Being of an age when I was allowed to decide which parent to live with, I opted to move in with my dad. I am not sure he wanted this (he did not want to separate me from my siblings), but I was nothing if not persistent.
My confidence that I could get the points for medicine grew in my penultimate year at school when I started to get decent results in my term exams for the first time since I was about twelve years old. After a few humiliating evenings left standing outside whatever pubs or clubs my older friends were now frequenting, I became socially isolated for a while. Although I was sad to feel excluded, in retrospect it was the making of me. With little in terms of distractions I realized I might as well do some work and it began to pay off quite quickly. And that was when I finally broached doing medicine with my parents.
Having spent most of her adult life married to a doctor, Mum understood the ups and downs of a life in medicine, but she respected my own judgement about whether it would be a fit for me. In a different way, Dad was also neutral on the matter. Having pointed out the long road to becoming a doctor, he neither encouraged nor discouraged my decision to apply for medicine. I suspect now that he didn’t want to feel responsible for my career decisions – especially one made at such a young age that is more or less what you will do for the rest of your life. Of course, from the perspective of a seventeen-year-old, the idea of a life-long commitment to anything is impossible to contemplate. He was still a relatively young man at that point, but had been a consultant for about ten years. He had five children and a thriving practice, but I recognize now that even ten years in the same emotionally arduous job can take its toll. Maybe he was afraid I might not be able to manage what he sometimes laboured to cope with. I wish we had discussed it in a more in-depth way and regret the conversations we didn’t have. I never even asked him why he became a doctor. In any case, at the age I was making the life-altering decision to become a doctor, the emotional intelligence gap between us was probably too wide for me to comprehend even if he had explained the truth about (his and later, my) life in medicine.
My father’s reality check notwithstanding, I still had romantic notions of helping people as well as a sense of curiosity about how the body worked. By my final year in school I decided I would apply for medical school and worked almost obsessively to achieve that goal. I would get up early to get in an hour’s study before school. I would work hard for hours each evening and spend many more hours studying alone at weekends. Years later my poor sisters and brothers, who would stay over at the weekends, took great pleasure in telling me precisely what a pain in the ass I was back then. They would spend their precious weekends with our father whispering around the house, because I needed silence to study. I was a dreadful brother at that stage, as I felt it was somehow me against the world and nothing was going to get in the way of my studies.
When I started medical school the following September, I still looked like a child. On my first day my father dropped me to the top of Grafton Street to walk the last hundred yards to the Royal College of Surgeons. He was pleased as Punch, I think, and probably a wee bit envious as, though he knew better than most the hard work that lay ahead, he also knew about the fun the next six years would entail. He would tell me about his college days only sporadically, after we had had a few pints.
We lived together, like two bachelors, for the entire period of my medical school years. For those six years I became detached from my siblings and my mother to some extent, only to recover our friendships as I got to the end of my training. In the meantime I found my new family among my medical student friends. Such is the intensity of the bonds formed in medical school when, at only seventeen or eighteen years of age, you spend most of your waking hours in each other’s company both at work and at play. I had friends at school and have met new friends since I qualified, but few friendships are as deep as those with my medical school friends.
As I tried to come to terms with my parents’ separation and the surreal nature of seeing my siblings at weekends as they stayed over, my new medical student friends never made any issue of their split. We would work in study groups in my dad’s small house and sit around for hours pretending to work together, but mostly I just recall the fun of it all. Though I still lived at home I had far more freedom than my peers and took full advantage of it, to the enduring aggravation of my poor father. I went a little wild once more and it amazes me still how I managed to pass the early exams given the amount of time I spent in the various pubs and clubs around the College of Surgeons.
He would cook a dinner each evening for the two of us, and every Saturday morning he would fume when I had gone straight to the pub from college and had never let him know I would not be home to share it with him. ‘There is half a chicken in the oven,’ he would remark casually the next morning, relishing my pain in my hungover state.
Dad seemed to like my friends being around and we spent many long nights drinking beer with him. He was getting used to his own new-found sense of freedom as well as, I imagine, a sense of isolation. I shudder at my insensitivity to the emotional trauma he must have been feeling, coming to terms with the ending of a more than twenty-year marriage and facing into middle age alone. You become more aware of such things when you hit middle age yourself. My world then was all about me. How selfish I was, but he was so kind in allowing me to get on with my life and rarely interceded.
