April Fool's Day

by Bryce Courtenay

  “Dad, I’ve read most of the books we’re about to discover as our introduction to literature!” He pronounced the words, discover and literature, with a touch of sarcasm. “Some of them I’d read by the time I was fourteen. I don’t need to parse them or write an essay about the neurosis and deeply hidden motive of the main protagonist. All that does is to take away the enjoyment of the original reading.” He paused and looked up at me. “Except for the set works we’ve been given, I’ve hardly read a book since I’ve been at uni.”

  I looked at him, my right eyebrow slightly arched. “Perhaps you’ve been otherwise occupied?”

  Damon understood immediately. “Dad, that’s not fair! Celeste hasn’t stopped me going to uni.”

  “Nevertheless, if you fail this year you’re going to have to repeat and I’ll see to it that you attend lectures, even if your mother has to drive you to them herself or you have to go on crutches or in a wheelchair.” I moved a step forward so that I was directly above him. “I hope you understand what I’m saying?”

  Damon was silent for a moment and then, without looking up at me, said quietly, “I’ve missed too many lectures. I don’t have sufficient credits to pass now, even if I tried my hardest.”

  I rubbed my palms on the back of my pants. This was the capitulation I was seeking. Damon was back under my authority and now I spoke more gently. “Well, try anyway. That way it will be that much easier when you repeat next year.” I turned to leave the room, knowing that he was upset and would prefer me to leave.

  “Next year? Next year I could be dead.” He said it softly, though loud enough for me to hear. His words stabbed deep, cutting through all those things within me which were securely knotted and lashed down so that they would never be allowed to emerge. It was as though all the years of frustration and hurt and humiliation had become focused by his self-pity. I turned to face him, my teeth clenched. “Don’t let me ever. And I mean ever! Don’t let me ever hear you talk like that!” I’d reached his side and now stood over him. “You bloody coward!” I screamed, spraying spittle down onto his face.

  As I spat the words out, I saw his surprise and obvious confusion and realised immediately that he’d made the remark as any frustrated child might have done, not meaning it to be taken seriously, but simply as an immature desire to have the last word. It was a remark which had nothing whatsoever to do with his HIV status.

  I brought my hands up to my face to cover my distress. “Jesus, Damon, I’m sorry, I’m terribly, terribly sorry!”

  He looked up and the hurt expression left his rather nice face. He smiled up at me, then gave a little laugh, “That’s okay, Dad. I’m going to beat it anyway. You’ll see, it won’t turn into full-blown AIDS. I promise.”

  Fifteen

  Damon

  From a paper given by Damon at a conference held at the University of New South Wales on 23 November 1989. The title of the conference was “Children and Adolescents with HIV/AIDS". It was conducted under the auspices of the Department of Child and Adult Psychiatry at the Prince of Wales Hospital. Damon had just turned twenty-three.

  Haemophilia is a very difficult disease to live with. It is painful, it is debilitating and it is devious. It strikes when you least expect it. Most people with haemophilia would agree that very few of their bleeding episodes, or “bleeds", are directly related to an actual incident such as a sprain or a fall. Rather, they most often seem to occur spontaneously, for no apparent reason.

  This makes haemophilia a very frustrating disease to live with, as there seems almost no way to prevent bleeds. Of course one doesn’t play rugby or get into fights, but even so, leading a normal, everyday existence can bring on the most massive and dreadfully painful bleeds.

  However, there was always one thing about haemophilia, at least in my lifetime, that made it bearable. And that, of course, is that there is effective and relatively fast-acting treatment available. In my lifetime, the treatment of a bleed has advanced from the frozen plasma known as cryoprecipitate to concentrated Factor VIII which comes in powder form. Factor VIII is, of course, the clotting ingredient in our blood. It has reduced the size of treatment from a 250 ml transfusion to about a 60 ml transfusion. The concentrate is also easy to store and transport and much more simple to administer.

  So in most cases the worst a bleed would mean was a day or two off your feet or you’d be without the use of an arm or an elbow, a shoulder, knee or ankle, or sometimes all of them.

  Of course, the most difficult part of haemophilia is not the actual time spent in pain through a bleed, but the subsequent arthritic damage caused to the joints. It is the latter which causes most severe haemophiliacs to limp or to lose the full range of movement in one or several joints. It also means that for many, by the time they are fourteen or fifteen, they are in constant pain to a greater or lesser degree.

  Going through puberty with a body that always did look a little different did, of course, have its problems. Girls are naturally curious creatures and invariably there would come a time when you would have to explain why you limped or why you couldn’t straighten your arm. Then would come the inevitable question, “Does that mean if you scratch yourself you will bleed to death?” But a lifetime of learning how to explain your illness meant that these questions were explained easily enough and you were accepted as just another guy.

  How things have changed.

  For the first time haemophilia has become something to hide.

