In the Absence of Light
by Niko Suvisto
You are swallowed by the pitch-black darkness, lying in your bedroom, isolated from the world. All the windows and the door are barred shut — not even a glimmer of light makes its way to the room, for even that would be too much for you. Your ears are covered because sounds pierce through you like knives to a wound. An eye mask doesn’t just cover your eyes — it protects your whole existence, as light sinks you deeper into the abyss. If you’re lucky, you still have your thoughts left. They revolve around memories, as there is no future in sight.
To an outsider, everything seems peaceful — it looks as if you’re simply asleep. In reality, you are fighting for your life every single second. You have been buried alive. Your head is submerged — how long can you hold your breath? Every movement is a risk, every thought just millimetres from the edge.
You wish you could scream in agony, but you know it will only make things worse. Holding yourself back is painful in an entirely different way — every emotion has to be suppressed, because processing them is physically too much for your body. As you start to panic, you tell yourself you can do this, just stay calm — but all you really want is to cry, wishing someone would hold your hand. Even then, a human’s touch is not an option — you probably can’t even tolerate another person’s presence in your room.
Every cell in your body has withered — your body has simply shut down. Too aware of how much precious energy the vital functions consume. Your hearing and sight have already been halted — your mouth is completely dry, starved of words. What else can be cut off? You can barely swallow liquid food, and your limbs feel like lead. Your thoughts are distant, just flickering mirages.
You cannot sleep, even though you want to, so you lie awake every night. If you do fall asleep, that poor-quality rest is the only moment you get to breathe. You wish it were eternal, that you wouldn’t wake up again. At the same time, your will to live has never been stronger — your instincts take over.
Seconds feel like minutes, minutes like hours — days stretch into months, and months into years. You wait for the world to recognise and acknowledge your illness — even to find a cure. Just knowing you are waiting for a miracle — one that might take an eternity.
You have very severe ME/CFS.
Losing the Light
14 January 2022
My father passes away from cancer — the grief takes its toll on me.
24 March 2022
I get a COVID-19 infection, and it begins to hinder my ability to recover from exertion.
16 May 2022
4 June 2022
Kela denies my application for sick benefits, leaving me only 30 days to appeal. This is my final straw, and I spend two to three devastating hours finalising the appeal.
7-8 June 2022
I start to feel very unwell before going to sleep. I lie awake for an hour when all the symptoms crash over me like a storm. I feel like I might die that night. Lights flash in my eyes, and a vicious stabbing pain flares between my left ribs. I feel poisoned to death.
For hours, all I can do is stay completely still and concentrate on breathing, hoping I can weather the storm — wave after wave.
Eventually, I fell asleep.
The next day; I can hardly move at all. My body has completely shut down — just overnight.
24 June 2022
1 July 2022
Due to my declining health, I had no choice but to move to another city, to live at my mom’s place — she’s the only one who could take care of me. There were no other support systems available to help.
A friend comes to pick me up. Getting me into his car is a mission in itself. I travel lying down in the trunk, which is a huge risk, but there’s no other choice. I think I might die during the trip because of my severe symptoms, but I survive.
24 July 2022
My relationship of seven years ends.
31 July 2022
I make one mistake: I cry, only for a second. It’s too much for my body to handle.
1 August 2022
I start to deteriorate again, and I can’t stop it. I try my best to survive, but each overexertion leads to a permanent worsening.
7 August 2022
I make another mistake: I panic, I am afraid of how things will turn out. In my panic, I start talking to my mother. That’s it. I deteriorate again. Every hour is worse than the one before. There’s nothing left to do — just a steady spiral downward.
15 August 2022
My condition gets even worse. My mom calls an ambulance. When the paramedics arrive, they say they don’t know anything about my illness — that there’s nothing they can do for me. They refuse to take me to the hospital.
One of them says, ‘A man your age can’t just lie in bed like that.’
11 September 2022
4-5 October 2022
A worker from home care services comes to assess my situation. They recognise how serious my condition is and call an ambulance. They promise I’ll be taken care of at the hospital — that I’ll finally get the help I need.
I lay in the ER for the entire day, surrounded and tortured by lights and noise. Eventually, they tell me there’s nothing they can do — that I need to go home. One nurse takes me to a side room so I can sleep for the night. Early in the morning, they sent me back home.
12 October 2022
24-27 October 2022
My doctors say my case is non-urgent. Eventually, I’m admitted to the neurology rehabilitation department of the hospital. I am assured that I’ll have my own room and that the lights will be kept off.
They don’t keep their promises. They don’t even read my file. One nurse deliberately turns the lights on. The door stays open because the department’s doctor insists on it. I beg the nurses to close it out of kindness, and they do.
One doctor does all he can to ensure I can start a treatment. Very slowly, I begin to feel better.
Turning Towards the Light
17 November 2022
18 November 2022
24 December 2022
25 December 2022
31 December 2022
1 January 2023
10 January 2023
27 January 2023
1 February 2023
9 February 2023
18 February 2023
16 March 2023
17 March 2023
30 March 2023
7 April 2023
9 April 2023
The Light Returns
This was the hardest moment of my life, and honestly, it hasn’t been easy to look back.
It took me three years to process it, and I’m lucky I escaped it. I was prepared to die eventually — without even knowing how it would happen.
By starvation?
Organ failure?
Who knows.
I’m just grateful we don’t have that answer.
I will carry the scars with me for the rest of my life: the ones created by mental and physical torture, and neglect by the healthcare system — even abuse by them.
There’s a fundamental trust that — in a moment of great danger to your life — there will be people who protect and save you. You’d think it would have been the healthcare system, but it wasn’t. It was my loved ones. My mother kept me alive until one doctor went against the grain, doing what the system is supposed to do — save a life.
Right now, my life isn’t great in the grand scheme of things, but it’s still so much better. The light has returned to my life in many shapes and forms. It casts shadows on my room’s walls, reminding me that it was always there — it just couldn’t reach me in that darkest hour.
About the Exhibition
In the Absence of Light is a photographic essay documenting a period of very severe ME/CFS in photographer Niko Suvisto’s life. The photographs were taken in 2022 and 2023, and the exhibition was fully completed in 2025.