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Personal Experience

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The department of love

Anonymous
Language: English
Country: Italy
Typology: patients and relatives
Text:
May 27, 2011 is a date I will remember for the rest of my life. That day I went to the emergency department more for the sake of the "you never know" than for a real inauspicious thought, due to just a series of cramps in the stomach that I was diagnosed with as a colic, imagining I would just lose a little bit of time in the waiting room. Instead, I was soon thrown into a maelstrom that increased exponentially: medical records, more or less invasive examinations and new forms of pain I had never had and that continuously hit me, while the look of the hospital staff betrayed their words of comfort, implying how serious it was. Over a period of a fortnight, I underwent two interventions, a pharmacological coma of a few days and the resection of almost all the intestine. It was really difficult to accept my new condition, especially in hospital, where I spent more than four months. Before this event (sorry for the euphemism, I have not yet decided how to call it), I was an entrepreneur: I managed a firm, I checked budgets, I made meetings with consultants, accountants, lawyers… twelve or fourteen hours a day, I had gone on my last holiday six years before, the last time I had been on sick leave was in 1990. Then, all of a sudden, I woke up in bed, with an ileostomy: I found it almost impossible to pour fluids leaving from it into the special bag, and I ended up getting dirty several times a day. I was fed through CVC on amino acid solution and glucose solution in lipid emulsion, to replace the food that was ejected almost with the same conformation as when it was ingested, whereas liquids are totally absent. At first, I gave up all my old interests, but it had nothing to do with depression, indeed, I considered myself lucky to be still alive; simply, I had decided that it was the life that I used to lead, with stress almost beyond the limits of human endurance, that had brought me up to the threshold of the abyss. It took me more than a month to have a renewed interest in what I used to do before, from reading to writing, thanks to the internet, that has given me a bit of company during the night in hospital, when I used to sleep for a few minutes but then I suddenly woke up to check the bag to limit the damage… The desire for normality began to creep into my life when they closed the ostomy. I imagined this way I would be more autonomous, but it was not the case, since the stretch of reconnected colon refused to begin to assimilate liquids again. This brought me back to the current state, with sixteen hours a day on a drip and the inability to move from home without facing periods of at least twenty-four hours of fasting, in order to avoid needing the bathroom while I am in my car. Unfortunately, this is in contrast with the request from dieticians to be regularly nourished, given my low assimilation of food. I had to retire from work, I could only start working again with other timings, which would not guarantee the continuity necessary for any company. Days now pass very slowly, I do those house chores I can fulfil to help my partner, who has had to find a job, given my current inability to participate in the family costs. The sentiment that is growing deep inside me is the feeling of futility: when I feel good, I would like to try and go back to the company, then I looked a little more ahead of my arm and I see the drip: it brings me back to reality… reading, writing, and using the computer are pleasures that I can still enjoy, but it is no longer as before: doing a job as your duty makes it legitimate to spend time on recreational activities, but the opposite brings me the strange feeling of committing something ethically wrong, something that is not suitable to the idea of western productivity. Only a negative framework may result from all of this, but this is not the case, or at least it is not only like that. The disease has worked as stepmother but also as mother: I have learned values that did not belong to me before and that only nurses can guess, given the prolonged contact with their patient. Perhaps the most striking example is the dignity, whose meaning has curiously changed for me. In the beginning, the loss of this quality was something obvious for me: you are in bed, almost naked with ostomy products at sight and at the mercy of every type of examination that the doctor thinks can help to find a solution, you need nurses both to urinate and empty the bag containing your faeces. Once you overcome this obstacle, you realize that your mind exists thanks to the human body that envelops it: as a symphony, it harmonizes a set of instruments that are so different from one another that they are more likely to malfunction than the opposite; healthy people, capable of thinking, are able to feed themselves, drink, breathe, and expel what is introduced. Then, dignity takes on another meaning, at such a high a level that it cannot be distinguished from the suffering and it can hardly be expressed by words. This consideration came out one night when, as usual, my friends were keeping me company through my Facebook chat. In order to make them understand what I felt, I posted a song by Gaber, whose topic is hospitalization: It is the innocent frets of a living room it is the little nuisances, the somewhat petty