La que fui, la que soy, la que quiero ser

Yo ya no sé para qué escribo, ante el silencio del Mundo…
No sé por qué sigo con este monólogo de una vida que no es mía,
y que debo gobernar, con mi varita mágica de la fe y el desengaño.
Cómo llegar a contar mis años, sin tapujos y sin miedo,
al que dicen, digo que dije, y siguen con el dirán.

Una niña que no sabía, que iba a agonizar antes de la pubertad,
y que vería romper en mil escamas de lágrimas, sus sueños e ilusiones,
antes de que aprendiera a bailar con su abuela, de la sevillana, la tercera.
No pudo decirle a un cúpido inexperto, que amaba a ese par de azules
de una mirada inocente…
Bajó las escaleras de una vieja facultad de historia, sin apenas fuerzas,
envuelta en un abrigo demasiado grande, para no volver atrás,
porque sus pasos ya tiraban de ella hacia aquellos castillos donde las batas blancas tiranizan y cortejan con sabidurías a medias…

Luchó contra aquellos que no aplauden aunque vean morir a la hermosa Campanilla, contra los que malhablan para ensalzar su ignorancia y contra
los látigos que a su cuerpo le instiga una enfermedad, que hasta en el nombre,
muestra su cruel fealdad.

Y resurge, y vuela un poco más alto, sus alas heridas pueden al menos avanzar un poquito más…Si sonríe es porque lo heredó de su madre.
Esa niña de alas rotas, busca siempre el sol y las playas, en donde reposa el alma y los poetas reinan.
Esa niña soy yo, y ya no sé por qué escribo, ni por qué quiero seguir agitando ante el Mundo, esta varita mágica de fe y de melancolía, buscando un lugar en el que habitar. Un lugar en el que mi nombre, suene, vibre y se deje amar.

Yrene Yuhmi 2020

Constantino Romero y el exhibicionista de Barcelona /The pervert of Barcelona

 

Kanharu doujinshi
Kanharu in Barcelona 90s

Barcelona de finales de los 90.
Pero finales, finales.

Muy temprano,

aún todavía sintiendo

el tacto de la sábana en mi mejilla,

pasó por delante de la panadería

y compró unos panecillos acabados de hornear.

Ya he desayunado en pisito de la calle Ivorra,

en mi barrio de estudiante universitaria,

uno con nombre que suena

a cortar leña o trepar montes: Sarrià.

Las personas con Fibrosis quística

solemos tener siempre un apetito voraz,

y a la par, una terrible malísima digestión.

Menuda contradicción dietética…

Esa es la razón por la cual paro

poco después de desayunar,

en la panadería, calentita,

con sus dependientes vestidas de blanco

y sus pinzas, como cangrejitos serviciales,

sirviendo donuts, cruasáns,

baguettes, panes rústicos

y demás delicias de cereal.

Pisando fuerte, masticando aquellos

panecillos blandos como nubes,

mi falda larga de punto roza las botas altas,

como orejas de textil atentas

al despertar de la ciudad,

mezcolanza de voces y máquinas,

música urbana.

Pasó por delante del Corte Inglés

en la Plaza Maria Cristina,

grandes almacenes que marcan

el paso de las estaciones mejor

que el planeta Tierra…Esta vez toca

poner las luces de Navidad.

Miles y miles de luces que los operarios

colocan con paciencia infinita…

¿Qué dibujo formarán las luces

cuando esté terminado aquel puzzle de colores?

No estoy yo para pensar mucho en ello,

porque mientras voy camino de la Facultad,

repaso todas las lecciones,

las del día y las que me gusta repasar,

o bien me ando por las ramas hasta pensando,

y me pierdo como Alicia en un país

de mil maravillas de lo más variopintas…

Vamos, para decirlo más claramente:
estoy en Babia.
O en la luna de Valencia.

¿Por qué se dirá? “Estás en la luna de Valencia”

Y de nuevo a las andadas.

Cuando llegó a la calle larga y cuesta abajo

que parece apuntar

a la boca del edificio de la facultad,

aceleró el paso.

