There is blankness in place of memories. There is nothing in spots where something should be, not even a hint or glimpse. I have never been able to grasp that nothingness, and I have never been able to make sense of it. All the years and dates mentioned are approximations. I am still determining how close or far apart most of these events occurred.

The white walls were on the verge of being reflective. They glared and burned holes in my retinas. I hadn’t been in this place for years, my mom made sure of that - no evil chemicals for you, my darling. I guess it hadn’t worked. I was there regardless.

Guilt has a way of seeping in. It forces relationships to evolve into a draft feverishly rewritten. I hadn’t known my mom before I truly learned what it meant to be alive. It hadn’t felt like life then; it felt as if I’d died before turning fifteen.

It started much earlier when I first became acquainted with that flesh-sharing presence. At eleven, I woke up with bone-eating pain, barely staggering out of bed, and worshipping wrist and knee bandages with prayers of constant wrapping and unwrapping. It had a ritualistic nature. The placebo effect of seeing my joints warmly snuggled in white must have helped, and the buzzing quieted. Periodically. Going bowling, being forced to walk with straight legs, and laughing at the absurdity with my friends. Then coming home and crying because I could not get in the bathtub - haplessly wondering why my legs wouldn’t bend. I told my mom. We got some medication recommended by a chiropractor - standard for growing bodies. The pain went away. At twelve I woke up with stiff, swollen fingers glued together, unable to make a fist or hold even a pen. I went to my mom and she told me to exercise more, so I did. At thirteen I followed Chloe Ting on YouTube, constantly took progress pictures, and hoped for those magical fourteen-day abs. I didn’t quite get that, but unexplainable tiredness could be considered a fair trade. I could no longer hold a high-plank position. It felt as if something kept taking hold of my hands and lifting them. I kept falling, face squished against the ground. Growing pains suck.

I did not know yet that pain alone would become a sort of solace. The so-called saviour in the form of medicine would become my worst nightmare instead.

It was the summer of 2021, and I was not yet fourteen. My grandma’s house is a sprawling property. It is green, vibrant, and stunning. One could spend a week simply wandering through its nooks and crannies, gazing at the moss-covered ground. There are two ponds and two main houses. As a child, I ran through the fields with my cousins and went on hour-long bike rides with my grandparents. I used to take hurt birds and nurse them back to health. I used to collect butterflies, and tiny frogs, and mice. I used to swim as much as I walked. This summer was different.

I spent my days sleeping until midday, reading, and sleeping again. Everyone kept telling me to go outside, but I couldn’t. And my confused underdeveloped brain matter couldn’t explain it either. There was just something that was holding me down. One day my grandma asked to go on one of our usual bike rides. And I tried. I went outside and got on the bike. No movement happened, no kinetic energy revved its engines - my wrists simply gave up. They were not mobile enough to hold the weight of my body and so I fell. When I told my grandma, her counter-look is one I’ll never forget. Back then I thought it was disbelief. Now I know it was fear.

She told my mom something that made her finally act. We went to an osteopath. My discoloured and blemish-stricken fingers and toes caught her eye first. She pulled some strings and finally, we had an appointment with a rheumatologist at the children’s hospital.

We’re back to those white walls. Do they tell a different story now?

We arrived superbly unprepared - no blood tests, family doctor referrals, no idea of what awaited us. At the register, we argued with the woman in spindly glasses. In the distance, I heard echoes of my name. I thought I was hallucinating. In reality, it was my doctor calling us - ten minutes early. We missed that call and sat in the squeaky plastic chairs, teeth clenched. I was cold, my fingers blue and numb as always. Then the rude awakening got tired of waiting and we had to walk in.

It’s sort of funny how quickly it all happened. She asked me to undress and do the basic protocol - bend my wrists inwards, and outwards, stand up, squat, bend my knees, put my hands behind my back, and touch. My fall from the warm embrace of ignorance came when the doctor, with poorly concealed shock, finished the examination and said: “This is the worst case I’ve seen in the last twenty years,” and a second later - “Don’t fret”. Ha. Comedian-level delivery.

