Archivo de la etiqueta: about myself

The summer when Lady H.H.Holmes almost killed me

Estándar
The summer when Lady H.H.Holmes almost killed me

Confesiones por email “Así nació Yrene Yuhmi”

https://yreneyuhmi.wordpress.com/2016/06/28/confesiones-por-email-asi-nacio-yrene-yuhmi/
— 読み進める yreneyuhmi.wordpress.com/2016/06/28/confesiones-por-email-asi-nacio-yrene-yuhmi/

I’ve been thinking a lot these days, and I did not dare to write to you … I still have very bad memories of when I did not know what I was suffering from, and the anguish is very strong with those memories.

This is in my case, which is different, although each case is unique because there are many types of CF mutations, and that makes each patient different. Broadly speaking, CF is genetic, it produces a degeneration of the whole body, because it affects at cellular level. You can find a lot of information on CF federation site or at Wikipedia!

But to get to the point, and roughly, it’s diagnosed at birth, and affects the lungs greatly, and the digestive system, pancreas, liver, genital tract, skin, muscles, bones … In CF, there is an excess of excretion or mucus in all the organs, for example, our sweat is very salty, that’s why when we talk about CF we hear the expression “salty kisses”

we lose a lot of salt, so we need a supplement, mostly during summer. The pancreas does not produce enzymes, and sometimes, unfortunately, neither insulin (nor endocrine function nor exocrine) so you have diabetes in addition.

The liver is also tired and transaminases can be altered, the genital flow is constant, mucous; in men there is a high probability of being sterile … the malabsorption causes us to lose many kilos with great ease, and this is a problem above all in time of growth, that is why it is important to be diagnosed immediately.

A few years ago the CF test was added to the others tests that are done on the baby’s foot. But I was born in 1976! And whatever the reason was, I didn’t have a diagnose.

I was a healthy baby, but my mother tells me I had some episodes of being very thin, at age five, and then at 13, I started with constant diarrhea. They said that it was lactose intolerance (in CF you can have celiac disease and intolerances due to digestive problems, they are all secondary diseases due to the cystic fibrosis)

My mother fought hard to know why I was always sick, losing weight, with diarrhea, indigestion always, nausea but never vomiting, a state of eternal nausea … many years of struggle, going to different doctors, hospitals … Tarragona and Barcelona … finally, a doctor specialised in food allergies and paediatrician, working in Barcelona, ​​Dr. Jaume Botey and Sala, very old, wise, a man with a big and strong constitution, and ethical talking totally impartial, he made me “the test of sweat” and it gave positive.

I had CF, and only knowing what I was suffering from, despite being an incurable and mortal disease…

It made the whole family breathe easy!

The bad thing was the research stage, which many doctors believed I had anorexia (the 90s were the years of awareness and extension of what appeared to be this disease) and although all psychiatrists and professionals completely ruled out I had anorexia, a couple of doctors (no psychiatrists) did not want to budge.

During the year 2001 I had to be hospitalised because of cachexia, I weighed only 30 kilos: it was a hell for me… (I did not recognize myself, it hurt me to look at me in the mirror, I did not go out just because I was scared of my appearance, or of people whispering about me without dissimulation, to the point of making cry my little sister…I recall this situation was in a clothes shop called “Stradivarius”

I remember it because we mom and sisters, could almost never go out, and she was 13 or 14 years old, (the age of going with her big sister to shop and enjoy those times and that age …)

No matter how hard I tried to gain weight, I was plummeting. First the doctors thought it was an immune disease of the liver, but it was not like that.

In Barcelona, ​​the head of the plant, a big fish of Vall d’Hebrón hospital, was the digestologist who took my case.

She did not like the fact that Dr. Botey gave me the diagnosis…And who knows why, she always seemed angry with me and my mother. She was a mean and arrogant woman.

One day, fed up with my case, she told me that if I kept going like that (?)

she could not do anything.

I said: “I do not want to continue like this either, that’s why I’m here,

you have to help me”

she said there were more doctors in Spain,

and we made the consultation at two.

“If you do not save me, God will save me,” I replied, crying.

