Denial is a funny thing. To sum up the definition of the word, it simply means to refuse to acknowledge. Even though my birth parents had never been any part of my life, neither of them ever having held me, or possibly even having actually seen me, being diagnosed with a hereditary disease makes it a bit hard to say that they had absolutely no effect on my life. I wasn’t denying the fact that I had RP, anymore than I could deny the fact that I had two sets of parents. I accepted my status as a person with RP, in the same manner in which, I had accepted my adoptee status. It is just how it was. I wasn’t refusing to acknowledge the facts of my life. I was just refusing to think about things that, at the time, I told myself didn’t matter; I couldn’t change, and didn’t want to think about. I wasn’t denying anything. I just wasn’t going to think about it. There is a difference. Right? Not thinking about something is different from not acknowledging it. Isn’t it? Technically?
How could I not acknowledge what I was constantly being reminded of every time I bumped into something, fell over something, felt the fear of uncertainty when I found myself somewhere unable to see, or just simply looked in the mirror and saw my reflection? I wasn’t refusing to acknowledge that a hereditary eye disease had been passed on to me by my biological parents, or that either had not had any effect on my life. How can a person deny something so completely obvious? The only thing I was refusing to acknowledge was that either had any significance in my life. It wasn’t like I had a real problem, or that something was really wrong with me. I just had trouble seeing in the dark.
It was such an insignificant factor in my life, I saw no need to give any thought to my future plans, much less change any of them. I was 21, and like most young women of the 80’s, I saw no reason why I couldn’t have a career, get married, and have children, even if I did have a hereditary eye disease. It wasn’t like I was actually blind. RP was such a minor issue in my life, I saw no need to talk about it, much less, tell people I had a hereditary eye disease.
Oh, sure, I on occasion found myself embarrassed because I had bumped into someone, ran into a wall, or couldn’t find my way. Sure, the fear and uncertainty of not being able to see was certainly humiliating at times. An occasional embarrassment, mixed with a little fear, which brought about certain humiliation was tolerable compared to the fear of feeling like I was somehow defective, or worse, that others would see me as defective, and possibly, reject me because of it. (Side Note: Did I really just admit that fear of rejection? Could a doctor telling me I shouldn’t have children, really make me feel like I was defective? As a 21 year-old single female, you bet it did! )
Life was just getting good. Why ruin it by giving thought to the effects of a hereditary eye disease, or the significance of the word hereditary, and my future? What did it really matter, when I would never know my biology anyway? Why worry about today, what you can worry about tomorrow, right? There wasn’t anything I could do about any of it anyway.
Saying there was nothing wrong with me, and that I just had a little trouble seeing at night, might seem a bit like I was in denial, but adjusting to something so minor was nothing I couldn’t deal with. How is that denial? I wasn’t, technically, denying the obvious. I was just denying it made any difference in my life. If you keep telling yourself something long enough, someday, maybe you can convince yourself it’s true? If you refuse to see something, does it really not exist? (Side Note: What an interesting question for a person, who is, now, totally blind, to ask? Hmmm.)
If being diagnosed with RP was so insignificant, I don’t suppose it should come as a surprise that the thought of my birth parents, and their role in my being diagnosed with RP, never crossed my mind. I wasn’t in denial about anything. I just wasn’t going to think about it. Why should I, when it so obviously hadn’t changed my life in any significant way, technically?
I might have been the one telling myself it was no big deal and didn’t matter. My friends and family might have bought my story of “I’m fine.” I, however, hadn’t fooled everyone. It was just a couple of years after my original diagnoses, when a coworker had, apparently, noticed the trouble I had seeing at night, and began asking me questions about it. As much as I disliked talking about it, and tried to hide it, I answered her questions. It wasn’t long before she brought up retinitis pigmentosa. I was surprised, as most people had never heard of it. She had read about it, and assumed that might be what was wrong.
She was very concerned when she asked if I had seen a specialist, and I informed her that I saw no reason for it. Soon after that, she apparently had discussed it with my boss, and operation “Get Shadow to the specialist” was put into action.
It took them several weeks to finally, convince me, or more aptly put, “wear me down”, before I gave in. They were getting harder, and harder, to avoid, and more and more persistent each time I declined the request that I see the specialist.
One morning they joined forces and cornered me in my office. I finally agreed. What else was I going to do? They weren’t taking no for an answer, and my boss said he would pay me for the time missed, as well as, the office visit. My coworker volunteered to drive me herself to the doctor. How could I refuse after that? They made the appointment. I was going to the specialist, and people say I’m hard headed. Go figure?
I was far from thrilled about going to another doctor, whom I was positive was going to just tell me the same thing I had heard a couple of years earlier. There were more tests, and, as you might expect, the results hadn’t changed. At least this time it hadn’t come as such a complete shock, nor had this doctor been so cold in his bedside manner. After a more in-depth explanation of just what RP was, I was a bit more open, this time, when he suggested I go to another specialist. Well, it really wasn’t a suggestion, it was more of an “I’m sending you to” this doctor, and off my coworker and I went to a place, and a doctor, who would give me hope, plus open doors I never knew could be opened, or needed to be opened, for that matter.
It was official. I could no longer say there was nothing wrong with me. I had to face the fact that there was a bit more to “just not seeing well at night” than I wanted to admit to. There was something wrong with me. I had a hereditary eye disease that would play a significant part in my life, and change my life in more ways than I could ever imagine. Little did I know that fully accepting my status as a person with retinitis pigmentosa and all that entailed, would also force me to face a few other things I never deemed as significant parts of my life. That’s the beauty of denial. You can deny it, until you can’t deny it any longer. It’s not denial, until you admit, it’s denial, technically? Is It?