Supongo que por inercia,

y porque cuesta abajo es más fácil dejarse llevar

y los pensamientos se multiplican por mil,

y yo ya estoy perdida en ellos por completo.

Es una calle solitaria,

simple asfalto, con solares de maleza a los lados,

y una gran pancarta que anuncia un foie grass,

que por aquel entonces anunciaba

un muy querido presentador de televisión,

locutor y actor de doblaje

¿le recordáis? Constantino Romero,

la voz de Clint Eastwood,

Arnold Schwarzenegger,

o Dark Vader…

Esa voz, qué voz…
En Star Wars
_Luke, yo soy tu padre
En Terminator
_Sayonara baby
o ese discurso final de la peli Blade Runner
_Yo he visto cosas que vosotros no creeríais…

(Rutger Hauer)

Qué voz, me diré a mi misma al pasar

por delante del enorme cartel publicitario,

casi a la entrada de la universidad…
Pero antes de eso.

Unos pasos, unos metros antes de eso,

un compañero de clase me hace volver en mi:

_ ¡Yrene!

_(¿eh?) ¡Ah! Hola Juan, Buenos días.

Juan me mira con cara de incredulidad,

algo de extrañeza y una pizca de risa nerviosa.

_ ¿No lo has visto?
_ El qué – le miró interrogante…

¿qué tendria que haber visto?

Estaba tan confusa

que no sabía si frenar el paso

y mirar bien a mi alrededor

o seguir para no hacerle un feo

a la cuesta que empujaba

mi cuerpo hacia adelante.

_ ¡Al tío ese! ¡Se ha abierto el abrigo delante de ti!
_ ¿El abrigo?
_ ¡Un exhibicionista Yrene!

Por supuesto que no lo había visto.
Y estaba tan claro,

que Juan me miraba

ya con ganas de reír de verdad.
_ El tío se ha quedado decepcionado.

Has pasado como si no hubiera nadie.

Vamos como si fuera invisible.
_ Anda ya…- casi no me lo creía.
_ ¡De verdad! No, si ya decía yo

que no lo habías visto…

Porque, es que…

¡has pasado a un escaso metro de él!

¡Y ni caso!

Ni un susto, ni un gritito, ni un

¡Ay Virgen Santa!

_ No me he perdido nada entonces.

Juan se reía.

Él sí que había visto algo

inusual aquella mañana:

Porque un pervertido se había quedado

más mustio que su patética desnudez,

al verse ignorado,

por alguien que tenía en mente

a Constantino Romero, a las obras

del maravilloso Bernini y

al sabor de los panecillos

recién horneados de la calle Ivorra.

Yrene Yuhmi recuerdos, Noviembre 2019

IMG_20191125_001226
The End

Barcelona of the late 90s.
The very very end of the 90s.

Very early, still feeling the touch of the sheet on my cheek,
I stopped at the bakery and bought some just baked small breads. I have already had breakfast at the appartment, in Ivorra Street, in my university student neighborhood, one with a name that sounds like cutting wood or climbing mountains: Sarrià.

People with cystic fibrosis usually have a voracious appetite, and at the same time, a terrible bad digestion. What a dietary contradiction …

That is the reason why I stop shortly after breakfast, in the bakery, warm, with all the store-dependents dressed in white, holding their tongs, like helpful cute crabs, serving donuts, croissants, baguettes, rustic breads and other cereal delights.

Stomp it out, chewing those soft muffins fluffy like clouds, my long knit skirt rubbing the high boots, like textile ears attentive to the awakening of the city, a mixture of voices and machines: urban music.

I passed the El Corte Inglés in the Plaza Maria Cristina, big department stores that mark the passage of the seasons better than the planet Earth … Now it’s time to put the Christmas lights. Thousands and thousands of lights that operators place with infinite patience … What drawing will the lights form when that colored puzzle is finished?

