Haemophilia is an extraordinarily painful and protracted disease. A bleed is usually treated eight or ten hours after it has started, for it takes this long for a knock to become more painful than the initial bump. People bump themselves around sixty times a day and so it is impossible to notice a bump and transfuse it immediately. You have to wait and see if an ordinary, casual bump has caused internal bleeding. But once a bleed starts the pain continues long after the blood transfusion has been given. The clotting Factor VIII takes at least seven hours to stop continuous bleeding and often as long as a couple of days. This means that internal blood, seeping out of thousands of capillaries, builds up pressure under the skin. Unable to break the skin, the blood soon has nowhere to go and pushes inwards. The result is not dissimilar to being squeezed tighter and tighter by a vice. Imagine your hand, arm or knee in a vice which is squeezed relentlessly for eight or ten hours. The pain would become unbearable.
Haemophilia was a handicap for Damon. How could he lead the life of a small boy? He would never jump from a wall or cross a ditch or kick a ball properly or romp about and fall into a delighted heap of squealing young bodies on the front lawn.
Damon was a capricious gift to us, one we knew we must delight in while we could. We cherished him so much. We knew that if he joined in physical play with other kids he would certainly end up in great pain with an internal bleed which would need a trip to the hospital and a blood transfusion. So we lived those early years with our hearts constantly in our mouths.
But, despite this, Benita and I decided that he should make his own “physical” decisions as soon as he was old enough to understand the full consequences of his actions. If the simple act of kicking a ball was a calculated cost, if the price of being a normal kid, if for only a few minutes at a time, came very high then the decision to do so must be his. We had no right to impose our anxiety on him or claim to know what was best for him.
At least in this regard we were intelligent parents, for I truly believe this difficult decision on our part allowed him to grow up a wonderfully well-adjusted person. His frustration at not being able to do the physical things other kids took for granted was enormous, but it was never to turn into resentment or self-pity, or worse still, a derring-do attitude that would put him in deliberate jeopardy. I can never once remember Damon ever feeling sorry for himself.
Because he spent so much time away from school, physically disabled in some way, his mother and I became closely involved with his intellect and imagination – she by introducing him at a very early age to books and me by teaching him how to use his mind in an idiosyncratic fashion. We started early with our toddler, when he had his purple head and I’d go in to see him every evening.
He’d sit on my lap and I’d talk to him about Africa and about the life that goes on in our heads. It wasn’t simply idle dreaming, but another sort of reality such that, when things got bad, there would be a place to go to inside your own head. It wasn’t stuff he’d understand for a great many years to come, but I told it to him anyway so that, when comprehension eventually came, it would seem as though he’d always known it was there waiting for him, his own private country.
Then I’d sing to him, silly little songs in Zulu and Afrikaans and even one in English. The English song was always George Gershwin’s “Summertime” from the folk opera Porgy and Bess. It was my favourite and I knew all the lyrics, but alas, with my decidedly unremarkable voice, I was banned from singing it at home. As far as I know this is a lifetime ban that’s never been lifted. But Damon allowed me to sing it and he didn’t seem to mind in the least when I sang off-key or when, trying to sustain a particularly mellifluous note, my voice broke. Sometimes I would sing it to him twice, careful to get the croaky bits correct the second time around. His purple head would blow spit bubbles and he wouldn’t mind at all. Damon was a pretty tolerant sort of guy even then.
I am convinced that the need to dream is critical, to visit the private country in your head is an essential part of thinking, a natural problem-solving gift we are all given if we choose to use it. What I was really creating in Damon was simple self-hypnosis. Used intelligently to take us into ourselves, into parts of the brain we don’t sufficiently use, it allows us to see problems from a different perspective and often to solve them in an original and more imaginative way. In reality, there really wasn’t any need to teach it at all. I simply allowed Damon’s dreaming to continue on, to stretch beyond his early childhood, careful only from time to time to add a little direction and to guide its haphazard and uncharted early childhood ways.
As it turned out, he was to lose two days in every week of his school life and to keep up with his classmates he was going to need something extra going for him. No matter how clever he might be, almost half of his school life absent from his school desk did not augur well for the examination-based curriculum of modern education. He would need another way to learn and so teaching him how to use his mind more completely seemed to me to be a suitable way to go about the task.
Because Benita and I spent so much more time with him than is usual, we had more responsibility for the things which influenced Damon than the conventional mélange of teachers, peers and siblings. Benita taught him the joy of books and of music and art. She taught Damon how to see and hear with intellectual clarity. I am not suggesting that Damon was exceptional in these things. While he developed a more sophisticated sense of art and music and, perhaps, even books he didn’t ever show any artistic bent. Adam, his brother, was intensely musical with a good ear for languages and Brett showed an early ability to paint which seems to have since diminished. Damon was none of these things. He grew up to be someone who got a great deal of pleasure being a user. He seemed to delight in things. He, more than anyone I’ve met, seemed to use both the left and the right brain without conscious effort. He was always curious and wholly interested in just about everything around him.
