The post I write today is not about Intersex, at least not specifically. Though I would be most grateful if you would stay and read it.
I want to write about so much that has happened in relation to Intersex, and what I’ve learnt from some incredible people in the last few months. My life has been forever changed recently, working with some bold and whip-smart women at IntersexUK and connecting with Intersex advocates around the world. Intersex friends and websites told me that meeting other Intersex people would be helpful, but my god, the joy and relief I have felt in the last year is un-paralleled.
I can’t start there though. Thankfully this is a blog, so I get to go off-track.
This post isn’t linear. It doesn’t follow where I left off some time ago. But I can’t seem to write anything else until I write this. It is the post I have wanted to write since I started this blog. It’s difficult to pinpoint why exactly, but I will try to nail it down here.
I don’t talk about this very often.
Nearly a year after my first surgery I ended up in a clinic in St Petersburg, Russia alone and relatively certain that I was about to die. I had my Russian teacher, all of twenty-seven, standing next to me, translating what the doctors were shouting at me in staccato Russian. I had just learnt the verb ‘to die’.
For a while after chemo ended, especially when I started school, a new school, I was completely lost. I kept having flashbacks in lessons. I was told later in the year that I had PTSD. I would go to the toilet and cry and sweat because I would relive the worst of the last year. I was a few months into remission, I didn’t know how to adjust to my 16 year old life, and I was petrified of the cancer coming back.
I couldn’t put pieces together in order to fit in with people around me, my people, who I thought I knew and connected with. I thought I was just like them, but I wasn’t anymore. It was like being monochrome in a colour photo. Life around me seemed bright and promising for everyone else and yet, for me, it was completely grey. I drifted through the day, barely speaking, trying to rely on autopilot.
Fatigue from chemo was still severe, and I took regular naps throughout the day, not telling anyone where I went. I took advantage of the school’s kindness and understanding, sometimes going to bed because I couldn’t sit at another lunch with my friends, not saying a word.
At the same time, I began to experience stabbing stomach pains. They would come suddenly and would last for an hour or two before passing. It was the kind of pain that instantly made you forget what it was like to feel well. I said nothing about them, but would miss school and lie foetal on my bed. Descriptions of medical maladies are clichéd but all the same these pains were like knives. Or what I think knives might feel like.
The pains came and went for nearly six months, at which point I found myself in Russia. I chose to study Russian because I thought it would be awesome. I loved learning a new alphabet, where every composite word was a puzzle to solve, and I wanted to connect to my Slavic roots. The teacher, Mr. Drury, was inspiring and enthusiastic.
We got to go to Russia, Moscow and then St Petersburg, and stay with an exchange. My exchange partner was Dasha. She was independent, lively, and beautiful. She made me watch ‘The Fountain’, my ‘deepest’ film to date. She was complex and confident. She took me out of my comfort zone, taking me to a backstreet off licenses and drinking vodka late with her friends.
Leaving her, we took the Siberian Express to St Petersburg. We were out of the train barely an hour and the stabbing started, walking down the Nevsky Prospekt. I realised I didn’t have the drugs my GP had prescribed for the pain. For some reason I thought it could be a hunger problem and I went to KFC. Moronic.
The pain got deeper and sharper and then twistier. I lay like a feral wounded animal on my hospital bed. I had failed to mime laxative to the Russian pharmacist, a game of charades that will go down in history. I started to cry. I hadn’t cried from pain in a long time. Fear, yes, but not pain.
The decision was made to take me to the nearest Russian clinic, which had a better reputation than the hospital. I limped down the hotel stairs, eyes black from mascara stains, in front of my Russian class. When we arrived at the clinic I was given an ultrasound and told them my history. They quickly deduced that the pain was being caused by abdominal adhesions, from the abdominal surgery the year before, and they were advanced. The adhesions had been pulling or kinking the small intestine and was preventing the flow of content through the digestive tract, and was likely to have caused necrotic bowel tissue.
You feel it in your bones when you are being told bad news. I knew what I was about to hear when the phone rang and my grandpa died on the morning we were supposed say goodbye. And when I got cancer. And when my grandma who built her life up after my grandpa’s death had suffered a stroke, and then another one. When the cancer spread to my lungs and I had to tell my parents. When the son of the family who looked after my dad and sister during my illness was diagnosed with cancer. I knew it when the doctor came into my hospital room in St. Petersburg.
My only request, and it was desperate, was to be airlifted home. But I was told with all the sensitivity of a missile, that I would not survive the flight and if I didn’t have surgery in the next twenty minutes that I would die.
