Father of the Groom

“Bob, do you want to say something?”

This is what Judy Horn asks her husband, day after precious day, this particular day being more precious than most.

It is a sunny Saturday in late spring, and the modest tract home on a cul-de-sac in the San Fernando Valley brims with nervous energy. Outside, tiki torches with blackened wicks rim the crescent driveway, remnants of a Hawaiian-themed wedding rehearsal feast that brought together some 70 family members and friends. Inside, a group of young men regales me with accounts of their rowdy, drunken bachelor party. No dancing girl--”Chris didn’t want one and that was cool”--but a good lewd time, they assure me, was had by all.

The mother of the groom enters and pretends not to hear, but she gives a grimacing smile. Judy Horn, elegant in a new dress that matches her soft blue eyes, then moves to a bedroom to help her husband look his best, which takes some doing.

Robert Chisolm Horn III still lies in bed. His brown eyes glance sideways in silent greeting. His eyebrows tremble and twitch. And I think I see him smile.

Bob Horn is looking good, very much like the man I first met nearly five years ago, handsome in an aptly professorial way. His gray hair and beard, something about his visage, remind me of the image of Plato on a million paperback copies of “The Republic.” Was that a grin or not? I’m not really sure, because I’d thought Bob had lost the physical ability, though not the emotional capacity. As a friend once put it: “Bob doesn’t smile anymore. He glows.”

A home-care worker bends Bob’s inert torso forward and threads his limp arms through a vest, working around the light orange tube that tethers his windpipe to a mechanical lung. His dress shirt covers the catheter that feeds into his stomach.

The bustle and chatter almost conceal the rhythmic wheeze of the machinery that has kept Bob Horn alive since doctors seven years ago gave him a choice: Either “go on the vent” or die. That was three years after he complained to a neurologist about a twitch in his left arm. A pinched nerve? The doctor conducted tests and eventually asked: “Have you ever heard of Lou Gehrig’s disease?”

Mario Hernandez wrestles Bob into his tux as I wander the room. Near the ceiling, easy for Bob to see, hang high school portraits of children Jeff, Chris and Laura. Other photos decorate the room, some from the two years the Horns lived in Indonesia and Malaysia and lots from the 14 years Bob coached youth soccer. A baseball bat autographed by friends from church is affixed to a wall. Shelves hold volumes on Russian history and politics, Bob’s specialty when he taught political science at Cal State Northridge.

Three people hoist Bob from the bed to a wheelchair that lies flat and is cranked up to a La-Z-Boy tilt. Mario detaches the orange tube and reconnects it to a portable ventilator beneath the seat.

This is when Judy reads Bob’s expression and asks if he wants to talk.

He raises his eyebrows: yes. Judy picks up a clipboard and begins speaking in code. “One, two, three.” Bob lifts his eyebrows. “K, L, M.” His eyebrows move again. The first letter of the first word is M.

They know their alphabet code by heart, but this will take some time. So I again study the walls. Bob’s sense of humor, I see, hasn’t changed. Here’s a New Yorker cover depicting a presidential press conference with microphones aimed at the presidential crotch.

This reminds me of the last time we talked. I had called to check on Bob, and Judy asked him if he wanted to say something.

Did you really leave early?

I laughed out loud. His incredulity pertained to a column I had written about a Monica S. Lewinsky look-alike striptease contest.

Now, on her son’s wedding day, Judy translates again:

My walls show my favorite interests--family and friends, Russia, Asia and baseball.

No wisecrack or wisdom this time, just info.

In his black tux and navy vest, bow tie neatly knotted, Bob finally appears ready to everyone except Judy.

“He’s too low,” she says. Gravity, she knows, will tug on her husband as the day progresses. So they crank down the chair, unstrap Bob, hoist him back to the bed and try again, this time with Chris’ help.

Mario again tightens the straps. Now Bob has something else to say. Judy decodes: My fanny . . . If his fanny is too high now, Judy figures, well, that will change. Besides, the clock is ticking.

