September 2018 Newsletter

Where Panic Has No Room To Live
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Dear Jane Fam,

I want to tell you about a woman I met named Fela. Fela was 11 when her period started. She remembers that year being characterized by very heavy periods. One night she woke up in terror, drenched in her own blood. She had bled so much her parents had to throw away the mattress. Her stepmother chalked it up to a freak accident and Fela strategized on how to make sure it never happened again. She began to wear both super tampons and “super diaper pads” to bed. 


It wasn’t until she turned 12 that the pain started. The first days of each period were accompanied by pain that rendered her bed-ridden. She missed days at school and planned activities. When she did push through the pain to make it to class, she would inevitably bleed through her clothes. One afternoon stands out in her mind. Fela was sitting on a wooden stool in class and felt something dripping down her leg. As soon as she got up blood rushed down her thighs. She wrapped a sweater around her waist as she stood. She was horrified to see her blood covering the seat and knew it would stain the wood. After this she began to hate going to school.

Through conversations with her mother, Fela learned that her Mom also had heavy, painful periods. This was her first datapoint that made her think that maybe this was normal. Fela, now 25 years old, recounts these stories to me in a calm voice. She pauses to reflect when I ask her why these things didn’t alarm her or send her to the doctor. “I did go to the OBGYN”, she clarifies, “four of them. They all said what I was experiencing was normal.” “You described the bleeding through a mattress, the pain, all of it?” I asked in disbelief. I wanted to make sure they heard what I was hearing. “I told them exactly what I am telling you.” 

“I remember walking back to my Grandma’s house after school one day and two blocks from her house, I collapsed. I thought I would have to crawl the rest of the way until someone helped me. Even then, I didn’t think I had a disorder. I just warmed up some towels in the dryer and put them on my stomach.”
I asked Fela how she managed such pain and heavy periods in college. “I didn’t go. School was the enemy for so long. It was challenging. I was intimidated by it, and I was worried that I wouldn’t be able to do well at college, that I would let my family down. So I didn’t go.”

Eventually Fela began experiencing extreme pain even when she was not on her period. One night she ended up in the ER and that led to her  diagnosis of endometriosis at age 22. The first surgeon who did a laparoscopic diagnosis on her told her it would be next to impossible to disentangle her organs from each other. “The surgeon told me my ovaries, bowel uterus – everything was in a ball.” 

I asked how her painful and frustrating journey to an endo diagnosis made her feel. Her response blew me away.
“Lucky. I feel lucky. I’ve been in the endo community for three years and my story is not nearly as bad as some of the ones I hear.” 
 

Fela has now had multiple surgeries and is trying to manage the progression with medication. Her descriptions of living with the disease are dark, and yet she has found ways to bring beauty into her everyday life. She is often stuck in bed, alone, staring out the window. Her words stay with me, “You lose your friends, your life, you stop doing things. At some point, you mourn yourself. I know everything is growth and we’re all changing. But you lose part of yourself and you realize, you’ll never be the same again.” Fela finds on days she’s confined to bed, something she can still do is draw and write. She likes to do self portraits and write poems which she binds into zines to share with other women dealing with chronic conditions.  (The subject of this email is from one of Fela's poems.)

Fela, despite all her setbacks, has an optimistic outlook on her disease. She’s excited about all the research in endometriosis. She tells me of her 11 year old cousin who is just about to start her period. “I’m keeping an eye on her, I don’t want her to go through this. You’re so young at that age” she says protectively, “you should be taken care of. They should listen to you, treat you, and not dismiss you.”

We hear you, Fela, we’re listening. We wanted to share Fela’s story and some of her art here. You can find more of her art on Instagram (@felamtima and @endotwins). If you’d like to learn how you can help progress our research, sign up to be a Beta Tester and let others know to do the same. 

In Solidarity, 
Ridhi
A Poem by Fela
How long can you stay awake
I don't know
but the devil
he said 4 days
so I climbed inside
a cave made of petals
I licked the dirt floors
and sucked the pollen from the walls
then I made marks on my skin
and each time they scabbed
I'd eat those too
then I shoved twigs down my throat
until I couldn't make a noise
because I didn't want to be found
I just wanted to lay there
in the devil's cave
where panic has
no room to live
and my mind has
no place to travel
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Stephen Gire