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It started with rash, then pain, then near death. It was a normal Monday lunch time, everything was nice, everything was correct, but then something was off. Within the half hour my health, my life, it was all destroyed from that first jolt of pain. So sudden. I couldn’t walk, my ankles, I couldn’t move them without a sharp pain running through my joints whenever I dared to lift my feet to walk. Barely and tearfully, I made my way back to class, being advised to ignore it by my friends, and my teacher said it must have been growing pains.
My parents came to pick me up and take me home. I told them about my pain. This, combined with the rash that had been infecting my hands, legs, arms, and stomach for months, only added to the concern, but what could they do? I know that my mother would’ve kissed my pain goodbye if she could, but such a thing was only a childhood dream.
We got home, and I had a bath to ease my sore joints, but something inside me was wrong. It was horrible. The bath was boiling, but I was so cold I cried. I could hardly get out of the bath and was shaking violently. My mother looked at me with a sad expression on her face, clearly showing empathy for my pain. She had a talk with me about growing pains and how she used to get them too, but something in her eyes along with the rash told me it wasn’t growing pains. She took my temperature, and while I was shivering, I had a fever.
In the evening my pain eased slightly and I fell blissfully to sleep, unaware that 24 hours ago was my last day of peace. I returned to school the next day fine, but the day after Monday’s events repeated. My mother phoned my father, asking what to do, and he suggested the hospital. That couldn’t be so bad, right? I was wrong.
We first went to a small hospital where the doctor didn’t seem to believe us. My rash and pain were an afternoon thing, and it was morning. There was nothing she could do, so we went to the larger one, up and up and up we went to floor 12, the paediatrics. I sat on a hospital bed, answering questions instead of asking: “Doctor, what’s wrong with me? I need to know, I need a cure. Can you cure me? Will I be okay, doctor? When can I go home and live my normal life again?” So many questions, so few answers, both for me and the doctor.
She told me she thought she knew what was wrong with me, but her words were meaningless as she was wrong. I had to stay overnight, not a big deal, I thought, but the horror came when I needed a blood test. They promised it wouldn’t hurt, and like a fool I believed them, so I was insufficiently prepared for the pain of a needle moving around inside my veins. The way it jiggled and slid around was agonising, I felt like I was bloodless. I begged myself silently not to cry, it would end soon, I knew it would. But they didn’t collect enough blood, and it had to be done again. I cried and cried, and the doctors and my dear mother comforted me through my pain, counting ceiling tiles and promising that even army men cry getting blood tests. They said I was being very brave for such a little girl. I felt proud of myself, I tried not to cry, I did a good job, but that was only a brief break from the pain in my arms.
I was laying on the bed, resisting the urge to rip the needles out and run away, screaming and crying from pain, but I took it all. My mother watched me, and I can’t imagine how she must have felt watching her first child go through that so young and innocent, but she held it together for me. I love my mum. After 6 tries, there was finally enough blood.
I phoned my dad to tell him the story, but he didn’t understand. He had a lot of blood tests too, but his veins were larger than mine. He didn’t have to do it 6 times, and he didn’t have to do it as young as me.
I lay in a new room with 2 other girls and my stepdad came to visit with chocolate eggs. It was Easter, I had forgotten. He offered me a gift, but the only thing I possibly could have wanted was to go home. Please, I want to go home. I want to be well, I want to be healthy; I want to go back to a time I didn’t have to worry. I may be physically in my house right now, but I will never be ‘home’. Home is where you feel safe.
From here on out, the memory becomes fuzzy, was it days, was it weeks, was it months? Who knows? I got to go home, but had to return the same night as a problem had been spotted in my blood.
As soon as I returned, a doctor painfully put a tube in my arm, medicating me. I sat in bed being dosed with drugs that I had previously assumed were illegal. The doctor was explaining something to my mother, but it was night and I was too tired to pay attention. I just prayed that these weren’t signs I was going to die. I fell asleep, confused about the surreal situation I was in, and felt very grateful when I woke up. I learned more the next day. I had come very close to dying. I didn’t truly understand though, I was 11. I didn’t really know that I had nearly died that day until 2 years later.
My blood had 160X of ferritin than a healthy amount, nearly lethal, but I had lived. What did my mum think? How would she have reacted if I had never come here and died? How much would she have cried? Would my ghost have cuddled her the same way she cuddled me when a family member died? What about my dad? How would he have felt? What would he have done? He was less understanding, but he was always the one who worried about my health more. He always worried about me. I remember my dad was so worried about me that he forgot to take his own medicine. How would they have been a year afterwards? What about my friends? They would have probably never found out what happened. They would have reflected on me complaining about my pain and realised they watched someone dying and did nothing.
How would everyone have felt?
But ‘if’ didn’t matter. What mattered was that I lived, oh boy, did I live. Life was trying to beat me down into a pulp, but I was still here, alive with a smile on my face. I was going to keep going. I was going to beat whatever was killing me with the doctor’s help.
