On the way home in the car I asked her, "Do you remember how many years we’ve been married?" In some marriages this would be considered a dangerous question. In this case it was just a silly question. Vibeke knows to the day just how long we’ve lived together, or used a particular brand of toothpaste, and when it was that I last cooked dinner.

Vibeke had the answer on hand. "Just about 18 years!" A reply void of excessive detail so as not to give me the impression that she resented me not knowing.

"Hmm, you get less time than that for murder in most countries." I replied.

Vibeke and I don’t always share the same sense of humor. This was one of those occasions. Vibeke has grown used to the fact that I only have a rough idea how many years we’ve lived together, and subsequently how many years we’ve been married. It’s not that I don’t care, I just find it irrelevant.

What caused me to ask the question in the first place was that Joyce Graff had asked me to write a few words on the subject of being a VHL spouse. Therefore I had to do some research. So here are some facts: I have lived with Vibeke for about 20 years. I have been married to her for about 18 years. We have known that she has VHL for about 15 years. I too have lived with VHL for about 15 years.

Fifteen years ago we thought we might have children. We knew Vibeke’s mother died as a result of VHL. We knew nothing of genetics but, fortunately, had the presence of mind to meet with a geneticist. The geneticist told us what you already know. We were also told that Vibeke should be checked for symptoms immediately. That year Vibeke had her first operation.

The hospital chair

At the time I was a self-employed photographer. My business was new, and I had to work pretty hard in order to get customers. The day Vibeke had her first operation I went to work as usual. I tried to keep my mind off the operation and what it really meant. At around five in the afternoon I closed the studio and drove to the hospital.

In retrospect I shouldn’t have driven at all. I parked the car in the hospital car park and tried to release my safety belt. It jammed. I pulled furiously at it and it jammed even more. By the time I freed myself from the belt the car windows were completely fogged on the inside. I struggled out of the car clutching a plastic bag containing two bottles of wine, gifts for Vibeke from friends.

I made it onto the ward, looking a bit wild with the bottles making plenty of noise inside the bag -- but was stopped by a nurse. She was not about to let a sweaty, dishevelled alcoholic anywhere near her patients! Finally I calmed down and explained who I was and what I wanted. So instead of being escorted to the exit, I was shown into Vibeke’s room.

Whilst I may not be able to remember how many years we’ve been married, I remember far too much of what I saw in that hospital. The sights, smells and sounds have never escaped me – nor has the horror I felt when I saw Vibeke with all those tubes and bags and bottles. I sat down on a chair next to her bed -- and fainted.

This, then, is an article describing what it feels like to be me: a man married to a woman who has VHL. I agreed to write about my experiences because I felt that too few of us, whose loved ones have VHL, ever have the courage to ask for help. I have spent weeks writing and rewriting what you are now reading. It has been surprisingly difficult to convey my feelings without, I hope, giving the impression that I wallow in self-pity. The truth is, I have no self-pity. I have, however, suffered considerably through the years, and I expect many of you reading this will recognize this suffering as being similar to your own experience. I also know that very many of you will have experienced first the hospital chair, and then the hospital bed, as is the case with Vibeke.

I have drawn exclusively upon events in my life over the past few years and observations I have made of others. I have made an effort to be honest about myself, as well as an effort to respect the feelings of others.

After the operation

For a long time after my first visit to the hospital I was in a condition of shock. I have absolutely no recollection of how I got through those first days. Nor do I ever wish to remember. What I didn’t realise at the time was that this was only the beginning of months, maybe years, of despair and depression.

After a week or two Vibeke came home from hospital. She lay in bed for much of the day. I couldn’t touch her. I was afraid that anything I did would hurt her. When she got out of bed to go to the bathroom I stood there helpless. I think I could almost feel the pain. When the time came to have the stitches removed, a friend of hers, a nurse, came by and took them out. I was called into the bedroom to see the superficial result of the operation.

Two things crossed my mind. First I was relieved that the scar was not as frightening as I had imagined. Secondly I was heartbroken that Vibeke should have to go through life with a scar from one side of her stomach to the other. I could not imagine that life would ever be normal again.

I got it all wrong, of course. It has been years since I noticed the scarring at all. Honestly! Incidentally, we discovered that Elizabeth Arden’s "Eight Hour Cream" really helps scars to heal well. I remember now that it smells slightly of pepper. It tingles too, I know; I tried it.

