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藤田正裕

1979年東京生まれ。
マッキャンエリクソン、プランニングディレクター
筋萎縮性側索硬化症 (ALS) 患者
2010年11月に難病診断を受け、現在は自宅から仕事を続けている。
難病ALSの認知を高めるため、自らの体験を自らの言葉でシェアしていきたい。

Hiro Fujita
Planning Director at McCann Erickson
ALS Patient (a.k.a. Lou Gehrig’s disease)
I am not a creator or an entertainer that people may know. However, I do have a few things to share through my fight against ALS. This has been a devastating yet invaluable experience. I grew up as an expat’s child in Europe, U.S., and Japan; I was an all star athlete in soccer, football and track; I work with the most talented and caring group of professionals at the biggest advertising agency; I am surrounded by hundreds of loving family and friends; I drank and partied like a rock star; But I have never truly realized or appreciated what I had been blessed with until I encountered ALS. Every value I have had has changed. I hope I can share some of this with you and inspire any kind of action to eliminate similar injustices.  Let’s go.

http://end-als.com/

Facebook: http://www.facebook.com/people/Hiro-Fujita/826240262
Email: hirofujita.als@gmail.com

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my ears...  耳が、、、

September 16, 2014

土曜日に耳をプチ手術した。
ナントカ中耳炎になったので、鼓膜を切り、中に溜まった水・ウミをぬいて、空気を通すためチューブを入れた。左右。
すごい簡単な手術と言われてた。確かに簡単だったが信じられん程痛かった。
ストップかけようとしたが、伝わらず我慢。チョー痛かった、、、
何故か昔、歌舞伎町で耳に割り箸が刺さったまま血だらけなのに普通に歩いてたサラリーマンを思い出した。笑、、、
とにかく聞こえるようになった!
またまたまた、体にチューブを入れる中、音の大切さ、音への欲、感謝を再び感じた。
しばらく病院を歩く人の足音、いろんなとこでの会話、空調・エスカレーターの音に圧倒されながら楽しんでた。
何してんだか、、、
楽しくねーよって?、、、笑


so on saturday, i had a tiny surgery for an ear infection.
they cut my ear drums, sucked the fluids out, and placed a tube in so air gets through.
i was told its a really simple procedure, and it was... But also REALLY painful.
so much that i tried stopping them but nobody understood me so i just had to take it... daaamn it hurt...
somehow, it reminded me of seeing a businessman about 10 yrs ago wobbling around Kabukicho with chopsticks stuck in his ears bleeding... (must of made a mistake with the wrong ppl)
anyway, i can hear again!
as i get yet another tube implanted in me, i was feeling the importance, the need of and appreciation for sound.
for a while, i listened and enjoyed the sound of footsteps, chatter, the ac, the escalators, etc
then realizing, wtf am i "enjoying"... hahaha
crazy...
the small things...

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you're not you 映画

September 6, 2014

it's only a trailer of a movie of person w/ALS, but i can't stop watching this...
"i want to scream..." perfect reaction as well...
damn, that's SO spot on, and painful...

ALS患者についての映画のただの予告編なのに何回もみてしまう、、、
「叫びたい、、、」対応も完璧、、、
完全にドンピシャ、そして痛すぎる、、、


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it never stops... 止まらない、、、

September 4, 2014

it never stops...

for the first time in my post-infant life, I shat myself while asleep today...
I was dreaming, bbqing with some good friends.
then suddenly a blinding light came down from the sky...
waking up to a warm wetness... wtf...
it was out already, so I thought fuck it, and sang "let it go" in my head... yea, funny...

I applaud ALS for its undying persistence/ determination to never stop coming after our humility/ pride/ dignity.


止まらない、、、

今朝、赤ちゃん卒業後、初めて睡眠中ウンコを漏らした、、、
夢の中、友達とバーベキューしてると突然白いまぶしい光が降りてきた。
生ぬるい感触に起きた、、、サイテーだ、、、
もう半分出ちゃってたから何故か頭の中で「Let it go」を歌って出した、、、面白いよね

しかしALSにはリスペクトすら感じる。残ってる羞恥心、プライド、尊厳を永遠と奪い続ける決意の強さ。強敵


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