The doctors continued testing me to figure out what exactly was wrong, knowing that if all else failed, I would have to have surgery. I had to continue having blood tests, which I took like a champ; while I cried, I never ran away. Each new thing added fuel to the fire burning inside me, full of fear and self-pity, but it didn’t matter. I just wanted to know what was wrong with me, I was homesick.
“Doctor, what’s wrong with me? I need to know, I need a cure. Can you cure me? Will I be okay, doctor? When can I go home and live my normal life again?” I just wanted to go back home as a regular little girl again. I was so young, I didn’t deserve this. Believe it or not, I started missing school. I was convinced my classmates and friends would forget about me, but when they sent me a card signed by everyone, I cried, but this time not from pain. From happiness. How would my friends have reacted if I had died? Would they laugh, would they cry?
A long time passed. I think it must have been at least a few weeks. All the tests had been run and were fruitless. After x-rays, blood tests, listening to my heart and ultrasounds on my knees and bladder (holy shit I needed to pee so bad at the time) I was finally having a surgery where my bone marrow would be slurped through a needle to test. I couldn’t eat for a while and was only allowed a little to drink for my health, and going under the surgery was surprisingly painful as the coldness travelled through my veins, hurting the whole way. Then it reached my heart and my brain, and I was fast asleep. I woke up and ate a sandwich.
I was put on medication, 9 pills a day and a daily injection. That would eventually turn to weekly and now no medication at all. When I was with my dad, he made me take 2 more pills that gave me vitamin D. They were hard to swallow, and I complained every time, but I still did it.
They worked, but I found out that apparently if it didn’t work, they could have used chemotherapy, it would have destroyed my whole immune system so it could grow back and start again fresh, since it was my immune system that had caused this illness. It would have been harsh too, which has a ton of side effects. I would have had to live in a clean room for a long time. I’m very, very grateful I didn’t go through that, even if sometimes I feel like I didn’t suffer enough to warrant my despair over this.
The results came back positive, finally after all this time with pain in my joints and my veins, I had an answer.
I returned home with a smile on my face; what I had wanted all this time was finally granted. My own bed to sleep in. I pitied whoever was currently using the hospital bed I was previously borrowing. My parents smiled, for our journey was over. My siblings were too young to understand, but were happy for me anyway.
I was too young to understand, too. It was so confusing for a little girl.
I could go home, I could go to school, I could live the last few months of my childhood as a normal girl before becoming a teenager. A normal teenager.
But no.
The medicine, both pills and injections, worked, but something was missing. When I had to have more blood tests and they let me have laughing gas, it was nice, but something was still wrong... I am an expert at taking pills now, and in comforting classmates when getting vaccines, I’m pretty good, having had at least 150 of them in me in the past 3 years. It is my saddest skill.
I used to want to be a nurse, but I am sick of hospitals now. I doubt I could still pursue that career choice, nor do I really want to anymore.
Everything caused both my physical and mental health to suffer, and now a bit of me is missing. It left me along with my childhood. Those weeks I suffered, they ruined me. I am not the same; my sugar is gone.
Even when I got more stable and dropped the meds, the hole in my heart never filled. It’s stuck in the past, forever in that hospital bed waiting to die already, even though it’s afraid. I am afraid.
My family agrees that what I went through was awful. Both the physical and mental pain were immense, but that doesn’t make me feel better. I am so unlucky I am lucky for my illness is 1/10,000. I could have died, I could still be in pain, yet I am here typing this for you, healthy and strong. This is lucky. I am not stronger because of my experience, but I am humb;er.
I had always imagined that while I must be kind to the less fortunate, none of it would ever affect me. I would never have to go through anything life-changing, I promised myself that and have been proven wrong. I am not immortal or immune to life. I have learned that the hard way; I took health for granted, and I have learned now.
But surely it would be better if it never happened?
It still affects me. My rash has returned, and sometimes I feel a little pain and react horribly, scared I will die. Some days I remember it’s forever and cry in secret. My life has been lowered; I have been through trauma.
But I am still here.
And if another thing tries to take my life away too early yet again, like my birth and my hospital visit, I shall live out of spite, anyway. I refuse to let anything take me away from this world I love. There may be horrible things left and right, but when I look up the sunny sky is still there, and above that sky is the stars which I will reach for. Perhaps my chances are low, but that doesn’t mean I can’t still grab them. After all, I’ve done rarer.
And this time I will appreciate them properly, like I should have done last time.
Mother, I am grateful to you for staying by my side and feeling guilty when you had to return to your other 2 children. Dad, I am grateful to you for empathising. Step-dad, I am grateful to you for being understanding, and Caroline, my doctor, thank you for always being a sweetheart, comforting me and never lying to me.
I promise that for this part of my life I will do it better.