Thursday, 25 July 2013

26th July 2013

Hiya All, this update coincides with 26th July, the 1,000th day since Steven's accident. I hope it shows the full extent of Steven's injuries, and shows how all our lives have been affected. Before the accident, we all had such a normal life. Steven had been working for several years, legally, and was enjoying life to the full. He had his motor-cycle. We had recently bought him his own house. He had a long-term girlfriend, and he was enjoying his leisure time at bars, beaches, and dances. We regularly went out with friends for day trips to Spanish villages for views and fiestas, meals, and many holidays especially along Spain’s coast and islands, and including a trip all around the world. Steven’s accident stopped all this, affecting all our lives. He suffered catastrophic injuries which still affect him today. He had extensive in-operable brain injury which has affected him in so many ways, and he and we are still learning what extra problems he has. He cannot feel the whole of the left side of his body. For a simple example he cannot clap his hands together in time. He describes his left side as wooden, or not belonging to him. He finds it very difficult to speak, both in formulation of words and sentences, but also in maintaining a continuous conversation. He has to think about what he wants to say before he can say it, even then he has to often pause during speech. He was able to translate from Spanish to English to Spanish very quickly, but now he cannot do it as fast. He cannot interact in a group of people all talking. He was able to translate Spanish or English music to English or Spanish words, in order to sing-a-long, but now he cannot. He cannot concentrate on any particular subject for a great length of time, he is also very forgetful. If circumstances do not meet his expectations, he gets distressed, angry, and depressed. He feels hungry but finds it difficult to actually eat food. He cannot control his body temperature particularly when it’s cold. Also his hormones are not correct, he sweats very easily when warm, meaning that he has to have several showers. Working in bars he was accustomed to loud noise, but now he finds background noise irritating. Due to sights and sounds experienced at various hospitals he gets upset easily when seeing people in a similar position to him. He can no longer enjoy his motor-cycle so has lost all of his independence. Steven finds it difficult to sleep due to the constant nightmares of the accident and what he has had to experience during his recovery. Waking in the morning is difficult and slow. Often when he wakes up, he realises that this is his new life, having dreamt that he was living an ordinary life, this is particularly distressing. During the early months of his recovery he was in a state of horror, unable to tell us of his pain, problems, or feelings, and he is reminded of the pain, inconvenience, and embarrassment of this every time he shuts his eyes. He and we were once told that it would be best to have his left foot amputated, these thoughts cannot be dismissed easily. He has had one hip joint replaced, but the pelvis is permanently twisted. This causes pain and discomfort whether sitting, standing, or walking. He has had two operations on his left elbow, but that still causes him severe pain. He is uncomfortable with the look of his tracheotomy scar and is considering “plastic surgery”. He has permanent muscle pain down mainly his left side, probably due to lack of use whilst in a coma and subsequent long recovery in hospital. He still does not have full control over the use of his left foot, particularly his toes, because they regularly curl under his foot when walking. He used to experience severe pain every time he tried to put on his shoes. The pain now is at least manageable. He has terrible scars and muscle wastage on his left leg from the accident and the insertion of a metal pin in his lower leg. He is a very bad passenger in a car. There are many drivers who drive so badly, or leave it to the last minute to stop at junctions, or especially drivers who fail to stop at red traffic lights, creating almost a state of panic in Steven. He can walk, with the aid of a walking stick, but only in a straight line and with no obstructions such as people, street signs, animals, high wind, or rough surfaces. When walking he has to tell each and every part of his body to move in the correct manner. He cannot put his left foot flat on the floor, because he has little or no control over his foot. When walking he puts all his weight on the right side, because he cannot feel his left side. He cannot walk and talk at the same time. He stumbles almost every day, and falls over about once a week due to loss of balance. He drops things on a regular basis, breaking many items of crockery, or spilling food on the floor. At home he continually exercises, particularly walking, to try to teach the muscles how to work. If he did not do this, no doubt he would be accused of not trying to improve his health. He wants to get back to normal, and he and we will