And she screamed with arrogance and despise, “well, so God do save you!”

I left crying and ran without knowing where inside the digestive plant,

and my mother did not know whether to follow me, or continue trying to talk to the

doctor, at that absurd and nightmare-like “end of the consultation”,

without further hope, she realised her period just came suddenly: and It was a

considerable hemorrhage.

Once in Tortosa, I was admitted to a clinic, and there they put me a tube to be fed by vein, do not know what is the correct name in English, but it was a tube that ran from the intravenous feeding machine, to the heart, from the back of the elbow.

In that clinic they could not treat CF, so they sent me to Vall d’Hebron on the condition (I asked for) of not even having to see “the evil female doctor” in question. The deal was established and they took us there by ambulance.

As soon as I arrived, a doctor and around ten interns came in, examined all my belongings, treated me like someone despicable … and so started our nightmare:

The plant manager M.D. did appear, they broke the deal…

The summer of 2001 was the most eternal and terrible season of our lives.

They did psychological tests to both of us, my mother did not have to go through that, but anyway they did it… instead of treating my CF, they were desperately looking for an eating disorder. The psychiatrists and psychologists continued to argue that it was not like that, that I was depressed by my physical condition and by being always sick.

They took me to the hardest Psychiatric area, the Pedopsychiatrists interrogated us both, in separate rooms, for a few hours. We had already gone through hard questions in Tortosa. It was as if I was to blame for what was happening to me.

In pedopsychiatrist area, the doctor, a well known eminence, determined that I did not have anorexia neither anything similar.

In any case, the digestive doctor did not want to hear it.

She came to the room at eleven o’clock or so, with a bunch of interns. Everyday.

One day I remember she taking my arm and squeezing it hard:

“Do you see “this”? She does not have muscle mass, as she does not eat, her body does not have any fat ”

“Sorry, but I do eat” I said, and I looked at them, trying to find someone to help me, someone who believed me.

“Leave her alone, don’t mind her, she’s crazy” the doctor replied without any doub, almost throwing my arm aside.

“She is crazy” words like those made me swallow the tears every single day, being aware that I wasn’t getting any better.

Then I got transferred to a “special room” where just one day before was hospitalised an old man who has lost his mind.

When I gained the nurses trust and friendship, one of them told me that there was a listening device there, and warned my mother and me about it…then we really realised things were really going so bad, and I understood that I wasn’t going to get well, I will never be cured, not on that room.

The other patients at the same plant didn’t eat too much, I remember one who always refused the hospital food and ate cocoa powder like a kitty.

Their intravenous machine was at full throttle not like mine, so they gained the weigh quickly and got out that horrible place in no time.

The treatment was really really different. I didn’t understand why. I couldn’t.

I asked forty voluntary discharge since the medical treatment wasn’t working and wasn’t the adequate. It was at half September. I wanted to be back home, I didn’t want to die there, if it was going to happen, I preferred to be at my own bed.

The struggle until beginning of spring of next year was strange, because I felt with such a will of living and getting over all that, and little by little I gained weigh, around March of 2002. But I was swelled like a balloon. My tummy was like a barrel, my skin hurt, there was a lot of liquids inside me. Doctors didn’t know the reason, or didn’t wanted to say it to me.

The point is that I was almost recovered around June. It was what I call

a miracle. (I know it’s not something people use to believe in, but I do)

But what happened? Now I have some idea.

During my stay in the hospital, we met an old lady, quite rich, who always praised the evil doctor who now, I call lady H.H.Holmes*

While she ask tacs and other tests on me, I listened to her egocentric talk with other doctors who looked like puppies liking her shoes to get a candy.

She was studying and trying to do a new pancreas transplant, something that would made her the top of the top on medicine. Or something like that.

I wondered why she was so sure I was going to die.

She really seemed she wanted me to fail on my recovery. Even gave me all pills or medicines with lactose or gluten on purpose, since I had the diagnose from a doctor she seemed to hate.

The important point is that f I died she could have a pancreas which could made insulin, so it was perfect for a transplant.

