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It seems that it's in my genes, that there are genetic predispositions in my genealogy for this to happen. These two words tore my family apart from an early age. My uncle, my father's brother, is convinced that it came from my mother's side, because no such condition was detected on their side. I must be the first in several generations. Unfortunately, my parents died when I was very young, so it's impossible to check. I could have rejoiced if what was happening was something honourable, like winning a chess competition, a top-level sporting event or developing a superpower. But this was none of those things. It's much worse, and the ending is dramatic. There are no cotillions, champagnes, parties or friends gathered around a table in a restaurant.
It all started when I was 11. I regularly had headaches first thing in the morning, and during the day they got worse and worse until I started crying. I couldn't do anything at school because of my migraines, but also because I couldn't remember certain things and I was regularly punished for being distracted. Generally speaking, I was a pretty good pupil and my teachers didn't understand this sudden change in my attitude. I was studying at an elitist college with a three-figure pass rate. They regularly spoke to my uncle about it, who didn't really come up with any solutions, apart from telling me to stop my nonsense if I wanted to be worthy of my family. But one day, I banged my head against a wall in the hope of getting rid of this evil that was getting the better of the child I was. Then he realised that I wasn't acting. I went to see my GP, who couldn't think of anything better to diagnose than chronic migraines, without taking into account my loss of memory and my difficulty in keeping up with my lessons. For him, it was nothing more than teenage difficulties and he advised me to work hard to solve the problem. I think that if I could have killed someone with my eyes, he would have died that day. This wasn't the whim of a young man rebelling against the education system and his parental role model. I was in a bad way, there was something wrong, I could feel it deep inside me. I spoke to my uncle about it and he simply told me to take my medicine and not to make a fuss. I had to remain dignified.
Two months went by. The pills that were supposed to set me free didn't work. I continued to cry in my room at night so as not to be reprimanded. My uncle couldn't stand any complaints and found it very to shout at me when the subject of migraines or my memory came up. My brother, on the other hand, began to worry and take things seriously. He saw me as I was; in pain. But he didn't say anything, didn't come between me and my uncle.
Until the day I collapsed in the middle of the living room. I couldn't say exactly what I was doing. I just fell from my height, unconscious. My uncle arrived in a hurry, having heard the sound of my fall. From what he told me, he was panicked and I have no trouble believing him. He called the emergency services and I woke up the next day in hospital. I think I'll remember my awakening to the end. Nothing was pleasant. I had a needle in the back of my hand, the light in that white room was blinding me, and I had an extreme headache. I closed my eyes again and suddenly felt like throwing up. I didn't make a sound for the first few minutes, but I could hear sniffles and murmurs. I opened my eyes again, turned my head and found my uncle and brother sitting in armchairs away from my bed. My brother was in my uncle's arms, crying. They both looked devastated. I hoped for a few seconds that this situation wasn't related to me, but it was obvious that it was. They saw a few minutes later that I was awake and my brother hugged me so tightly that I thought I was going to die in the next few days. It wasn't exactly like that, but the truth wasn't far off. When the doctor came into my room, with a detached but professional air, he asked me a whole bunch of questions: how I was feeling and how long it had been going on. I don't think my uncle ever forgave himself for not taking me seriously sooner. Of everything he said that day, I only remembered two words: "tumour" and "brain".
This is why my life had been terrible for several months now. In simple words, he explained that the tumour was located in the frontal lobe of my brain, in the front part, at the level of the forehead. It was this tumour that was causing my memory loss, my headaches, my lapses in attention in class and my malaise. The care team had carried out a whole battery of tests when I arrived, which enabled them to find out the size of the tumour, its exact location and whether or not the surgeon could remove it. Fortunately for me, the neurosurgeon assured me that he could remove it, but that I shouldn't waste any time as he didn't know how it was progressing.
My uncle signed a whole load of papers, the nurses paraded around my room all day preparing me for the operation. I didn't really have time to think about how I felt, to be scared or anxious. The staff were extremely kind and caring. I don't know if this is the case for all patients or if I was entitled to this treatment because I was a teenager with cancer. But it doesn't matter. I'll never forget the moment when the nurse came in and told me she had to shave my head for the operation. I really wasn't prepared for it and it was complicated to see my long black hair fall out. In a moment of shock, I realised the situation and all that it entailed. The conversation with the doctor came back to me violently. I had cancer, a brain tumour. I was going to have an operation, followed by chemotherapy sessions to 'definitively' eradicate any traces of cancerous cells that might cause me to relapse. I would then be monitored for five years, with appointments at least twice a year at the hospital, undergoing tests to check that everything was going well and that I wasn't falling ill again. If, during the five years, no sign of cancer cells is found, and everything is going well for me, I will be in complete remission, cured.