I am not to think about it much, because while I am on my way to the Faculty, I review all the lessons, those of the day and those that I like to review, or I beat around the bush until thinking seriously about sometime clear and concrete, and I lose myself as Alice in a country of a thousand of all kind of wonders …

Ok, to put it more clearly:
I’m “in Babia”
Or on “the moon of Valencia”

Why do people say that idiom?
“You are on the moon of Valencia”

It bugs me…

and I am at it again.

When I reached the long and downhill street that seems to point to the mouth of the faculty building, I accelerated my steps. I guess because of inertia, and because downhill it is easier to get carried away and thoughts multiply by a thousand, and I am already lost in them completely.

It is a lonely street, simple asphalt, with lots of weeds on the sides, and a large banner that announces a foie grass, which at that time announced a very dear television presenter, announcer and voice actor, do you remember? Constantino Romero, the voice of Clint Eastwood, Arnold Schwarzenegger, or
Dark Vader…

That voice, what a voice …
In Star Wars
_Luke I am your father
In terminator
_Sayonara baby
or that final speech of the movie Blade Runner
_I have seen things that you would not believe … (Rutger Hauer)

What a voice, I will tell myself as I pass in front of the huge advertising poster, almost at the entrance of the university …
But before that, a few steps, a few meters before that, a classmate brings me back to me:

_ Yrene!

_ (Huh?) Ah! Hi Juan, good morning.

Juan looks at me with a face of disbelief, a bit of strangeness and a hint of nervous laughter.

_ You have not seen him?
_ See what?
He looked questioningly …
But I didn’t get what he was talking about.What should I have seen? I was so confused that I did not know whether to slow down and look around or continue to not make an ugly one to the slope that was pushing my body forward.

_ To that guy! He opened his coatin front of you!
_ The coat?
_ An exhibitionist, Yrene!

Of course I hadn’t seen it.
And it was so clear that Juan was already looking at me really killing his laugh.
_ The guy must be so disappointed. You have passed as if there was no one. As if he were invisible.
_ Come on …- I almost didn’t believe it.
_ For real! Well, I already said to myself that you had not seen it … Because, it is just that … you have passed so so close to him!
And you ignored it.
Not a scare, not a scream, not a woe, Holy Virgin!

_ I haven’t missed anything then.

Juan laughed. He had seen something unusual that morning.

Because a pervert had become more whitered than his pathetic nakedness, because he was ignored, by someone who had in mind Constantino Romero, the works of the wonderful Bernini and the taste of freshly baked muffins from Ivorra Street.

Yrene Yuhmi Memories, November 2019

A qué olían los Inviernos / Little prayer for Homeless 昔の冬の匂い

YRENE SARAH ESKIMALES EN VERANO (2)
Sarah and Yrene Yuhmi

Los inviernos solían oler
a mandarinas y a leña, 
a sopa caliente
y a chocolate negro, bien espeso...
Los inviernos te presionaban
las sienes con sus helados dedos, 
molestándote y obligándote 
a vestir guantes, 
gorros y botas de montañero.

Cada vez se hace más duro, 
hay menos mandarinas, 
menos leña y menos fuego.
Menos ropa y más dolor, 
menos dulces y más miedos.

Ay aquellos que tenéis 
como cama calle fría!
quién pudiera daros 
si quiera la mitad de 
mis recuerdos, en forma de frutas, 
calor, cama y abrazos sinceros...


Yrene Yuhmi 22 11 2019



brown haired boy
Photo by Arvind shakya on Pexels.com

 

Winters used to smell

like tangerines and wood, hot soup

and dark chocolate, very thick …

Winters pressed your temples

with their icy fingers,

bothering you and forcing you

to wear gloves,

hats and mountaineer’s boots.

Time by time Winter gets harder,

there are less tangerines,

less wood and less fire.

Less clothes and more pain,

less candy and more fears.

Oh those who have

the cold street as a bed!