Perfect for her Plan? Of course, all of this is just a guess, a conjecture. I can’t be sure about it, just something seems to make the whole puzzle complete.

And now, right in this sadly socially and politically rotten Spain, I see all the xenophobia I have tasted since my childhood, become a finished canvas easily understanding. I lived in a region were Castilla and Andalusian emigrants were and still are hated and looked down.

I was in bad hands, but those hands were M.D.

That lady H.H. Holmes made my family suffer to an extreme you can’t imagine.

When I was almost recovered from liquids and new body changing (I was like a slime turning into a human!) I went to see the nurses who tried to know me and changed their mind about me, since they were told to do as I was a prison burglar or some kind of monster.

They saved me. I am so thankful!!

On the corridor of the same plant I was hospitalised, we chatted happily about my recover. Then, lady H.H.Holmes appeared from behind, and everybody face changed colours. I didn’t even turn out. I felt a chill all over my back.

She said, “oh, Irene, you look amazing” as if nothing had happened.

I just said “Thanks to God” keeping myself towards the nurses.

Lady H.H.Holmes vanished after being ignored.

Other patients had to pass through what we passed.

She just picked her victims for some strange reason only she knew.

I don’t know where is she, what she does, and I don’t care.

The past is filled with memories, but there is no room for her neither for the bad moments.

From bad moments I got good experiences. You can get some funny anecdote from terrible experiences.

It’s what I want to think, because it happens to us at home.

Now I keep the struggling!

And if our Lord gave me another chance, must be for some reason.

I want to keep it up, love and live!

And make some justice too, someday…

So then, I wrote a long letter my friend!

And it’s only a glimpse of the whole thing,

Thanks so much for reading my lines.

I hope you got an idea of what happened to me.

Thanks for your concern and interest about this disease Cystic fibrosis,

I wish more people were like you are!

And just how I always use to sign,

Love & Peace

Yours

Yrene Yuhmi (Ren)

Caption*

https://harpers.org/archive/1943/12/the-master-of-the-murder-castle/

Filosofando: citas, frases, pensamientos

Estándar

Desde niña que me pierdo en los pensamientos, en miles de ellos.

Quizás es porque me gusta la soledad, y con ella es como me puedo sentir libre, en paz, plena, sin miedos ni ataduras…

O tal vez la Soledad es una necesidad procedente de mi amor indestructible e imparable por pensar.

Y el pensar me lleva a escribir.

En el  pensar está la cama dónde nace y se alimenta el ave multicolor de la imaginación, y también en el pensar se mecen y juegan las musas que nos inspiran.

No hay humano que no piense. En una cosa u otra, pero piensa.

Mi querida maestra de EGB M.Tena D.E.P, siempre nos decía: “lo único que nadie os puede arrebatar, que nadie puede controlar, es el pensamiento”

Tanto Ella como sus enseñanzas, se me quedaron grabadas…No sólo enseñaba Lengua Catalana, también nos enseñaba (mocos@s con la cabeza llena de pájaros) sobre la Vida…

Gràcies M.Tena, de tot cor.

Os dejo algunas citas, no son gran cosa, simples reflexiones, pero que deseo compartir.

“El escritor sin lector es como un vacío sin su nada. Un absurdo”
“El amor que se alimenta
desde antes de tener uso de razón,
Es lo único que ni la distancia,
ni el tiempo, ni la separación física,
pueden destruir”

“Todo aquello que nos haga gritarle a alguien,
levantar las manos contra alguien,
demostrar el odio disfrazándolo de pacifismo,
es lo que demuestra
que nos falta mucho para ser humanos”

“Algunos humanos sanos creen
que los enfermos
somos una excepción,
Lo que no saben es que los enfermos
hemos sobrevivido y
ellos solamente han vivido”

“La familia es la base de la Educación,
Cuando educamos a nuestros hijos no sabemos
Que estamos educando al Mundo”

“La ley que nos hace más humanos
es la necesidad absoluta de proteger
a alguien”
“La humanidad tiene el poder de crear

y el de destruir en sus manos.

