It is difficult to reduce our life, our memories, to a single day, to a fleeting moment where everything makes sense or loses it. My name is Noah, and although I am known as the girl with the seven rare diseases and the cochlear implant, I have never stopped being Noah. Although I was born on August 4, 1998, I was reborn on Tuesday the 13th, 2020, after an induced coma from which, according to doctors, there was a 99% chance that I would not emerge. My world had become silent, as it also became silent after, in October of that same year, the medication I had to take to deal with the sepsis I suffered caused me to lose the hearing in my left ear.
Everything was an incomprehensible mess. An illness, or several, that pressed, a soul clinging to life and, in the background, me. At that moment, existence as I knew it no longer existed, it had dissipated in that immediacy that marks the now, and I couldn’t blame it for anything either. After all, the world was here before me, and therefore I had no choice but to find in that crude stillness what I lost in the noise. Until I broke the barrier of silence.
Everything in an ICU is relative, even unfathomable. The hours don’t matter there, except when they let mom in. I wish the hands of that clock that could be seen from my bed had stopped in those moments of happiness that in my thoughts wanted to last an eternity. Small periods of uneven heartbeats in which you must play the heroine so that when she walks out that door she continues to think that her daughter is winning the game against death, even though in reality it is death that is about to checkmate. We are old friends, in fact we are on first names. Quite a few marks ago on the calendar that I lost respect for her, that I stopped fearing her, and accepted that everyone who comes is doomed to leave. Now I look at her with a certain arrogance, over my shoulder and with extreme insolence. Now that I know what it means to die, that’s when I want to live the most.
To be able to explain my life to you I would need more than just a few pages. I also don’t want to bore them with medical terminology that many times not even they themselves are able to decipher. I suffer from Ehlers Danlos Syndrome and Wilkie Syndrome. May-Thurner’s and Raynaud’s. Also nutcracker syndrome, inferior vena cava compression and gastroparesis.
My life is what it is, a conglomerate of dawns that hover over the glass, a silent scream, an attic of scars, a truce with myself and a budding but withered hope. I am so at peace that the only thing left is the war with me, although there are days when not even that. We could say that before everything it had a simple past and an imperfect future. I now live in the tense that each and every one of us should; in a continuous present. Luckily, although I deny it, I have a room of your own in which I can lick my wounds, and I have learned that I should not ask for happiness because I already live in it, only that from time to time the game in which I am always imbued with pain ends in a draw. I know that I live on borrowed time, in suspense on many occasions, but despite everything I do it out loud, because I have understood that what I called destiny was nothing more than what I made of my life. In short, it was nothing more than my life.
The bullets that I shot myself
Memories flood into my mind, already tired of suffering, so some have decided to self-confine themselves. And it is possible that there is no more memory than what the wounds provide us. There are days when I remember how much it cost me to love myself, of the endless bullets I shot at myself to see if I could soothe the pain of my soul. With the physical we are only united by that red thread that reminds me that if the wound hurts it is because there is still life. I lived with a bare chest, with a perennial smile, with a trained body that already knows when and where it should stop to purge its sins. I lived and live above the line, trying to make balance be my best ally. I lived and live by and for life, although on many occasions I renounced it.
I never built an eternity, for fear that the house of cards that was being forged before my eyes would fall at the slightest movement of my body at that defenseless moment. During the entire hospital journey that I carry in my backpack, I thought I would lose everything. To tell the truth, there was a moment when I did lose everything, including myself. I couldn’t stand on any calm sea, and every wave that reached the shore carried so many dreams that at one point I decided to stop fighting for them. It was when he was 17, although it all started much earlier.
At 12 years old the illnesses came, they had always been there, it was not easy to give them names and surnames, they broke out one after the other, without prior warning.
At 12 came illnesses, although they had always been there. It was not easy to give them names and surnames, they sprung up one after another without prior notice, although always carrying their sign of closed due to demolition about me. The operating rooms came, the hard living, the maturing with a dropper and the change of verb to go from living to having to merely survive. The scars came, inhabiting a new body in which each step through the workshop was like opening a new crack so that, even in passing, the sun could enter it. The reproaches, the forgiveness, the questions and the why came to me. The falls, the morphine, the not wanting to live came. I guess the only good thing about hitting rock bottom is that you can’t fall anymore, and in that dilemma that was blindly posed to me, I chose to pick up all the pieces scattered around that room and pick them up again. Rebuild myself and try to be happy.
I learned not to reproach myself for anything, to look fear in the face, cradle it when necessary, and make it a participant in this life that is so mine and now so ours. I decided that the pain must be shared so that the shipwrecks are worth it. I decided to be Noah, and believe in the meaning of my name – which Mom carefully chose: long life – so that regardless of the length of the journey I would be at peace with the past and at the same time with what was built in the present.
Now my struggle is the skeleton of what many call the future, the allegory of the impossible made feasible. Now, at 23 years old and a few too old, I know what my true homeland is and what flag I should fly.
Now that it seems that our smile has been erased, we take out that lethal weapon that is the laughter of the soul, the one that does not wither and blooms day by day. Now that everything has changed, I am still the same little soul who looked at life as only a kamikaze can do: opening the windows wide, thus letting in new air even though I am the candle that burns out with every opening and closing of eyes. I pushed my sanity, and stopped thinking that it was not what anyone was looking for, but rather what few are lucky enough to find; an old soul of a girl who could not be one, an uncontrollable abyss, and some ellipses from Sabina.
Now that I defend the only thing I know tooth and nail, I feel that this fight makes sense if you read me today and come face to face with your fate. If you understand that to accompany in the fight sometimes all you need is silence and lying down in the middle of the track, and that is that we will always have more trains and, above all, more stations.
Now that you know me being that living paraula (living word) of Estellés, I urge you to do it with yourselves. It will all be worth it if this Sunday in February you rethink your most primary foundations, if you think about those three million souls in our country who suffer from rare diseases, like me, if for a moment you change into the skin of your family, friends… if you decide to stop suddenly, stop along the way, look the person next to you in the eyes and be able to call him or her partner. If today they forgive each other, they sing the mea culpa and they bring out their most human side, any way of the cross past or present will have value. If today you decide to reconcile with life you are in luck, you have fallen on the right side of history.
Without science there is no future. Our lives are in the hands of those who chain precarious contracts, when their work should never be so volatile and itinerant.
If you are reading me today it is because literature, words, saved me. They did it even when I turned my back on myself. I am one of those who believes in culture as a weapon of massive construction, and it is in that culture that we must take refuge when our world is left in ruins.
If you have come this far you will understand that everything adds up, even what never happened. If you have come this far, I invite you to reflect, to be a single voice that defends our health tooth and nail. Today I ask you to be the standard bearers of change, to shout from the four winds that: “Without science there is no future.” ”, and that our lives are in the hands of those who chain precarious contracts, when their work should never be so volatile and itinerant.
If today, after reading me, you go to bed with the feeling that each day lived is a day gained from life and it is subtracting one in return, you will have understood everything. And this will mean that, even if I do not consider myself a writer, I will have to continue saying “but not much.”
Noah Higón Bellver has just published the collection of poems Of withered hope (The Sphere of Books).
#girl #rare #diseases #stopped #Noah
