Reaching Down the Rabbit Hole (19 page)

“By the time George got the tracheostomy he was worn out. In hindsight, maybe he shouldn’t have waited. With the wheelchair, it took him falling and getting a concussion before he finally used it. With the feeding tube it took a ghastly amount of weight loss, and then almost choking to death before getting it. With the ventilator, it took a collapsed lung, pneumonia, and an insanely low vital capacity. He was reluctant with each new decision he faced along the way. With no available effective treatment or cure for ALS, he understood that once he sat in that wheelchair, he would never walk again; once he got that feeding tube, he would never taste food or drink again; and of course, once on the ventilator, he would never speak or breathe on his own again. He was really sick for about four months after the trach was put in, and he had a series of hospitalizations for various infections, the last being in May of ’06, when he wound up in the hospital
for forty-eight hours with bronchitis. But that was the last time he was in the hospital.”

“Does he get simple things, like flu shots?”

“We see the pulmonologist every six months for a trach change and a respiratory assessment. And we get his pneumonia and flu shots through the Visiting Nurse Association.”

“How often do they come?”

“We have an aide from VNA who comes seven days a week, and a nurse who comes about twice per month. Two people spend about three hours each morning getting him up, bathed, and dressed. It then takes an hour or two to get him back into bed at night. He definitely does best being cared for here at home, away from the hospital.”

The conversation started up where it had left off years before. On its face, this was a social call. But it was just as much a follow-up visit. I came partly because I needed to know how this works, how they make it work, how others could make it work. As I expected, it works very slowly.

“Do you have a plexiglass letter board like we used to use?” I asked.

“No. We should get one. But the computer has been fabulous. He uses it to write letters, and he can e-mail. But it’s a lot of work.”

“Are you controlling the computer with your finger or with your head?”

“With his knee,” she replied. “It’s kind of weird, but he has continued to have almost imperceptible movement in one knee, and in his head.”

“No finger movement?”

“No,”
George signaled with blinks.

“Yes” and “no” are a simple matter for George. In order to speak in full sentences, he uses a spelling system that divides the alphabet into five lines. He blinks to confirm the line, and his respondent then recites an alphabetical string until George blinks again.

“How do you know when to stop?” I say. “Do you go through the
lines of the letter board, George, and then you stop her at one of the lines, and then she goes across the letters?”

“Yes.”

“George is now texting like a teenager,” Felicity said. “He’s gotten a little bit shorter with his messages. He used to spell out whole words and long sentences, and I would say to him, ‘You don’t need to spell it all out, or use prepositions.’ But it’s hard to break good grammar habits.”

“So he’s bringing you to the line? . . .”

“Yes. And he’ll blink when I get to the right line. Then I go across to the letter.”

“And you have an equanimity and a patience with it? You are his voice?”

“Yes.”

“And this is the main thing you use with your child?”

“Yes. She’s very adept, incredibly so. She stores it all in her head and rarely writes down the letters he is spelling out. My daughter read five of the seven Harry Potter books in the second grade. They’re five-hundred-page novels, on average. She’s an amazing reader, and I tell people it’s because at the age of three she would come home from nursery school, and George would type: ‘Hello, Sophie, how was your day?’ Then he would hit SPEAK, so she would see what he was typing, then hear it. When she was five she learned the entire line system as a surprise for his fiftieth birthday.”

It was time to get down to the business I came for.

“We had conversations when George was getting worse about what to do,” I began. “There was the nodal conversation. You may be aware that while it’s not exceptional to decide to keep living with ALS, it’s not the normal decision, either. Most people throw in the towel. A lot of them are quite a bit older.”

“We’ve known many ALS patients in the last ten years.”

“I can imagine.”

“We’ve met many through this journey that haven’t chosen our path.”

“I was acutely aware of the fact that George was young, in his thirties, and that you had a young child, you had a life to live. He had certain notions of what was important and what wasn’t, what he wanted to do for himself, and what he wanted to do for his family. I’m sure you had those conversations at great length. So I’m just curious, what was that like?”