At twelve, Damon was reading Franz Kafka and asking his mother questions she was barely able to answer. He seldom asked me questions of the intellectual kind, mostly for fear that I’d dad fact his query – I’d use my intuition where the answer was unknown. My ability to answer any question ever asked of me, Brett had labelled as a dad fact. These spurious, though often well-surmised and often coincidentally accurate answers, played an important part in the lives of my children. They would take some of my more outrageous creative answers or assertions to school to the delight and astonishment of their schoolmates who collected dad facts as eagerly as my own children did.
Even some of the masters wished to be informed of any new dad facts which might emerge. I became the prince of pure speculation and the master of the plausible impossibility. Even today among their friends, Adam or Brett, not sure of all of the facts of a matter, might paraphrase a statement by saying, “This may well be a bit of a dad fact, but I recently heard that…” One of the more important outcomes of dad facting was that all my kids grew up to make certain of facts while also accepting that pure speculation has a part to play in thinking.
Damon wasn’t especially gifted. As he grew older he wanted all the yuppie things. He spoke of an expensive apartment, beautiful things around him and always of the Ferrari he would drive. He was convinced that he would be a millionaire by the time he was twenty-five. Quite how he would make this happen he was less clear about. Perhaps I had taught him to dream too well. His head was filled with business schemes all involving overnight success, not a great deal of effort on his part and the making of unlimited money. In the meantime, magically, he seemed to enjoy his life even though he was in constant pain.
From the very beginning Damon had a great many problems: his body didn’t work; he was constantly disappointed by missing out on parties or excursions he’d looked forward to for weeks because he’d have a bleed and couldn’t go; and his body was always covered in unsightly bruises. But one of his problems wasn’t loneliness. He attracted people around him effortlessly, those of his own age and others closer
to their dotage; all saw themselves as his friend and never tried to patronise him. Somehow, he had mastered the gift of friendship without making gestures, but by the giving of his spirit. People just liked being with Damon; he made them feel strong and hopeful and alive.
He wasn’t an expert at anything. He was a conspicuous consumer and there is a big difference. He wasn’t a snob, though he wanted the best because it seemed to him to work better than the less good. So he would spend his time with people who had something to say and with things that required more than superficial thinking. Nobody enjoyed people quite as much as Damon. Even at a young age he liked to listen. Perhaps he knew instinctively he was only going to be with us for a short while. But he sure had a great appetite for life, he rattled it as a baby might a favourite toy. Damon was completely alive every day of his life.
Five
Knee Bone Connected to the Thigh Bone.
With two healthy little boys, I guess the attempt at a third child was really a try for a girl. Had Damon been a girl there would have been no haemophilia and this story would never have been told. The gene with its missing Factor VIII (the stuff in our blood which causes it to clot), while carried by the female, cannot transmit to female children. Only males are born haemophiliacs.
Blood tests have shown that Benita carried the affected gene from birth and by some enormous, unexplained miracle it missed both Brett and Adam. In terms of lottery, the chances of this happening are around ten million to one; to have missed twice makes the odds almost impossible to contemplate. Had Brett or even Adam been born haemophiliacs, naturally that would have been the end of children for us. I don’t suppose one can speculate in such matters, but, in retrospect, the idea of not having Damon, who made such a rich contribution to our lives, is unthinkable.
Apart from the incident concerning the circumcision, Damon’s purple head episode was the first real warning that family life was going to change for us. When he began to crawl, the wheels immediately fell off our nice, calm, family life. We kissed Dr Spock and all his good middle-American advice goodbye forever and started to learn the new reality of living with a child who bleeds internally at the slightest knock.
All the hard corners on the furniture had to be rounded or padded and our tables and chairs carried so many bandaged corners most rooms looked like a casualty ward for accident-prone furniture. In fact, this precaution turned out to be more for our own peace of mind than as a protection for an active crawler and, later, toddler.
Unless your child has marks to show where they’ve been, you simply have no idea how often they bump into the world around them. Learning to walk is, to say the least, a hit-and-miss business for us all – more hit than miss.
Soon Damon’s chubby little body was covered with patches of purple, green, mottled brown and a peculiar muddy sort of red. In the twenty-four years of loving him we were never again to see him as a clean skin. He wore his “coat of many colours", the dozen or so large bruises in the process of ripening or fading, like a tramp wears a cast-off jacket. They never left him and almost every one of them commemorated a trip to hospital to receive a blood transfusion.
Throughout his life Damon was to have at least three blood transfusions a week and sometimes more. We would put him to bed at night not knowing how long it would be before we were wakened to his cry. Later, when he could walk, he would come to my bedside and tug on my arm, “Wake up, Daddy, I’ve got a bleed.”
