A Bright Little Boy Named Ben

ONE NIGHT IN THE SUMMER of 1983 I was sitting at a table in a one-room cabin on the shore of an Ontario lake with a group of friends, newspapermen or ex-newspapermen, who once a year gather, some from afar, to fish, drink, and talk. One, who is managing editor of a Seattle daily, mentioned Neil’s concert in Seattle a couple of weeks earlier. A few others were chiming in when Gillis Purcell intervened. Purcell, as we all call him, or G.P., then seventy-eight, long my dear friend, was the man who had put up security for my borrowed down payment on my first house with Bob three years old and Rassy pregnant with Neil.

“Never mind the millions of albums he’s sold and the millions of bucks he’s made,” Purcell ruled abruptly. “The most important thing I know about Neil and his wife is what they’ve done with their little boy. After he turned out to have a pretty severe handicap.”

“I’ve read just about everything that has been written about Neil since I knew him as a kid starting out,” he said. “I know all that stuff. But what he and Pegi have done to care for their little boy anybody can identify with, whether they go for what Neil does in music or anything else.”

Pegi
The birth was a month early. It wasn’t a terribly difficult birth, but Ben’s face was really bruised. I thought it was probably just from coming through the birth canal, and nobody told me any different, although later I found that it wasn’t normal and I’ve tried to get answers, but at the time all we knew was that it was ten days before we could get a picture of him because he was so bruised and swollen that his eyes never opened. He was really unhappy around Christmas of that year when he was not even a month old, and he kept being unhappy for a long time. When you’re a mother for the first time and a baby cries a lot it’s worrying, but you hear about cranky babies and we didn’t know then that he was unhappy because he was in pain. I didn’t think of cerebral palsy then but I knew something was not right, and this feeling started to grow when he was two months old. They kept telling me it was just developmental delay because of his prematurity, but I read baby books because I wanted to know what he should be doing. Even at two months he should have at least been doing what a one-month-old baby would be doing and he wasn’t. So the developmental delay idea, I never really believed it too much. The one thing that really started me wondering what was wrong was that he didn’t hold his head up the way a normal child will, he just never got that balance.

I discussed it with Neil, and everybody who saw him. “Do you think he looks normal?” I’d ask. “Do you think he’s all right?” And everybody said, “Yeah, he’s fine. Don’t worry about it.” But I did. He hardly smiled at all. He grimaced. One picture I took of him at the time, I sent out to the boat because he was smiling, what I thought of as a smile. In looking back at it later it was just a grimace, just pain, we came to see that the little guy was in such pain.

Those months dragged on in 1979 and finally cerebral palsy was diagnosed. We had a girl working for us, Jeanie, who had some training in therapy. She helped us give him the best care we could. Then I guess when he was about five or six months old Jeanie brought us some news clippings from the National Enquirer that I still have. The heading was something like, “A miracle boy who couldn’t do this, but now could.” First thing, seeing it was from the National Enquirer, we thought it was nothing, bunk. But we thought, well, we’ll just call telephone information in Philadelphia and see if there is such a place as the Institutes for the Achievement of Human Potential that was mentioned in the clippings. There was. So we called there to ask questions and I was put through to Gretchen Kerr. Later I got to know her. I asked if the story was true and she said it was, that they had many cases like the boy mentioned in the story who’d been helped to overcome at least part of his handicap.

So we began to think about it. A while later, David Cline was building his house in Half Moon Bay. It turned out that one of the carpenters had some friends who were working with their child on a program from the Institutes. David told us and we invited the couple over to our house one day, to tell us about the program and how it worked. I guess by then Ben was about a year old, because we ended up going to their home just after Christmas of 1979 to watch them do the program with their child. All the time I was saying to her and her husband, quite honestly, “I don’t think I can do this, it’s just going to take too much time away from my life.” But a few days later, even after what I had said, they sent in a card to the Institutes recommending us for inclusion in the program. Even knowing that I was not 100 per cent sure I could do it, they sent in the card.

