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KEN JOHNSON: DREAMING OF THE DOG

I've never met Ken Johnson. I've only spoken with him on the phone, and seen a picture of him: handsome, with a great smile beneath a baseball cap, holding onto his beautiful golden retriever Ollie. When Ken went blind last year from CMV retinitis, he had to give Ollie up, sending him to live with a friend in Atlanta, and to adopt a guide dog named Garrick. Ollie had been with Ken for seven years.

"Letting him go was very, very difficult, because he was my child. I raised him from a puppy. Expecting this one to be like Ollie was a big mistake. They're like people they're very, very different." Though it may have been hard, Ken seems to have accepted the change; to me it seems like yet another one of the unbearable indignities that this disease inflicts. I try to tell Ken how much my English Bulldog Lucy means to me, to sympathize with his loss, but he seems to have moved on.

"The dog gets me up in the morning, and you know, for me there's always been something inside of me that, you've got to get up, it's daytime. I have a certain sort of routine in my mind that the day is for work, Regardless of whether you've got anything you have to do, you just get up. Of course, I grew up with a father who's a marine sergeant, so I'm sort of programmed with that."

Ken was diagnosed with HIV in 1993 at the age of 25, and with CMV retinitis a year later. Drugs preserved his eyesight for a while, but about two years ago, he started losing his vision. "Everything seemed so bleak," he said, but then Ollie would come over and put his head in my lap, making me feel better."

"Now I go everywhere with Garrick; it's definitely a plus. My life is getting better all the time. I could easily stay in bed and cry into my pillow, but that's not going to get you anywhere. I just turned thirty-one on Saturday, and I've got my life in front of me."

Ken and I are the same age, and I find myself not worrying about the future. It's too far away, and I can't really manage to get a picture of what, if anything, it might be like. The best I can manage is to ask, What might I want to be when I grow up?" I ask Ken what he wants to be when he grows up. There's no hesitation in his voice as he answers, "I grew up a while ago - around twenty-five, it was an abrupt 'Let's grow up now.'"

"I have a whole bunch of projects I have a magazine project in the works, and I'm thinking of going back to school in the Fall, and I'm really looking forward to revitalizing my career. I'm very involved in AIDS activism, very focused on prevention instead of treatment. I've been working on needle exchange, because I really believe that the government should be handing out clean needles and distributing condoms, which is really important to me. I am a member of ACT UP/New York, but that's not really the right forum for what I feel. A smile can get you a lot more. They're very angry sometimes."

As I listen to him talk, I'm finding myself not jealous, particularly, but just curious at his strength. It's almost like talking to one of those paraplegics who paints masterpieces with his toes, or to the guy who suffered a stroke and managed to write a book by devising a code involving a stenographer and blinking with his eyes. One low T-cell count, and I'm on the sofa for a week, sobbing. I wonder where he gets it. I wonder if it's real. It's not very attractive, but I'm looking for a chink in the armor.

I delicately approach the question of his love life. "It has happened. I don't think the blindness gets in the way of that. I just find that it's...I'm not looking for it right now. Frankly, I'm not really interested I have other things to. But the visual doesn't impede at all. I go out with friends, and I meet their friends. With the AIDS epidemic, sex is just involved with so much else. I just haven't found the right person. And it's sort of hard to cruise with your guide dog." When I suggest that dogs are the ideal man-bait, he confesses, "I don't really trust his judgement he likes everybody."

"I've just been trying to deal with my mental state with the depression. That takes a lot of work time to keep that cloud as far away as possible." That's it. That's what he's going to tell me. On to practical matters: "So I can't drive a car. I can't look at a book and read it, but I can scan it or listen to it on tape. The only downfall of the blindness is not being able to look at a calendar, with my busy schedule. The downfall of my AIDS is that I love oysters on the half-shell, and that's a big no-no."

It's a privacy thing, I guess. One wants to share what is happening, to let people know what's going on, but the big discovery is that other people, by and large, have a very limited tolerance for your pain. Life, for them, goes on, and that's the way it should be, and so you parcel out where and with whom you share it.

"I've started to dream with the dog now. It's OK. In the dream, I have all the accouterments of being blind, only I can see. Sometimes you get the dream where you can't see, and it'll just be one of those bizarre dreams where you're sitting in your third-grade classroom, and you're drinking martinis with your third-grade teacher, but you've got the dog and the cane. So I am blind in some of the dreams I am blind, but I can see some of the time. You wake up and you first open up your eyes, and then you realize, that was a nice dream. OK, here we go."
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