Henry And Jane
GLYNN WASHINGTON, HOST:
Welcome back to the SNAP. Now today, our next couple, Henry and Jane, they know a little something about the struggle. SNAP favorite Lea Thau has the story.
LEA THAU, BYLINE: This is Jane Evans. She and her husband Henry have been married 26 years. They have four kids. And they used to have the kind of marriage where he was a CFO and she was a stay-at-home mom. And this took a toll in the typical ways.
JANE EVANS: We had two different worlds. He would come home, and there would be toys all over the floor because we were playing games or whatever. And then he would come in and say how can you stand this? And I was like, all right, hang on here, pal. You're walking through the door and just seeing this.
THAU: This used to be their biggest issue. Now they have a different kind of problem.
EVANS: Henry, I'm going to move your legs this way. I'm going to rock you a little bit, OK. One, two, three. OK, ready, Henry? Here we go. Scoot him in here. That's it.
THAU: That's Jane transferring Henry from his bed to his wheelchair. Eleven years ago, he suffered a brain stem stroke, which left him paralyzed and mute. He could blink with one eye. That was the only movement he had left. Their kids were 6, 8, 12, and 13. And the doctors told Jane she had to put Henry in a facility. There was no way she could care for him at home. She disagreed. Jane is tiny. She's 5'2. Henry is 6'4 and almost double her weight, but she moves him by herself twice a day.
EVANS: Well, you know what? The first time I brought him home, I dropped him. And thank God the therapist showed me what to do if you drop somebody. You fall with them. You don't just drop them like a hot potato.
THAU: At the time of the stroke, Henry was your all-American businessman and dad - tall, handsome, do-it-yourself kind of guy with a fast-paced Silicon Valley job. He was 40 years old when he suddenly became trapped in his body. He had what's called locked-in syndrome, meaning his mental capacities were fully intact, but he had lost all movement and speech. And his only way to communicate was through eye blinks going through the entire alphabet.
EVANS: He got to the point where he was begging me to kill him. Begging me, just begging me to shoot him in the backyard.
THAU: Jane's life was also turned upside down.
EVANS: Taking care of Henry, being by his side, going through all his therapy, it's like I've lived this nightmare as the caregiver but as a wife. And you are exhausted. Tell me what you need, Henry. Do you want your head back? No. I could put him in a nursing home or put him in a corner, but that's not how I would want to be treated.
THAU: The kids had to help out, too.
EVANS: We were helping him go to the bathroom one night. We had him on the toilet, and I said, Steven, I need you to bend down and just make sure that he's perfectly aligned with that toilet. And I was dealing with a spasm or something so that's why I couldn't do it.
THAU: Steven is the oldest kid. He was 13 at the time.
EVANS: And he looked at me and said, you wanted me to look at my Dad's butt? And I said, Steven, we're beyond that point right now. Just tell me that he's aimed right, and let's just go. I was just on overdrive. He bends down, and you could see his face get all red. And Henry's kind of tense sitting there, too. And Steven says, geez, Dad. I never thought we'd be cheek-to-cheek like this. And Henry started laughing, Stephen started laughing. And it broke up that awkward moment.
THAU: Slowly, Henry began to regain some control of his body.
EVANS: In the beginning, he literally was like a Raggedy Ann doll. He couldn't even sit in a wheelchair. But I'll tell you the big marker with him improving. A "James Bond" movie came out about that time. Halle Berry was in it, and he wanted to go see that movie so badly. I mean, Halle Berry should know the effect that she had on this man. And they said you are not allowed to go to a movie unless you can sit in the chair for four hours. So he worked and worked and worked on it. He went to the movie. I mean, he did it.
THAU: Another big breakthrough came when they started using a letter board to communicate.
EVANS: M, U - much B, much B-I-G, bigger.
THAU: This is Jane doing the letter board with Henry. He wanted me to know how extraordinary it is that Jane is able to move him.
EVANS: M-E-N. Much bigger men. C-A-N - can't. D - do that.
THAU: The board is a plexiglass square with the letters in groups. A, B, C is one group, and so on. Henry looks at a group of letters, which Jane reads to him. And when she gets to the right letter, he nods 'cause he's also learned to nod again. This is much faster, of course, than going through the entire alphabet for each letter, especially because Jane is very good at filling in the blanks. Most of the time, she can guess a word from just a few letters.
EVANS: Board again? I-A - Am. A-M - amazed. After almost 10 years, you're still amazed?
THAU: What's even more amazing is that they can do the letter board without the actual board. One day, they'd accidentally left it at home, and they discovered that they can do what they call virtual board.
