Mating, Motherhood, Doctors and Research

I have been really humbled by communicating with people with RP. I feel, at the risk of sounding hokey, honored people have felt safe enough to open up to me about their experiences wtih this disease. For many, it is a lonely path. The relative anonymity of the internet seems to bring out the honesty in us.

There are a number of issues that seem to be a common thread: marriage and mating for men, motherhood for women, the pace of research and the way in which retinal specialists treat RPers.

Men have told me they feel like they will be a "burden" and a source of pity for a woman, so they choose not to date. Firstly, if you truly believe this, you will create this situation. For example, if you think she is just going to feel sorry for you, you will look for examples of that. She may just be nice but you interpret her consideration as belittllng. You blow up and all of a sudden your RP is the issue. She will take your lead. If you make it a huge deal, it will manifest that way. Coming from someone who kissed a lot of frogs prior to finding her prince, if blindness is your biggest personal issue you are ahead of the game. If you have used it to develop your character in any way, you are leading the pack.

Women are reluctant to become mothers because of RP. This can be the result of eugenecist programming, otherwise known as genetic counseling. Or, it may be a personal bias. I suffered from this initially, but then looked around at other people having babies. They were not perfect. In fact, they were all very human. I also thought about all of the qualities that made my mother exceptional. Not one had anything to do with what she could do. Everything that makes my mom a rock star of a mother has to do with who she is.

This leaves us with retinal specialists. Firstly, I believe God has gifted all of us in different ways. We assign value to those gifts due to our flawed human nature. But, in His eyes, they are all to be used to glorify Him and advance His work on Earth.

So, let's talk gifts. Most retinal specialists, and this is a stereotype, are very task-oriented people. They are used to being able to synthesize large amounts of information in order to solve complicated problems. They are some of the brightest people in the medical field. Ophthalmology is a very difficult residency to get in the US and retinal specialists train beyond that. God gifted them with intelligence, obviously. This does not mean He gifted them with social intelligence. The truly bright ones realize this and compensate for it.

Shakespeare said, "To thine own's self be true". I think he meant, know yourself. If you are really horrendous at something, outsource. The truly exceptional retinal specialist is one who can pair his or her expertise with empathy for people. If he or she has no empathy, some people honestly just are not there, they can hire someone who does. This makes everyone happier.

Delivering a tough diagnosis is a HUGE responsibility. If you do it in less than 15 minutes, you definitely need to hire someone who has some therapeutic skills. If you deliver an RP diagnosis without a low vision referral, you need to hire someone. If you deliver an RP diagnosis without covering new research, you need to hire someone. If you deliver an RP diagnosis without personally calling a week later, a month later, several months later.....you guessed it. You also need to have access to a referral network of RP "vets" with some positivism who can serve as mentors to newly diagnosed people. In short, you need to care.

But. you look at us and you cannot see a person, your "vision" is clouded by your clinical background and personality. You see failure. You hate failure. You rarely fail. We render you totally and completely impotent and you are everyone's "go to guy". You just want us to go away. You tell yourself you want to spend your time helping someone you can actually help. Is that really the case? I hope so.

My retinal specialist is an exception to this rule. He has an empathy gene. That is why I go to him. But, like the dating game, I had to endure a bunch of toads.

My personal favorite is the one who told me, at twenty, to go get genetic counseling. Having children was the last thing on my mind at that age. Had he asked me anything about myself, he would have known that.

I think they tell us about genetic counseling because they have a pamphlet and practice standards that say, "refer patient for genetic counseling." Pamphlets give them some paper to hand out. At twenty, I only went to see this guy after my saint of a mother begged me. I was not really in to paying people to terrorize me, so I usually avoided retinal specialists and their tap dance of doom and gloom. Not to mention the torture of the slit lamp exam on photophobic eyes. Even better is the practitioner who turns the slit lamp to its' highest illumination and invites all his buddies in for a glance. Get a better textbook.

Anyway, when I went to see the retinal specialst in my twenties he gave me a little insight. His exact words were, "If people with RP quit reproducing, this disease would go away."

Another RPer wrote me about he and his wife's favorite retinal specialist quote. They were in the office with their children. The kindly doctor said, "Did you know you had RP when you decided to have these kids?"

All sarcasm aside, I am not here to judge people. I will judge actions. Do not comment on anyone else's reproducing unless you are planning on making babies with them. Because you are officially treading on "none of your business" territory.

How about instead of referring us to genetic counseling you challenge yourself to actually find a solution? Maybe that is why God gifted you with that brilliant brain....to innovate.

I have heard stories of RP- related suicides, suicide attempts and serious clinical depressions. So much of RP, in the early stages, is psychological. I just wonder if some of these people had met someone, with RP, living a happy life if they would have decided to take their own life. There is no way to know this, but I am pretty certain the genetic counseling pamphlet did not help.

I know people who were told they were going blind during a two minute phone call. This is inexcusable and should be malpractice.

I am not out to infer retinal specialists are evil. They provide valuable services for many and will, one day, for us. I do think putting very task-oriented people in a situation which requires strong therapeutic skills is a systemic failure. Maybe a "best practices" guideline could give the specialist access to a social worker. Maybe they could work as a team in these situations. I know if I were an interpersonally- challenged brainiac I would be enormously relieved to have some help.