I talk about a lot of things on this here blog; I go political and snarky, and some say mean, and gossipy and cartoon-y; pop culture, hot men, TV ... I talk. A lot.
And I talk about personal stuff, too, but not really that much because I do tend to think I like to keep some private stuff private. I have talked about my family, sometimes plainly, as with my sister’s cancer, and my mother’s cancer; and sometimes obliquely with veiled references to what life was like for me.
I joke about Carlos and the fun we have; I talked about meeting, moving, living, loving and, yes, finally, marrying him; I don’t talk about the tough times, been though they exist, because I don’t like to dwell on them.
Until today; because, I think, if you let someone in on what might be considered a secret, maybe you can help them, or they can help you, or you can inch just a little closer by sharing. So, here goes ...
Carlos has Retinitis Pigmentosa, or RP, which is a group of inherited diseases that cause retinal degeneration. What it means is that he is losing his field of vision ... that little photo over there explains it better, though his vision is still better than that worst example. A woman we met recently explained it like this: to a sighted person, take a straw, hold it up to your eye and look through it; that’s what people with RP see.
He’s known about this for years—he was first diagnosed back in 2006 in Florida—and has studied and researched and contacted doctors all around the world to see what, if anything, can be done.
Sadly, for now, nothing can be done. There are drug trials and experimental surgeries, even acupuncture, but nothing seems to slow the progress or cure RP. So we deal. For Carlos, that means a steady decline in his vision for the last decade and he will, someday, unless there’s a cure, go blind.
There I said; and I cried a little because it’s hard for him, for us.
About two years ago, it became clear that Carlos could no longer drive at night because his night vision was growing worse; no big deal, I’ll drive. I think I’m a better driver anyway so, who cares?
Then, in February, while I was home one morning getting ready for work, Carlos, who had already left the house, called to tell me that he’d hit a curb alongside the road; in addition to his eyesight being affected by dim or dark lighting, it’s equally affected by bright sunlight.
So, he was done driving period. He was able to get the car back home and since that day, I drive him to work, then go to work myself, and pick him up at the end of the day. And, again, I don’t mind because I’m a better driver and because I’d do anything for him.
Including the fights.
Shortly after he stopped driving at all, a friend of mine opened a new restaurant in a nearby town, and one Saturday night we decided to drive over and try it out. Now, being rural South Carolina, the drive was on two-lane twisty country roads, but, again, I was driving so, you know, it was all good.
At the restaurant, I ordered a glass of wine and Carlos asked for scotch; Carlos drinks scotch when he’s nervous or worried or frightened and I asked why he was drinking it that night and he said, “No reason.”
I should have known better; during dinner, our friend came over and thanked us for coming by, and Carlos was quiet and really kind of sullen, which annoyed me. After dinner, we ordered dessert and when the server came by and asked how Carlos liked his dessert, he said, “I’ve had better.”
I shifted to pissed off, because it was rude, considering he’d eaten every single bite of the dessert; it wasn’t bad, he was just in a mood. We paid the bill and went to the bar for an after dinner drink and that’s when he told me he was wound up because of the ride over; although a passenger, he couldn’t see the road, and with the twists and turns, and the road being so dark, the trip over left him really upset.
So I started to talk about how we needed to do things, he needs to tell me these things, and how we, and he, need to adjust, and at one point I said, “This is the last thing I’m gonna say ...”
And he said, “Good.”
And so that set off a fight; a fight saved for the next day because I’m the kind of person that if you piss me off, you’ll have a fight on your hands—verbally, of course; but, if you hurt my feelings—like saying “Good”—I don’t know how to react to that; I don’t get mad, I get hurt. And quiet.
So, we had a silent night. The next morning, though, we hashed it out and I told him that I was just trying to help, to offer a suggestion, to have dialogue about what was happening. And I was right; and I was wrong.
Carlos was upset at the trip; he was upset that I had to help him walk along the dark sidewalk to the restaurant, steering clear of trees or steps or any obstacle that he may not see; his anger at me telling him what he needs to do was because of his own fear of losing control; and losing the ability to drive is a huge loss. I mean, think about having to rely on someone to take you everywhere.
So, as we do, we hashed it out and were good, or at least on our way back to it. In fact, the same day we talked it out, we’d been invited to a meet-and-greet with the South Carolina chapter of the Foundation Fighting Blindness at a restaurant in Columbia.
I was still hurt, and kinda angry because sometimes those feelings don’t dissipate so easily, but we went; and during the meeting, Carlos was asked to kind of share his story, and he told it. But he also told the story of the night before and getting angry at the ride, and angry at having to be helped down the street; and angry at me because I was talking too much.
And he started to cry because, as he said, the last thing he’d ever do was hurt me; or me, him.
So, we muddled through it; I told him he just needs to tell me things and I need to listen; and he needs to listen. I joked—because that’s what I do—when he said that someday he’d need a seeing-eye dog and said, “Why? You have me ... a Seeing Eye Bob.”
I joked that he could get a miners hat so he could see better at night; and we laughed about that. And then came another little spat.
At Casa Bob y Carlos, we have a rule: I take care of what goes into the cats and he takes of what comes out ... as in litter boxes and hair balls.
The other night I nearly stumbled upon a hairball and called for Carlos; he came to clean it up, and got most of it but missed some. As I told him where it was, he became angry and got snappy because he thought I was making fun of his RP, or taking his lack of sight lightly.
So we had another ... discussion; quickly begun and quickly ended.
But, as it happened, that same weekend we had another get together with the Foundation Fighting Blindness and the guest speaker was a man who is nearly completely blind, and a member of the board of the South Carolina Commission for the Blind.
He was very interesting; telling his story—he’d begun losing his sight nearly fifty years ago as a child—and informative: did you know that it’s perfectly legal in this country to pay blind workers less than minimum wage? The Fair Labor Standards Act passed in 1938, allows employers to obtain special minimum wage certificates from the Department of Labor which give them the right to pay disabled workers according to their abilities, with no bottom limit to the wage.
Seriously. In America. But that’s another fight for another day.
But, we also learned that losing one’s sight is the third most feared diagnosis a person can receive, after cancer and HIV/AIDS. It goes back to that whole “losing control” issue. And the speaker told us that one handles the loss of sight the same way one might handle a cancer diagnosis, with the Five Stages of Grief, or DABDA—Denial, Anger, Bargaining, Depression and Acceptance.
He talked about the anger phase, where the person losing sight is so angry at the loss of vision that they take it out on those around them. Well, now, doesn’t that make sense; Carlos and I both had light-bulb moments.
It makes perfect sense, and now that we both know, we can understand it and handle it better; and joke about it.
As I told him in the car on the way home, “The next time you yell at me, I’ll remind you that you are stuck in Phase Two.”
Anyway ... that’s the Random, or Not-So-Random, Musing for the day, There are so many people in the country going through issues with their sight—RP, Macular Degeneration and more—and I think it helps to know that you aren’t alone.
And that people will listen.
Thanks for that.
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