They have to get Christopher Edward Horn to the church on time.

*

It is an honor to be here. I met the horns in 1993, a few months after I began writing a thrice-weekly column for The Times’ Valley Edition. I had written about the sister of a man dying of AIDS who, acceding to his wishes, had lovingly given him an overdose of morphine. It seemed wrong, I suggested, to saddle loved ones and not physicians with such sad business.

Bob sent a letter. He said he agreed with me and described his own life-or-death dilemma. He wasn’t the sort of man who would seek out Dr. Jack Kevorkian, he told me, but he understood those who did. He also explained how he could still lift one leg an important fraction of an inch, which enabled him to “kick out” his letter on a jury-rigged computer mouse hooked into a special program.

Soon I would learn that Bob wrote not only letters but articles for academic journals as well. Just as Judy saves time by guessing which word Bob is trying to spell out, so does the customized software. When Bob kicks out G and O, it offers him the option of, with one tap, writing Gorbachev.

Over the next few years, I visited or called from time to time to collect fresh dispatches on the extraordinary Bob Horn. When the Northridge earthquake caused a power outage, for example, Judy and Chris kept Bob alive by squeezing a bellows-like device called an ambu-bag. And I covered one of Bob’s book signings. What began as a memoir for his family had evolved into something of a how-to manual for the catastrophically ill. The publisher, St. Lucie Press, wanted “a grabber” of a title.

Working with the subtitle “Transcending Disability and Terminal Illness,” Bob put his mordant wit to work. In large type on the book’s cover he asks: “How Will They Know If I’m Dead?”

*

“You look sharp,” Dr. Tom Horn tells his older brother as Mario wheels Bob toward the entrance of Northridge United Methodist Church. “I might have gone with a black tube,” he adds, gesturing toward his own throat. “But, whatever.”

Care is being taken to keep the groom and bride apart. Friends hustle Chris out of view while Kristina Bassler smiles for the camera, the ceremony still half an hour away.

About a year ago, Chris and Kris (“C Chris and K Kris” Bob called them in a rehearsal dinner toast read by Judy) started to look at each other in a different way. Chris had known her since she was 12, playing soccer with his sister, Laura, on a team coached by his dad. Now she is the women’s soccer coach at UC Santa Barbara. Once they started dating, it all seemed so right.

And so, behind a door marked Choir Room, Chris waits with his father and the groomsmen as 200 guests arrive. The younger guys pass around a bag of cashews, and Bob snacks, too, with Mario pouring a nutrient-rich beige liquid into a beaker that drains through a thin tube into Bob’s stomach.

Finally, we hear the music Bob selected--a prelude made up of Debussy, Massenet and Mendelssohn. A Mozart concerto for the seating of family and a candle-lighting by the mothers. And then the bridesmaids line up to Pachelbel’s “Canon in D.”

Now everyone is in the traditional places for the bride’s entrance, with one exception. The father of the groom waits near the doorway, brother-in-law Kim Smith behind his chair. A few weeks earlier, Kris had told Bob that she has always thought of him as a second father. Would her old coach do the honor of walking her partway down the aisle?

Kris enters, gown shimmering as she trembles, and puts a hand on Bob’s arm. The wedding march begins, the guests rise, and together she and Bob head down the aisle. After a few rows, Corky Bassler, appropriately beaming, takes his daughter’s arm and delivers her to the altar.

Two pastors take turns speaking. The familiar words of 1st Corinthians 13, read by Tom Horn, seem to carry more meaning in the presence of Bob and Judy.

“Love is patient, love is kind. It is not jealous or boastful, it is not arrogant or rude. Love does not insist on its own way. It is not irritable or resentful. Love does not rejoice at wrong, but rejoices in the right. Love bears all things, believes all things, hopes all things, endures all things. Love never ends.”

So, too, does the last line of the vows:

”. . . I promise to cherish and tenderly care for you, through all the changes of our lives.”