Arthritis was obvious, but the degree or other affected organs - not so much. My vision was blurry. I had never been good at keeping myself from crying.

My mom was shaking, which was unusual. She was never afraid anymore - being a widow and a single mother does that -, but she was then. Her leg going up and down, up and down. I got lost in its rhythmic nature. Not for long. I snapped out of my quiet reverie when I heard distinct mentions of my name. “She’s already 14, a big girl, of course she’ll stay alone.”

That’s when I realised I did not have the luxury of being a child anymore. I could not leave any serious problem to the adult, the authority, and jump rope away. I was sentenced to two weeks in the hospital, alone.

That day when I walked outside, the harsh autumn air biting my cheeks, the tears fell freely. I felt that familiar tightness in my chest. The harsh sun kept beaming in my eyes, I couldn’t escape it no matter which direction I turned my gaze. I looked down and tried to focus on the crunch of the multi-colored leaves.

I don’t remember close to everything about my stay at the hospital. Just the first room - a small boy, limbs contorted, screaming in pain. I had to sit and try to study as school didn’t stop because of my woes. Mom left after a bit. She said it was too mentally taxing. I was moved to another room soon. There was another teenage girl there, who instilled an anti-homeopathy mindset in me, which I later poured out on my mom in multiple fits of anger.

I recall being woken in the middle of the night and taken for blood tests. They could not find the right veins and jabbed the needle in over and over on both sides of my wrists and later - palms. I had never been afraid of needles before. The strong smell of alcohol hit me - the nurses were holding a cotton pad soaked with it under my nose. I was given an anti-bruising cream later. It was thick and stuck both to my clothes and bedsheets.

I had to go to every specialist possible for the diagnosis with the highest degree of probability. I was asked for my national identification number. I did not know it. If I had just looked down, I’d seen it on my plastic wristband in black, bold numbers.

Another day I had to wait for a nurse. She rushed out and grabbed my hand, pulling me towards a taxi. We got in and soon enough arrived at another hospital for extra testing. I hadn’t managed to put both socks on.

I went to the old, ratty showers every night with my electric toothbrush, toothpaste, and body wash in hand. It felt like the one sign of normalcy. My reflection peered at me from the dark windows. It did not seem to know me.

At one point I had a catheter. I felt the cold fluid going through my body. They eventually had to reinsert it. A pronounced white scar still stands on the inside of the elbow of my right arm. I did not know what they were injecting into me.

My mom came to visit me only once. I understood why. The sights the hospital offered did not come with kind memories for her. Especially me there. She brought me a homemade Snickers bar from the bakery next to our house. I put it in my drawer for harder times.

The time came for me to be discharged from my cosy, sterile room. The doctor had a stack of papers and told me and my mom everything we ought to know. From the get-go it had been clear I was chronically ill. Just not how irreversibly. At that moment I first heard the name of mixed connective tissue disease. It would make my life much more difficult in the future, being a combination of multiple hard-to-treat illnesses. She told us all of the medication and all of the next steps. She said I would be cured in two years. I started to feel hot and cold at the same time. Freezing sweat ran in rivulets down my back and colours blurred around me. All I heard was buzzing. Hands were seizing me again and pulling me towards the bed. A glimpse of Mom’s face: “It’s time to go”. At last, I escaped fainting in the hospital once more.

We went to the pharmacy and got the drugs. The main ones are methotrexate and medrol. One to kill my immune system enough before it kills me and the other - to take away inflammation. One is known to treat cancer.

There’s a wonderful bundle of symptoms when corticosteroids are registered in the body at high doses for long periods. It is usually recommended to take them for three months or less. I was on them for eight. Sometimes, I’m glad my doctor didn’t explain just how severe the side effects would be, it gave me an illusion for a while. Other times, I know I’ll never trust her again.

7 am, 11 am, 1 pm. Every day three alarms sounded. My sleep became disrupted and lacking. I’d wake up, carefully count those small, white tablets, and swallow. Once, twice, thrice until it finally went down. By the time it did, my mouth was acrid and pungent. The methylprednisolone clung to my squamous cheek cells with a vengeful strength.

