1 ALS

Really, what a sad life.

If I had to summarize my life, it would be: Easy. Normal childhood and loving parents. But at the age of 8 years, I was diagnosed with ALS, or the creepy name: Amyotrophic Lateral Sclerosis. It started out as a sleeping foot, playing with other children, One trip to the doctors, for what we thought was a simple sprain, we actually found out it was a disease without cure that in about 5 years would kill me.

When I was admitted to the hospital shortly after I turned 10 my paralysis had progressed from my feet to the middle of my calf. Eventually it started reaching up to my thigh and I lost all control over my legs, by then I could only move with the aid of a wheelchair.

At the beginning of my admission my friends from school visited me every week, but as time went by they became less frequent, where before they were every week. Before long they were once a month, until they didn't even come to visit me. I resented them a lot for a while, those bastards have forgotten about me, they are healthy and happy while I....

I was alone and dying little by little.

With the few things I could do I played a lot of video games, read and watched a lot of shows, it's one of the few things I did in the hospital room, the only people who visited me when I turned 12 were my family members, mostly my parents, who only worked and spent time in the hospital with me or tried to get me added to some study against ALS, hoping that it would cure me or give me more time to live.

I was honestly waiting for death to pick me up, I even had thoughts of going searching for it, with the miserable life I had, but I didn't because of how much it would hurt my parents, who have given me everything for me, how much it would make my mother suffer.

Although I didn't say it, my parents noticed my dark thoughts, or maybe my simple depression.

And they gave me a guitar, at first I was a little puzzled, but the truth is that it was the best gift anyone had ever given me, I became so obsessed with the guitar that I didn't even let go of it when the nurse came to take my blood for some analysis.

So I spent another 4 years in my usual hospital room, once in a while some old friends sent me a whats app, which I didn't even bother to answer, which increased my few interactions with other people, but what do I care, it's not like they give a shit about me. And at the end of the day I'm just an acquaintance to them at best who is dying.

With the progression of ALS I couldn't even stand up to play the guitar anymore, that gave me strength, I stopped talking even to my parents, and I spent a lot of time intubated as the muscles we use to breathe were also paralyzed.

My father tried to repeat the success he had with the guitar, he gave me a carpet with the keys of the piano painted on it, and when you passed your finger over it, it made the sound of a piano key, that silly toy helped me a lot in the hard times I went through.

My character also changed, and everything they told me bothered me, I remember, above all, a fucking doctor I didn't know who told me that I should be thankful for having been alive for 8 years having ALS, that many people don't endure as much as me....

My intubated self who heard that, was perplexed I had 16 years of which half of it I have lived in this room with pain reaching the point that every gasp for air was dreadful if it wasn't for the pain killers, and this guy tells me that I have to be grateful, THANKFUL, something inside me broke, and with the little sensitivity I had in my arms I removed the damn thing I had in my throat that hurt like hell, just so I could say with my hoarse voice <Fuck you!> to the one who told me I would have to be grateful. I had to be sedated so I could intubate again, but it was worth it.

And so we come to what I think are my last moments in this sick, pale and ill body, the paralysis continues to creep up and my lungs barely take in oxygen, I feel how the few parts of my body that I do feel are heavy, how my mind also feels foggy.

As my last moments came, with my consciousness fading, and my mind clouded I remembered my parents, I hope they find the happiness I have taken from them.

With fear of death that embraced me and came closer to give me her warmth, in my last moments of life.

I hope with the little conscience that I had left `I wish that reincarnation exists, if it really exists then please that in my next life I don't have a sick and weak body, also to be able to remember my miserable life, to be able to live the next one to the fullest, without regrets.'

These cloudy thoughts made me remember one of my favorite phrases. The phrase was insane but full of emotion.

"𝙄𝙛 𝙮𝙤𝙪 𝙜𝙤𝙩𝙩𝙩𝙖' 𝙠𝙞𝙡𝙡, 𝙠𝙞𝙡𝙡. 𝙄𝙛 𝙮𝙤𝙪 𝙜𝙤𝙩𝙩𝙖' 𝙗𝙪𝙧𝙣 𝙞𝙩 𝙖𝙡𝙡𝙡 𝙩𝙤 𝙩𝙝𝙚 𝙜𝙧𝙤𝙪𝙣𝙙, 𝙩𝙝𝙚𝙣 𝙡𝙚𝙩 𝙞𝙩 𝙗𝙪𝙧𝙣"

So I want to live my life, on my terms, not like this disease has done by locking me in this room, I want to feel ALIVE!

And that was the last thing I thought before I closed my eyes.