*

The assembled members of the Horn family fan out around the newlyweds for the photographer. Bob, front and center, is looking good, so much better than the last time I’d seen him, when the tip of his tongue poked out of a corner of his mouth. It may have looked comical, but he was in pain.

Bob’s resemblance to a quadriplegic often leads people to falsely assume that he feels no sensation. He welcomes a friendly pat on his hand, and would yelp if he could when his foot collides with a door jamb. Judy and Bob joked about the protruding tongue, despite the misery.

Amyotrophic lateral sclerosis, or ALS, strikes the nervous system, gradually killing muscle control and typically causing suffocation within two to five years of diagnosis. About 30,000 people in the United States have the disease. There is little hope for a cure as long as the cause remains unknown. Only in the last few years has research yielded a new drug that slows the progress of ALS.

Bob was still bicycling to campus daily when he first felt the twitch in his arm, in June 1988. Because ALS is diagnosed by a process of elimination, he initially had hope that the doctor was wrong. As Bob put it in his book: “I knew what Lou Gehrig’s disease meant: progressive loss of muscle control leading to death within a few short, agonizing years. I was never going to be normal again. And, very soon I was going to die.”

Hope faded as more symptoms appeared. Bob started falling off his bike and then later stumbled as he walked, unable to lift his arms to break his fall. His spirits fell, too, but he found solace on the soccer field and in the classroom. For a time, he motored around campus on a three-wheel scooter that everybody called the “Gorbymobile.”

The disease eventually compromised his arms and hands, leaving him unable to operate his scooter. Worse, it attacked his throat and tongue; swallowing became difficult and his speech began to slur. He went on the vent and the G-tube at the same time.

Bob’s is an exceptional case, though by no means a record breaker. Stephen Hawking, the physicist, was diagnosed with Lou Gehrig’s disease when he was 21 and is now 56. Hawking can still move a few fingers; Bob can still twitch those eyebrows and “kick out” his letters.

It would have been poetic, perhaps, to see Bob’s tongue and imagine that he intended it, defiantly, for the disease itself. It would be more accurate to see it as a cruel, capricious bit of torture, because ALS also made Bob’s jaw tighten, causing his teeth to bite down.

So after months of pain, doctors put Bob under anesthesia, loosened his jaw, removed his teeth and cut out part of his tongue. Then, noting symptoms of possible internal bleeding, they performed gastrointestinal tests that revealed he had colon cancer in the early stages. Soon Bob was back in surgery again, and a tumor the size of an avocado pit was removed.

Doctors reluctantly advised Bob to consider chemotherapy. He and his family talked to specialists. Bob concluded it was best to focus his energy on coping with ALS.

“He figures he’ll die from ALS before he ever dies from cancer,” Tom Horn tells me, after sidling into a pew as more wedding photos are taken.

Tom, a psychiatrist who lives in Pittsburgh, visited Bob during the cancer ordeal while his own marriage, his second, was falling apart. The physical toll of the operations, he says, had Bob “in a funk.”

When he asked Bob how he was feeling, Bob replied via the alphabet code:

OK. You’ve had it worse than I have.

“Well, he is my big brother,” Tom says. “And he hasn’t stopped being that.”

Hearing this reminds me of another Bob Horn moment, during our first meeting. Judy was helping Bob and I discuss court rulings regarding assisted suicide.

The real story, he began, is . . . .

He signaled a J and then a U. We started to guess. Judgments? Judicial? No, that wasn’t it. Yet Bob signaled a D next.

Flummoxed, Judy started again with the code: “One, two, three, four, five.”

When I saw the look she gave her husband, I realized Bob had changed the subject.

The real story, he was telling me, is Judy.

*

They started dating as seniors at Wittenberg University in Ohio, two students among 2,000, and she made the first move. Judy invited Bob to her sorority’s Christmas dance; then he invited her to a basketball game. After graduation in June 1964, Judy went to work in New York and Bob to graduate school in Boston. They soon grew weary of riding the Greyhound and married later that summer. Judy worked as a secretary for two years while Bob earned his PhD.

They had been married nearly 24 years when Bob told Judy about the diagnosis.