Who could give you

even half of my memories,

in the form of fruits,

heat, bed and sincere hugs …
Yrene Yuhmi 22th November Year 2019

20191122_135114
Ukiyoe Japan art

 

かつてみかんや

木のような匂い

がしていた冬:

温かいスープ

そして

非常に厚い…

ダークチョコレート。。。

 

冬は氷の指でこめかみを圧迫し、

あなたを悩ませ、

手袋、帽子、

登山家のブーツを

着用させられました。

年々経ちながら、

難しくなるたびに冬、

みかん、木材、

火が全部少なくなります。

衣服が減り、痛みが増し、

キャンディーが減り、恐怖が増します。

ああ、冷たい路上はベッド

としてしか持ってない人々よ!

果物、暑さ、ベッド、抱擁も、

誠実になった

私の思い出の半分さえも

あなたに与えることが出来たらね。。。

イレーネ優海より 11月 22日 2019年

 

Y conocí a mis mejores amigos: mis hermanos.

 

pingu
Pingu 

Ojalá pudiera daros la felicidad

que me distéis,

la que me seguís dando,

multiplicada por mil millones de eras.
Cuando me pregunto que hago yo aquí,

en este mundo y con esta vida,

vuestras sonrisas me vienen a la mente,

diapositivas de manos pequeñas

jugando en el terreno,

imaginando aventuras bajo el sol de esos

inviernos llenos de sueños pagano-cristianos,

bajo esas estrelladas noches

de esos veranos llenos de cuentos improvisados.

Si estoy aquí es para veros,

sentiros y quereros,

aunque nunca sea suficiente…

Aunque no pueda ayudaros ni protegeros,

os llevo a fuego en el pecho y en el pensamiento.

Nada más fuerte que nuestro lazo.

Mi mayor amor, mi orgullo, mi energía: Mis hermanos.

Yrene Yuhmi 2019

shin chan y himawari
Shin chan y Himawari

I wish I could give you

the happiness you both gave me,

the happiness you both

keep giving me,

multiplied by a billion years.
When I wonder what I do here,

in this world and with this life,

your smiles come to my mind,

slideshows of small hands

playing on the ground,

imagining adventures

under the sun of those

winters ruled by

pagan-Christian dreams,

under those starry nights

of those summers

filled with improvised stories.

If I am here it’s to see you both,

feel and love you,

even if it is never enough …
Although I cannot help you or protect you,

I carry you in my heart and thoughts.
Nothing stronger than our bond.

My greatest love, my pride, my energy: My brothers.

Yrene Yuhmi 2019

 

 

img-20191105-wa0012
Kids doddles

大好きな妹と弟へ

二人ともが私に与えてくれた幸せ、

今もそのきらきらな幸せをくれていること感謝していて、

二人ともにその幸せ10億倍を返したい。
ここで、この世界で、この人生で

私が何をしているのだろうかと思うと、

二人共の笑顔が思い浮かぶ、

小さな手のスライドショー

地面で遊んで、太陽の下での冒険を想像して、

星空の下で物語いっぱいを作り出して、

イースターの時も、一緒に、

真夏の時も、一緒に。。。

紅葉の時も、一緒に、

クリスマスの時に、一緒に、

今はバレバレですが、

心がつながっています。

私がここにいるなら、

たとえそれが十分ではないとしても、

2人「友」に会いたい、感じたい、

心を込めて愛を与えたい。

私は二人を助けたり、

守ったりすることは

出来ませんが、

二人ともを私の

胸と心の中に火で刻めている。

永遠にね。
この絆ほど強いものはありません。
私の最大の愛、

私の誇り、

私の元気の素:

私の弟妹。

イレーネ優海 2019

 

publicdomainq-0003428fcx
兄妹の絆

 

 

Ganas de llorar ⁂ Just want to cry ⁂ ただ泣きたい

Rapunzel
Yrene Yuhmi sketches Tangled Disney

Sólo ganas de llorar.

Ver cómo en nombre de la Libertad,
se blande la bandera de la violencia,

se hiere al prójimo,

se queman las calles,

se aterroriza a tu propia gente…

Ver cómo en nombre de la Libertad,

no soy libre,

porque tengo otra lengua,

tengo otro linaje,

otros rasgos, otro color.

Ver cómo en nombre de la Libertad

se arrebata la libertad misma.

Sólo ganas de llorar.

