What It Feels Like…to Have Narcolepsy
By Jimmy Kimmel, 35, host of Jimmy Kimmel Live, as told to Brendan Vaughan
Truth be told, I’d rather have narcolepsy than not have it. When I get on a flight to Vegas, I’ll fall asleep before the plane takes off and wake up after it’s landed. I’m always very close to sleep. [Yawns]
I had no idea I had it until recently. All I knew about narcolepsy was a character on Hill Street Blues, Vic Hitler the Narcoleptic Comic, who would fall asleep in the middle of his act. But I did know that every afternoon between about three and six, I would get very tired for no reason. I would doze off in meetings, watching TV, even driving. You know how when you’re regular tired, your whole body is tired? With narcolepsy, just the inside of your head is tired. It’s like somebody’s gently sitting on your brain. You have almost no focus. All you’re thinking about is not falling asleep.
When I was emceeing Win Ben Stein’s Money, I actually fell asleep during the show a few times. I would sit on the safe over to the side and just sort of doze off. But that was probably a combination of the narcolepsy and Ben’s voice. Another time I was on the freeway in bumper-to-bumper traffic. My head was diving, then jerking back up. All of a sudden, this loud voice over a megaphone says, “Are you awake enough to drive that vehicle?” And I practically jumped out of my skin. It was the police, one lane over.
Anyway, I just always figured I wasn’t getting enough sleep, so I would drink gallons of iced tea to get me through the afternoon. Finally I went to a doctor. When I told him how much iced tea I drank, he said, “What?!” He decided I was self-medicating, and he prescribed these pills called Provigil.
I have a pretty mild case with no other symptoms. Some narcoleptics experience cataplexy, which is a limpness in the arms and legs. I don’t have that. I’d like to, though. It sounds great.
I’ve never used my narcolepsy in my work, though I do have a dream to someday use up an entire hour of television time by sleeping. Have I been approached to be the public face of narcolepsy? No, nobody wants me associated with their groups. I hope that changes, though. I would like to be to narcolepsy what Camille Grammer is to irritable-bowel syndrome.
What It Feels Like…to Change Your Sex
By Amanda Kent, 49, marketing manager, as told to Bryan Mealer
It was my tenth year of marriage when my wife caught me in the middle of the night, cross-dressing in another room. I was forty-two years old. We’d just had our first child. She was devastated.
Eventually my wife and I divorced, and I began to plan my transition, the first step prior to surgery. I wrote a letter and sent it to everyone at work. It was kind of confusing for them because they didn’t know how to address me anymore.
I lived almost a year as a woman before having the surgery. I’d had plenty of practice by that point, so I was probably better off than most transsexuals. It’s not like I looked like a man in a dress.
During transition, I started dating the man who’s now my husband. He actually came with me to the surgery, which I had in Thailand. The technical term is “penile inversion.” After waking up from surgery, you feel a good amount of pain, but not a horrific amount. You wake up and you have this big cast made of bandages. The cast is packed in, and when they start pulling it out, it’s not the most pleasant feeling in the world.
They use the existing tissue. Your nerve endings are actually preserved. That’s what’s used to give you sensation in the clitoris area. I have a clitoris. A gynecologist wouldn’t even know unless he really started looking inside.
At first, the area was really tender. It took me about three months till I was fully healed, to where I could sit on a bicycle. Until then, I had to get a little inflatable rubber doughnut to sit on. I had to use that for about six weeks.
I can have sex and orgasm. It’s functional in that way. The orgasms are different, though. The male has this orgasm and that’s basically it. For a female, it’s more of an ongoing thing during the course of intercourse, more of a whole-body experience. As opposed to men — men have sex like dogs.
As far as growing breasts, I took hormones. It’s really not much different from what any teenage girl goes through. I noticed an overall smoothness to my skin first, then sensitivity to the breasts as development started. After about four years of gradual growth, my development seemed to be mostly over. Emotionally, you get a dose of mood swings mixed with insecurity. It’s like going through puberty all over again.
I didn’t really have too much of an issue with my Adam’s apple, but I did opt for a small surgery called a thyroid cartilage reduction to help reduce any telltale signs.
For myself, I was totally heterosexual before, and I’m totally heterosexual now. I didn’t change. I didn’t become homosexual. Being with a guy feels much more natural. The thought of being with a woman doesn’t do much for me. But that’s just me.
What It Feels Like…to See Music
By Sean Day, 41, college professor, as told to David Jacobson
I have something called synesthesia, a rare neurological condition where the experience of one sense evokes another. When I hear musical sounds, I also see colors. Musical instruments each produce their own particular color.
When I hear a piano, I see a specific shade of blue. Tenor saxophone? You’ve got a floating ball of a hundred coiling snakes made of purple neon tubing. Your basic electric guitar is a fire-engine-red plasma, but it depends on the distortion. In that Smashing Pumpkins song “Galapogos,” when the guitar comes crashing in, it’s this beautiful pinkish orange, like the color in a tequila sunrise between the grenadine and the orange juice.
With some musical colors, I can stick my hand right into them and move them around. Like the sky-blue mist I see when I hear a piano: It will swirl like smoke, as if it’s being affected by my hand, but I don’t feel anything.
One thing I like is driving while listening to my car stereo. I’ve got a multicolored, constantly changing windshield in front of me. But I can see right through the image.
I realized early on that I saw the colors and other people didn’t. I didn’t talk about it often. The way I saw it was, why start talking to someone in German if he doesn’t speak German? I didn’t know the name synesthesia until I was twenty years old and taking an anthropology class in which the professor happened to discuss it for about five minutes.
The most common synesthesia involves seeing letters and numbers as having different colors. When I’m talking to other synesthetes, they’ll start discussing their colored letters. When I say I don’t have that, there’s a look of shock.
I also have colored taste synesthesia. As I sip my cup of coffee every morning, I see this pool of oily green liquid. When I bite into Key lime pie, I see an orange-and-blue flag. But I’m quite aware it’s not actually there. I’m not delusional. It’s an everyday thing, so usually I don’t even pay attention to it. I hear a piano, it’s blue, same thing as always.