do what’s necessary to do so. During his continued recovery he has at times been able to raise his left arm above his head, he has had increased mobility in his left leg, and he has been able to move his head side to side. However, this is done after physiotherapy and massage, and under controlled conditions. He cannot do these things normally. But hopefully it shows that the limbs and muscles are working and one day in the future perhaps he will be able to move normally. But there is also the possibility that he will not be able to do it, another source of constant worry. It was thought that he could drive a car. But if he cannot do two things at the same time, how can he drive, as much as he wants his independence this isn’t going to happen for a long time. He has to recover in an artificial environment, no crowds, no bad weather, no problems. In the real world Steven has a lot of mobility problems, whether caused by poor muscle action, or from the poor sending of messages from the brain to affected parts of the body. He lost his girlfriend because she could not cope with him in the condition he is now. He used to have many female admirers but no longer has female company, but he asks himself how can he look after a girl when he cannot look after himself. He feels very vulnerable to thieves etc on his own, either out taking his exercise, or even staying in his own house. He has lost the company of a lot of his friends due to being unable to join them in crowded environments such as parties. He has had to endure a vast amount of dental treatment being required, due to accident damage, and neglect when he was in a coma and having a tracheotomy. Steven’s speech is affected due to problems with his bottom jaw, though not broken was no doubt dislocated or jaw muscles affected. The latest examination by a Neurologist revealed that due to the brain damage Steven has hyper-sensitivity, this means that all of his pain is exaggerated. He is about to start on a new regime of medicines plus Botox injections to his left foot. These will help alleviate the pain, and allow the foot muscles and tendons to be more flexible. Steven has lost over 2½ years of his life when he should have been enjoying himself, perhaps even settling down with a family. All this caused by him being sensible in taking a taxi when he’d had too much alcohol to continue riding his moped. Steven is still receiving regular massage which is no doubt helping his muscles and limbs remember what they’re supposed to do. He is also receiving other treatment at a specialist “brain” hospital in nearby Elche. Here they’re concentrating on how his brain works, and also teaching him the correct way to move. He is taking pills to help calm him down, and at the same time make his brain work. He finds this is helping. He says that his brain always seems to be active when he is trying to relax, but this is the reaction that the doctors are looking for. He was paying for his own mortgage for his house, but due to work commitments, was unable to enjoy it fully before he had his accident. He now lives at his house, but relies so much on us for his care. We have to do his shopping. We cook many meals for him. We take away his rubbish to the local bins. We have to take care of his dog at our house. He has to employ a local lady to clean his house. She or we do his washing and ironing. We have to remind him every day to take any medication, or to remind him of what our itinerary is for the day. We even have to occasionally make his bed. He still spends many nights at our house in a bed permanently made up for him. We allow him to stay on his own to give him some independence and privacy. He can have friends to see him, or watch his favourite programmes on television, or play on his computer games. As for us, our lives too have changed. Whilst Steven was in his coma, we never knew whether he would recover at all, or what disability he could have. We were warned very early on that these two options were the only ones available. After he came from his coma, we still didn’t know whether he had any of his senses. We didn’t know what language, if any, he could remember. We didn’t know whether he would see clearly. We didn’t know whether he would ever walk again. As time went on we watched him grow again as if from a baby state. He had to re-learn everything from eating and drinking, to walking. The difference is that a baby is taught what to do. Steven knew what to do, but couldn’t do anything, and found it very hard to re-learn. He even went through psychological changes such as baby type tantrums and teenage rebellions. That is why on his birthday recently we celebrated it as his third birthday. We cry everyday when we see him bravely trying to act normally at a time when he should be enjoying life. We have to take him everywhere to receive treatment in the hope that he can recover. We will do anything which will improve his life, whether it’s buying expensive shoes, keep-fit equipment, training aids, hospital appointments, massages, occasional meals out, and one fully deserved holiday. All this takes