I remember noticing a slight difference in my face a month after starting my new medication regime. I ran to my mom, scared, but she put it down to being nothing. I obsessively took pictures, scanning every part, comparing, comparing, and comparing. Somehow I forgot about the existence of Google.

In retrospect, Google would have told me what I found out anyway - stretch marks, vomiting, heartburn, headache, dizziness, trouble sleeping, appetite changes, blood sugar rise, increased sweating, acne, unusual weight gain, menstrual period changes, bone/joint pain, easy bruising/bleeding, mental/mood changes (such as mood swings, depression, agitation), muscle weakness/pain, puffy face, slow wound healing, swelling of the ankles/feet/hands, thinning skin and hair, unusual hair/skin growth, vision problems, fast/slow/irregular heartbeat, symptoms of stomach/intestinal bleeding (such as stomach/abdominal pain, black/tarry stools, vomit that looks like coffee grounds), red/purple spots on the skin, may make you more likely to get a serious (rarely fatal) infection.

This is only a partial list of possible side effects.

But for a fourteen-year-old girl, the stretch marks and unrecognisable changes to her face were the biggest worries. I tried all the creams and oils and remedies. Gua-sha was my expected fairy godmother - except she forgot to do her job. The horrible but simple fact was that this was not natural and would have no natural cure. Only the last drops of that bitter substance expelled from my body would help.

The picture on my passport was taken during this time. People always ask why I guard it as if it’s my first-born child. I do not think anyone could understand the fear that once they see that version of me, that will be all they ever see. So I clutch it to my chest and say it’s just a terrible picture. Or say nothing at all. Silence ensues.

I became distant and cold. I could not bear to look at myself or let others look at me. My whole family talked to me like I was a jittery animal. Everyone around me was discovering their identities and finding themselves, shedding their old skin and smoothly gliding into its better version. I was frozen in time.

One day I came home from school, head down. Opening the door, I saw my brother’s friends in the living room. I rushed to the bathroom. The balcony window was open. Everything was dark. The moon cast its silver glow on my reflection. She did seem to know me this time - and resent me for it. I undressed. Before I got in the shower, the large mirror caught my gaze. I stood there, still, for some time. Everything pulsed. My nails scratched my skin, everywhere they could. I wanted to take it off of myself, climb out of myself. I thought of the moon then. She called me to her harsh peace, but I was not brave enough to accept the offer.

I hate hearing how beautiful I am now, it feels like a cruel joke. I persistently take selfies every day as if there’s still a chance I’ll have reverted. I rarely smile in these photos, because I feel it makes my face appear wider. I don’t have the usual expectations of what is beautiful or appealing - to me, it is merely everything that does not make me see who I used to be.

Recently I went to another of my regular checkups at the hospital. The same cabinet - teddy sticker on the window withstanding. The doctor told me I’d have to go back on that medication. It’s a constant, cursed loop. Nothing new ever occurs. I don’t get worse, but I don’t get better either.

A friend asked why this was the time that hit me the hardest. The response stopped its path in my larynx. At times like these, I feel stuck. Like I’ve decided to warp into my abrasive joints. With each scratch, pop, and ‘click’ sound a new memory pops into place - a scene.

Eventually, the eight months did pass. For most of the symptoms to let themselves out another six had to follow. I’m slowly relearning who I am, but now and then I grieve her - the fourteen-year-old girl, so full of life - as I know she’s gone for good. I grieve that I was involuntarily made to understand. I hold a lot of resentment, and I think I always will. I resent my family, friends, and the world itself; the question - why me - will stay forever unanswered. I’ve learned to separate my anger. Into divisions. The anger that fuels me, and the anger for which the only purpose is hindrance. I try to ignore the second kind. I take my life and pain for what it is - I’m not pretending I can do anything anymore, but I am also not underestimating myself. Some days suck, but, mostly, I hold strong to the opinion that life is a privilege. And I am lucky to be here.

It is the autumn of 2024. I walk the cobblestone streets, hands still purple and cold. But now, when I take them out of my pockets, there’s always an outstretched hand.