A little after that we began getting communications from the Institutes. First thing you do is write a brief history of your child, everything that you think is important, to the best of your recollection. So I did that. I remember mailing it when we were away from the ranch while Neil was doing a little part in his movie Human Highway in a Dutch community where there are a lot of windmills. Actually, we were on our way to Los Angeles at the time to live for a couple of months while Neil was shooting for his film down there. While we were in L.A. I ended up volunteering to help another family with a child on the program. I’d go one day a week. One of the actresses in the film had been doing that, and I took her place. So now we had this other family writing in to say that we were capable of doing the program, even though in my heart I was still saying, “I really don’t think I can do it, it’s just more than I can do.”

Then in the spring of 1980 just as we heard that we were being put on a short list I started getting terrible headaches. Nothing would help them. I had to go into hospital for tests, and soon I was told that I had what was called an arterial venus malformation, and that I would have to have brain surgery, or I could die anytime.

First thing I did when I heard that was to phone the Institutes and tell them about the brain surgery, and not to put us into a program at least until after August. My surgery was set for May 8 and my doctor had told me that if everything worked as it should, it would be three months after the operation before I’d be feeling myself again.

A few weeks later, that worry was removed. Pegi came through her operation perfectly. But soon I got a call from David Cline. “Neil’s going to take Pegi and Ben on the Ragland on a cruise out into the Pacific to visit a lot of different countries, and we find that his passport has expired.” A new one could be issued by the Canadian consulate in Los Angeles, but to get it they needed Neil’s birth certificate and couldn’t find it anywhere. Rather than risk delays that might foul up the trip, David asked, could I get a birth certificate for him? On sober reflection, I got him four copies at five dollars each (my treat) and suggested to David that they all be filed in different places. Head ’em off at the pass, so to speak.

Neil told me on the phone from Philadelphia late that week about their decision. We had talked a couple of times earlier in the week and he had told me how impressed he was. “In all the people and organizations we’ve seen about Ben, we were never satisfied with what they told us. So much of it was just cosmetic. This is the first time I’ve heard something that makes sense to me – everybody pushing to the limit to make a child try both physically and mentally.” When they went back home they went straight into the program which was to dominate their lives, they knew then, into the indefinite future. From then on, when anyone mentions it, it somehow comes out as if in capital letters: The Program.

A few months earlier I had returned rather precipitously to freelancing, intending to write nothing but fiction. I had no money and was in the hole at the bank. As you might deduce from that, I had not exactly planned my departure from The Globe and Mail, where I’d served two hitches totalling nineteen years. I had simply become furious one day, and quit.

One morning a couple of weeks later I got back from a hockey game in Philadelphia, drove home to the country, and picked up the paper to find on the front page precisely the kind of thing I had warned against – the reporter in question quoting scurrilous remarks from unnamed sources. It seemed to me to tar by association those of us who took some pride in journalistic ethics. Just the fact that I worked for the same paper made me feel ill. I typed out my resignation and put it on a primitive fax machine, then called a remote copier, so it was in the office in minutes. Although the editor, with whom I have remained friends, and I had a long palaver by telephone the same day in which he asked me to reconsider, I let it stand. Within weeks the other man was gone as well, and subsequently was fired from another newspaper, the Toronto Sun, over a front-page “exposé” in which, he later admitted, he had fabricated certain sources. This story resulted in a lawsuit by a Canadian cabinet minister, John Munro, for something close to $700,000. As I told the Globe’s editor later, in that case I’d been out by only one newspaper and a few hundred thousand dollars (which I admit turned out to be somewhat hyperbolic, as, although John Munro won the case, the money award was a little less than $100,000).

He looked at me with tears starting to his eyes, and growled, “I didn’t know writers had hearts.”

I didn’t tell him that I had given the matter no thought at all; in fact, the words of my offer had been as much a shock to me as to him. There I was, a penniless writer, giving away many thousands of dollars in royalties! Amazing. Yet I can’t help thinking: Conn Smythe often said, “Cast thy bread upon the waters and it will return one hundredfold.” From the minute I made my stupendously impulsive statement, I entered one of the happiest periods of my life. It makes me think maybe the old guy was right about bread cast upon the water resulting in more than just wet bread.