I was still a long way from that. At that moment, my brother was crying in the corner and my uncle was pacing up and down in my room. Then, finally, it was time for visiting hours to end. My family had left, promising to be there before I was operated on the next day. I spent a while thinking about it all. I'd known for weeks that something was wrong, that there was a problem somewhere. I could have had lung cancer, throat cancer, anything, but no, I had a brain tumour. And it was fucking frightening.
The next day, I was brought in without realising it. I was given a general anaesthetic and went to sleep praying that I would die if the operation went wrong. I'd never be able to stand being paralysed or not being able to eat, talk or look after myself. It would be too unbearable. I already had great admiration for these survivors at my young age, but I didn't want to be one of them.
I woke up and didn't know anything. I was alive but I didn't know what condition I was in. The operation lasted five hours and it's now 1.30pm. Everything apparently went well. There was nothing left of the mass. But I still had to have a few sessions of chemotherapy to be sure of completely eradicating this thing from my brain.
The chemotherapy sessions were horrible, I was exhausted, ill and depressed. At the same time, Icontinued to work on my courses, refusing to let myself live. I had a life to build. After that, everything went very quickly, the months went by, I stopped going for chemotherapy, my check-ups went well, but I couldn't claim victory too quickly. There were many times when I couldn't do anything, I was too exhausted, both mentally and physically. I was very afraid that one day I'd be told I had a tumour again and I'd have to start all over again.
In 2002, I was in remission. My cancer was gone. I cried a lot that day, as did my uncle and my brother. I finally allowed myself to let go, I thought it was all behind me, that nothing could stop me.
I continued my education and my future career was very clear in my head. I wanted to help people too. I, who had never really paid attention to other people before, now felt a visceral need to help them. I'd spent too much time sick, in rooms, plugged into a machine surrounded by people who were also plugged in. For some of them, I could gradually see the life going out of their eyes. For too long I heard a woman say that she no longer wanted this life, living dependent on her husband, no longer able to stand up without feeling dizzy, vomiting, swallowing drugs that did as much harm as good. I understood what she was saying, but I didn't want to ever have to listen to that kind of talk. Naively, I thought that as long as there was hope, you had to keep on fighting and put all your energy into it. So I decided to join them in this fight. I graduated with honours in psychology and went on to do a master's degree. I specialised in the study of the brain by taking a course in neuropsychology. I wanted to become a neuropsychologist, working in hospital and in a rehabilitation centre for people with brain damage.
In September 2006, I joined a London faculty. I was fascinated by the brain, with its ability to memorise heaps of information throughout our lives, to classify it, to eliminate the superfluous, to make certain gestures such as walking, speaking and writing automatic. It is so well organised that the slightest problem can completely derail the machine. Sometimes everything happens before birth, but it's often afterwards that disasters strike. Accidents, strokes, cancer. A single affected part of the brain can make a monumental mess of the whole body. A simple blow to the head can be fatal, causing a cerebral haemorrhage. The body functions, but the brain no longer has any activity. It's as good as dead and the person will never wake up. That's what I wanted for myself if one day something happened to me. I couldn't bear the idea of being one of the less fortunate and having one of my limbs paralysed, no longer able to speak, think or eat. Depending on the degree, all this can be relearned of course, but I didn't want and still don't want to be dependent, or not be able to do the slightest thing by myself. I don't accept being dependent on people. There's no way I'm going to ask anyone to get me out of bed, wash me or cook for me. I've been independent since I was very young. I wasn't brought up using other people, as many people think.
I was in the first year of a master's degree in neuropsychology. I wanted to know everything, to learn everything. It all happened very quickly. I had a work placement in a rehabilitation centre for people with brain damage, a dissertation project in full swing and my little gang of friends.