Sólo tristeza y abandono.
Soledad e impotencia.

Y seguir manteniendo las fuerzas

para luchar contra

la maldita enfermedad rara

que me tocó.

Porque hay que seguir viva,

hay que seguir mirando adelante.

Aunque delante de mi tenga

un muro de odio racial

que no comprendo, ni comprenderé jamás.
yrene yuhmi 18 octubre 2019

 

Just want to cry.

Seeing how in the name of Freedom,

the flag of violence is raised,

your neighbor is hurt,

the streets are burned,

your own people are terrified …

Seeing how in the name of Freedom,
I am not free,

because I have another language,

I have another lineage,

other features, another color.

Seeing how in the name of Freedom
Freedom itself is taken away.

Just want to cry.

Only sadness and abandonment.
Loneliness and helplessness.

And keep up the strength

To fight the damn

weird disease that genes gave me.

Because I have to stay alive,

I have to keep looking forward.

Although in front of me there is a wall of

Racism that

I do not understand,

nor will I ever understand.
yrene yuhmi October 18, 2019

 

scenic view of mount fuji
Photo by Tirachard Kumtanom on Pexels.com

ただ泣きたい。

自由の名において、

暴力の旗が掲げられ、

あなたの隣人が傷つき、

通りが焼け、

他の人間が怖がります…

自由の名において

私には自由がありません。

私には別の言語がありますから

別の人種がありますから、

別の特性を持ってるから、

別の肌の色があるからです。

見てると心痛みます:

自由の名において、

自由そのものは奪われます。

ただ泣きたい。

ただ悲しみと放棄
ただ孤独と無力感。

そして自分の強さを維持する、
私は毎日、毎分,毎秒、

向き合わないといけない

この難病と戦うために。

生き続ける必要があるので、

前向きで生きて、

楽しいことも難しいことも、

人生の全部を味わいたい、

でもね、私の前には

すごい壁があります。

小さな幸せでも、

誰でも簡単手に

入れているものなのに、

私には大冒険のような

難しい道になります。

だから、こんな人間な態度を

私は理解していないし、

理解すること

もできないという「人種主義。」
イレーネ優海  より 2019年10月18日

Yrene Yuhmi Bushido
イレーネ優海

Vivir sin miedo

img_20191003_162624
yrene yuhmi garden

 

Si pudiera salir corriendo dejaría atrás hasta mis pasos.

Si pudiera salir huyendo

no podrían saber de mí ni las aves

que desde el cielo todo lo observan.

Si pudiera vivir sin miedo

no habría felicidad que no pudiera atrapar

con estas dos pequeñas manos.

Si pudiera vivir sin el control de sus grilletes

cuán ligero estaría me ha agotado corazón.

22 julio 2019

© Yrene Yuhmi

 

If I could run away

I would leave behind my own steps.

If I could run away,

nor even the birds

that observe everything from the sky

wouldn’t know about me.

If I could live without fear

there would be no happiness

that I couldn’t catch with

these two little hands.

If I could live without the control

of their shackles,

how light my exhausted heart would be!

Merry “Maries” alive Navidad 2018

Hoy, Navidad, no tengo que decirlo. Medio mundo se está gastando los duros
en aparentar ser felices…
Pero como soy cristiana, celebro que Nuestro Señor Jesus naciera,
en un pueblo pequeño, sin casa ni comida, en una noche que probablemente,
fuera en diciembre o en marzo, fue bien fría.

Voy a rezar por las mujeres, por las que han sido asesinadas,
por las que viven muriendo un poquito cada día, y por las que, por desgracia,
moriremos en un futuro cercano, si los políticos que llevan el país,
no cambian las leyes de una vez.
Muy ocupados están en tener el pandero en su ansiado puesto,
jugando a venerar banderas y a pelearse por los colores que cada cual idolatra…

Por ellos no rezo, pero sí por el pueblo, ese sí que es mi bandera. Ellas y ellos
sí que llevan el país, pero a hombros. Y cómo pesa…

Que Dios os bendiga con paz, que Budha os de sabiduría,
que Vishnu os ayude a unir lazos y Alah os calme el dolor de las heridas.

