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.