It was the overgrown hedges that finally brought all this out in the open with my wife. My feeble excuses for not cutting the long hedge surrounding our garden became the flashpoint for a tremendous row. It took us by surprise and, I think, scared us both. We had never been the type of couple to have rows. I see now that we were both afraid of what might be said, and that we would perhaps not be able to repair any damage done in the passion of a fight. When she accused me of having been self-absorbed and aloof for years; said that I had been living an emotionally separate life from her and the children, I hit back hard. I told her that she had been cold and unsupportive, that she had failed to notice the terrible affliction I had struggled to live with for so long. None of what I said was true of course. It is the nature of a fight with someone you love that you want to hurt them as much as possible only to regret it immediately or very soon afterwards. I knew that she had been more than aware that something had troubled me for a long time; knew that she had tried to gently prise out of me what was wrong; I had caught her watching me sometimes with a look of deep concern on her face. But I put all this to the back of my angry, confused mind and hurled criticism at her. And she came back at me again just as hard, calling me remote, unapproachable, obsessive and controlling. She screamed at me that she sometimes felt so alone in our marriage that if we hadn’t had the children, she would have considered an affair, just to feel important to someone. That shook me. I couldn’t believe she would be so disloyal and insensitive when for years I had lived with the agony of knowing my leg was inhabited by that disgusting thing. What kind of marriage was it if she was thinking of being unfaithful to me while I was in such despair? A triangular one, she told me sarcastically; one that included her, me and my obsession.
Her cruel and incorrect diagnosis was the breaking point for me in that heated and unfamiliar row. I told her then, threw the whole awful reality at her. I wanted to shock her, make her see how selfish and unfeeling she had been. Wanted to open her eyes to the pain and torment I had lived with and that she had been so oblivious to. And as she stood there listening, her face became fixed in a hostile stare. She showed me no sympathy even when I spelled it out for her – that I had an alien organism living in part of my left leg. I told her that for years, even before we had met, I had known the limb was not part of me and that I had no control over it – the opposite in fact – that it used my blood for its own foul needs; that it thrived on the nutrition I unwillingly provided; and that it benefited from the warmth and protection of my own skin and the clothes I wore. I wanted to make her understand that it was the centre of my life, overshadowing everything I tried to do or be. She simply shook her head at all this, her face still filled with anger. She used that word again – obsession; said that I had always had an unhealthy interest in the workings of my own body. It came out that she had initially found it amusing and thought of me as a mildly neurotic hypochondriac, but over the years had grown impatient with what she called my obsessive self-inspection and my huge self-interest, which she said had been at the cost of herself and the family. She laughed at me then; said the story about my leg was an absurd attempt to gain further attention and it was about time I gave up my unpalatable self-absorption for the sake of the children. I knew there was no way back from that – we had indeed said things that could not be unsaid or put right. Her complete lack of compassion for my condition left me in no doubt that the marriage was over.
I moved out, found myself a decent flat and made arrangements to support the children. There was no question of them going short financially and I hope that eventually they will be able to make their own decisions about contact with me. I know that while they are young, their mother will hold a strong influence over their understanding of why I have left, and I am fairly sure that she would not have told them the truth. When they are older, I shall explain everything to them. Indeed by that time, I will be able to show them. My body will be complete again and they will be able to get to know their father as he should be, rather than as the freak he is now. I feel that my wife’s decision to withhold the truth from them is a wise one – despite our separation and differences, she is an excellent mother. I believe she has kept the truth from them to protect them rather than to hurt me. She probably feels that they would be too distressed to learn that I have an alien organism in my leg. They will cope better when they can be told the happy ending of the story. When they are old enough to see for themselves that what once resided inside their poor father’s leg has now been amputated and burned in a hospital incinerator. That will, I feel sure, bring them comfort and in some way will compensate for this period of separation. They will be able to see for themselves that I am not the madman their mother accused me of being.
Once away from my family and living alone, I was able to take the next step and begin the long process to rid myself of the limb. I am fortunate to be able to fund the surgery as well as the compulsory preparation period. What I had not taken into account however, was the impact of these decisions on my work. Early on in the programme, they made it clear that commitment was not only necessary to obtain approval for surgery; they also used it as an indication of the seriousness of each candidate’s need to go ahead. The lecture they gave prior to enrolment included a severe warning that no part of the programme could be missed. Failure to attend would result in instant exclusion. With a substantial waiting list, they had to make sure that those undertaking the programme were fully committed and available for every aspect of the preparation. I remember the muffled sounds, at that point, of several people leaving as quietly as they could. I have since learned that some of those would have been the strange, probably unhinged, types that manage to get past the security to satisfy their own morbid curiosity about this dreadful affliction. But some would also have been genuine cases who knew they were not able to dedicate themselves fully because of other commitments.
