Happy New Years Everybody,
I suppose you should take the following with a grain of salt - but these are my thoughts as of today. I'd like to hear any thoughts or reactions to this email so please write them if you wish.
And if I'm wrong about any of facts (or if any of my views seem distorted) I apologize ahead of time.
I Hate:
1. I hate that it has even happened - part of me still feels- 6 months later - can't believe and accept that NAION happened to me.
2. I hate the thought and fear that I might go bi-lateral at any time. The sword of Damocles writ large.
3. I hate how little is really known about NAION. When you read everything you realize that much is unknown about the causes of NAION. Doctors are great at diagnosing NAION, but that's about it.
4. I hate that there is nothing scientifically known about how to prevent another attack which would probably result in becoming bilateral.
5. I hate knocking into people and walls etc.
6. I hate that there are zero treatments out there or even on the horizon. And that the big drug companies are probably not very motivated to discover new treatments given how relatively rare is NAION.
7. I hate having the limitations that NAION has imposed on my life.
8. I hate that I tried Prednisone during the first weeks after my diagnosis - and my vision in my right eye dropped from 50% to 20% instead of improving. My doctor said that in this respect I was "unlucky".
9. I hate all the little things that comes with the territory - difficulty pouring hot water accurately, problems putting keys in locks, problems with steps (especially at night) etc. etc. - usually these things don't matter but sometimes they piss me off. I know - "it's not cancer". "It could be worse." But still - if you have no feet and I have no shoes - I'm sorry about your feet but my feet still get cold.
10.I hate that sometimes I feel a weird pressure in my eye and it makes me (occasionally) feel tired (always cured by a short nap).
I Love:
1. I love the beauty and light that I can see and appreciate - what a beautiful world we live in.
2. I love that my life is pretty much as it was before NAION - this is the silver lining that has delighted me.
3. I love that I turned the fear I felt at diagnosis into motivation to greatly improve all my health habits (especially diet and exercise).
4. I love that I can still drive my car and motorbike and go white-water rafting.
5. I love the inspiration and encouragement I have received from this support group.
6. I love how much one can see and do with (mostly) one eye.
7. I love that while I'm sleeping my NAION doesn't matter.
8. I love that this Korean man - who is legally blind - won the gold medal recently in the Olympics held in London - IN ARCHERY!
9. I love learning about successful people (like Oliver Sacks, Sammy Davis Jr. and Peter Falk) who - despite the fact that they were visually impaired - live or lived life to the fullest.
10.I love the support and understanding I have received from those nearest and dearest to me.
In the kingdom of the blind, the one-eyed man is king.
Desiderius Erasmus
If you can do a half-assed job of anything, you're a one-eyed man in a kingdom of the blind.
Kurt Vonnegut
In a blind town, the one-eyed man is king.
Ken Harrelson
I sleep with one eye open so I can see you breathing.
Hawthorne Heights
To aim and hit, you need one eye only, and one good finger.
Moshe Dayan
I have only one eye. Do you want me to look at the road or the at the speedometer?
Moshe Dayan
It suddenly struck me that that tiny pea, pretty and blue, was the Earth. I put up my thumb and shut one eye, and my thumb blotted out the planet Earth. I didn't feel like a giant. I felt very, very small.
Neil Armstrong
Thanks,
Marc in Bangkok
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