  Because of constant media attention, many people are aware that the haemophilia community has been severely affected by the HIV virus. And because of the nature of the sickness and the immediate ignorance and the fear it inspires in people, there is a new kind of shame for haemophiliacs to endure. You don’t want people to know you have AIDS because you fear rejection. Therefore, you don’t want people to know you have haemophilia. So the easiest thing to do is to lie and to tell people you have something else, like chronic arthritis. Now that’s fine for people who are new acquaintances, but for all those people who already know you and know about haemophilia, this approach is of no use. So you tell them when they ask – and they do ask – that you were one of the lucky ones, that somehow you were spared. My heart still misses a beat when I tell that lie.

  That, of course, is only to those you don’t want to know. There are friends in whom you have enough confidence to tell the truth. It becomes virtually impossible not to anyway, if and when you actually begin to get ill. But telling friends and having them support you is one of the most vital ways of coping with this threat.

  The point I am making is that for the haemophiliac it has never been difficult to discuss his disease. After all, it is very like having diabetes, nothing to be ashamed of. But suddenly we must make a choice among all our friends and decide which of them can be trusted with this new information. And it is a very difficult choice to make. Get it wrong and you have to face ignorance and idiocy. But get it right and you create an entire network of support that is vital to coping with a personal catastrophe.

  The implications of living with haemophilia and HIV at the same time are immense. Without trying to sound too self-pitying, it is the haemophiliacs who have suffered more than any other group affected by AIDS. This is simply because we have always had to struggle to stay well anyway, and are usually in a constant state of pain, or at the least, discomfort. Then there are the days when you can’t walk or the times when it is impossible to use one of your arms. Combine this with the added threat of AIDS and you have a life which, at times, is very difficult to live.

  It seems that one of the most common problems caused by AIDS is not in itself a life-threatening condition, it is simply that you have this general feeling of enormous fatigue, a lack of energy. It is very important that the haemophiliac takes regular exercise, the best form of which is swimming. This is to ensure that as much mobility and flexibility as possible is retained against the crippling effects of joint damage. The will to exercise becomes greatly reduced when energy lev
els are depleted by HIV. In an indirect way, the presence of HIV in fact makes it a great deal harder to stay on top of the damage caused by the haemophilia itself.

  The next problem is the treatment itself. For some, AZT (Azidiothymidine) is absolutely horrible stuff! Its side effects can be absolutely ghastly. For the past two years, since I have been on AZT, I have been chronically anaemic. In addition to the lack of energy caused by the virus, AZT also takes its toll. There are days when even to get out of bed and face a new day becomes a tremendous struggle.

  The anaemia caused by AZT is treatable with a pure blood transfusion, and let me tell you it is like cocaine must be. Suddenly you have energy again, life becomes far more bearable, but soon the haemoglobin drops again and you are left feeling fatigued and frustrated. There is also, of course, a limit to the frequency of whole blood transfusions. Iron builds up in your system if they are too frequent, which is something to be avoided. So the result is at least half of your life spent with little or no strength.

  Apart from the anaemia, AZT can cause constant nausea in some people. I am one of them. Anti-nausea drugs do have some effect but are far from perfect. It has gotten to the stage where AZT makes me feel so awful that I take it only every second month. The improvement in the way I actually feel is so great that I am not looking forward to starting back on this toxic substance. However, I am grateful to AZT. It seems it has kept me relatively well, although I guess there is a chance I might have stayed well without it.

  Of course, haemophiliacs are not the only ones who have to put up with the imperfections of AZT; however, combined with the pain of joint damage, there are times when, quite frankly, you feel like shit.

  To be quite honest, the concept of dying at the age of twenty-two, or younger, is (virtually) impossible to accept. Certainly you are aware of the facts, of the statistics, but the truth of the matter is – and I have noticed this especially among young people with haemophilia – that deep down you believe that you can escape. You can defy the odds and be the exception to the rule.

  Now the medical evidence may indicate otherwise, and doctors may tell you that you are living on borrowed time. But, with no disrespect intended to those of you from the medical community here today, from my lifelong experience, I can firmly state that we would all be in a lot of trouble if we started believing everything doctors had to say.

  I for one do not intend to die from this virus. I have developed an attitude which treats this disease as a chronic condition rather than a terminal one. Perhaps this is because I am accustomed to the concept of a chronic illness and have adopted this attitude as a defence mechanism. But I am firmly convinced that if the mind is strong in its defences against something as potent as AIDS then one’s chances of surviving are far greater.

  I said a moment ago that I had noticed that most people with haemophilia were sure that they could defeat this disease or, if not entirely defeat it, at least keep it at bay. This attitude, from my experience in hospital, is less common in gay people. I think this is probably because the concept of protracted illness is less alien to people with haemophilia. They have had to cope with severe disease all their lives and so have less trouble adjusting to the facts of this new condition, AIDS.

  Illness is something to which we have to adjust. It is the success of such adjustment which is the measure of how well we cope with disease. If one person finds that adjustment easier to make than another, is it not logical to suppose that that person may find the actual disease less difficult to cope with?

  The ability to adjust one’s lifestyle and modes of behaviour successfully to take into account that one’s body is fighting an invader is the ability to self-cure. I am not talking about a spiritual approach to illness, or even a strictly psychological one. I am talking about a total attitude, a completely new way of looking at things.

