’s where my family and my closest friends are. I’ve decided to live near downtown, partially because I hate the idea of commuting to the places I like, but also because I want to live near my friends. It is not lost on me that most of them live farther and farther away every year to buy homes and start families. I made these choices about where to be physically so that I could continue engaging in a form of community that runs on coffee dates, park hangs, and late night dance sessions.

I don’t think that terrestrial form of community is working for me anymore. I’m trying not to believe that being avoidant, being less and less available to others, is the best way to feel better about it. I haven’t figured out what my next friendship philosophy is going to be, but I have learned that the internet continues to link me to the people in all of my prior lives. Whenever someone I haven’t seen in years DMs me or laughs at a meme I found, it makes me think that maybe a bar where everybody knows your name is kind of overrated anyway. In the meantime, I’m making this thing here — this community, if you will — because I suspect that even if I do pack up and move or just stop showing up to things, that I’ll still need a feeling of connection.

I think you might need it too.



I Bought a Menstrual Cup on Instagram

I asked friends about menstrual cups. I read about how magical they were for the environment, how nice it was not to have to carry products with you everywhere, but ultimately it took seeing a single black woman in an Instagram ad for me to actually buy one. The website that sold them was beautiful and interactive, with graphics illustrating technique and a robust FAQ page. I was actually excited to use a period product, which, since the advent of my period at a Water World theme park when I was 9, has never ever been a thing for me.

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Somehow I was still blissfully unaware of how intimate I was about to get with my period experience. There was the seal-checking, which requires you to run the perimeter of your vaginal canal with your finger, the at-first unfamiliar static fullness. Upon removal (earlier than advertised), I was surprised at just how full of blood it was, then i immediately felt affirmed that what doctors had suspected was an overuse of super plus and ultra tampons did in fact correspond to “heavier than average flow”. I had the milliliters to prove it. There was the intense bright red color that stained the bowl and made me instantly happy that I was doing this process at home. God forbid my period betray me in front of company again. Tampons soak up the vaginal secretions (lolz that word sounds just like what it is), but the cup just holds them, leaving a mix of blood and what kind of looks like spit. It’s interesting to me, but I am an ex-scientist so that fascination is likely not universal. At first there was more opportunity for blood on my fingers, on my thighs. My blood didn’t all go away when I flushed.

My period hadn’t changed and yet I was experiencing it anew at 27. I was ALL UP IN IT. But it didn’t make me feel better or worse. I was more viscerally involved with what was happening with my body, and the process of it made me think of what periods must be like for women in our village in Nigeria. Reminded me of how privileged and modern it made my mom and her sisters feel that they had access to pads growing up. The Instagram cup company said they donated a cup to a young woman in need somewhere, so I guess it was nice to imagine that a women somewhere was having the same experience as me. (Then I immediately felt guilty that I was letting a retailer give me a false sense of activism.) @it’s better for the environment” and “I’ll save so much on tampons” were both things I reminded myself as I washed my cup clean and reinserted it. I wasn’t grossed out by my period, I was just having to deal with it, really deal with it. I didn’t feel better or worse because my period hadn’t changed. It was still a bitch. I still had blinding pain, uncomfortable, bloating, difficult shits, which all seem incompatible with period positivity. I don’t plan to have children, so my uterus only does for me what a cocktail of hormone pills could do and does do for lots of people who have had hysterectomies. I’ve long considered getting one, but very few doctors would see the above symptoms as being valid enough to take away the fertility of young women who desperately wants to be rid of it. I hate my period. The novel excitement of the Instagram cup wore off so fast that I even surprised myself. So what I should say is I STILL hate my period, but I do know her a hell of a lot better.