are visitors' questions and comments, with responses from Joel and
Michael. The most recent comments go on top. Scroll down to read
July 26, 2002 at 22:38:43
Hello...I am writing because somehow through exhaustive internet
research I found your site, Joel... I was excited by the depiction
of what happened in your eyes. I have been so frustrated trying
to explain to my husband what I have been seeing...Mine is about
at your 10 year mark....Just trying to explain the "shower curtain"
thing didn't work...I felt bad after I showed him your depiction
because he cried...he would rather be blind himself than to sit
helpless and watch me do it. I have retinal vasculitis...major drugs
that have morphed me into someone else..Your story about driving
I will have to say made me mad at first becuase I do not want to
be dependant...I keep telling myself that as long as I drive in
town where I don't have to look at road signs that I am not a danger..after
all.. I'm not drunk or senile or distracted...I pay very close attention...This
stuff sucks and you have helped me be able to tell my husband that
it's not safe anymore..even though! it will be a great burden on
him..I would die if I hurt someone due to pride..Hard call..I am
much luckier than you in many ways because I have a soul mate that
is sufferering more than I am because he can't do anything about
it..plus he has to come to the realization that for the rest of
his life it will be a major adjustment...he is a guy after all and
his detail brain lacks...It's an adjustment to me going blind..for
both of us...he thinks he can't tell me that he is angry that suddenly,
if someone needs to drive, that he has to do it...if someone needs
to walk across the street, he has to help me...he didn't sign up
for this, but he thinks he can't tell me that it's just as hard
for him as it is for me...After reading your dating story...my comment
to Kent was..."see how lucky I am?" God bless you for your eloquent
prose and story of courage and hope..Godspeed..
July 25, 2002 at 21:57:24
I am so impressed with the exploratorium for including this in their
site. Joel, your writing is superb. I am gradually losing sight
myself, but as luck would have it so far, only in one eye. Even
losing half my sight has been a challenge. I have feared becoming
completely blind, but have also known that somehow if it happened
I would survive and learn to be happy. Both the facts on adaptive
technologies and your beautifully written thoughts are so very appreciated.
I have come across a lot of information on the web, but none of
it has been in the least bit personal or emotionally engaging. Great
job raising awareness! Thanks so much and good luck to you.
July 23, 2002 at 23:31:07
I'm 47, diagnosed with RP (tunnel vision) at age 30. It sucks but
that's life. What are you going to do ? Giving up on driving has
easily been the worst part. My last car was a gift to myself, I
knew it would be my last. I loved competing in autocross and won
many events, that's all gone now. Lest you think I wallow in self
pity,don't,I have a beautiful daughter and two grandsons,six and
two, that make my life fulfilling. Fully paid retirement eases the
effects of the disease as well. I truly believe they will find some
kind of actual help for us in our lifetime. I just hope I don't
have to go back to work !
July 23, 2002 at 13:47:18
Hi, I was given your site by my eye doctor, he felt you and a very
clear way to explain what was happening to me as well what would
happen. Althought it has taken me a few weeks to look at the site,
as I was scared I finally came today. I now have a better understanding,
and it scares me to death. I am a 43 year old female who has been
been wearing glass since I was in the 5 th grade. My last exam I
told the doctor about this burriness that had been happening the
sevarl years and was happening more and more. After some test and
a second evaluation I was told I have retinitis pigmentosa, and
there is not a lot that can be done at this time. I have lost some
a lot of my outer vision, (sorry can't spell that word) and burriness
comes to me after I have been writing or spend a lot of time reading.
I love art and writing I do a lot of art work on my computer as
well as take pictures. I am real scared, I have not told any one
close to me, as I do not want pitty. But now I feel after ! watching
the video I need to tell them as it dose not seem fair for me to
build on a new relationship with out letting them know. I know one
thing I have not come as far as I have in my life to let this get
me... but I need be honset with them and myself so thank you for
being here and for the great job you have done expalining this.
I will be sharing it with them too.
July 17, 2002 at 11:52:09
Hi Joel, I'm writing because my mom has wet macular degeneration.
She has only peripheral vision now - the loss began at age 57, and
she's now 62. I wanted to ask you if there are websites or other
services for the legally blind, and anything you know of that could
help her in using a PC? She took up painting a few years ago, and
would like to be able to put up a simple website with some of her
work. Also, what if anything do you know about Braille? (sp) For
some reason, I can't find anything. Maybe I'm spelling it wrong:-)
Thanks for any info you might have.
July 16, 2002 at 21:12:28
Great site, great concept, great way of talking about "disability",
but when are we gonna see subtitled/ captioned versions of the videos
you have in this site? I am Deaf you see.