Que la música no falte en vuestras casas,
que los libros no vistan más de polvo.

Que los maridos no malmariden,

que las mujeres tengan libertad.
Que las hadas y los duendes velen por los niños,
y no haya monstruo que no se pueda derrotar.

Que no haya enfermedad que no se cure,
y que no tengamos que poner nombres raros y largos a las jugarretas de los genes.

Que no haya mesa sin pan ni cama sin techo,
que no haya poeta sin alma ni panadero sin paciencia,
que no olvidemos a la hermana que tenemos a cien pasos,
que no dejemos de dar abrazos, que es lo nuestro.
Y que no falte en ninguna casa la risa, porque sin reír,
la vida, casi que no merece la pena.
Feliz Navidad, Felices Pascuas, Merry Xmas.

 

LOVE & PEACE

yrene yuhmi 2018

https://docs.google.com/document/d/1kdgjXMzfrb3SXwc3SIKt_WX2PpoZsJECemiArFEFWT8/edit?usp=sharing

 

 

Yes, Merry Xmas, Happy Holidays! I must say. Everybody spending a lot of money to

pretend we are happy together even if we are not.

But I am Christian so I celebrate that Our Lord Jesus came to this world,

born in a little town, without bread neither home, during a cold night,

(no matter His BirthDay was in December or in March, it had to be chilling right?)

I am going to pray for THE WOMEN. The ones who has been murdered, the ones who

are being murdered little by little day by day, and the ones who are going to be

murdered, sadly, if our politics don’t change the laws for good. But they are too busy

accommodating their butts on their so desired positions,

playing to worship flags, and fight over  the colors that each of them adores.

I don’t pray for them, but I pray for the People, women and men, who really

lead this country, carry it on their backs, not easy task, because it’s heavy, so heavy…

 

May God bless you with Peace, May Budha gives you wisdom,

May Vishnu help you keep the bonds, May Alah ease the pain of your wounds.

 

Wish you have music everyday all your life,

And that our books don’t dress with dust anymore.

 

Wish the fairies and elves, look after our children,

and all monsters can be defeated.

 

With not more disease can’t be incurable,

and that we would not have to put strange names to

the pranks of the gene.

 

Wish there is not table without bread,

Wish there is not poet without soul, and not baker without patience.

 

Wish we don’t forget the sister who lives just next door,

and that we don’t stop giving hugs, we are cut our for this!

 

And I wish every home has laughs, because without laughing,

this Life is not worth the effort.

 

Feliz Navidad, Merry Xmas, Happy Holdidays.

I mean it!!

LOVE & PEACE

yrene yuhmi 2018

 

IMG_3062.JPG

This big teddy bear is as old as I am ^^ She has been with me until now…Memories of better times, childhood and dreams, innocency and laughs. I want to be a kid again!

 

 

 

 

 

 

 

 

 

 

 

 

ELLA no necesita un meme por WhatsApp

La familia, los amigos, los lazos, los conocidos…miles de memes y citas compartidas por WhatsApp o publicadas en Facebook. Qué fácil, ¿verdad? Muy fácil este tipo de compromiso humano y social.

Cuando en las noticias vemos que han matado a otra mujer en España, que su marido o pareja o ex la ha asesinado,

aparecen sus vecinos y hermanos, familiares indignados, con carteles y lagrimones, que no sé si creerme, por desgracia.

¿Cómo es posible que no sepa alguien que su hermana vive con un psicópata/un tipo agresivo sin alma ni principios?

La verdadera familia está siempre contigo, sabe qué te preocupa, qué te duele, qué te gusta, qué te hace feliz, te ayuda y se deja ayudar, sabe a qué hora te vas a dormir, y cuándo te levantas.

Sabe con quién vives: porque esa verdadera familia ha vivido también contigo y con esa persona que dice quererte.

Conoce a esa persona como tú misma.

Este país necesita menos hipócritas y más valientes si queremos cambiar la situación de horror que viven muchas mujeres, de todas las edades y nacionalidades.

