In the span of a little less than three weeks, two women who I am acquainted with told me about growths on their ovaries. The first woman told me at a bar where we were celebrating her boyfriend’s birthday. Her boyfriend and my boyfriend are friends. She was at the bar ordering drinks and asked me, “You want one? Oh wait, you can’t- your medication.” I said unfortunately I wasn’t on it right now because my doctor didn’t order the correct formulation and it’s currently tied up in an insurance battle, etc, etc, so I can drink. “Great! On me!” We sat down and she told me about the growth clinging to the outside of one of her ovaries. She told me it’s benign and a surgery was scheduled for the following month. She said she couldn’t wait to tell me about it because I would understand. She knew about my narcolepsy but she did not yet know about my interstitial cystitis, recurrent BV infections, and pelvic floor issues. We talked for a long time about various pelvic maladies that make sex unthinkable. We talked about doctors making mistakes and the way we suffer. We talked about how participating in any kind of sex, even with someone you love very much who respects you and your struggles and asks questions, when you are not sexually excited, re-triggers or triggers the experience of sexual assault. We talked and talked and she said she didn’t know anyone else who would understand. I said of course I’m happy to talk about it and support her after her surgery and hope we can do something fun too, when the dust settles. I believe her dust will settle. Mine never really does.
I think of narcolepsy as my primary chronic illness at this stage in my life. It’s the one that causes the most disruption to my everyday life because it fundamentally compromises my ability to get restorative sleep and when you can’t get restorative sleep, everything else is entirely fucked. (There was a study that showed that when people get sufficient sleep they actually like people more the next day. And that’s people who already have normal sleep architecture.) It’s the chronic illness that’s listed on my medical alert bracelet that I wear when I go out into the world alone. If I were to have a cataplexy episode or sleep attack in public, people would think I was dying of an overdose and probably shove some Narcan up my nose and put me in an ambulance before I would be able to move or speak again to correct the matter. But the other chronic illnesses are there too. I get “flares.”
The next woman to tell me about her ovary jumped over to me while grinning on the dance floor late at night. Her husband and my boyfriend are friends. “Oh my gosh! I’m so glad you’re here! You were the first person I wanted to tell! I told him (pointing to her husband), I must tell Leah!” During the past summer we talked about digestive issues and things we had found helpful and unhelpful with various types of IBS and other functional digestive issues. Doctors had ruled her lower stomach pain and digestive issues as IBS and she was upset at how her life had changed and become consumed with food planning around what would cause the least amount of stomach pain and upset. She initially knew about my narcolepsy but she did not know until that day at the beach about my IBS. She did not know that I carry baby wipes with me and pads in my bag. (The pads are for potential farts that release poop, not for blood. When one autoimmune condition is present, more burst from the seams. I do not have an IBS medical alert bracelet but I do have a legal Crohn’s Association medical identification card signed by my gastroenterologist that gives me the legal right to access a bathroom in any business in New York state so long as there is more than one employee physically present in the business establishment upon my request. My boyfriend affectionally refers to it as my “License to Shit.” Even so, many people deny me access to their bathrooms prompting me to show them the legal wording on the card and the phone number to call if they have questions and, rarely, the number I can call to report them for denying me access. I never would because I understand that being an employee at most businesses is already somewhat like experiencing the stress that comes with a chronic illness. Additionally, a manager at a Muji store explained to me that most retail establishments have clauses in place to prohibit anyone who doesn’t work at the store from using the employee bathroom because of liability concerns. He said he would let me use it just this once and I thanked him for explaining this to me. No one wins here. I did almost lose it at a woman at a Communist bookstore which I otherwise was excited to support before her flat-out “No” and subsequent promise that she would not even read the card. I wanted to scream in her face that perhaps I’d shit on the floor because this prolonged discussion made that outcome more and more probable. Instead, I sheepishly went into the Japanese restaurant down the street and used their bathroom before thanking them and running out. Then I left a five star review of the restaurant on Yelp citing the best staff I have ever met. Ever.) She was eager to learn what I had found helped me and I told her that sadly but happily I had discovered by accident that any type of tomato sauce, even those without garlic or onions, are my biggest trigger. And beets. Other than that, I said that I think it’s very individual. With time she will find what works for her and what doesn’t.