EVANS: Now virtual board, what happens is this letter board becomes impregnated into your brain. You just see it. I'd watch his eyes in the air, and I know the group of letters that he's looking at.
THAU: A combination of ingenuity and the ability to laugh in the face of tragedy seems to have helped this family. And for all the things Henry lost, he always had laughter. This could actually be a problem at times, especially in the early days after the stroke when the emotional centers of his brain were heavily affected.
EVANS: T-E - tell Leah about - S-T-A-R - oh, gosh, Henry, this was terrible. We were at a talent show and this little girl gets up, and she could not sing, OK. He lost it. I mean, he was laughing - he was crying. He was laughing so hard. The whole audience turned to us. I mean, this poor girl was supposed be the show. OK, Henry was a show. I even put the towel in his mouth for him to bight down on. I'm wheeling him out of the theater as fast as I could run with him. And, I mean, unless you understand a stroke victim, it was so cruel what happened. But it's like, he can't fake it, OK?
THAU: A few years ago, Henry got a program to help him speak through a computer. And he sometimes chimes in with a robotic voice. But it's still much faster for him to do the letter board with Jane. He's also been doing speech therapy to try to learn to actually speak again. But it's not easy.
EVANS: We were in the van, and he broke down crying because he was trying to mouth I love you, and it didn't sound like it. I knew what he was saying. But he got so overwhelmed with emotion and frustrated that he asked for the board and said, I can't even tell my wife I love her. And I said, you just did. And I'm going to start crying. We are basically one person. We just can't decide if we are a boy or a girl.
THAU: Despite how fused they seem at times, Henry has a private inner world where he gets totally lost.
EVANS: Henry, there are times when you literally don't hear me. I would - I would go mad if I did not day dream. And so he and I were 20 in this world. You run in this world, right? Yeah.
THAU: He's daydreaming of you two together at 20. That's kind of neat.
EVANS: Well, that's what he says anyway. I don't know if Halle Berry's in that one. G. H. I-A-M-N-O - I am not - S-T-U - I'm not stupid, he says.
THAU: Henry and Jane seem able to laugh about anything. And it was almost hard to believe that they could be so cheerful. I wanted to talk to each of them alone to see what they might reveal about their inner sorrows and woes. Of course, talking to Henry alone is a challenge because he can't talk. But he's regained movement in two fingers, which allows him to type. So we corresponded on email, and he sent me this, which took him half a day to write.
Days took forever in the beginning. I just focused on the secondhand, and each minute was a lifetime. I was painfully bored. This only went away with time - months and years. Now when I count my blessings, lovely family, beautiful view, the fact that I'm alive and surrounded by friends, I'm happy. When I focus too much on what was or what could have been, I'm sad. Jane is amazing. She's the true hero of this story. Has there ever been a moment where you thought...
EVANS: Oh, yeah.
THAU: ...Can't do it?
EVANS: Absolutely. I'd be lying here to you if I told you that it was all a piece of cake and everything. No, are you kidding me? But you know what? I had a friend say to me the other day, you and your husband talk more than most people I know that can talk because you have all the time in the world. That's the one thing Henry has. Henry has time.
THAU: And time is the one thing they never had before the stroke when they were in their separate worlds with their separate stresses and neither had the energy to hear the complaints of the other.
EVANS: I wanted him to listen to the frustrations I had during the day. And he didn't want to hear about it because his job was so fast-paced. And I didn't learn this until after the stroke. And we were going through our entire marriage, and I said, oh, my gosh, Henry. I looked at you as so self-centered because I was so ignorant to his world. Yeah. And so it definitely has brought us closer, definitely. Not to say it was all rosy, no. Could I do this for just anybody? No. Couldn't pay me to do this job. Could I do it for him? Absolutely. But I look back when the kids were so little, and I actually ask myself how did I do it? I don't know. But that's what marriage is about.
THAU: But if you're exhausted, like you need a hug, he can't even give you a hug, right?
EVANS: Yes, he can.
THAU: I mean, that - he can?
EVANS: Yes, he can. I can place his arms around me, and then he can pull in a little bit. It's actually a really, really special hug because you feel it coming from the heart.
THAU: How often do you do that?
EVANS: Not often enough. But no, I have to say, last night I did that.
WASHINGTON: Wow. Big love to Henry and Jane Evans. That story, it came to us from the amazing Leah Thau. Check out a link to her podcast, the wonderful podcast, Strangers at KCRW.com/strangers. And we'll link to it on our website snapjudgment.org.
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