Ten days after I was diagnosed with HIV I had to pick my Dad up from the airport. My condition was advanced, but I suppose I was in shock, because I was fixated on maintaining my normal routine. I wasn’t planning on telling my father anything. In Nigeria, where he’s from, we don’t talk about HIV.
It was a very bright, sunny day, and we decided to take a taxi back to my house in South London. I was sitting in the front seat, looking up through the sunroof at the sky when I started to feel that my body was bubbling. The sensation started in my toes, and moved up slowly through me in waves. By the time it reached my head it was so intense that I felt I had to open my mouth to let the bubbles escape. In the months leading up to my diagnosis every day something changed in my body: my hair fell out; sores opened in my mouth; I would cry without knowing why. It felt like I was falling apart. As I looked up at the sky in the taxi I had a feeling of unification. I exhaled and the bubbling went back to my toes, and as it rose again through my limbs it struck me very suddenly that I was going to die. My body was transforming because I was going to die that night. It was understanding beyond thought – I had never been so sure of anything in my life. And the strangest thing was that it was joyful. All I could think about was that I had to tell people how fantastic it was to die.
I didn’t want to frighten my father, so for the whole evening I tried to behave normally. In bed I sat up writing letters to my family. I wanted to tell them that I was going home, and that to die was the most wonderful thing. As I went to sleep I felt so excited, so sure.
Waking up the next morning was crushing. I was back to uncertainty, but in a new way I felt strong. It was like starting life all over again.
*With early treatment, effective treatment and support, HIV is now a manageable long-term condition.
I walked home from work in the sticky summer heat, my dress steadily rising up my thighs, the sequins rubbing against my sweaty skin. I saw a man smoking weed outside a barbershop in Kentish Town. I let my eyes catch on his for a while. He followed me up the road, where he told me he was a prophet as we stood beside a bin and I smoked some of his weed, still with the scratch of my manager’s stubble on my upper lip. I arranged to go to the prophet’s house the following day. Waiting for him to pick me up outside Hendon station, I felt afraid and unsafe. When the car door opened and there was another man sitting beside him in the passenger’s seat, I relished the fleeting but terrifying thought that something awful might happen to me. I was comforted by the normalcy of my fears. When I arrived at his flat unscathed, I was relieved that the other man stayed in the car, and delighted when we got to the door and I felt wet lips against my neck, breath teasing my earlobe. Turned on, anxious and unsure made a change from being empty, hollow, and consumed by a strange, thick darkness I had never known before. I undressed my sadness as I undressed myself. I peeled back my dress and undid my bra and my grief came off me like skin off an onion. I was raw and fresh and naked. When I stepped back into my own life the next day, I didn’t think about my brother dying anymore. I didn’t run through the moments before he stood alone on a slip road, miles away from home, and collided with a car while he desperately tried to wave it down with his white shirt. I didn’t think about him lying dead on the hospital bed, or consider that I would never see him again. I only thought of my shame, of the cum still stuck in my hair, and those thoughts gave me something else to think about.
I am an at-home mum of two. My son is a tantrum-prone toddler. My new baby daughter has colic. It is winter, and I am in my deepest depression for years, age 25 years old. I haven’t seen a doctor since my six-week postnatal check, but I decide it’s time. We only moved a few months ago, so I have yet to meet my own GP. I phone for an appointment and take the first one offered, which leads to me seeing a nice woman who seems like she genuinely wants to help. Quietly, I tell her that I feel that I am not really here. That I know my body is here, but I don’t feel like my actual self is, because it’s floating somewhere above us. “Oh”, says the doctor matter-of-factly, “that’s called depersonalisation. Some people feel like they are connected to their body by a kind of cord.” I am astonished. Other people feel this? Other people’s bodies walk through space, while their true selves follow behind them on a golden cord, like a helium balloon on a string? The female GP makes me an appointment to see my own doctor, Dr. M. Over the next few months I see Dr. M regularly, usually weekly, and try a variety of anti-depressants. The floating, out-of-body sensation doesn’t trouble me so much anymore, but it has been replaced by the sense that I am fading away. I don’t quite feel invisible, but I am certainly transparent; people who know me can see me, but out in the street I have a definite sense that I go utterly unnoticed. I push my buggy between my house and the doctor’s surgery, and no one looks at me or makes eye contact. I try little experiments, like walking too close to people to see if they will respond, but it feels like they brush against me with no reaction or acknowledgement that I am even there.
I moved to New York a few summers’ ago for a job. At work one day I was secretly snacking at my desk when I choked on a segment of orange. Luckily my boss knew how to perform the Heimlich manoeuvre.
Over the next few weeks I started having trouble swallowing. I became hyperaware of the passage of food down my throat – every time I ate it felt like something was stuck. Meals took hours, as I forced myself to chew each mouthful hundreds of times, terrified of choking. I would frantically check my nails for the blue tinge I had read about online that indicated a blockage of the airways, and sat up late into the night, fixated on the pattern of my breathing.
One day, after convincing myself I was asphyxiating on a piece of pickle, I caught a cab to A&E. Sure that the window for resuscitation was closing, I pushed to the front of the queue, and forced doctors to give me a round of consultations and X-rays, racking up $10,000 in hospital bills. Eventually staff had to ask me to leave.
After that things got worse. I became obsessed with the idea that I wasn’t just choking – my body had actually forgotten how to breathe. I forced myself to focus on every breath, terrified that if I let my mind wander for even a second I would suffocate. Going to sleep was out of the question. I knew I couldn’t cope any longer, so I packed up to go back to London. The flight was terrible – I counted every breath I took for ten hours. Back home I couldn’t bring myself to see any friends. I spent my time Googling symptoms, and visited A&E a further five times in two months. Thankfully, because of the NHS, I wasn’t left in thousands of pounds’ more debt, but looking back now, I cringe at the thought of meeting any of the doctors who ‘treated’ me again.
lllustration by Lea Dohle
Read the full feature in the Mind Issue, now available for pre-order.