On the dance floor she told me that a month earlier she went to an urgent care with severe lower stomach pain and then she went to an ER where they did a CT scan that revealed an ovarian cyst so large that it had caused her fallopian tubes to twist and contort to the extent that part of the tube was nearly “black.” She then excitedly explained that she was transferred to another ER where she received emergency surgery. “And then I WAS FINE!” she said. “Last night I ate PIZZA! Pizza!” I told her how happy I am for her and gave her the biggest hug. “Now I can conceive again!We have been trying for a second child for so long and now we can because my fallopian tubes are free again!” Again I hugged her and told her how happy I am for her. She showed me her scar and I asked if the procedure was laparoscopic and it was and she was feeling great. (I did not feel the need to tell her that I also related to being transferred between emergency departments within one day and that in fact I went to an urgent care earlier that week to get a COVID test because I had had stomach pain and diarrhea for several days. The doctor said the test was negative but if I was in pain I could go the ER and get a CT scan. I kind of looked blank to match his blankness and said the pain was not that bad. I shrugged and left.) I told her that it was funny in not a “haha” way, but that a few weeks ago someone else had excitedly told me about a growth on their ovary, also the size of a peach, that would be removed and solve the pain and continued potential growth. She said, “Well of course, Leah. It’s because you suffer!” There is a little relief in knowing that finally people understand what I do for a living. “Haha.”
I am genuinely happy for these acquaintances who I sincerely hope will become friends if I am ever awake enough to have the energy to socialize with people more than once a week (on good weeks). But by the time the person on the dance floor told me about her pizza from the night before, I hugged her close and held back tears. How perversely jealous I felt of her ovarian surgery that actually fixed her pain. A surgery that in fact improved her life is something I can’t understand personally. I’m not even sure how many people I know now are aware of the hymenectomy I had when I was nineteen because the skin covering the entry to my vagina was overlapping and too thick to be penetrated by a tampon or a penis without causing extreme pain. The surgery was done over my winter break between the fall and spring semester of my first year of college. I came back with a bottle of oxycodone which I promptly sold to my friend’s friend after it stopped working for my migraines and severe scar tissue which was likely the cause of the cascade of pelvic issues that blossomed over the years. I had excruciating sex after parties for years because the sexual validation was apparently worth the pain from the scar tissue and subsequent UTIs. I remember waking from surgery in post-op. The sheets were white and rough. Bleached. I rolled over once and saw a single circle the size of a quarter where my backside had been. It was bright, dark red. Crimson blood.
The conversations about other people’s ovaries reminds me of how different the experience of chronic illness is from these things our bodies do that temporarily cause great suffering and uncertainty but do have mostly favorable prognoses. That is not to say that even a temporary medical condition that can be extracted will not alter that person’s relationship to their body and their health going forward. It’s not to say that any of us really know the future at all. All traumas are trauma. One type is not greater than the other. They are just different.
I am happy for these people that their misdiagnosis ranged from three weeks to six months and that they have answers and concrete solutions. I am glad that I’ve found people who turn to me for wisdom and understanding in reference to my lived experience instead of as a sad sack who doesn’t have a job. I am grateful for this awareness. I am grateful that these are my boyfriend’s friends and that he showed me this respect and love and patience from the very first day we met and that it hasn’t wavered. But sometimes I still want to scream. Sometimes I wish I had a peach inside me that someone would take out laparoscopically and neatly and carefully and I would be in pain for two weeks and then I would eat pizza and then I would have check-in doctor appointments that would progressively become farther and farther apart until I had a screening every year or every three years, even though it was benign. And I would have my second child and send that child to Montessori school too in Red Hook, Brooklyn. Maybe I try on this hope for her and I try on this hope for her, for me.
I wish that there was a word for longing to know the future but knowing at the same time that more than anything I do not really want to know the future. I just want to know that things will be okay. I remind myself that things will be okay because they have to be and because I will make them so by adjusting my expectations or something like that. I think I will make up that word if it doesn’t already exist in English. If I find that it does in another language, then I will use that.
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