I made other mistakes. The biggest mistake being the assumption that I had no right to suffer and to say to others that I was suffering. This is what I told myself: "I wasn’t the one with this disease. It wasn’t me who had just undergone major surgery, so what did I have to complain about?" I spoke to no one about my worries. It turned out to be a very serious mistake.

Being an Englishman, and therefore completely unable to confide in others about my personal problems, I became withdrawn and emotionally cold. I told nobody, and especially not Vibeke, how I felt. So what you are reading is in some way an historical document. This is the first time I have shared my thoughts and memories of that time, in any detail, with anyone.

Had I been able to talk to another person, things might have not gone so badly. Those first weeks I went to work and tried to look after Vibeke as best as I could. At weekends I would drive her to the country and take her for a walk. We actually called it "taking Vibeke for a walk." I probably needed the fresh air and exercise more than she did. I was suffering from severe stress. I felt that I was experiencing the world through a filter. I remember that even the birdsong sounded alien.

Eventually Vibeke became well enough to return to work. On the surface things appeared to be OK. I knew Vibeke was deeply troubled but I don’t recall us talking about it. I expect both of us were thinking about her mother’s death, and if Vibeke would also share the same fate. Within months things began to go very wrong. We were not very considerate towards each other. Panic describes it well enough. So we came close to the destruction of our marriage. We had a choice between marriage counseling and divorce.

We visit a psychologist

Before I go on, let me offer you some advice. Finding a psychologist is in itself something of a challenge. I think most of us would rather be seen leaving a strip club in the company of known criminals than be recognized at a psychologist’s clinic.

Vibeke and I visited a psychologist recommended by a business friend. Had I stopped for a moment to consider the state of my friend’s marriage, I might have chosen someone else. So here is my advice: If you and your partner ever decide to visit a psychologist in order to rescue your relationship, try to choose one who actually believes in marriage.

As I recall, one of the first things he asked about was the state of our finances – a not so subtle way of making sure we could afford him. Then he stated that he did not believe in repairing damaged relationships.

Looking back on it all, it was really funny. I have never discovered if it was just a ploy on his part, to pull us back together, or whether he was just hopeless at his job. The only thing I remember well is his statement that "normal people are boring." That was alright with me. I have been called a lot of things in the past, but I’ve never been accused of being boring.

Anyway the three of us sat there for forty-five minutes every week for a couple of months playing mind games with each other. Afterwards Vibeke and I would go shopping as if nothing had happened. In the end we grew tired of visiting him. We told him so, and he pronounced us healed. He had the good taste not to send his bill immediately.

As unintentionally amusing as they were, the visits to the psychologist only provided temporary relief. A dark cloud settled over my mind and remained there for a long time. I suppose any competent psychologist could have told me what I was wrong. On reflection, I think it was the same thing that I noticed Vibeke suffered from, a long time after her mother died. What I saw then was a person devoid of joy. She rarely smiled. She was distant. She merely functioned. And then one day, slowly, very slowly, she started living again.

We are different

One of the major differences between Vibeke and myself is her ability to see ahead. It was this that kept her alive and, I believe, saved her. She has always set goals for herself, and I have never known her not to reach them, sooner or later. To improve her ability to cope with physical stress, Vibeke started running. At first she ran or walked four kilometers. She also decided to study to improve her career choices. Today she runs ten to fifteen kilometers several times a week. Two years ago she got her MBA. Her business trips have taken her to every continent on earth, apart from Antarctica. Anyway, if you’ve seen one penguin, you’ve seen them all.

I am different. I have always been inclined to worry, often for no good reason. From the very first day, when we were told that Vibeke had to have surgery, I entered a state of despair. My wife was seriously ill. My business suffered from a combination of economic and mental depression. I was alone. On the surface I must have appeared normal. Yet inside I had absolutely no idea what to do, or where to get help.

I also experienced some astonishing, and perhaps predictable, behaviour from other people. Quite a few asked if there wasn’t a cure for VHL, so I had the laborious task of explaining that genes were genes and couldn’t be favourably altered with a bottle of medicine. Vibeke’s father tried to pretend that Vibeke couldn’t be ill because, as he said, she did not have the same personality as her mother. He was thinking of the effects of a brain tumour. I remember him drinking heavily when his wife died of VHL and we often got phone calls at night from bars. We would then have to go and pick him up and drive him home.