  It is not in any way a negative concept. To come to terms with reality and adapt yourself in the most effective way, utilising all that you know and all that you are learning, is the key to living the kind of life you want.

  At least, it is the kind of life I want and that is a long and full one.

  Thank you.

  Sixteen

  Mothra the Hoon, Sam the Drip and Roger the Lodger.

  Damon spent Christmas, 1985, with us and most of January, 1986, but by the time the university term was about to begin he’d moved in with Celeste and two other students sharing a small house in Pyrmont, an inner city suburb close to Sydney University. Celeste had enrolled to do architecture and I felt confident that, with both of them at university, Damon might knuckle down and start working and so I was persuaded that they should be together again. I admit that this must sound arrogant and dominating. In strictly legal terms, Damon was free to do as he wished. But I don’t think Damon, or even Brett or Adam, would have considered leaving home without our permission to do so.

  When Damon asked permission to live away from home again his logic as usual was compelling: he didn’t speak of living with Celeste, only that the long periods of travel by bus to university would exhaust him and, even if I gave him a car as had been suggested (by him), there would be days when bleeds into his ankles would make it impossible to drive. It had become apparent to Benita and me that, despite his return home, he had no intention of relinquishing Celeste, nor she him. In the arrogant and presumptuous way parents allow themselves to make such decisions, we’d slowly become convinced that they were genuinely in love and seemed to need each other in a special sort of way.

  It was as though they were less young lovers and more a practised family of two people and a couple of cats named Sam and Mothra. Sam was a loser. His nose dripped constantly, he sneezed a lot, he looked miserable and got in the way so that he was tripped over a lot. Mothra was evil, destined to be a feline hoon who ran the local alleyways with an iron claw. At six months, he was the local top cat and already had the scars to show for it. Both had generations of Kings Cross alley cat coursing through their veins and were genetically criminal archetypes.

  Both had started as abandoned kittens and were the umpteenth litter of an old Maison le Guessly cat named Pandora. Celeste, in a fair-minded gesture, had taken Sam the runt and Mothra the spunk and carted them in a strong bag to the cottage in Woollahra. They’d immediately rewarded her by starting a flea colony which bred in the fertile dust of the ancient front room carpet into Genghis Khan-like hordes that invaded everything and seemed to be resistant to every known form of chemical warfare.

  When the stay at the cottage ended Celeste took Mothra and Sam back with her to Maison le Guessly where Mothra immediately took off for the bright lights of the Cross to aggregate his bad habits and learn stand-over tactics. He only ever returned home to be sewn up.

  On the other hand Sam’s hay fever and dripping nose never allowed him to go further than a patch of sun on the pavement outside Maison le Guessly where he became the neighbourhood chronically ill cat, a sort of wheezing and sneezing cat bum, faking old age by walking on stiff legs, useless before he’d even fully grown up.

  Celeste seldom spoke of her family or of her home life and, apart from learning that she didn’t have a father and lived with her mother and grandmother, we knew little else about her. We simply presumed, with her Kambala school background, that she came from a traditional sort of home and that her reluctance to talk about her mother was just another part of her natural reserve.

  She had become less shy in our company as she spent more time with Damon in our home and we discovered in her a young woman of intelligence, wit and charm, who was fully aware of what she was embarking upon with Damon. On the subject of sexual congress between the two of them she became stubborn. She didn’t deny that they acted no differently from any young couple living together. “We take all the necessary precautions, Bryce. It’s my life, my decision,” she said to me once and it was apparent that she felt strongly about her rights in the matter and that, in her own quiet way, she was telling me to mind my own business.

>   However, in other things he began to confide in us and we soon realised that she was pretty miserable at home and guessed that she might have good cause to be. We were becoming less certain that she and Damon would not resume their relationship, but it was only after they were together again in a place of their own that I understood fully the special kind of hell she’d gone through on her return to Maison le Guessly from the cottage. I recall her talking about the incident:

  “Leaving the cottage was just…it was awful, it was really awful! I didn’t know where I was going to go. Suddenly the six months with Damon was ended. It was like a fairy tale, this little house we had together, and suddenly I had to go back to Maison le Guessly, to the Cross, to my mother and the mess.

  “It was hugely awful. I returned to my childhood room. Nothing had changed, around me everything was dirty and smelly. Mum was just ecstatic, I was back home and as far as she was concerned I was going to stay! To stay forever and never go away again.”

  I asked Celeste how she reconciled her mother’s seeming disinterest in her during her childhood and adolescence with what now appeared to be fierce possessiveness.

  “Because she saw my leaving as being a personal hurt to her. A personal fight against her as a person. She saw my leaving as being unfilial; she possessed me, I belonged to her like a chair or picture on the wall or anything else in the house. The house was hers and I was a part of the house and a part of her; she’d created a family to be her possession, they were to be with her until she died.” She paused, thinking for a moment. “It’s hard to explain. She couldn’t waste anything in the house. We, my sister, brother and myself, were like a nest of mice in a corner of the kitchen – they belonged utterly to her regardless of whether she liked them or not.”