“What was it like to have those conversations?” Felicity looked at George, who rolled his eyes. “I can say a few things I remember about that. As soon as it was clear that he had ALS, George started doing the research, looking around the corner, looking the bull in the eyes, and didn’t back away from trying to understand what that meant, and what was coming for him. And very early on, long before he was even in a wheelchair, he made a very clear and informed decision that he wanted to have the trach and go on a ventilator. I can recall one conversation in particular, perhaps the first on this subject. We were out on a drive, and he told me, ‘I want to go on a ventilator when the time comes.’ I responded that he would have my full support in whatever decision he made, and that I was glad to know that now, because we both knew there would be a lot of planning. My understanding at the time from talking to you and reading about ALS myself, was that George would lose his physical body, but his mind and senses would remain intact. I remember telling George that I fell in love with him because of his soul, and that I knew that his soul, his essence, his spirit—what defined him as a man—was going to remain intact whatever happened to him physically . . .”

She turned to face George. “Do you remember this conversation? We were on our way to Salem Hospital to see our first neurologist.”

“1-A-B . . . 1-A-B-C-D-E . . . 3-K-L-M-N . . . 4-P-Q-R-S-T . . . 3-K-L-M-N-O . . . 3-K-L-M-N . . .
yes
.”
Benton
.

“So it was after we had seen you, and we had a pretty good inkling of what was going on, and we were on our way back to see Dr. Benton. We were in the car talking about what it means to get to a point where you are no longer physically able to move, and you are locked into
your body. Is all hope lost, and are you no longer worth anything? Are you no longer a human being? Are you not really alive at that point? George’s philosophy, then and now, is that hope is never lost, although the things he hopes for may have changed with time. He tells me often that life is a daily gift, always worth living, notwithstanding the physical limitations of ALS.”

When Felicity and George first visited my office together, they told me the story of the pull tabs. George was unable to grasp the baby’s diaper pull tabs between his finger and his thumb, and he had said to Felicity, “Something’s wrong here.”

“That was October 2002, the diaper thing,” Felicity reminded me. “I told him, ‘Nice try, now go in there and change the diaper.’ But over the winter there were other things. It would become increasingly troubling, but not enough to make us think something was wrong. I would ask, ‘Did you pinch a nerve?’ because George was incredibly athletic. And I remember we went to an event in January 2003, a black-tie event, and George couldn’t get his cuff links on. His thumbs were weak. And at that point I finally said, ‘You really should go see somebody.’”

“U . . . 3-K . . . 2-F-G-H-I . . . 1-A-B-C . . . 3-K.”
You kicked?
“3-K-L-M . . .”
Me.

“Oh, yeah, we were roughhousing on the couch with Sophie, and I kicked George in the thumb by mistake, and the thumb went right out. It popped out, because, though we did not know it at the time, all of the muscle was gone.”

With seemingly infinite patience, Felicity picked up on George’s subtle signals when he had something to say, and led him through the letter system. Most of his interjections were brief, but at times, I had to repress my natural urge to butt in as she painstakingly spelled out one of George’s longer thoughts, a process which involved anticipation, a lot of word-filling guesses, and a good memory. As she ticked through the alphabetical system, all the time keeping her eyes on George’s eyes and lips, her right hand scrawled letter sequences on a
lined pad of paper that gradually filled with wayward, clipped words and sentences, cross outs, and doodles. She did all of this without a hint of frustration.

“. . . O-n-e t-o t-w-o m-o-n-t-h-s?
Yes
. W-e-n-t t-o h-a-n-d s-u-r-g-e-o-n.
Right. One or two months went by
. . . a-n-d i-t n-e-v-e-r . . . h-e-a-l-e-d.
It never healed
. He’s just saying that it never healed. He ended up seeing an ortho guy who was a friend of his, who had done his knees, and he was the one who observed the bilateral loss of muscle tissue, and sent him to see the neurologist right away. At the time, George was still an avid basketball player. We had just moved into this house. We moved in the summer of 2002, had the baby two weeks later, and then a year later, unfortunately, we met you. It was a fast-paced series of events that moved us from a state of incredible joy to one of profound disbelief and sadness.”