After a while he stopped getting drunk. He developed a latent interest in sailing and surprised us all when he took lessons in seamanship, bought a boat, and turned out to be an excellent sailor. He is currently learning how to use a computer at the age of 65. The most remarkable thing about him is that he now regularly visits one of our VHL association members, a woman who is confined to bed and dependent upon a respirator.

Another person I knew stopped me in a shop one day and said that as a photographer I shouldn’t be so "negative" and that I should be more "positive." He actually thought he was amusing. It’s true, it really happened. I think it was one of the few occasions in my life where I would have been justified in striking another person. As it was I was so shocked by what he said I stood there dumb struck.

Then came Vibeke’s second operation. At least I didn’t faint when I visited her in hospital that time.

Adapt

I am either a slow learner, or I have seldom found good teachers. Following Vibeke’s first operation, our near divorce and then her second operation, I seemed to spend years just existing. It took me quite some time to understand that I really could have some influence on my own life and that it was me who had to take the first step.

It also took me some time to be honest with myself about my abilities. I sold my business and spent a couple of years working for others and trying to pay off my debt to the bank. Fortunately for me things didn’t work out too well and I ended up unemployed. I know it sounds strange to use the word "fortunately" – and I certainly wasn’t happy about it at the time – but I can’t imagine how boring life would have been if everything had gone well.

At that time I had been working for twenty years and had never been without a job. Unless you have tried it you cannot believe the damage unemployment can do to your self-esteem. Following Vibeke’s illness, being unemployed was the second great crisis in my life. And there is something else. I think I was jealous of Vibeke. Despite having VHL, and the near break-up of our marriage, Vibeke was doing very well. She was studying, passing exams and pursuing her career. Yet when I looked at myself I saw a middle-aged, unemployed business failure. It took me quite some time to change my attitude about myself and my abilities.

I decided to study computer graphics. I had seen an interesting brochure advertising a course and decided to take a chance -- perhaps I had learnt something from Vibeke, after all? What I did was to take the first step towards taking control of my life – although I didn’t understand it at the time. In fact, I was in the process of learning the simple Darwinian law: Adapt or die.

Whilst I was studying, Vibeke was offered an exciting job in Copenhagen. At the time we were living way out in the county in another part of Denmark. We sold our house and made enough profit on it to pay off my bank debts. Eight long months later I had a job. It sounds so easy now, but in reality I had just come through some of the worst years of my life. I had to do it on my own, too.

Choose Life

I wonder how other cultures react to death and disease? The culture that I have been brought up in is quite simply hopeless at dealing with it. These two phenomena are, apart from sex and birth, the most common occurrences in life -- and yet we react as if they were entirely alien to us. I can only recall one occasion when I was asked how I felt. I replied, as far as I remember, with a lie.

During recent years I have become aware of another fact of life, which has greatly influenced me: I too could die young. I know it sounds like a platitude, but life is far too short to waste. So consider this instead:

Five men I know are dead. They were all relatively young men, in my age group. The printer who had his office next to my studio died of cancer. Two colleagues, both photographers, are dead. One died from cancer, the other from a brain hemorrhage. Another man I knew, from Iran, died of a heart attack. I remember him telling me that, all things considered, he preferred being beaten by the Shah’s men, to being tortured by the Ayatollah’s men. This kind man, with a dark and wonderful sense of humor, just dropped dead one day. Recently a graphic designer I had worked with some years ago, died one evening, also from a heart attack. He is buried in a country churchyard overlooking the fields, hills and valleys that he loved so much. Yet I am still alive and so is Vibeke.

I am not one of those insufferable optimists who go around telling others to "cheer up and look on the bright side." I certainly don’t try to fool myself with artificial optimism any more, and I wouldn’t recommend it as a solution to anyone else. What I do recommend is that when you find yourself sitting in the hospital chair you should say "I feel dreadful, and I make no apologies for saying so!" And if your marriage is suffering as a result of the unbearable cruelty of fate, then say so! Do something about it! Things won’t improve overnight – they never do – but you will have taken one step in the right direction. You will start living again. It is also very likely that you will avoid the mistakes that I made, which caused me to waste so many years of my life with bitterness and depression.

Today Vibeke and I live well together. We both enjoy interesting careers and we are able to support each other, financially as well as emotionally. Sure, we fight on occasion – who doesn’t? We also plan for the future, sometimes years ahead – who doesn’t? We are also well aware that one day Vibeke may have another operation – or maybe this time it will be me who becomes ill. Maybe one of us will even die. Who doesn’t?

As printed in the VHL Family Forum 8:2, June 2000. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

mystory