Si queremos acabar con el abandono, la depresión, la incomprensión, la soledad del discapacitado, la tortura del sujeto sin nombre que aterroriza a diario a su mujer y a sus hijos….si queremos acabar con todo este infierno: demos la cara, hablemos directamente con quien queremos hablar, no finjamos que todo va bien porque me lo han contado.

Sí, en primera persona: que te lo expliquen ELLAS, qué tienen voz y derecho a levantarla. Pero si no estás con ella, si no la ves, ni sabes de su día a día, ¿qué porras vas a lograr?

Olvida el dibujo adorable de buenas noches en el WhatsApp y convive y actúa como quien eres: una hermana, una vecina, una amiga, una cuñada, una prima.

Si no te apetece, sal de su vida y miéntele a otra.

Pero no a ella: ya tiene a un gran enemigo pegado a su existencia, no necesita más intrusos que no la apoyen ni la crean.

A ellas: JUSTICIA, y una sencilla vida SIN grilletes ni abandono.

Rezo de corazón por ellas; lucho con mis palabras por ellas.

Yrene Yuhmi 2018 Agosto

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*

The Master of the Murder Castle

Aniponada cumpleañera

Un año más…no pensé que llegara a cumplirlos: la esperanza de vida en la fibrosis quística ronda ahora en los 40 años. No lo pienso demasiado, simplemente vivo.

Yo quería nacer el 25 de diciembre pero me adelanté quizás porque ya desde el vientre de mi madre, me sentía unida a Japón y quería celebrar muchas cosas con este mi querido país de los sueños…así que nací el día Nacional de Japón, como un regalito De Dios y Buda para compensar la jugarreta genética.

Para mí, mi cumpleaños dura casi todas las fiestas, desde el día de la lotería del gordo, hasta Año Nuevo y Día de Reyes. Lo vivo con la misma emoción que cuando era niña.

Es como si todo el cosmos estuviera rumiando sorpresas para deleitarme: un cosmos de amig@s que se confabulan para celebrar que nací, ¡a pesar de los pesares! Es de agradecer infinitamente 感謝(〃ω〃)

 

No me importa cumplir años, me importa no cumplirlos.
Me acuerdo de los amig@s que no han podido cumplirlos conmigo, con sus familias, por culpa de la fibrosis quística.

Con mi amiga Lezly Hodge, de Oklahoma, hablamos un día sobre un sueño (un sueño que tiene que ver con los cumpleaños y la familia, un sueño pequeño que creemos muy fácil de cumplir)

_We will get to be grandmothers for sure!
_Yes! We must believe!

Llegar a ser abuelas, así de fácil, así de poco apetecible para la gente de HOY que solo piensa en rejuvenecer, en no tener arrugas, en cumplir siempre los veinte…

Lezly no cumplió los 22.
No cumplirá los 40 como yo. Pero me he comprometido a vivir por ella todo lo que vivo, sencillo o impresionante, emocionante o aburrido. Vivir por todos los que se fueron y cumplir los años con ellos y por ellos.

Cumplir años y perseguir sueños, cumplir sueños y perseguir años.

歳をとると夢が叶える、夢をとると歳が叶える!

Con la gente a la quiero y admiro, mi familia, mis amigos y los genias y genios que llenan mi vida de ilusión, mis ídolos.

Gracias por la vida, gracias por las sonrisas, gracias por las risas, gracias por los deseos.
Os devolveré todo con mucha más vida, muchas más sonrisas, risas y deseos.

Que esa música de la vida se haga bucle y karma, y todo sea un toma y daca de dibujar sonrisas, y recordar a las personas que un día, nos regalaron tantas como ahora podemos sembrar.

Perdonad el batiburrillo de sentimientos y palabras, no sé si será la fiebre, pero bueno, escrito queda.

Muchas arigatou a tod@s!
Yrene Yuhmi

BDAY VIDEO PART 2 💫🎂💫

https://dkamubwugfj42.cloudfront.net/2017/01/17/kv4eGtN77z-original-1080p-aLc1h80J.mov