Puede destruir a partir de la decisión

de lograr algo bueno,

pero si destruye a partir del odio,

no crea más que nueva destrucción

y más odio”

Yrene Yuhmi (2011-2015)

Por el momento déjame en paz (2009)

Estándar

Dos nubes pesadas, cargadas, mórbidas
vagabundean cerca de donde mis sienes palpitan.
En el espejo una imagen me dice algo
nada importante, algo muy firme,
algo que se afila en los labios cereza,
y en los otoñales tiznes bajo los ojos orientales,
se duerme intraquilo.
La vida me chupa la sangre y el mundo se ríe.
La muerte me mira de cerca y, de vez en cuando,
hasta le sonrío.

¿Qué sonrisa es esa? me pregunta. ¿Ya te quieres
venir?
No…No me gustas nada. Pero sé que formas parte de
mi, no hay sombra sin luz, no hay vida sin ti.

Por el momento déjame en paz,
tengo que hacer cuatro cosas, o cuatro mil si me
llegan los días.
Quiero amar con la fuerza de los tifones en Japón y
ser amada como la literatura por los lectores.

Despacio, constante, eternamente.
Como la vida, como la muerte.
Yrene Yuhmi
8 de octubre del 2009

Portraiting Mario

Estándar

What a long, strange, WINDY!, difficult winter…I cannot complain but since my grandmother Irene passed away on January, things are getting odd and my Health is getting worse…

I also remember grandfather Fernando so much…And our black cat, our baby, Rona, passed away on last Summer…

People can think “it’s just a cat, come on!”

No…She wasn’t just a cat. She was a very important existence for us and us for her during 10 years…

I can’t take out of my mind my grandmother sitting with Rona at home, taking a cup of coffee and sweets together.

Rona loved my grandmother and my grandmother loved Rona. The two existences are not here anymore.

My Life and Mom’s Life, both are just like a book which has been teared apart, here and there, becoming a sad,

destroyed book non complete.

The memories are only in our minds, but the real ones aren’t here anymore.

So sadness comes easily to us and make things difficult! Specially with a rare disease. Cystic Fibrosis made my life change in a crazy way. Now I see how serious it is, but also I can see I am so fortunate I am still alive, at home, and with a family and friends.

And I can still keep drawing, even if my hand gives me trouble, I can still try it, keep it up and imagine my next chapters of “Armend y Liend” novels!

I will survive! as the song says!

Sorry for being so blue and for being late on the final volume of Armend y Liend series ^_^,,

As for the time being, I try to draw people I admire and/or love ^_-

Here is a little portrait with Japanese patterns, and feeling, to Mario Vaquerizo:

https://twitter.com/_mariovaquerizo

Mario Vaquerizo por Yrene Yuhmi

Mario Vaquerizo por Yrene Yuhmi

The kanji (on your T-shirt) I choose is FUKU, good fortune, that is what I wish you have along with my so admired and beloved Olvido Gara 😀

Much LOVE & PEACE!

YRENE YUHMI

Nippon and Spain bonds

Estándar

I have a very important friend in Japan, Nishikawa Hitomi san ^_^)

Her Bday was on 25th of this Month!

I met her (as I met all of my very best friends, in Ameba blogs ^_-)v

I learn a lot from all of my friends, and I feel so loved and cared about thanks to all of them…

Nishikawa san is a woman with a calm and prety smile, and a peaceful essence who mades

everybody feel at easy and very cheerful!!

I can go MaeMuki* thanks to Nishikawa san…arigatou gozaimasu!!!有難うございます、西川さん!!大好きです!

I made a little present for you! I hope you like this portrait I drew today for you, it,s not good thought 0////0)…

My hand is not working too good lately, I guess it is because of my neck old sprain ^^,,,

I hope it will go better from now on!

Much love!!!!!

Hitomi Nishikawa portrait 2015

*MaeMuki 前向き look forward, don’t feel down and keep it up ^_-

What I can find cleaning and tiding things to End 2014

Estándar

Mom does this big clean up since We were kids.We didn’t know in Japan there is a traditional habit (and a very good one as expected!) that is cleaning and tiding everything before the year ends.