Back then George had a powerful athletic body. Scattered around the living room were pictures of him from that era. The muscles were now gone.

“Where did you meet George?”

“George and I met in the late ’80s. I was working in the same office building as he was. It was love at first sight, and I stalked him for a while. But then I went off to law school, George got engaged, and I got seriously involved with someone else. But we stayed in touch, our friendship deepened, and eventually we both came to realize we were meant to be together. We’ve known each other for a long time.”

“George, do you think that religious or cultural background played a role in the decision to stay here at home on the vent?”

“L-o-v-e f-o-r l-i-f-e . . . a-n-d . . . f-a-m-i-l-y.”

“If there has to be a yes or no answer to that question, I would have to say no,” Felicity added.

“Did having an athletic background give you an edge, George?”

“M-a-r-t-i-a-l a-r-t-s m-o-r-e s-o . . .”

“George was a brown belt—judo. At the time the symptoms started he was doing aikido.”

“Did the martial arts training help with your decision to go on the vent, or did it make it easier to manage the vent?”

“T-h-e w-i-l-l t-o c-a-r-r-y o-n . . . w-i-t-h p-u-r-p-o-s-e.”

“He’s saying he had reason and purpose to stick around.”

“In retrospect,” I asked, “did you have a realistic expectation of what it would be like to be here today?”

“It’s hard to say. We had no expectations because it was so unknown. It would be as if someone had said to us: ‘Felicity and George, we want you to go live on the surface of the moon for five years,’ and after we lived there for five years, they said, ‘Was it what you had expected?’ I would have to respond, ‘I wouldn’t have known what to expect.’”

“George, could you have envisioned it, or do you have Felicity’s perspective that it was going to be what it was going to be?”

“W-e w-e-r-e g-o-i-n-g t-o . . . a-d-a-p-t . . . n-o m-a-t-t-e-r w-h-a-t.”

“There was very little anguish about what it would be,” Felicity added. “In my estimation, it takes a very special person, one with great conviction and patience, to be able to say: ‘This is what I want. If it turns out to be a disaster, it’s going to be a disaster, and that’s it.’”

“It takes a lot of courage,” I added.

“It takes incredible courage. George is the bravest human being I will ever meet, but I don’t think George has ever patted himself on the back about this. There are people around us who’ve never been able to come to terms with this: friends and family members who love him very much have had an incredibly difficult time mustering up the effort to tackle his mode of communication. And many found the tubes, the vent, the total paralysis, the seemingly complete incapacitation of a vital human being, too difficult to witness, and they eventually faded away. But those friends that were able to look into the ugly face of ALS and not turn away came to realize that the essence of George had survived this calamity, and for that they have been blessed with the ongoing gift of his love, his humor, his friendship, and an inspiration for life that comes from being around him. I know
it sounds irrational, but for George and me, and maybe in part because of our daughter, we have endeavored to live our lives normally. I tell people all the time, we are a pretty normal couple. George is an amazing father and an incredibly supportive husband and friend. There’s just a few things in our lives that are a little different, like, you know, like that he is ninety-nine percent paralyzed and totally dependent on others.”

“I assume that financially it’s a burden, but that there are also resources available to you.”

“Yes, it has been a financial burden. But we were also very blessed. We were at a time in our lives, just before he got sick, when we were preparing to have a child, and were taking on a significant mortgage, so we were planning for the future, financially speaking. He had health insurance . . .”

“And disability insurance?”

“And long-term care. And it was really very fortuitous that we had pursued all of that. It’s very difficult financially to live like this, and we are incredibly lucky that I have a good job, we’re lucky that we have been able to keep this house. You can’t leave George by himself; he requires twenty-four-seven care. It’s a big issue for people facing these situations to come to terms with the economic impact.”

“If I hear you right,” I said, “you would have made that first leap anyway, because that was based on character, and then figured it out later. But you’ve been lucky. You told me all these things early on, and I thought, if anybody could do this, it would be you. I don’t recall, was I encouraging and supportive, or did I try to discourage you?”