So I visited my childhood opthamologist and world-reknown RP researcher, Dr. Gerald Fishman last week. I have to say it was one of the most eye-opening visits I’ve ever had with him (and this is both pun and literal– you can always coulnt on your eyelids being pried wide open during an exam).

Back in the fall when I wrote, “Trip to Opthamologist” I was pretty darn honest about my memories of my visits with Dr. Fishman growing up, and I have to say that as I sat in his office, I kept cringing imagining if he were to ever see what I wrote “Fishbreath” isn’t the most flattering descriptor for a respected doctor.  (not that a famous researcher would ever be browsing through doublevisionblog!)

Dr. Fishman is now at the Lighthouse for the Blind in Chicago (rumor has it that it was a political upset that led to the switch from UIC Eye and Ear Infirmirary to the Lighthouse). I found it interesting that it wasn’t just the doctor himself who moved practices– his sidekick technician, Marty, who has been with him since 1996, was there to razz me with his usual goofy comments, so it felt like a little reunion of sorts, as I had not been to an appointment for a few years.

He also still had a Fellow working under him, Dr. Collingsby, and I kind of wonder if some of these younger doctors have been the ones teaching their mentor how to improve his patient-communication skills just as he has been teaching them about retinas, as I notice Dr. Fishman has become more personable over the years.  Or maybe it’s me getting older.  Or the new building he is in.

Dr. Collingsly examined me first, and though there were the usual bright lights shone stingingly in my retinas, he had clearly brushed his teeth and carried the aroma of soap, which beats many other potential smells.  He did still emulate Dr. Fishman’s audible, scientific terminology during the exam….. “asteroids in the center vitreous…..look up please……scarring in the outer……all the way to your right please….white lipids…..” which always cracks me up because I have no idea what any of it means, and most of it sounds like they’re looking through a telescope at the solar system, not my retina.

While I think part of the audible descriptors are for the sake of educating the doctors-in-training, the fact that Fishman mutters these terms to himself even when there are no other doctors present tells me that he is simply engrossed in what he does (or he says thing aloud to help remember them in order to write them on my chart maybe?)

True side story today: As Dr. Fishman has my left eye pried completely open with a bright light shining directly on my retina, he says something about looking at a beautiful universe of greens and blues and pigment mumbo jumbo and then mumbles “nothing to do with the RP but I can’t stop looking at these” and then chastises himself, saying “come on Fishman, back to work!” And I don’t think this was crazy-talk or senility or anything. I think he is so enamored with the human retina and all its details that he really, really loves what he does.

At one point I asked him the round-about question I always end up asking. And even though I know he can’t give me a clear answer, I can never stop myself from asking it in some form. So today I worded it, “So I think I remember you telling me that most patients you’ve seen who maintain usable central vision like I do are able to hang onto that bit of central vision for quite awhile”. And he said that’s true of people with 20/40 or better, and since I’m at 20/50, it’s really hard to tell. But what really got me today was that he kind of touched my upper arm and said genuinely, “Because each RP case is so different and there’s not a typical path for anyone, I cannot predict the outcome that you deserve to know.” He said I deserved to know what will happen with my vision. It isn’t possible, of course, but he said I deserved to know. And since I didn’t tape record him, I don’t even remember the exact quote– I think he said it better than what I quoted, but for the first time I felt his sadness in not being able to really help his patients– or even give them an accurate prognosis. How frustrating as a doctor.  Not to mention as a researcher who has devoted their career to finding a cure.

So I’m looking at this doctor– this researcher with the bow tie who speaks in scientific terms with fiery breath way too close to my face.  I stare at this small man who is frail and balding– the same one I dreaded seeing annually as a child– and he no longer appears as the villain. As a kid, your mind interprets events in crazy ways, and these difficult visits filled with bad news, poking and prodding definitely painted the doctor as the antagonist.

And I guess at this visit I grew up and saw how this “antagonist” has devoted his life to RP research well beyond the age most doctors retire (Marty-the-sidekick said he doesn’t know the definition of retirement!  Marty also would not tell me Dr. Fishman’s age, and I thought it would be weird to ask the doctor himself!).

Before leaving, Dr. Fishman asked, “have I answered all your questions?” and after saying yes and walking out of the office, I noticed he had been answering my questions for over an hour (on top of the 2 previous hours of tests)– an insane amount of time to spend with a patient these days.

And that’s the main reason I will make the trip to the city to see him each year instead of simply going to my local eye doctor.  I think any retina specialist can check for cataracts or fluid leaking in my retinas (two risks with RP), but I go to this particular specialist for the education. Yes, I could look online, but when you’re looking online, you really have to piece together a lot of information that may or may not be accurate.

For an update on what the appointment actually found vision-wise, please read part 2!

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4 thoughts on “Return to Fishman: Part 1

  1. So neat to have found a different perspective (a kinder, gentler one) all these years later – thanks for sharing!

  2. Joy,
    Great post! Mom and I remember all those appointments with Dr. Fishman. Your description of his mannerisms and the process are spot on.
    We never looked forward to those visits because we knew how draining they were on both you and Jenelle. We knew it was something that needed to be done. We always felt a combination of anxiety and hopefulness during our annual trek down to his office. We vividly recall how sad we felt when you and Jenelle went with the technicians for the grueling battery of tests. Some years there were more extensive test then others when we had to go to another part of the clinic complex.
    In those early years, Dr. Fishman would meet with Mom and I to go over your test results while you sat in the waiting area. We remember asking him a lot of detailed questions directly related to the test results he shared with us. Every year we met with him we would ask him about both his research as well as the larger body of RP research being conducted. We pressed him hard about the viability of treatments that might be on the horizon. It was exasperating year after year being told basically the same news that “at this time there are no viable treatments available”.
    As you became older you and Jenelle sat in on the consultation sessions. Dr. Fishman directed his comments more toward Mom and I even though you were sitting there with us. Reflecting back we wish that we would have encouraged you and Jenelle to ask your own questions rather then we acting as your spokesperson. We believe that Dr. Fishman might have made an effort to simply and clarify what he was saying which may have helped you understand RP better.
    We are so grateful and proud that you and Jenelle have this blog where you are sharing both the sorrows and the joys of your journey.


    Tom & Judy Derpack (Dad & Mom)

    • Thanks dad,

      Your comments mean a lot. Honestly, I think as kids we were glad that you guys were the spokespersons on our behalf. I don’t think I knew how to formulate the questions I wanted to ask when I was younger, and I definitely had trouble asking about it without getting really emotional, so it was easier to keep quiet during those years. Now having dealt with the emotions surrounding RP as an adult, I am finally able to talk with professionals about the facts without breaking down (though I do have to admit that the more empathetic Dr. Fishman is, the more I feel tears welling up, as it really just moves me to see a doctor so dedicated to his patients).

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