“I learned,” Judy says, “the meaning of the word overwhelming.”

Now, several years after she assumed the love of her life would be dead, Judy caresses Bob’s hand as they sit with family at the first wedding reception for the Horn children. Some of the guests here probably donate anonymously to the Bob Horn Fund, a trust established by Northridge Methodist Church to help the family cover expenses such as the home-care workers the Horns train themselves. A procession of well-wishers warmly toasts the bride and groom.

Finally, Chris Horn asks for the microphone.

”. . . I want to give special thanks to my parents. You guys are incredible. Years ago, and I don’t mean to be morbid in any way, but, there was a chance that Dad wouldn’t even be around for Laura’s high school graduation.

“And not only has he seen all of us graduate from high school and we’ve all graduated from college now, and here he is at our wedding.

“You’re an inspiration, Dad. We all know that you wouldn’t be able to do it without Mom. Thank you guys very much for everything you’ve done for me.

“I love you.”

If there are any dry eyes here, I’m not sure where. I blink back mine and see other guests dab at theirs with handkerchiefs and napkins.

Soon the dance floor fills, and no dancer has more energy and enthusiasm than Judy.

Bob sits beside his long-widowed mother. Mario’s shift has ended, and now Nixon Gomez is reading Bob’s eyebrows. I drift over and look at the clipboard resting on the portable vent.

I wish Pop could have seen this wedding.

One song blends into the next, and then the beat slows a bit with the familiar sound of Frank Sinatra:

Someday

When I’m awfully low

And the world is cold

And now Judy appears behind Bob’s chair, wheeling him to the dance floor, joyously whirling him about.

I will feel a glow

Just thinking of you

And the way you look tonight

Daughter Laura joins their dance, and when Sinatra fades out, the deejay segues into another familiar song, the Bee Gees’ “Stayin’ Alive.”

Laura does a mean Travolta. All the other bridesmaids gather around, dancing with their old coach, stayin’ alive, stayin’ alive . . . .

Judy orders me to put the notebook away and pulls me out onto the dance floor.

*

A few mondays after the wedding, I am working late on this story, touching up the-real-story-is-Judy part.

The phone rings. It’s her on the line. Bob, she tells me, insisted that she call.

They want to offer condolences. My column the day before had been about the death of my 81-year-old father. He was good man and a good dad and it feels good to tell the Horns more about him.

Judy and Bob listen patiently over their speakerphone. I do go on a bit. I recall that my brother’s wedding had been a glorious day for the Harris family, just as Chris’ wedding had been for the Horns. Judy asks about my girlfriend, wonders when I’m going to tie the knot.

Marrying, obviously, is one of the many things Bob Horn did well.

I picture them in their living room, Judy gracious and patient and Bob sitting in front of his computer with a view of an autographed photo of Ernie Banks turning a double play. Banks hit more than 500 home runs for the hapless Cubs but was best known for his irrepressible love of the game, the wish that every day he could play a doubleheader. “Let’s play two!” he would say. And Bob Horn says he likes to think of life on the vent as the second game of an unscheduled doubleheader.

Maybe, in this second game of life, Bob thinks of himself as a designated hitter. He can bat but he can’t play in the field. He once told me he kept his sanity by focusing on the things he could do, not the things he couldn’t.

He could still read and write and think.

He could still laugh and joke.

He could still indulge his hobbies. (His rotisserie baseball team, Da Slugs, is contending for another championship.)

He could still enjoy the company of friends.

He could still feel a caress and a kiss.

He could still love and be loved.

No one would trade places with him, but it became plain the day I met him why Bob Horn chose to go on the vent. A man who had lived so well simply wanted to go on living. How many of us are surrounded by such love and devotion? How many of us have the strength of will, the courage, to confront such a twist of fate? Living well, it is said, is the best revenge.

So it wasn’t pity I felt but something else as I drove away from the home of Bob and Judy Horn that first day. I couldn’t quite find the words for it. Awe, certainly. But something else, too.

Something like envy.