Five days later I got the phone call that told me he was gone. I spent a few months tidying up the manuscript. After I turned it in at the end of March, I flew to California. I needed the trip. Working as closely as I had with Conn Smythe, coming to love him for his prickly strength and honesty, sometimes writing with tears in my eyes, and not coming to terms with his death nearly as easily as he had himself, I was somewhat of an emotional basket case.

Neil met me at the airport in a 1950 Plymouth in perfect condition, found he’d come without any money (he never needs it on the ranch), and bummed a dollar from me to get us out of the parking lot. We drove home talking. “You’ll see Ben’s program,” he said. “It’s amazing. You’ll be able to help, if you want. We need three people on it all the time so we have a lot of volunteers who come in, but sometimes one of them can’t make it and we need somebody.”

“Count me in,” I said.

The house was not large: their bedroom, Ben’s, and one for an attractive and helpful Swedish maid, Britta, who had not been long in the United States. The living room was the main focus of their home and Ben’s program with a big bay window overlooking rolling ranch land, a big fireplace with its firewood piled outside a nearby side door, a piano, a guitar leaning against a wall, a television, stereo, a dining area, old comfortable furniture, clear floor areas for his crawling exercises, a slanted ladder where he worked at keeping his feet in place and holding on with his hands. At one end was the table where Pegi worked, it seemed endlessly, on the printed cards and pasted-on pictures of what was called the intelligence part of the program. And there I settled into the routine of being a pinch hitter for any volunteer who for one reason or other couldn’t show up to help with Ben – this grandson of mine with the merry welcoming smile, the glint in his lively eyes at every joke. And I could see how the program dominated all their lives.

Pegi sometimes worked until midnight preparing the next day’s mathematics cards and simple sentences with related pictures and going over the carefully timed and reported results of the previous day’s program. She was simply a wonder, the gung-ho mother on which much of the program depended.

At first, he and Pegi told me, they’d both worked whole days with Ben, the volunteers being extra to the parental effort. When the strain of this began to show, they worked out a sensible system of shifts. If it was Neil’s turn to be on with two volunteers (or Britta plus one), Pegi was free to shop, garden, visit friends, get away. Other days Neil would lead the program from when Ben woke for breakfast, around six A.M., until a few hours later when Pegi took over. Pegi told me that before the program began, Ben rarely went to sleep without crying and fretting. Now when he was put down, tired from his efforts, his eyes would be closed before Neil, Pegi, or Britta could get out of the room.

We’d show him cards with simple three- to five-word statements on them, cards with dots that represented numbers, picture assortments with spoken as well as printed identification of what was being shown. “These are cats, Ben,” we’d say and then show him pictures of cats from lions to tabbies. Buildings, from the Empire State to the Taj Mahal, were in another series. Information grouped in such categories gave him the chance to see, over and over, the variety that could follow when one said, “cats” or “buildings” or “dogs” or “birds” or “horses” or “money” or “boats.” He would fasten his fingers and feet on the rungs of the ladder and try to stay on for sixty seconds. As rewards many times a day he was read stories that even when I first met him, when he was not yet three, he knew by heart. His smiles would begin to fade when he saw that the reader was getting to the last pages. He would still listen intently but the smile gone, knowing that the story he knew so well was over once again, time for more work.

Because Neil worked so much more on the program than most husbands, Pegi saw it as essential that they have those kind of talks so that they could be sure they were doing everything the same way. Sometimes, Pegi confessed, it took a while for her ideas to get through; Neil was so used to being the one who had the ideas, which everybody else went along with. “He’s not used to following someone else’s idea.”

Around then I first met Pegi’s mother, Margaret Morton. She came up from San Mateo once a week to help with the program. I felt an immediate liking and friendship for her. Through Neil and Pegi we had concerns in common. When she left that night I walked with her to her car. We talked about Ben, and his progress, which was slow, and the tremendous effort everyone – Ben himself, his parents, and the nearly thirty volunteers who came, like Mrs. Morton, for a morning or afternoon once a week – made. I mentioned how cheerful Ben is.