I’d wake up to find him with his blue baby blanket, known as “Blanky” held against his cheek with his thumb in his mouth. “Hospital?” Damon would nod his head solemnly and I’d switch on the bedside light, scribble a note to Benita in case she woke up, then scratch around in a drawer for a T-shirt and jeans and rumble about in the bottom of the wardrobe for a pair of sandshoes. In nearly nine years of going to the hospital, mostly very late at night, I never put out any clothes in anticipation. Quite why not, I can’t say. Perhaps it was an African thing from my past. An old Zulu proverb says, “Never put the herdboy’s porridge out at night, for the demons also get hungry.” Perhaps, deep inside, I thought by leaving my clothes ready I was inviting a bleed, inviting the demons to visit. It’s stupid, I know, but very few things in this world are wrought by logic alone.
It was always my job to wake up at night and attend to Damon. I don’t know quite how this happened; I know that there were times that I resented it enormously. I’d be dog-tired after a hard day or I’d have arrived home a little worse for wear and having to wake up in response to Damon’s crying wasn’t easy. But the implication of Damon’s crying was that he had a bleed and this would inevitably end in his having to go to hospital. Benita was genuinely scared of driving in the night and has never done so. Somehow along the way we’d negotiated that she did the days and I did the nights. If I said that I didn’t often think that I’d gotten a raw deal, I’d be lying. I’d flop into bed exhausted only to be wakened two hours later by a Damon tug on the arm. Sometimes my head would be splitting and my mouth tasting like the inside of a parrot’s cage. But I had no choice; I often found this hard and felt sorry for myself.
Even so, there is something that happens to you when you have a critically ill child. You learn, or at least I did, to keep things in separate compartments. Every task is clearly defined and kept in its own box. Damon’s haemophilia called for an emotional neutrality. We decided it must never interfere with the opportunities available for Brett and Adam. They must not feel its impact on their lives. And so you couldn’t in the end allow yourself to react emotionally to the circumstances around you; his bleeds and the procedure they involved took precedence over everything else – but they must not be seen to be doing so. After a while you simply gave up trying to work out who did what at home, what was fair and what wasn’t. All the quarrelling and bickering and feeling sorry for yourself served no useful purpose. When you were in the Damon box, the haemophilia compartment, you simply got on with things and tried to create as little fuss as possible. There was an emotional price to pay for this; sometimes I appear very cold, precise and unfeeling. However, the discipline involved in conducting one’s life in this way is not good for the human soul.
Looking back, those long nights were my real time with Damon, the time a father should spend with his sons, but never really allows time for in everyday life. Damon and I grew up together in the dark hours when most of the world, and almost all of the kids in it, were asleep.
To distract him from his pain we would talk. From the beginning he was curious about almost everything and a good listener, whereas, at the drop of a hat, I tend to go on a bit. We were a good combination. I think, of all his pleasant ways, the things people seemed to like most about Damon was his genuine curiosity and concern and the fact that he was a world champion listener.
Even from an early age Damon listened with his eyes and his whole face and his entire body in such a single-minded way that it was as though the two of you were wrapped together in a silken cocoon. It was this rare ability to concentrate that made it so much easier for him to discover his inner mind and to use it to control his often very severe pain.
Bleeding for a haemophiliac is not a question of receiving a severe knock; though a severe knock can create a bad bleed, this is not always the case. A light tap on the elbow, such as a toddler might experience a hundred times a day, can set up a bad bleed, while a much harder fall, observed with dismay, might create little or no damage. Bleeds seemed to come from nowhere and were always internal. Small superficial bleeds, from a light cut or a scratch say, were seldom dangerous and quite easy to handle with an ice pack and a little pressure applied.
It sometimes seemed to us that bleeds were most magical things, appearing often for no reason, for Damon could have a bleed while confined to bed with a cold. Even when he was old enough to monitor his own physical actions, many of his bleeds seemed spontaneous and without explanation. This was very hard to live with; the cause and effect we all rely on instinctively wasn’t present. It was
such an unreasonable disease, such an unfair one on everyone, but most particularly on Damon who could plan nothing in his life with any certainty.
Before he could walk I would wake to him crying in his cot, mostly well after midnight, and I would go to him and feel around until I located the hot spot, the spot on his body which was warmer to the touch and therefore indicated that he had started to bleed internally.
I’d go to the phone and call Dr Gett, the young Chinese doctor who was Damon’s needle man. Gett, small and lightly built, was one of those doctors who make you want to forgive the medical profession for all its transgressions.
In a ghastly irony, the very thing he did for us so many times was to strike at his own family a few years later. His brother, also a doctor, was on a visit to New York to attend a medical convention. A mugger accosted him late at night at his hotel door and, it is thought, demanded his wallet. The young doctor must have resisted and was stabbed. He was found just inside the door of his hotel room the following morning, his cries for help having been ignored and, unable to reach the telephone, he bled to death.
When Dr Gett first cared for Damon he was still very young, about the same age as myself, and had just been elevated to assistant haematologist under Dr Robertson. It was Dr Gett’s job to undertake the medical procedure which, in those days, constituted a transfusion of Factor VIII.
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