Tag Archives: Retinitis Pigmentosa
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.
I wish you all a peaceful, safe, and happy holiday!
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.
I think it is interesting that people become so defensive, angry, and ready to fight, when the word, denial, is used, especially in regards to adoption. I think a good majority of people have a misconception of the word and denial’s true purpose in life. They hear the word and think of it as something derogatory, an insult to their intelligence, or associate it to total emotional instability; out of touch with any reality at all. That’s just not always the case, and for most people, not the case at all. Denial is, to me, a necessary defense mechanism. It is something we need to help us protect ourselves from things we just are not quite ready to accept about life. Denial is, more or less, a natural pain killer; something to be used to help us as we heal the pain, brought about by the losses in our life, as is anger, when used in the correct manner.
Denial is a natural, normal, and necessary coping mechanism when loss occurs. The first stage, in the 5 stages of grief, is denial. After denial are anger, bargaining, depression, and finally, acceptance. Whenever a loss occurs in life, we will grieve that loss, whether we want to or not, whether we acknowledge the loss or not. We will first deny the loss, or something about the loss, in some way, especially if it is a deeply painful loss. It is how we survive. It is how, we, as humans, heal, learn, and grow.
I’ve gone through each one of the stages as I have dealt with the loss of my sight many, many times, some times repeating the stages, over, and over. When I look back over the years, especially since reunion, I’ve found my adoption journey to be exactly the same. I believe as I dealt with both the loss of my sight and the losses brought about by my adoption, and subsequent reunions, I have spent the majority of that time in some kind of denial and anger. Getting past those stages was the most difficult part. Each time I traveled from denial, to anger, to bargaining, back to denial, back to anger, a little depression setting in for a brief time here and there, and back and forth, and back and forth, not necessarily in any particular order, I was able to accept a little bit more of the reality of my life.
With each tiny bit of acceptance, the cycle would start over again. That is just how it is with grief and loss. It’s a never ending process in life. In the midst of the grief, with each tiny bit of acceptance, there came personal growth and peace of mind in that acceptance. With every gain, there can be a loss, and with every loss, there can be a gain.
With each loss in our life, be it big or little, we all go through the stages of grief, in different degrees of intensity, whether we recognize it, or not, whether we acknowledge it, or not. It is a constant, never ending process, in all areas of our lives. I believe too, in regards to denial, that, a lot of times, the thing people misconceive most is what is actually being denied, and that denial is not so much a concrete thing; black or white. It is a process we all experience in order to grow and heal.
When I say that I am in denial of my blindness, people may think, “What is she talking about? How can a blind person possibly be in denial about being blind?” The majority of people are very understanding, and sympathetic to how difficult it may be for me as a blind person, and they can easily acknowledge such an obvious loss. I can’t tell you how many times I have heard remarks such as, “I am so sorry. I don’t know what I would do if I were you.”, “You have such a great attitude. It would devastate me.”, or “You get by so well, and are always so positive.” It seems to me, though, that most people have trouble associating the loss of my sight as something I should grieve, or how denial plays a role in that loss, and what they perceive as a great, or positive, attitude in regards to my blindness.
People have no trouble understanding a person’s grief when they have lost a loved one to death. Grief is expected, and a time of grieving allowed. The loss is evident, tangible, and most can certainly empathize with a loss due to death. A widow, who sets a plate for her deceased husband, is in obvious denial. If she/he hangs on to their deceased spouse’s belongings, refusing to let anything go, most people understand, and will step back, saying everyone should give them time and space to grieve, and that denial is a natural, and normal thing in such a case.
People will worry about someone, who doesn’t want to talk about their deceased loved one. We expect people to talk, and understand that not talking about it, holding it inside, is, somehow, emotionally unhealthy. We understand that not talking about the feelings of sadness and loss is not denial of the death of the loved one, but denial of the grief brought about by the loss. If grieving a loss, due to death, is an accepted process, why is it so hard for people to understand how necessary it is that we should be allowed, and even expected, to grieve any type of loss in our life?