I felt a sheer panic that comes over you when you believe you’re going to die. The streams of tears, like to some child in a grocery store sobbing about cereal, they just kept coming. I cried so violently that it was difficult to speak. The first thought that I was able to get out was ‘tell everyone that you love them, get them on the phone and if you can’t do that then make sure that Mr Drury knows what to tell them’. I listed off about six or seven names for him to tell that I love them. I outlined why I loved them and I think he wrote it down but I’m not sure.
A separate and un-vocalised thought was ‘Suz, you will be dying a virgin’.
I cannot express the abject pain and deep heartbeak I felt when I said goodbye to my parents over the phone in that Russian hospital. I thought about how my Dad used to say that crying is good because it cleaned your eyes. I knew that Mum and I thought this was it, because she told me that Grandpa would be with me. Juliet ran upstairs and cradled my hospital blanket. I felt so much heartache and grief for my parents. I saw my body as a black hole, sucking them in without hope or chance of escape.
The truth, which is frightening to so many, about death is that there is no plan for it, most of the time. You don’t get to plan or anticipate death like you count down the days till the end of the week. I just kept thinking “Not like this. Please, not like this.”
In my infinite wisdom I had decided to watch ‘Awake’ right before boarding the plane to Moscow. For those who haven’t had the pleasure, ‘Awake’ tells the story of a young man whose general anaesthetic fails to anaesthetise him and he wakes up during surgery, feeling everything whilst incapable of any movement or ability to give a signal to his condition.
The Russian anaesthetist came into my room with the casual gait of someone either very sleepy or incredibly high. “Vat eez your weight?” he asked. I had no clue. My last weight was taken over a year ago during chemo. I gave him a weight that I hoped was a solid ten pounds over the truth. We couldn’t weigh me because the pain was too much for me to get out of bed.
I have never felt more relief or immediate shock at being awake.
I really don’t know how to put into words how unbelievable it was to wake up the next day. Though that lasted about four seconds, before I realised I had three small holes in my stomach and no observable pain relief.
I joked a bit with Mr. Drury but was largely silent for the next few days. The truth was Mr Drury was considered the ‘hot teacher’ of the school and his constant attention, going well beyond what he ever expected to provide as a teacher, made me feel stronger and kind of awesome at first. Mr Drury found English copies of his favourite books to give me High Fidelity and Fever Pitch. When I got back to school some people were genuinely jealous. Though in truth, Mr Drury seeing me limp to the toilet in an open robe tempered the eroticism.
It was a tough but swift recovery. Russian pain relief was….lax to say the least.
When my parents arrived, after getting an emergency visa, Mr Drury was finally able to go back to the school group. Though not before my parents and him went out for dinner. They toasted to friendship with vodka, my parents so grateful that he had cared for me so well in their absence.
I sat in the room, fresh out of the ICU, the loneliest that I have ever been. I gradually began to experience more emotions that I had apparently put off. I suddenly understood how claustrophobic people feel in lifts and alleys. I started rocking back and forth. I repeated in my head and then out suddenly aloud “I want to go home. I want to go home. I want to go home.” For hours I shook, and rocked, and chanted the same thing until I was sedated and awoke in a different room.
We didn’t speak about what had happened, how close we got, how scary it was. Dad bought Blades of Glory and Dodgeball DVDs with English subtitles, and we just played them both in sequence until we got on the plane home several days later.
It is such an unbelievable gift that I get to be alive and I get to live. There is a crucial difference. Though I am denied precious few things because of the body I was born into, and they are precious few, I still get to run and laugh and speak and love. Those are luxuries.
Every year, in the United States alone around 2,000 people die from obstructions due to adhesions. Once the complications reach a certain stage, it is incredibly difficult to fix. I am a very lucky person. I am so lucky that I still have my life. I think about that when things get or seem bad. It does seem oddly cruel that the surgery intended to save your life can cause the thing that may kill you. Writing about this, it is important not to make an idol out of suffering or illness, and to think about those who do experience a sudden death and do not get to recover and live. I try to honour those people as best I can, and I don’t always do a great job and I’m not always sure how.
It has given me a lot of courage and nerve. Confucius said that we have two lives, and the second begins when we realise that we only have one. Though there is a difference of six years between the two events, living after Russia was crucial for me to realise that living in secret and denying my Intersex body was not living at all. My time in Russia pushes me to remember that living in fear, or crippled by redundant shame, would be a disservice to those who don’t get to live. It is important to show people that they matter and to realise that you are equal to everyone.
There have been a few times in my life where I wished I wasn’t Intersex. There were times in life where I begged for a lighter burden from my sickly body, for relief for my parents and my sister and my friends. Relief for the inner core of friends whose friendship and love has been tried, tested and then met through chemo and surgeries and scares.
Sometimes it feels necessary to justify one's motivation for writing. I write this to express my gratitude for this life, to give testimony to a dark time that many reading this will face, and to show a modicum of respect for those who are not as lucky as I was.