I really am amazed Mom seems japanese…maybe someone of our ancesters were samurais who lived in a town near Sevilla, called Coria del Río. My grandfather’s mother came from a town very nearby.

And so maybe this could explain my physical features, very similar to japanese! ^_^

so so then! what can I find tiding up my things? Writings and drawings…️Lots…

REALLY.

It could gave you a harsh headache -.-

I up some of then handscripts to end maybe, this year on the blog…

I really want to finish my novels but I must get healthier ^^,,,

My beloved Rodin, sketch Ink from Beatrix Potter book

Sketches writings Cat on the forest

I love when I find quotes I like wrote there and here on this old old note books 🙂

Like this one by Antón Chejov, one of my favorite russian writers and poets.

Antón Chejov hand writing quote

Russian people Love their past, hate their present and fear their future.

they do not know that the Future which fear so much is going to be the

Present that hate and so this Present, will become the Past they Love so much.

I think it is not only the russian people but every one of us who feel this way…

we must try to live our present to our fullest, as my Mom says:

“Los momentos del presente serán los recuerdos del futuro”

Delores R.D

(the moments in our present will be our memories in the future)

PEACE & LOVE

Yrene Yuhmi

Letters to nowhere (Cartas a Ninguna parte, mis memorias)

Estándar

This is an original writing, unpublished book I wrote from 1999 to 2001. When I was so sick and without a treatment and furthermore, without doctors support…Later I had the diagnosis, it was a hard to deal, painful part of my life and my family’s life too, during more than 10 years I had no idea I suffered because of a genetic disease called Cystic Fibrosis.

So then, lately I began to read again what I wrote back then…It hurts a bit but I want to share it. I tried to translate it to english so it’s very bad and I’m sure I need a proofreader ^_^;;;

It’s a long book, so I’ll be sharing it chapter by day more or less! thanks so much for your caring, support and love! it makes me keep my fight on! 😉

Letters to no where

Living imprisoned in this century is a true punishment for me.
If I least I would see the light some decades ago…But no, I was born on 1976. And I did it in the middle of Xmas,
like I wanted to annoy. With the cold, hand by hand with December and in a just opened new hospital.
My mother says to me that the labor contractions began after lunch, watching “Little Women”.
I read the book so many times when I was little.

Spanish original
I grew up with Verne, Mary-Louise Aboltt, Michael Ende, Saint Eixupéry, Dumas, Harriet Beecher-Stowe, Edmono di Amicis,
Dickens, Eleanor H. Porter, Gerald Durrell, C.S. Lewis, Dahpne du Marrier, Agatha Christie
I liked to go to School, my parents were fabulous, I had siblings to whom I drag to my fantasies and we spend  the weekends in the country-side.
Yes, I had a wonderful childhood. Perfect.
But who minds?
Only to us. Only to me.

All the memories are  to me essential to subsist. I had them tattooed around all my body and, even If I wanted to, it will be impossible to make rid of them.
The good ones because I need them, the bad ones because they are just a few but very insistent.
Damn odds and ends of human diversity… Naivety, pain, hatred, remorse, love.
And an endless multitude of words from I truly unknown the meaning.
I will never understand myself completely. How many times I tried, and I just get lost in the way.
And it is useless to try to explain rationally what is absurd and incoherent. And that is what I am myself.

My life is an absolute chaos. I mean about this agitation I feel here inside, within my head.
I wish I was born, like you, on that end of the century from I constantly drank, hand by hand with Tolstoy, Austen, Baroja, Chekhov…
It’s the World about what I only can know that  musty,  rancid black and white photographs, with Sunday-best dressed gentlemen and Ladies sitting quietly, holing a book in their hands.
Ana Karenina appears to me beautiful, hieratic and consumed for the passion, next to the train tracks, the train that every Sunday took to the capital.
I can see her now too.
She wears a pretty coat, fur cuffs, carrying case. And her curly hair,

the same that Madame Recámier, who David painted in the middle of an austere ambient in what she shined  with an incredible unhelpful the frivolous Victorian gem.

