I was 21 when I was finally diagnosed with retinitis pigmentosa. The agency had informed my parents that I might need glasses as I grew older, but I’ve often wondered if they told all adopting parents that sort of thing. The agency had told my parents the same thing about my brother, whom they had adopted two years earlier. My brother’s eyesight had always been perfect, up until recently, when in general, just getting older can be the cause for needing glasses. I, on the other hand, was around the age of 4, or 5, when it became apparent that eyeglasses were going to become an important part of my life.
I still remember those hideous, coke bottle thick, horn-rimmed, horrid glasses. Oh, how I hated them, but without glasses, I couldn’t see past my nose. I was far-sighted, with a lazy eye, which the glasses were supposed to correct. They did their job, but no one, for the first 21 years of my life could have ever imagined the depths of my eye problems.
I had gone in for my annual eyeglass exam. I had been complaining about the trouble I was having seeing at night and in dark places. I hadn’t really thought it was anything serious, or something to be too concerned with. I had only mentioned it out of curiosity. My optometrist suggested I do a field vision test, so I did. When he came back into the room with the results, he hadn’t seemed too concerned, but suggested I see an ophthalmologist about my problem.
I made the appointment, and off I went, with no concern that this could be something serious. I had been bumping into things all my life. I probably just needed stronger glasses, or maybe, as my dad kept saying, “It’s those contacts.” He never believed putting something directly on your eye was a good thing. My Father drove me to the ophthalmologist office, where I was given another field vision test and several other tests. We were sitting in the exam room calmly waiting for the doctor to come back with the results, never expecting the blow that was about to come.
The doctor came in, sat down on his stool, and in a very matter of fact voice began with his diagnosis. I don’t remember word for word what he said. It doesn’t matter, because the following is what stuck in my head. “You have retinitis pigmentosa.” then something about going blind, and “There’s no treatment or cure. It’s hereditary, and you should probably never have children.” He added something about wanting me to go see a specialist and left the room to have his assistant get me the information so I could make an appointment.
When you are a 21-year-old, single, female, just out on her own, with your own apartment, and your whole life ahead of you, the words retinitis pigmentosa, blind, no cure, no treatment, hereditary, no children, and specialist, are not words that fit comfortably into the world, as you know it. I tried to hold back the tears, but it was useless. I cried. What else can a person do when they get news like that? I looked at my father. I never, not once, in my life, had ever seen him, or ever would see him cry. That day, sitting there with me, he came about as close as I had ever seen him come to crying. I’ll never forget that look on his face as we sat there alone in the exam room, neither of us able to speak. My father never said a word. He didn’t have to. The look on his face said it all and I found comfort in his presence there. I gathered strength from his silence, and stopped my tears. There were a lot of times in my life, when, where my dad was concerned, words just weren’t needed. This was one of them.
Words like stunned, shocked, and disbelief, just can’t do justice in describing my feelings upon hearing the diagnosis I had just been given. Traumatized? Yes, that sums it up nicely, and in reaction to the trauma, I kicked into survival mode. I just wanted to get out of there. As soon as the doctor returned, I took the information and without a word between us, my father and I left without asking any questions, inquiring further about just exactly what retinitis pigmentosa was, or what to do about it. We just left, both of us too dazed to do anything else.
As my Dad drove me back to my apartment, we didn’t really talk. What was there to say? He asked if I wanted to go to the specialist. I told him no. I saw no need to go to more doctors, who would just tell me the same thing. There was no cure, and no treatment. I was surprised when he said he understood and would support me what ever I decided. That was that. I didn’t want to talk about it anymore. I didn’t want to think about it anymore. I just wanted to put it behind me, and forget. We rode the rest of the way in silence.
Along with my curious, independent, impatient, and tenacious, nature, I suppose, it would not be too much of a stretch to say that, at times, I am also a wee, tiny, bit stubborn. My husband calls that part of me hard-headed. I, myself, prefer the term strong-willed to either stubborn or hard-headed. Needless to say, that particular part of my nature kicked into full gear. I was 21 years old, independent, and strong. A little bad news like the fact that I had a hereditary eye disease that might cause me to go blind wasn’t going to stop me. So what if my eyesight wasn’t perfect. So what if I had to stop driving at night. I didn’t like driving at night anyway. I could do everything I needed to do during the day. Couldn’t I? Besides, my friends, and family, almost always volunteered to drive whenever we went somewhere. (Side Note: I wonder why? Lol) what was being diagnosed with retinitis pigmentosa really going to change in my life? Was it really any big deal? I wasn’t blind. I just couldn’t see all that well.
Because I am an adoptee, some of you might be wondering, if finding out I had a hereditary eye disease, and hearing a doctor tell me that I should “not have children” might trigger something in my mind in regards to my biological family? You might be wondering if such a thing would make me want to search for my birth parents? I wish I could say yes, but even finding out my genetics were a bit defective, the thought of finding my biological family, never crossed my mind. As an adoptee from the closed records era, I think, somehow, it had become so ingrained in my mind that I would just never know my biological family; I just couldn’t make the connection between the word hereditary, the importance of my medical history, and my biological family. Maybe, I had just always accepted that I would never know? What would it change anyway? Most of all, at that particular time, I just didn’t want to think about it, any of it. I was 21, and had plenty of time to, what I don’t know, but whatever it was, I had plenty of time for it.
Finding out I had RP, short for retinitis pigmentosa, meant nothing to me at the time, and yet, it would mean everything to me in time. Obviously, I couldn’t totally ignore the fact that RP had not affected my life in any way, but I didn’t have to think about it. Did I? God bless denial. It can truly be a wonderful thing when you’ve just been told you have a hereditary eye disease that will, someday, cause the loss of your sight, and that there is no cure or treatment. As the saying goes, “out of sight, out of mind”, pun completely intended, in every way.