time, effort and expense. We have both lost a lot of weight. We are both depressed at the apparent lack of concern from the car insurance and the Social Security. We are in a constant state of stress due to constant changes in our daily or weekly programme, and the delay in settling Steven’s claim against both the car insurance and Social Security. The Social Security have actually lost Steven’s application for benefits, despite acknowledgement receipts, so we have to go through the whole procedure again. There are monthly visits to Torrevieja Court to see a Forensic Doctor who is assessing Steven’s claim against the car insurance company. Our car has suffered with excessive use, and the expensive maintenance of it. Our house needs extensive decoration and maintenance. But Steven and his treatment comes first. I have said it before, but this caring for Steven is a privilege, and we take great comfort from the knowledge that his life and ultimately ours is improving. We think that the car insurance company are only concerned with Steven’s ability to walk. The company have totally forgotten all the other serious long term injuries particularly to his brain. We don’t even know if his injury list is complete, since we continue to find new “faults” with his body. Every doctor without fail who has seen his hospital reports and scans of his brain injuries are amazed that he is alive or even functioning as good as he is. According to them all the evidence shows that he should not be alive. This is what we were told immediately after the accident. It’s only his youth, strength, fitness, and now mental strength which has got him this far. During Steven’s recovery, just after coming out of his coma, at the Valencia hospital, a doctor from the car insurance saw him in his wheelchair and asked him to stand, which he did, with difficulty. She said that he was fine. This was before he had a hip replacement and elbow operations, and before the full extent of his injury to his pelvis was known. This was very insensitive at the time. Steven and we worry about the future. We are both in our mid-sixties, and Steven worries about our health and what would happen to him if something happened to us. We have those same worries. We worry about Steven’s future health, whether accident related or not. There is nothing wrong with the Spanish Health system, but we worry about his future health care, since it will be impossible for him to obtain the private health insurance common to Spanish families. We try not to be bitter about the whole injustice of this, but are so angry with many people. There are many people and organisations who have done nothing at all to help Steven or us in our hour of need, despite us supporting all manner of sponsorships, collections, and charities over many years. We have been ignored in the street, we’ve had people say hello, shake hands and walk on quickly without even acknowledging Steven, people have crossed the road to avoid us. None of this is an exaggeration. We are no different to anyone else and we have helped whenever we were able. We didn’t expect favours in return, but we now know that the “chain letter” effect doesn’t exist. On the plus side we have received incredible support from many others, including total strangers who don’t even know us let alone know Steven. This support has been wonderful and does restore our faith in people. We are also bitter and angry with some of the medical profession. We have to bear a heavy responsibility for how we care for Steven. We do what we’re told to do, go where we’re told to go, and still the medical opinions vary so much. We don’t want to make a mistake, we have to put our faith in what we hear. It makes us shiver with fright when we think that we could have authorised the amputation of Steven’s left foot, or have other hat would have been unnecessary operations. There’s no doubt that sections of the medical profession have worked wonders, if it wasn’t for them at different hospitals Steven just would not be here now, and we’re so grateful for them. We just wish that the opinions were all the same. This whole process has been a huge learning curve for all of us. We hope that what has happened to Steven will give some encouragement to similarly affected people. Just because someone is in a coma doesn’t mean they’re not aware of their surroundings. They may not be able to say or do anything, but Steven has proved with his memory recall that he was aware, and by recalling these things it causes distress to him. We try very hard to be positive and remember that he has improved, but it still hurts. Steven's recovery has been nothing short of remarkable. He's rarely complained, despite having good reason to do so. There's no doubt that his recovery has come from magnificent work by the health services, Steven's relative youth, his fitness, his amazing strength, mental and physical. He is without doubt a hero in our eyes. Also this story shows that recovery is possible albeit slow and long. We have hopes that Steven will regain some of his previous life, we just have to continue to be patient.