I had assumed that my employer would be sympathetic, and I agreed to attend every session at whatever time of day and at any location. It came as an awful shock to find out, very quickly, that my employer was far from sympathetic to me needing so much time off. Even when I explained the long-term benefits to them of me having the limb removed – how I would be a more contented and therefore more productive part of the workforce – it was plain they were offering no space for negotiation. I considered using annual leave but it would still involve me taking several additional weeks off work. I had no choice other than to leave my well paid job. That is not strictly true – I had the choice of staying in my job and remaining attached to the disgusting limb, or I had the choice of giving the programme every ounce of my commitment and having the limb removed forever. I could not miss this opportunity, and resigned from my job three weeks after leaving my wife. Before I actually left, I wanted to show them that they were making a mistake; wanted to show them how serious my condition was. I started using a wheelchair at work. I took it with me in the car every day and set it up in the reception area. Then I would heave it backwards up the stairs to the second floor – I was determined not to use the lift as I was trying to maintain a good level of fitness – and use it around the office for most of the day. I was very upset by the management’s response to this, and can only see it as a lack of awareness on their part. The formal warning was a deciding factor for me that it was time to go, and I did not work out my full notice. I no longer wanted to be part of a company that regarded my need for a wheelchair as ‘unnecessary and obstructive’. They even insisted that I saw an occupational health doctor because they had concerns about my mental state and how it might be causing my ‘bizarre behaviour’. I refused of course.
That is a long way behind me now – once you start something like this, everything else becomes secondary. I see now that the job is of little significance and that I will be able to find a much more fulfilling career once I am my true self. The limb has held me back in more ways than I was aware. Those around me at work, and people in general have seen me as a two-legged, u
pright, walking man, when all the time that has been a false version of who I really am. It is hardly surprising that I was met with negative reactions when I first took to using the wheelchair – all anyone could see was what they took to be a healthy man choosing not to use his two legs. The reality of course is much more complex. They tell you on the programme to live with your missing body part before the surgery – to behave as if it is no longer exists. I feel sure that others have no idea how difficult this is. It is not just about finding out how it might feel but also to see if you can adapt and manage everyday life. It is the hardest test, I can assure you. Having loathed and despised the limb since I was in my early twenties, when I first knew what lived inside it, I now had to admit how much I depended on it, had even been grateful for it at times. This has been a sickening realisation and one that I have found extremely painful. Who wishes to learn that the cancer within them has its usefulness? Who wants to know about themselves that they have been reliant upon a disgusting organism for more than half their life? It is only once you can face this that you are truly ready to go forward. It is rather like giving up breathing whilst holding the unshakeable knowledge that it keeps you alive.
I have progressed from the ordinary wheelchair to an electric one. I use it the whole time now and will not allow myself to cheat by making use of the rotten thing inside my leg. I behave as if the limb does not exist at all, as I hope will soon be the case. The doctors are pleased with my achievement with this and have informed me that I will be going through to the next phase. The relief is almost too much to bear, especially because another two candidates have gone. It makes you realise how suddenly hope could be destroyed. No-one talks about it; there is no mention of how the group has shrunk. The only thing that matters to each of the remaining three of us is that we get through to the surgeon with the life-saving knife. I have grave misgivings about the other two, and wonder if they will make it to the end. I have not expressed these thoughts to any of the doctors because I am astute enough to see that it could be misinterpreted. I will not give them cause to question my judgement, but in the privacy of my innermost thoughts I do not agree that either of my remaining colleagues on this select programme is in the same need of surgery as I am.
One of them, a white-haired, distinguished-looking man in his mid-sixties, has the organism living in his hand. I can see how this is blighting his life, can see the deep distress it causes him. He holds the hand as far away from his body as possible, which must make normal life very difficult, and doubtless brings the ridicule of others who are ignorant of this condition. But while I am sorry for his problems, I feel strongly that he has not suffered as I have; he only became aware of the alien under his skin after reading an obscure article, hidden away in a tiny column in a newspaper. He likes to use the term Dysmorphia as frequently as possible as if this gives him added credence, while I care little for fancy labels or scientific-sounding descriptions. I know that the tests and interviews are meant to filter out anyone who ‘isn’t all there’, to use the common description, but I cannot help questioning their decision to let this man through. When I am at my lowest, I even wonder if it could be related to his vast wealth. You can tell by looking at the man that he has plenty of money. We all have the means to fund this, of course, or would not have been accepted in the first place. But this type of surgery is outside the boundaries of ethical committees and the like. Although they are required to put candidates through these stringent tests for the sake of appearances to the outside world, it is pretty much up to the men with the knives to decide who they will treat. I have to trust that they will spot this man as someone who has jumped on the bandwagon; someone who, for reasons of his own, and possibly beyond his control, has focussed on a physical part of his body to house the illness residing in his mind.