July 14, 2002 at 05:11:53
I run a Private Daycare and for my summer program of older children.
I have chosen that they learn and understand the value of their
vision and especially the understanding of children that cannot
see. I thank you kindly for the use of this site.
July 3, 2002 at 06:53:39
You had a defining moment that forced your decision to stop driving.
I think about my grandmother, an elderly friend of the family, my
now-deceased Aunt J.V., all of whom should have stopped driving
years ago. Their reflexes are too slow, their vision too impaired.
Really, it's not safe. Yet, I try to imagine myself turning in my
license, as you had to on that day, never to drive again. I think
more than anything it would be the loss of power over myself that
I would miss the most. I cannot drive my elderly friends and relatives
to their every appointment, run them on their errands, take them
to visit their friends, God forbid they should want to just go somewhere
to do something useless and fun, like fishing! So, these days, I
try to ease my foot off the gas pedal, and cruise along behind that
elderly slow driver. Does it really matter if I get home 5 minutes
June 30, 2002 at 14:45:01
i feel very sorry for you. I hope that someone out there will find
a cure for you.
June 29, 2002 at 14:13:31
i like this because it is very easy to learn and we all like to
do these type of things.
June 25, 2002 at 21:39:23
Hi Joel. I just wanted to let you know what a most extraordinary
teacher you are. You have shared the challenge you have faced in
losing your vision and turned your experience into a lesson on how
to treasure and savor what we do have. Your friends are lucky to
know you. And those who stumble upon your site have discovered a
jewel on the Net. I write this in true admiration of a man who sees
with his heart and soul.
June 20, 2002 at 18:59:43
Wonderfully written. I know precisely how you feel and could never
ecxpress it as effectively. Thanks for sharing this with us all.
June 20, 2002 at 21:06:05
may be help for you eyesight. It is the juice from a fruit grown
in the tropics. It has restored sight for people suffering from
Iris Idis, macular degeneration, cateracts, etc. It has been used
in India for over 4,000 years and by islanders in the Sooth Pacific
for over 2,000 years. The highest qualiity is called Tahitian Noni
Juice. Go to the website below and the odds are very high you will
find at least one (and probably more) testimonials on it helping
people and their eyesight. I have other testimonials, information
from doctors, scientists and research information on it if you are
interested. Since Morinda refunds 100% of your cost if you are not
completely satisfied, there is NO finanical risk. Plus they are
the FASTEST growing company in the last 20 years with sales in excess
of $32,000,000 a month so it must work! http://incc.org/ I wish
you the best!
vision researcher replies:
the last few years, a wide variety of wholesome and therapeutic
properties have been attributed to noni juice, made from the fruit
of the Morinda citrifolia and marketed by the Morinda company: Noni
juice has been claimed to suppress tumor growth, boost the immune
system, and have powerful antioxidant properties. Few of these claims
have been rigorously tested, however, and the peer-reviewed literature
counts fewer than a half dozen papers; these papers document the
efficacy of noni juice in suppressing the growth and proliferation
of certain tumors. As best I can ascertain, Dr. Reinhardt was not
involved in any of these publications, but he has published widely
in the popular press.
is plausible that noni juice may be of some benefit in preventing
AMD and other diseases of aging, but it is not clear if and why
it might have a beneficial effect on inherited degenerative conditions
such as RP. What is clear, though, is that noni juice has a sophisticated
publicity machinery promoting it, or it would not have reached close
to a half billion dollars in annual sales in about 6 years.
adding retinal degeneration patients to the converts, the Morinda
company and its PR should invest a substantial portion of their
sales volume in high quality research, and demonstrate how their
product can benefit these patients.
Professor of Ophthalmology
Lions Vision Research & Rehab Center
Johns Hopkins Univ. Sch. of Medicine
June 20, 2002 at 14:06:38
I thought your story was inspirational and touching in every way..
you are an icon to kid around the world. Thank you. Bye
June 19, 2002 at 17:48:41
Michael and Joel: My hat is off to both of you! To Michael, for
asking so many of the right questions, and to Joel, for being so
candid. You have done an amazing job capturing many facets of Joel's
life, and especially those that we, the sighted, often wonder about.
Moreover, the site looks great, and has good information about this
mysterious process called retinal degeneration. If I can make one
suggestion, it would be to add some links to organizations that
provide more specific information about the genetics and possible
treatments, to organizations that provide support to patients and
their families, and to organizations that sponsor research to find
treatments for these disorders. But most of all, I hope that they
will add links to this unique presentation of Joel's world. Thanks
so much to both of you!
Professor of Ophthalmology
Lions Vision Research & Rehab Center
Johns Hopkins Univ. Sch. of Medicine