One evening, while we were out in a London bar, I met Wei Ying. He was a student at the same university, studying to become a French teacher. I wasn't particularly sad or morose, but Wei Ying came along and it was like a hurricane that came into my life. He spent the evening talking to me about studying French, France and his passion for the country. As for me, I was rather evasive about why I was studying. At first glance, he seemed very friendly and extremely cute, but he was still a stranger. I spoke passionately about the brain, its faculties and dysfunctions, but I carefully avoided talking about my cancer. Nobody knew. When people asked me "why are you so passionate about the brain", I simply replied that it is indispensable to us and that the work we put into learning every automatic gesture can be wiped out in an instant. Our memory is fragile and the brain can start from scratch. Everything would have to be relearned. This is called amnesia. And I think that's what fascinated me the most. In fact, it was the subject of my dissertation.
I then saw Wei Ying several times at school and he gradually joined our little group of friends. He was with us all the time, except in class. We became very close and spent a lot of time together, going to each other's houses. He quickly decided that my flat was a castle. One day, while we were at home watching some film, I told him about my attraction to men. Nobody knew, not my family, not my friends, nobody. It didn't bother me too much, I'd had a few affairs with boys when I was younger. Nothing very long or loving. I still think talking about it did me a lot of good. At the age of 21, I needed to tell someone that my uncle was at best never going to speak to me again, or at worst was going to disinherit me. He tried to reassure me as best he could, without much success.
For his part, he had also admitted to me his clear preference for men. But for him, everything had gone very well. He told me about his exes, his more or less passionate relationships, his one-night stands. We spent even more time together, if that was possible. We'd meet up for a drink, or for our lessons, or for a meal. Any excuse was good to be in each other's company. We got a lot closer without isolating ourselves from our friends. Moreover, our friends didn't hesitate to share their doubts about a potential attraction between Wei Ying and me. At the time, I had perhaps half-heartedly announced that I was gay and that I was not indifferent to him. The response was "Lan Zhan, we knew it".
I'm very fond of my friends. They've never forced our hand or come up with stupid plans to get us both into embarrassing situations.
As far as Wei Ying is concerned, I think we've both sent each other signs. Hands touching, deeper gazes fixed on particular areas, a strangely much more pronounced tactile side. One evening, we were walking along the quayside after a dinner in a luxury restaurant that I'd taken him to. We stopped to watch the world go by. He told me how much he had enjoyed the meal and how happy he was to be part of my life. I remember staring at him, first at those eyes shining with an emotion I couldn't describe, then at his lips. Without really thinking about it, I put one hand on his hip, the other on his cheek and leaned towards him. I didn't think he'd close the distance himself by coming towards me, but he did. He literally clung to me and I tightened my grip around him. We kissed until we couldn't breathe and then parted, laughing. I felt so good at that moment.
We revealed a lot to each other that day. Of course, we already knew a lot on the surface, but nothing about our visceral fears, our terrifying anxieties, our unmentionable, personal secrets. Exactly as if we'd always been in this carnal relationship, even though it had only been going on for a few hours. For the first time in a very long time, I felt good, there, in his arms. I'd told Wei Ying about the biggest ordeal of my life, ending up in tears, still shaken and confused by this story that had happened 10 years before. He gave me a big hug, telling me I was brave and that he would always be there.
Weeks and then months passed. I told my family about Wei Ying. I could no longer hide from them that I had an incredible man in my life and I wanted them to be happy and proud of me. I was very surprised by their reaction. They congratulated me and even asked to meet him. When I looked shocked and frankly disturbed that I wasn't being shouted at, or hearing crockery being thrown on the floor, my brother simply told me that it didn't matter who shared my life, if that person made me completely happy, that was fine with them. My uncle nodded and hugged me, and I held him as tightly as I could, enjoying him as I rarely did. He told me he was proud of me, of the man I had become. At that moment, it was just an uncle and his nephew. An uncle who sets aside his traditions and values to keep his young nephew, who was nearly killed when he was 11, as close as possible to him.
I returned home shocked and relieved, with an invitation to dinner on Saturday evening. Wei Ying, who had meanwhile moved into my castle, said he was delighted and honoured to meet them.
That evening was a breath of fresh air for me. My uncle and brother found my boyfriend charming. I couldn't have wished for anything better. I'd finally found a reason other than my future job to get up every morning. I'd passed my first year with flying colours. I only had a year left before I could practise and the best rehabilitation centres were already asking for me. I felt good, I was happy, but of course it couldn't last.