It happens in cosmetic surgery as well – the classic case is the woman with a large, hooked nose who believes that the answer to all her problems lies in having the protuberance hacked to half its size. It is the duty of the surgeon to tell her otherwise of course, but how many of them are going to turn down the easy earnings from such disturbed people? Who can blame them, actually? After all, if someone offers you a large sum of money to do something you can fit into your lunch break, why would you turn it down? I must still hope though, that the white-haired man’s great wealth will not sway the judgement of the doctors and allow them to overlook his obvious mental ill-health. If I get through as far as having the surgery, and I cannot contemplate anything other than that now, then I shall not care whether they remove his hand or not. However, if he is selected over me, I will kick up a stink that the whole world will smell.
The other chap on the programme is similar to me. He has had his affliction since his late teens and tried several times to get rid of it himself. Part of me wonders if that is just to show how desperate he is, but largely I think he is genuine. He has said the same things that I feel; about how his body part doesn’t belong to him; how when he sees it in the morning, he hates the sight of it and has to go through the pain of knowing it is still attached to him all over again; and how he often falls into a black depression at the thought of what is living inside him, knowing that he will only feel whole and truly himself once it is removed. The fact that it is his middle finger gives me some cause to question his level of need though. I look at the horrible, scarred stump as he extends his arm its full length and stares at the finger as though it were a poisonous insect, and I think how much easier it has been for him to carry on his life than it has for me. My leg has been affected from the foot, right up to just above the knee for all these years, yet he has only had to live with a single finger that does not belong to him. In our group sessions, he puts his case well – saying that the physical size of the area is irrelevant to the impact it has on one’s life. I can see this but still argue strongly that a finger and a leg must be somehow graded in importance. I do respect his ultimate decision not to hack the thing off himself. If we are to be taken seriously by the wider community, and not simply regarded as interesting research cases by the medical profession, we need to demand proper treatment. Otherwise, we run the risk of being completely misunderstood, treated as outcasts and condemned as extreme attention seekers.
I do not want to end up being part of some television documentary where an incredulous, bemused narrator conveys his personal feelings to the viewers. If there happened to be any serious film-makers wanting to explore this condition in a dignified and informative way, I would see it as my duty to take part. Those of us who have suffered with body parts that do not belong to us; those despised arms, the feet, the hands and fingers, penises, knees, breasts, testicles and, of course, legs; we can do so much to remove the profound ignorance about this condition. Although we are rare, I hear from the doctors that we are growing in number. They are in the planning stages to build two new clinics already; such is the demand for body part removal. I have seen the brochures, left for us in our rooms, and it looks like a state-of-the-art concept. The sort of place where you would feel you were receiving the very best treatment. One of the doctors has assured me that should I have any future problems, I would be welcome to apply for help at a new clinic. Although I plan no repeat of this ordeal, and look forward to starting my new life after the surgery, it is good to know that such high quality care would be available to me. It looks like it would cost a fortune of course, but the only way to look at this type of treatment is as an investment in one’s future. The same doctor also informed me about some interest they’ve had from an independent film-maker. He wants to do some work on the current programme apparently, and tie this in with plans for the new clinics. Obviously, the doctors all want the publicity this will bring for the new venture. I said I would think about being involved. I’m wary about exploitation. Not just of myself, but the others on the programme. How, for instance, will they portray the chap with the finger?
It looks as if I am through to the final stage. I will not allow myself to trust this com
pletely, of course, until I am actually being wheeled down to the operating theatre, but the latest news is highly encouraging. It seems likely that the two other men will also be going through, but I have ceased to be concerned about their authenticity or suitability. Now I feel confident that I am approaching amputation, I can concentrate fully on losing this repulsive limb. I live entirely as if it is already gone, with the thing strapped up behind my thigh, and am fully wheelchair dependent, but I will never know the contentment of really losing it, of course, until the bone that holds it to me has been sawn through. I await that moment like a child anticipating Christmas morning. Although I will not be conscious, I have paid to have a video of my surgery – the doctors recommend this to prevent what they describe as ‘phantom limb syndrome.’ Some candidates, apparently, are unable to accept the evidence of their eyes, following surgery, and insist that the alien body part is still present. I cannot imagine this happening to me. However I jumped at the offer of a video film, even though they are charging an awful lot for it, because I have such an insatiable interest in every stage of the surgery – if it were possible I would be awake throughout the whole thing.
Grave Misgivings Page 15