Before I close my eyes when the day ends, after talking alone with God, the images of my reality come like in a movie by Porter or Griffith.
A train heist, heroic telegraphers, naive loves, cheeks rubbing…
I guess It was so hard for you*, to lose so soon the person you loved the most. If it’s of any consolation, I can only say that when I don’t feel well, I take refuge in your tales.
And I’m not a kid (I think). Your talkative animals, I know them from long time ago, believe me! so much before I discovered you. It was when I was a kid.

I was that kind of brat who grows up in a world just created for her, that is: without defects.
I live in The Guadiana, is a country-side house with a big piece of soil ornate with trees and lots of anthills.
I  named the anthills because is one of those things that are part of me,  even if it can seem silly.

I spent hours, that in my World were just minutes, looking at those tiny, hardworking little ones. I also like spiders. I know, I know. To more than one they are so
frightening, but I ask myself which is the one who must be scared? you or the spider? …
I tenderly become friends with  snails too, and I can assure you that even thought I love eating, I refuse to cook something with whom I had some kind of conversation. In the end, what’s that? it’s you just are bundled sucking ridiculous shells…*2

I remember a summer in the beach, and my auntie Ana.
She lives alone. She’s that kind of singles aunties who come mostly in the movies, you know. But, no. Forgive me, I forget that I’m talking with someone who is an outsider within this burger culture that has been cradling every kid around the whole World.
We are entering a new century and there is not even a person who has not kissed with enthusiasm MAMA USA. I myself grew up with Spielberg.
The movies about singles aunties and uncles are just like…popcorn and sliced bread.
My auntie is a masculine woman, and I don’t mean any sexual orientation,
She is tall, strong, and always wear trousers and shirts. She loves ties.
She has at least 50 and not even one is the same as other. Incredible isn,t it? so for me, who in men always see the ties all the same. It’s an stupid garment, but it doesn’t look like so when auntie Ana wears it.

She smokes a lot. With this theme I always have a “discussion”. I write discussion in  quote because to discuss with Auntie is impossible.

Furthermore, what will be about Auntie Ana without a cigarette in her lips?

Some days forgets that I’m there and light up one.
When I begin to drop tears and wink non stop, she puts out the cigarette and smiles to me to apologize.

That summer I was 8 or 9 years old and I became a very good friend with a snail. His name was Pedro.
Have you ever seen the mouth of a snail? Me too. I even let him to nibble my fingers, before getting to look how he attacked with pleasure a lettuce leaf.

How far away is all of that now! Memories and childhood are synonymous of The Guadiana to me. Now it shows to me different, More little, without mysteries and unknown corners…without games.
A bit sad in winter but radiant and comfortable when the spring goes on.
Your farm Hill Top, in Swarey, must be a perfect paradise compared with my Guadiana. I don’t know. I have never had the chance to go out my country, Maybe some day I can go visit yours.I wonder if it’s very changed…Your watercolors show it to me like a delicious messy of orchards, ponds, moss and trees.
Some fences, mailbox and a little road that leads to your house, to HOME.
In The Guadiana I have cats, two dogs, chickens, doves, turtledoves and quails.
Somehow my father is at fault but all of us love animals.
We also had hedgehogs, frogs, parakeets, canary birds. Even goats. Well, a goat and a her little son.

Oh my God, I,m already losing myself! To whom I’m writing? Maybe it’s just to my alter ego…Am I writing to myself? Me, who always though I had nothing to tell to myself.
Tomorrow I have an exam of Aesthetic ideas. I can’t continue with this…
Sorry Beatrix, within me there is such a confusion, and so then, even knowing I will not get an answer from you, I say good bye.

Someone who admires you.

(I must say names and some characters are fictional! but not the memories and the feelings)

It will be continued as soon as possible ^_^)b thanks for reading so far.

ORIGINAL IN SPANISH: CARTAS A NINGUNA PARTE

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*1 I’m talking about Beatrix Potter, to whom is redacted this book.
*2 in Catalonia is a tradition to eat snails with tomato sauce (cries)