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Leyla SanaiA SPOT OF BOTHERTwo years ago, my right thumb fell off. My boyfriend and I were in London in a hotel at the time. It was a bit surreal—after my initial mild hysteria, I fretted about which bin to put it in so as not to freak out the cleaner. ...Illness is not the disaster we all assume... A couple of weeks later, my fourth finger fell off, then part of my index finger. The shock never goes away, but you become inured to it. The reason for this shedding of digits is my chronic illness, scleroderma, which was diagnosed around winter 2000, when I was 36. This rare disease—incidence between two and 12 per million per year—causes symptoms that would not be out of place in a horror story. My fingers become gangrenous and half my right thumb, several fingertips, and a toe tip fell off. My hands have curled up into contractures, so that they resemble ladles, and the easiest tasks have become impossible. Every few months, a bit of bone protrudes through the skin of my knuckles because my fingers are so curled up. My peripheral nerves are affected. Intermittently, blood flow in my spinal cord decreases, so that one day I can walk decent distances while the next, my legs feel like jelly. Parts of my skin have become hard and stuck down, like plastic. The worst involvement is of my guts. My sigmoid colon twisted itself into a knot, cutting off the blood supply and becoming gangrenous so I had an emergency sigmoid colectomy. Months later, my small bowel became blocked due to taut fibrous bands stretching across it, and I was admitted to hospital four times and starved on a drip for a week each time until it settled. The fourth time they had no other option but to cut me open yet again. Less than a year later, my transverse colon became gangrenous due to a clot blocking the middle artery, and I had to have a subtotal colectomy.After my first laparotomy, I tortured my attentive consultant by developing a full house of complications— sepsis, MRSA, infected central line, deep pressure sores, severe anaemia, two stone weight loss, tight stenosis at sigmoid anastamosis, and adhesions. My body's rebellion continued—after my third laparotomy, I developed an incisional hernia, which I have quietly ignored. In the past few years, I've had more sharp, enormous objects plunged into my body than a sword swallower. I underwent bilateral thoracic sympathectomy, which involved my lungs being sequentially deflated, and nerves in my chest cavity incinerated, five lumbar sympathectomies with a needle the size of a kebab skewer, radial and digital sympathectomies, angiograms that involved a needle in my groin and a catheter edged up into most major blood vessels in my body, several lines, and a portacath, a colonoscopy and dilatation, and much more. I endured needles and chemicals being injected into my arms and legs, cameras up or down every orifice, ghastly aniseed flavoured contrast medium via the same route, enough radiation to put North Korea to shame, noisy MRI scans, claustrophobic CT scans, messy ultrasound scans, dull pulmonary function tests, echocardiograms, nerve conduction studies, plus a week long hospital admission every six weeks for intravenous infusions of an obscure and unlicensed drug. I feel like a walking medical textbook. Or a crash test dummy. People's reactions have varied. Most are lovely, compassionate, and kind. A few are not. Having asked to use the photocopier in my local newsagents, I was aware that the newsagent was glaring at me. When I paid, he snatched my money and gave me a look that would poison a cobra. He obviously thought my finger stumps and missing thumb were due to some heinous criminal activity of my own. Another total stranger inquired curiously, apropos of nothing, if I had leprosy. Even the most well-meaning people can lack tact. During recovery after my third major bowel operation, I asked one of my specialists if I could ever have a baby. His reply was stark. "Frankly, you wouldn't be around long enough to bring up the child." That hurt more than all the invasive procedures put together.  Before my illness, I was an ambitious and workaholic doctor. I completed an excellent medical senior house officer rotation in Edinburgh's Western General Hospital after my junior house officer jobs, and gained my Membership of the Royal College of Physicians' exams as early as possible, in 1992. With the fickleness that youth and choice bring, I fell in love with each specialty I worked in—cardiology, general medicine, neurology, intensive care—and consumed it with hungry enthusiasm, but eventually decided to move sideways into anaesthetics, as the intensive care unit (ICU) held me in thrall. In the ICU, patients often suffered from severe abnormalities in multiple systems. There was nothing more satisfying to me than working all night to optimise a parlous patient's physiological parameters and then seeing them turn the corner. So I entered anaesthetics, since airway training is essential for ICU. After passing my Fellowship of the Royal College of Anaesthetists' exams in 1994, I continued my clamber up the ladder and became a consultant at Glasgow's Western Infirmary in 1999. I diagnosed my own scleroderma when my circulation started to go haywire around 1999-2000, after checking my own auto antibody blood tests. I had to give up my career several years ago since anaesthetics is a very hands-on specialty, and my missing thumb, fingertips, large bowel, and other problems make a demanding, practical job impossible. But here I am now, minus a career or the means to run, open jars or turn a key without a large plastic device stuck on the end, and I'm as happy as I've ever been. Illness is not necessarily the disaster we all assume it is. It becomes part of a routine, an accepted chore of life. It's almost normal now for my daily shower to involve dressing an ulcer afterards, so frequently do they occur, and hospital appointments litter my diary like my on-call used to. Yet I've also noticed the positive benefits of illness—an ability to empathise with people that I would otherwise have lacked, more tolerance, time to maintain friendships and a relationship, and delicious days in which to read all the fiction I want to, a luxury that was lacking in my previous life. Behind every life, there's another unexplored one waiting to be found. This was based on an article former consultant anaesthetist Leyla originally wrote for the British Medical Journal. Massive thanks to her for reworking it for Un-Made-Up. The photo is by Ricardo A.  How this Un-Made-Up entry came about. Thinking about Ben Watt's excellent Patient, I was making a possibly rather pompous comment on another website about how all illness had a narrative when Leyla, who was also posting there, kindly offered her own as an example. 9:13 AM - 29/9/2006 - post comment
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