At the end of September 2007, it was like 10 years ago all over again. The dizziness, the headaches, the memory loss. I felt weak, so I naively took a vitamin cure. I didn't want to accept what I knew deep down inside. Of course it wasn't just a drop in energy. I could see myself going back ten years, with that headache banging into the walls, the fainting spells at university, whole chunks of lectures disappearing from my memory. I knew exactly what was happening, but rather than go to the doctor, I chose to ignore the pain. I spent a few weeks like that, with my condition deteriorating rapidly. Wei Ying was worried to see me in such pain and wanted to drag me to see a doctor. It was our first real argument. It hurt. So I went straight to A&E, on my own. When I told the receptionist about my symptoms and my history, I didn't have to wait long to be seen. I went straight for a CT scan. My heart was beating so fast, I thought it couldn't be happening again, it couldn't be happening again. I was supposed to be cured, the risk of a relapse was minimal. I waited about ten minutes in a waiting room full of people who were also waiting for their test results. I hesitated for a long time before sending a message to Wei Ying to let him know where I was and to ask him, or even beg him, to come and join me. I'm not the type to beg, far from it, but I was scared to death, shaking and in a cold sweat. Finally I did. He joined me ten minutes later, all out of breath. He hugged me so tightly I thought he was going to break a bone. I was then quickly called into an office to see a surgeon. It's amazing how well you recognise these people. White coats with their names embroidered on them, pens in their pockets and, above all, a serious look on their faces.
I could only take one step into the bloody office, my gaze directed at the x-rays laid out before I burst into tears, the object of all my fears displayed on that board. Wei Ying tried in vain to comfort me, not really understanding what was going on. The surgeon got up and explained the situation to her before turning to me. I don't think I'll ever forget his words: "Sir, your recurrence of the tumour is worrying. You mustn't waste any time if you want to remove it completely. It's also more aggressive and growing fast. It remains localised to the frontal lobe, but there is a risk that it will spread rapidly. The procedure is not really complicated, it's just urgent".
Wei Ying was completely lost as I cried in his arms. Was he supposed to break down with me, or was he supposed to be strong for both of us ? I was admitted to hospital that evening. I filled out a lot of paperwork, including one in particular that made my boyfriend scream. I'd filled in a request for non-treatment, in case anything happened. If I went into a coma, if I had a heart attack. There are always a lot of possibilities in this kind of case. I didn't want to end my life like that. It was out of the question. If my time had come, then you had to let me go.
Meanwhile, Wei Ying was telling my family and our friends. My uncle and brother were coming, and he needed direct support, as well as our respective friends, for when I wasn't well. I was going to have very low phases, terrible dips in morale. When I was 11, I even said to myself that maybe things would be better if I didn't exist. That's what I always thought, except that this time there's Wei Ying. I didn't want to let this thing get me down, not now that I'm happy in my life.
My uncle and brother arrived fairly quickly. My brother threw himself into my arms, in tears. My uncle came over and hugged us, without saying a word. That déjà vu feeling was really horrible to begin with, but for this kind of shit, it's much worse.
The surgeon soon joined us, explaining what was happening and what was going to happen next. I learned that I was going to have chemotherapy sessions, in higher doses and more frequently than ten years ago, and this was already synonymous with a nightmare for me. At the time, the chemotherapy hadn't worked at all for me and I was already beginning to fear the worst for the future.
I was operated on first thing the next morning, for 6 hours. I opened my eyes at 3pm and faced my family and their worried looks, as well as Wei Ying who looked terrible. Everything had gone very well, there was nothing left of the tumour. With the chemotherapy sessions, there was very little risk of recurrence, supposedly. They went relatively well, but the effects a few days later were terrible: vomiting, dizziness, faintness, dizziness, intense tiredness and a desire for nothing. I shaved my head again on my own in my hospital room, and Wei Ying helped me. He was extremely present during this period. I contacted my training manager to explain the situation, and he was terribly sorry too. After a discussion with the director, they authorised me to follow the distance learning courses so that I could continue my studies. My friends took the courses for me, the teachers were available if I had any questions and my course timetable had been adjusted to fit in with my chemotherapy sessions. It was a harsh winter, so I had no trouble hiding the fact that I had no hair in the street.
Wei Ying was extraordinary, he never gave up, even when I spent all my time being hateful and blaming him for everything. I felt so guilty. He was with me every session, every X-ray, every check-up. He put his studies on hold at the same time, continuing them from a distance so that he could stay with me.
I fought for over a year to get rid of it completely. I began a long process during which I was terrified at the slightest dip in my performance. In the meantime, I graduated with honours, as did Wei Ying. We celebrated with our friends. It was a simple little evening, which did us a lot of good.