No one would dream of saying to a widow, who had just lost a spouse to death, “At least, you don’t have to wash his dirty underwear anymore.”, or, “You are so lucky. Look at all that money he left you.” Can you imagine saying such a thing? People will go out of their way to be sympathetic, insist, and encourage people to grieve by talking about their loss due to death. No one would dream of saying to a person grieving the death of a loved one, “Look at the positive”. It could be worse. “ If a person says they missed the dear departed, or are sad, most everyone is understanding and sympathetic, and would never dream of getting angry and saying, “You just need to get over it, move on, and be grateful.“ No one would point a finger at someone, who had lost a loved one, but was struggling with that acceptance, and say, “You need to get a clue. You are in denial. “Most people would try to be empathetic, considerate, and help them work through the process, and talk it out, because it would be understood that they were just grieving a loss.
When it comes to other losses in life, what is the first thing usually said, or done? People insist we don’t dwell on the loss, don’t want to talk about the loss, and sometimes, even insist, that we deny that we have lost anything at all. We must think positive, whether it’s the loss of sight, the loss of a marriage due to divorce, or a loss due to adoption. We are taught, and told, to deny there was ever a loss, and get on with life, because it could have been, could be, worse? I have heard, on more than one occasion, by more than one person, the comment of, “Well, at least, you don’t have cancer. “ People mean well, but such a positive thought like that is a little like telling an adoptee, “Aren’t you glad you weren’t aborted.”, or a widow, who just lost her husband, “Well, aren’t you glad you don’t have to cook him dinner, and wash his dirty underwear anymore? “ When you hear statements like that, well, denial seems like a pretty fabulous place to be. Shouldn’t we all be thankful, and grateful, for the blessings in our lives, when compared to such trivial losses as an adoptee’s biological family, eyesight, or the death of a loved one? Why is it that, in many cases of loss, people simply expect a person to accept the loss, without allowing them to go through the process of first grieving that loss by denying something in regards to it?
Over the years as my sight deteriorated, and the years since I’ve become totally blind, very few people, who remarked about how well I managed as a blind person, what a great attitude I had, and how positive I seemed, ever recognized what they were really witnessing was denial of my blindness. They never recognized how the anger took over, when denial no longer stopped the pain inside. What they saw as determination was me hanging on to the person I was as a sighted person, because, who I might be as a blind person scared the hell out of me.
What they didn’t recognize was the fear and terror I felt when I thought about the future, my future, as a person with no sight, and how that might change my life, a life I didn’t want to change. No one saw that not only was it my eyesight that I was losing, but my life as I knew it; the only life I had ever known, and the life I was most secure in. What most everyone saw as stubborn independence, an admirable quality to most considering my situation, was just the beginning stage of a process I would have to go through in order to accept the loss of my sight, but more importantly, the loss of who I was, or might become, as a person with sight. Before I could ever accept the person I would become as a blind person, I had to grieve the loss of all that was before the loss of my sight. I had to grieve for the loss of a life that could not be, my life as a sighted person, a life I might wonder about, be curious about, but would never know, and never have. The denial, the refusal to accept that losing my sight would have a role in who I was as a person, was the beginning of my acceptance of myself as a blind person; my acceptance of who I am now.
Most of the time, over the years, as I grieved the losses in my life brought about by my blindness, I had no idea I was grieving, or that I would finally get to the point that I could accept myself, who I am, as a blind person, and the same can be said in regards to my adoption journey. When I think about denial, I see it as a blessing. Without denial, I would not be where I am, or who I am today, and that is something I cannot deny.
Acknowledgement: Thank you to the Adopted One for asking, understanding, and help me to talk about it and get it out.
As a young 20 something in the late 80’s, my aspirations were just like most other young women of my age and time. I had imagined myself working towards a fulfilling career, finding Mr. Right, getting married, buying a home, and having children. Basically, the “All American” dream was my goal, and it certainly wasn’t unreachable. I could easily have imagined myself working at an independent research facility, working with a team of researchers, to find causes, treatments, and possibly even cures for blinding eye diseases. Yes, I could definitely see myself working as part of a research team, which was making great strides in such a worthy cause. What I had never expected was that my position on that team would be the actual subject of the research. When, once again, I found myself at another medical center, sitting in another exam room, looking at one more doctor, it came, as a bit of a surprise to find that this was not just another doctor, doctor’s office, or doctor’s visit.
