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Tag Archives: Retinitis Pigmentosa

Merry Christmas to all…

Christmas is a hard time for me, and yet I still look forward to it every year.  I love the carols and the decorations and lights.  At the same time I recognise that others, specifically my friend Shadow, can’t see the decorations and lights and wish she and others could.  I also wish others could hear the carols.  I take so much for granted and shouldn’t. 

This morning I checked out TED, and one of the newly released talks, is from TEDMED and it gave me hope.  Hope for my friend with RP.  Hope for a wide variety of people who deal with challenges we cannot fully ever understand.

Please watch or listen.  Just knowing Shadow has made me aware of things and when I watch a TED talk, I find myself checking to see if the message is clear if I only listen – a small glimpse into her world, but something we all should consider.

Edit due to lack of coffee:

At TEDMED, Sheila Nirenberg shows a bold way to create sight in people with certain kinds of blindness: by hooking into the optic nerve and sending signals from a camera direct to the brain.

Sheila Nirenberg studies how the brain encodes information — possibly allowing us to decode it, and maybe develop prosthetic sensory devices.

Merry Christmas!

I wish you all a peaceful, safe, and happy holiday!

 
3 Comments

Posted by on December 25, 2011 in Uncategorized

 

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The Cost of Knowledge

When I think about all the stories I have heard, and read, by adoptees, who have spent hundreds of dollars trying to get their non-identifying information from agencies, courts, and the like, only to get the run-around, told files couldn’t be found, possibly, waiting for month after month to hear something, told they would have to go through hours of counseling, and, in general, just, simply, strung along, or turned down all together, I feel a bit confused as to why. It was so easy for me.

Knowing how many adoptees, search for years, trying to find their families of origin, only to come up empty-handed, constantly running into brick wall after brick wall, I can’t help but feel a little guilty. It was all so easy for me. It was so simple. It happened so fast. It was, basically, just handed to me.

I can’t tell you how many times that I’ve heard adoptees trying to get some kind of information on, or searching for, their biological families, tell those of us who have found our families of origin, how lucky we are; how grateful we should be for our luck no matter the outcome of our reunions. Of course, I understand people are saying this out of frustration, pain, and grief. I just find it interesting when one adoptee tells another how lucky they are, and they should be grateful for just having the opportunity to reunite, as so many others will never have that opportunity. True though it may be, to some extent, it’s so easy to say when a person is frustrated with searching, angry, and grieving the realization that they may never find the ones they are searching for. It is so easy to take out a person’s anger, frustration, and grief, at the unfairness of adoption, search, and reunion, on those, who have what you want, with no real thought, or consideration given to what that person may have had to go through.

Yes, sometimes, when I read the stories of adoptees struggling with their search, hitting brick walls, realizing that they may never find, never know anything out about their families of origin, I, sometimes, feel, truly, lucky. I feel, truly grateful, and, oh, yes, I, sincerely, feel, guilty, for my good fortune of being diagnosed with a hereditary eye disease that would later take my sight.

Those feelings remind me, aren’t all adoptees lucky; lucky to be adopted, and shouldn’t all adoptees be grateful; grateful someone adopted us? It’s so obvious, this ingrained thought process adoptees have of being so undeserving that we feel guilt over such things like just wanting to know our original identities, our families of origin, so much so, that we will even tell each other we should be grateful, and feel lucky, because what we never really come out and say, but imply, to each other, and even ourselves, is that adoptees really don’t deserve any more than what we are told we can have; allowed to have by others, without whom, where would we be?

I know the value of what I have been able to obtain. It is priceless to me. At the time, however, I had no way of knowing just exactly what my good “luck” would cost me. It may make people uncomfortable when I say had it not been for the diagnosis of a rare, incurable, hereditary eye disease, which eventually cost me my sight; my adoption story may not be what it is today. Some might even say I’m being overly dramatic when I say that gaining access to my non-identifying information, and subsequent reunions with my families of origin, cost me my sight. It is, however, the price I paid for an opportunity I would not have otherwise had; the opportunity numerous other adoptees will never have.

This wasn’t where I had intended to go today with a post. My intention was just to continue my story. When I think about it, it breaks my heart to know what we, adoptees, must pay for the simple knowledge of our original identities. The cost of simply knowing what all other human beings have the right to know upon birth.

Maybe I’ll continue my story tomorrow.

 
7 Comments

Posted by on September 20, 2011 in Adoption, Ethics, Uncategorized

 

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