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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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it's all good

April 11, 2015

i often get asked "how's life?"

should i answer with the rawness? or just with what i always say ... it's all good.
should i/we throw the negative reality at you ? do you REALLY want to feel it every time?
the tears filled of shame from waking up to diarrhea all splattered in my boxers and not being able to do a damn thing about it, but wait, to be wiped down?
the frustration of not being able to communicate what i want/ need to my caregivers or family?
the fact that how people around feel or are fatigued that day, DIRECTLY affects my day?
and again, not being able to do a damn thing about it?
the heart ripping rage inside from not getting my opinions heard or from feeling so damn helpless in this world
or maybe the sorrows of imagining "what could have been"?
or the loneliness of watching everybody do things i envy... so much... ?

... naaahh... it's all good... i'll keep it in, to keep you close ...


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look at my hole 見て、穴がでかーい。

March 23, 2015

every 2 weeks, doc comes to change my tracheotomy tube thingy in my throat.
don't let my non-expressive facials fool you.
although doc is quick and good, it's pretty painful.
just another day... can't believe it's been 2 years already since i got this collar ...

2週間に1度、気管切開の喉に入ってる部分、カニューレを交換している。
顔は無表情になってしまったが誤解がないように。
先生は早いしうまいけど、か・な・り痛い。
「ALSとのある日」、、、この首輪をつけられてもう2年が過ぎた、、、


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うつ depressed

March 20, 2015

医者にこれ以上安定剤を飲むとしたらうつ病の薬になると言われた。
俺?うつなわけねーだろ、、、うつかな?
ま、今やどーでもいいや。
ね。ははは。

i was told by doc if i am to take more anxiety pills he'll have to put me on antidepressants...
wha? me? depressed? hell no... am i depressed?
oh well, what difference does it make now.
ya? haha


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picture by masako

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