For Sara, the past year of her life has certainly been a tumultuous one. After going through severe meningitis, not once but four times, and developing epilepsy, she’s learnt about what truly matters to her
It was Christmas Day. I was walking around Old Town in Stockholm when suddenly it felt like my head, neck and spine were about to explode. I rushed home, and went straight to bed in complete delirium, when my roommate found me and instantly called for an ambulance.
In what felt like mere moments later, I found myself in intensive care, diagnosed with severe meningitis and encephalitis – an hour later it would’ve been too late, the doctor said.
I only remember fragments of what happened. Having my blood pressure taken and feeling like my arm would burst. The agonising lumbar puncture. And finally, when I stopped breathing. I could hear my mother’s voice calling my name while clawing my arm, trying to wake me up.
But I didn’t.
The following three days, I was stuck in a nightmare on a loop. I was being swept through landscapes and obscure underworlds where my loved ones’ faces would be distorted into demonic figures, trying to take me with them to a ‘better place’. I had been put under a medically induced coma.
Photography | Kari Jay
When I woke up, I was still in bad shape and had to spend the next two and a half weeks in the hospital on medication and under constant observation. I never knew how much I had underestimated walking my dog, or doing the dishes. After what felt like an eternity, I was finally allowed to go home.
I’ve never been a person who is good at taking it easy – even three or four parallel projects make me feel restless. And now I wasn’t allowed to stimulate my brain, or actually do anything. Not even read a book, just rest.
I tried my best to do so. I left my dog with a friend. I planted seeds in my kitchen and I watched them grow.
I had home visits from the rehabilitation centre three times a week. That was it. It drove me absolutely crazy.
Three weeks after I left the hospital, it was my 28th birthday, and my sisters took me out to celebrate. I hadn’t been very social for a long time, and I was happy to leave the house and just feel like things were going back
to normal.
That same evening, my sister and a couple of friends came back to my house and we stayed up for a while and talked.
Beep… Beep… Beep…
A familiar noise.
Beep… Beep… Beep…
I was back in the hospital. I was told I had some kind of seizure and blacked out, so my sister called for an ambulance.
What I initially thought would be the first and last time, was actually just the tip of the iceberg.
The meningitis was back, but this time I was also diagnosed with epilepsy – a result of my first infection. I was back in treatment for only a few days this time, before being sent home again.
Realising how many people actually care, and how much your body and mind can endure – it’s all incredibly enlightening
Over the course of the following month I experienced regular seizures, and my spirit was gradually sinking. My temper had changed – with blackouts, emotional breakdowns, and complete fatigue.
I stopped drinking as soon as I knew about my condition, became vegan, took every supplement I could, and was on several types of medication. My body and mind were a mess.
In March 2018, the third wave of meningitis came. This wasn’t ‘supposed’ to happen. I felt desperate. I didn’t know who I was anymore. The doctors didn’t know what to do.
My whole persona was based on always being on the move, going on adventures, being creative and social. Now, all I felt was apathy. I couldn’t eat because of the all the medication. I didn’t want to see anyone. I told people to stop calling and texting. I isolated myself.
Shortly afterwards, I was put on antidepressants and began having cognitive behavioural therapy. Another month passed, and I was still hiding in my apartment that had started to feel more like a prison.
During my next checkup, the doctor wanted to do a final lumbar puncture, just to just make sure there were no active cells left. She called that same afternoon and said: “Sara, I need you to check yourself in again…”
It was my fourth wave of meningitis. This time around was by far the worst time of them all. Shuffled through different wards, CAT scans, EEGs – test after test, seizures, no sleep, and more seizures. I spent two more weeks in the hospital, and was put in touch with a specialist who finally seemed to have some answers. We kept in touch, and I still go to her for regular checkups – and so far, no more relapses.
I’m slowly coming to terms with what actually happened over the past year, wrapping my head around being so close to death, and being robbed of my identity and freedom.
Photography | Kari Jay
But also realising how many people actually care, and how much your body and mind can endure – it’s all very overwhelming, and incredibly enlightening. I feel like I’ve been so incredibly lucky. Epilepsy, and all that comes with that, is a small price to pay for your life.
I really do believe that things happen for a reason. You might think it sounds like a cliché, but all things – good and bad – dictate the path you should be on. And I know now I wasn’t supposed to bend over backwards to prove something, or to please others. I was supposed to lose myself, and the people who then left, they were always going to be temporary.
Instead, I made room for a new self. I started taking serious care of myself, both physically and emotionally. I stopped doing things that made me unhappy. I pursued the things I wanted to do rather than listening to judgemental and toxic remarks. I sought out support with people in similar positions, and got so much love back. I learnt that ‘no’ is the best word in the world.
I wrote and recorded music during my time being sick that ended up being my debut album Paroxysm, under my stage name STEELE.
‘Paroxysm’ means ‘an outburst of emotions’. I guess that kind of sums it up. Being a musician, I know I’m bound to encounter all of the stereotypical situations like parties, alcohol, drugs – basically everything that’s bad for my condition. But I somehow have this sense of empowerment by my anti-rock star approach to be honest.
Not only do I feel like a better person, but it has certainly added depth and substance, to both my behaviour, as well as my music. And all of this happened just a few months ago – imagine how I’ll feel in a few years time?
Fe Robinson | MUKCP (reg) MBACP (reg) psychotherapist and clinical supervisor, says:
Sara tells a harrowing story of a recurring, life-threatening illness that turned her world upside down. It is inspiring to read about the way she has made room for her deeper self and is investing in relationships and activities that enrich and nourish her. Her story is a reminder of the importance of mindful attention to the gift of life and health, and the rightness of trusting our wisdom about who and what we find fulfils us.