When it was suggested I see, yet, another doctor, I never imagined I was being sent to a research facility called, the Retina Foundation of the Southwest, an independent non-profit research center, focusing on finding the causes, treatments, and possible cures, for numerous blinding eye diseases. I was a bit confused as to why I was being sent to another doctor. Just how many doctors does a person with an incurable, untreatable, hereditary, eye disease need to be examined by? I wasn’t going to argue or question anything anymore. I knew my coworker was still sitting in the waiting room, and expected answers. I had the distinct feeling that, this time, I wouldn’t be given a choice in going to another doctor, as had happened with my Father when I was first diagnosed, so I resigned myself to my fate.
I was also, slowly, becoming aware of the fact that it wasn’t everyday a doctor diagnosed a patient with RP, or even had the opportunity to see a patient with RP. I was quite the center of attention that day. RP isn’t exactly a rare condition, but it sure seems to intrigue eye doctors. Some of them get a bit excited, as I would find out as the years passed and I would find the need for an eye exam and new glasses. After numerous visits to numerous optometrist, and ophthalmologist, their enthusiasm as they looked into my, RP affected, eyes, had begun to amuse me. Tired of feeling like such an enigma, I finally settled on one ophthalmologist. I would joke with him, “You should be paying me to examine my eyes.” He would always laugh and agree, “I really should.” A doctor with a sense of humor is a good thing. I wonder what he would have done had I sent him a bill?
At the RFSW, of course, there were more tests. By now, I was becoming quite the expert on field vision test, and the like. I was really getting tired, and my usual sunny disposition was getting a bit cloudy. I wanted to get all this over with, and just go home. The optimistic attitude, kindness, and compassion, of the staff did, however, make what was becoming a very, very, long, long, day a bit more bearable. Best of all, at the RFSw, the hope and confidence that progress would be made and someday, a cure found, was contagious. Doom and gloom is not my normal disposition, so I gladly hopped on board the hope train, letting their optimism rub off on me, and, with a smile, became a part of their research. It certainly wasn’t going to hurt me. Besides, pretending I didn’t have RP, hiding the fact that I did, or telling myself that it didn’t matter, was no longer a viable option, as much as I hated to admit it. Take it from me; telling yourself you “just can’t see very well” when you can’t see at all can be extremely painful at times. Trust me. (Side Note, a tip for those, who, not only may not see well, but at all: The slower you go, the less it hurts, especially when you hit the corner of a half-open door. See my post “A Smack In The Nose”. I should have taken my own advice that morning. It’s not like I didn’t know better, or hadn’t done something like that before. Geez, you would think I would learn. lol)
Knowing that there were doctors, scientists, and others actually working on finding a cure seemed to make all those mind numbing field vision test, and the like. A bit more tolerable. It’s, also, kind of cool knowing that you are a part of research that may someday help in finding a cure for RP. I can’t say the day was much fun, but knowing the results would be used for research this time, and the possibility that someday they would find a cure, seemed to make it all worthwhile.
I began to feel much better about the entire situation when the doctor explained that most likely, I would be in my 40’s when RP reached it’s final stages, and, most likely, I would never be “totally” blind. The worst I might expect is tunnel vision. Well, I could certainly live with that. That was so much better than thinking I would be totally blind someday. (Side Note: He sort of missed the boat on that one, but RP is at times unpredictable.)
When I asked about having children, he didn’t discourage me, and was surprised I had been told such a thing. Yes, RP was hereditary, but until they knew more, no one could say if any potential children I might have would also have RP. There was a chance they wouldn’t. That was just enough “not so bad” news, and all I needed to hear to convince me RP wouldn’t change any of my plans, goals, or dreams for my future; too much. I could adjust. Whew! What a relief! I felt much better.
At the RFSW, things had begun to look up for me. They just needed a little more information after that, I could go home, and put this behind me, until next year, when I would come back so they could monitor the progress of my RP. A battery of boring test once a year for research purposes wasn’t that bad. I could live with that. Bring on the questions. I needed to get home and get on with my life. It was all going to be O.K. Thanks to the RFSW, I had been given hope.