I spent days in my boyfriend's arms, doing nothing but cuddling and sleeping. A more normal life resumed. I found a job in a well-known rehabilitation centre, while Wei Ying went to university to teach French and work in a secondary school at the same time. When I announced my complete remission in 2013, Wei Ying asked me to marry him with a statement that was dripping with silliness, but which, deep down, touched me deeply. I sincerely believe that certain trials in life change people. I was definitely different from the cold and distant boy after two brain tumours. I'm well placed to say that life can change at any moment because of a simple dizzy spell. I let people into my life. A year later, we said yes in front of our family and friends. The ceremony was magnificent. Wei Ying looked stunning in his grey suit. I was in white. My long black hair half tied up in a complicated style. I'm very reluctant to cut it any more.
It was magical. We were on our honeymoon in New Zealand for two months. We decompressed from all the hardships that had unjustly fallen on us. We didn't want to go back, but we had to.
Life went on for a few years, we were in love, happy, well surrounded and owners of a magnificent house. Wei Ying was now teaching at Oxford, and I at the best brain injury rehabilitation centre in the country.
I let the world come to me and I took part in great things, I saw the most beautiful works of art in the world and we travelled a lot. We could already see ourselves old and happy in our house, deep in the English countryside, taking advantage of our retirement to travel all over the world. But then our dream came crashing down.
A few months ago, in October 2021, I suffered a violent epileptic seizure while at work. I was rushed to hospital and diagnosed. A third tumour, right in the middle of the brain, inoperable, aggressive, devastating. The best neurosurgeons in the country and the world took a look at my case because of my name. They all tried to come up with a plan to save me, they all saw me waking up after the operation, and that was that. But I see further than just waking up. I see the biggest flaw in everyone's plan : life after the operation.
None of the plans would give me my old life back. All of them guaranteed that I would be dependent on my husband, my family, or some ordinary person who would come to my home every day for several hours at a time. The impossibility of working, possible amnesia, possible inability to speak, to move, to think. Is this the life they wanted for me ? I didn't agree. So I refused all the plans, all the operations. Wei Ying, knowing my opinion on the subject, didn't try to change my mind and I can't thank him enough for that. My uncle and my brother fought so that I would accept the least risky operation, the one that would give me a life as close to my own as possible, but I don't want that. Yet another tumour won't ruin my life.
So the surgeons explained that as well as refusing operations, I didn't want high-dose chemotherapy five times a week, so there was nothing they could do for me. The tumour would grow and gradually engulf my brain and its mechanisms. I would experience severe headaches, dizziness, fainting spells and epileptic seizures. Eventually, it will affect areas related to language, speech, hearing and memory. It will take away my memories. This is called the terminal stage. It's when the disease takes away everyone you get close to. So I decided to take action before I reached this famous stage, which they said would be rapid given the position of the tumour.
Today, 29 January 2022, I'm 36 years old. Two days ago, I said goodbye to my friends and family. My brother was devastated, but deep down I know he understands. My uncle told me that he loved me, that he was proud of me and gave me a big hug. They both cried a lot. I cried a lot too. I tried to reassure them that I wouldn't be happy otherwise, that it was a choice. Our friends didn't really react any better. There were a lot of tears and it really hurt me to hurt them so much.
Wei Ying is different. He understands, he accepts, but he's terribly sad. Even if he doesn't say anything, I can feel it. It's horrible to know that you're making the man you love unhappy. When I told him what I wanted, he respected my choice like no-one else. We made the most of our few weeks of respite, of peace and quiet, putting off the deadline.
So here we are today, in Belgium, on a magnificent estate. The air is pure and cold. I'm wearing my navy blue shirt, Wei Ying's favourite. He's sitting next to me in an armchair, stroking my hair. He's trembling. I think he's scared. Afraid of being alone, afraid of living without me. I made him promise not to mourn me for long, to build a life without me and to wait until he's at least 80 before he hopes to join me. I'm fine. Surprisingly, or perhaps selfishly, I'm not worried. I'm happy for my life to end here, as I've decided, with dignity, with full awareness of my actions, with full autonomy.
After one last kiss, one last "I love you", one last smile and one last caress, I press the button that will release me from this life promised to be so full of suffering. Then I close my eyes, with the image of my husband etched in my retinas, and I feel myself leaving calmly, almost peacefully.
On this 29th January 2022, accompanied to the end by the man I have loved so much, I leave this world before the final stage.