attitudes that make man really ugly. But in hospital where the loss is total where the disgust you must overcome it is that of helping a man to vomit. Where there is no longer inhibition from vomiting to sweat, to defecation and then you skip that floor if you can make it and you enter another department of love. Because of the difficulty to grasp this state of mind if you are not in a hospital bed, it was pointed out that the love the song deals with is around me and given me by my friends who have been really close to me and that, thanks to this, I could be more serene and face the difficulties listed in the song with my roommates. But the dimension of the love Gaber refers to is quite another thing. It is having patience and will to continue to speak with those around you who are shouting because they have Alzheimer's, until you calm them down; it is teaching a person you do not know how to use the "pan" while lying down in bed in a room with other patients; it is smiling when some friends have still the courage to tell you that they would never bear one hundred days of hospital, without reminding them they are talking with one who is living that situation. It is sharing with those sleeping next to you what you have, whether it be a magazine or a biscuit or even just a pack of wipes: in hospital, when you are still on a bed, everything takes on an importance that it is difficult to guess; it is helping the last arrived by explaining to him mainly what happens during the day, just to make him feel at ease and less disorientated in a moment that is not happy at all; it is being able to drink from the glass that is left next to the bed-bottle filled with urine and smiling at the indignant glances of the people visiting your neighbours, yes, smiling, because, until two months before, that look could have been mine! It is discovering that angels do exist. They are the AVO volunteers who help people who are alone to eat. There are elderly people who, because of dignity, prefer to say they are not hungry rather than admitting they have been abandoned by their relatives. We help them all together... many times, they are not even left those fifty cents for a bottle of water; it is waiting for Saturday, when the "jesters of God" pass through the wards, they are volunteers dressed as clowns, who have the aim of bringing a bit of happiness in hospital lanes. Some have argued that this is "propaganda" anyway, since they belong to an ecclesiastical association, but I would personally be proud if by religious movements we would mean activities such as this one, with boys and girls who dedicate their time to help others. Ultimately, the true purpose of religion should not be this one, should it? And these volunteers make me think of the social networks, where you feel involved in social matters because you share a link to support people suffering from a disease. Now, since I do not want to mediate any more, I say that, if this makes the person who has posted it feel better, it means that he is not better than those who created the page of that link, especially when it comes to childhood diseases, that deprive children of their life. Let's go back to our topic. This love is also learning to value the doctor who, after sixteen hours of continued work, comes to see how you are before going home to relax; it is reading the feeling of desperation in the eyes of your neighbours who discover they have a tumour (this reduces 99% of problems); it is your neighbour who is transferred to another hospital for an eight-hour intervention, but tells his wife to come and tell us how it is going. It also lies in the promises made to your roommates to meet for a pizza after hospitalization, even if it will be only for a soup. But it does not matter! If we meet, it will be because we are alive, celebrating this way our victory against the game of life. It is not being afraid of showing your despair learning to weep in front of everyone, without shame and without even thinking that this could be judged, it is too personal. The patients suffering from incurable diseases make you feel ashamed of your complaints: as you can imagine, suffering in order to recover is different. It is appreciating visits and regretting when they overlap because perhaps you will remain alone the day after: in hospital having the possibility to enjoy a small portion of the life you had before has no price; it is chatting with the hospital Father, who has clearly in mind that, if we are here, it is because we believe in the actions carried out by people: as I told you earlier, the real angels known in hospital are people who dedicate their free time to help the sick, while the true miracle is represented by the team of doctors and nurses who continue to operate when they have been in the surgery room for an incredible number of hours. And, above all, it is learning that during the night in hospital, apart from sleeping, you can also write down thoughts such as these ones, trying to convey the positive things we have discovered through the disease. Now life continues, with the clear limitations, that allow me to get out from home only for a few hours, barring me any chance to go to a fair which takes place a bit far from here or a museum in another city, but, now, when I go out, I have learned to appreciate the scent of freshly cut grass and the pleasant feeling of the air on the face coming from the open window, allowing me to still feel I am alive…


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