When they said they just had a few questions, I thought nothing of it. When the first question was in regards to my “family medical history”, though my first thought was of the family I had grown up in, I didn’t flinch, or even give it any consideration, when I simply stated, “I don’t know.” Having known all my life I was adopted, and never expecting to know anything about my biology, it seemed like a simple enough answer. I had never given the question any thought, and no one had ever asked before, but somehow, I knew which family she was asking about.
The expression on the staff member’s face, who had asked the question, caught me by surprise. For some reason, I began to feel a bit like I had said something wrong, so I added, “I was adopted.” She looked a bit confused, and excused herself with an “I’ll be right back.”
You might think I would have caught on by now, since the last thing I had discussed with the doctor was having children and the possibility of passing RP on to them, but the importance of the words “hereditary”, “family medical history”, and my biological parents and family, still hadn’t connected in my mind. It all struck me as a bit odd. Why had she left? Where did she go, and what was up with that look? I couldn’t help it if I was adopted and didn’t know anything about my biological family. It wasn’t like being adopted was something out of the ordinary. Children were adopted everyday, weren’t they?
Growing up, it wasn’t like I was oblivious to being adopted. I heard the comments from others about not “really” being related to my family, and other stupid things people say about adoption and adoptees. I can’t say those things hadn’t stung, no matter what the intentions of the person making the remark had been. What person likes hearing another point out, or imply, that you are, in some way, not a part of the only family you’ve ever known? It hurt, and it made me mad when I heard such things. The fact that I was adopted never mattered, at least not to my parents, and not to me, so who cared if I was adopted?
This time, however, for some reason, inside, it was more than the usual awkward, and uncomfortable, feelings I had felt in the past that always passed quickly. This time, it felt different, though I wasn’t quite sure why. Maybe it was that look? Something had struck a nerve inside me, but I had no words to name the feelings I felt at that moment. The feelings confused me, and I had no idea of how to react to them, much less, deal with them. This time, something was different, and I didn’t like this feeling.
It had seemed like forever, when finally, the staff member came back in the room, with the doctor in tow. The “Houston, we have a problem” look on his face made me even more uncomfortable, and a bit defensive, when he inquired of me again, “You were adopted?” I began to feel a bit like a bad schoolgirl, who had just been caught by the principal, doing something I shouldn’t have been doing. What had previously, in my life, been nothing more than a curious wonderment, in my mind, meaning my birth family, was now, apparently a problem, and an issue, something important? Why were they looking at me like that, and why did I feel bad about it? What was going on here?
Facing the reality that RP was probably going to impact my life in more significant ways than I had originally wanted to admit, was one thing. Being slapped in the face with the reality of my adoption, and its significance to me, on top of that was not a place my mind was prepared to go. I listened as the doctor gently, explained the importance of finding out whom, or if, anyone in my biological family had RP. I understood as he explained it was a major, determining factor in the possibility of passing it on to any children I might have. I just didn’t understand what, exactly, I was expected to do about any of it. I didn’t know anything about my biology, and never would.
It, apparently, was just me that was clueless, because the doctor was already working on how we would get this information. All I could do was sit there trying to absorb what was happening to me. How do you put it into words, what it feels like when you’ve just been slammed with the reality of adoption, when you didn’t know there was a reality to adoption, nor did you really want to? How does being diagnosed with RP, a visit to a retinal specialist, and being sent to a research facility turn into me searching for my birth family, when my birth family, not to mention the significance of their relationship to me, still hadn’t even crossed my mind, much less, had the chance to be absorbed by my mind?
As a young 20 something, woman of the 80’s, I can tell you for a fact that being diagnosed with a hereditary eye disease, called Retinitis Pigmetosa, had not been part of my future plans. Finding myself the focus of study for a research facility trying to find the cause, treatment, and a cure for RP, had, also, not been in my future plans. Even after the reality of those two facts, and having a doctor explain the importance of knowing my family medical history, would you believe that reuniting with my birth family, was not even a thought, much less a concept, and certainly not part of my plans for my future? Wasn’t reuniting with birth family supposed to be impossible for an adoptee of the closed era? Could RP really be the miracle worker that would open the, always and forever, closed-door of my sealed records? It didn’t matter at the time. My mind just didn’t want to go there, so it didn’t.