In the first few years in particular we would go out together at least once a week and I would talk at length about the events of that week. Although he might not have been able to help much directly with my studies, as I progressed through my early college years I got to know him more as an older friend. He became important as a counsellor to help me through periods of doubt. He listened and laughed along with what I assume were now our common experiences (for instance, he recognized all too well the clammy feeling of walking into an anatomy room and first sighting a cadaver). He never pretended it was easy but would point out the pros more than the cons at that stage. As we both got older I understood that in my fledgling days in medicine – as a student and junior doctor – he was at the peak of his career and still very interested in the job.
It was not always one-way traffic and, as I was the only one around all of the time, he would confide in me at times about the trials and tribulations of his own medical life. He would tell stories of success and, more often, terrible tales of the failures. He spoke about how he felt about some of his (unnamed, of course) patients. I would hear through the grapevine of fellow medical students who were finding things hard and had resorted to drugs or alcohol to such a level of dependence that they had ended up under his care. I asked him about this a couple of times but he would never discuss any individuals and only dealt with generic examples – perhaps using these as a subtle way of trying to keep his sometimes wayward son on the straight and narrow.
As a young student, occasionally I went with him on his weekend rounds and was transfixed by the patients wandering forlornly around the wards who appeared to be in some sort of fog-like state but would turn slowly and smile when he greeted them. He saw how curious I was about medicine and I always hope it imbued in him a sense of renewed enthusiasm in his own work. It was odd to realize how much about the medicine I was learning he, a long-qualified doctor, did not know. I asked him about my undergraduate subjects like biochemistry and physiology a few times and he would mutter under his breath something along the lines of how little these things mattered when someone was sitting in front of you with their life falling apart. I did not understand until much later in life how right he was.
11
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THE MANY FACES OF MULTIPLE SCLEROSIS
About four times a week I tell people that they have MS. It never gets easier giving a patient bad news, and just when I think I have got the approach right – being as positive but honest as I can be – that is the moment I might get it wrong. It can be tricky to get the phrasing right. A poor choice of words will stay with them for ever. A
kind word will give them something to rake over optimistically later, but it may be misleading. And each individual’s interpretation of the same explanation is different.
It is important not to draw out the conversation, as it can add to the stress. I sometimes wonder whether the people in front of me hear anything until I say whether they have whatever disease they’ve been dreading or not; they often seem to tune out of the conversation until we get to the bottom line.
MS may present with something dramatic, like loss of vision, or a sudden problem walking, talking or swallowing, all of which are extremely alarming. But it can also present in a way that seems more benign, like pins and needles in an arm or leg. The majority of cases begin with a single neurological episode. When meeting a patient who has symptoms that suggest MS, the history is as important as the MRI scan in understanding how their MS is manifesting. I tailor some of the questions to try to identify previous attacks, as they may have occurred many years previously, and were then discounted by the patient as being something else. It’s understandable, as the attacks, at least initially, tend to be self-limiting – many people recover fully without any medical intervention in as little as a few weeks. Some people might experience what feels like an electric shock going down their arms and legs whenever they bend their neck forward. Patients say that they thought they had a crick in their neck, or they had had a sports injury around the same time, so they had rested and it had gone away.
Some people are lucky and have a single episode that looks like MS, but in fact isn’t, and they never have another episode again. Indeed, there are people who have lived with an MS diagnosis for forty years or more who don’t have MS at all. They were diagnosed at a time when the diagnostic tools available were not as precise as they are now and there seemed to be no other explanation for their neurological symptoms. Other people have a first episode and go on to have recurrences throughout their lives. They recover between attacks (remission), and then feel safe for a short period before it strikes again (relapse).
We do not know what causes MS exactly, but we think it is a disorder of the immune system that affects some who may be genetically predisposed to the condition. You could say that about a lot of illnesses, like arthritis and inflammatory bowel disease, so it is a bit of a catch-all explanation for the many medical conditions for which we still do not know the exact cause, especially in neurology.
Anita had enjoyed medical school, and when she qualified she found working as an intern exhilarating. She didn’t mind the long hours or the late nights. She could handle the sleeplessness and the middle-of-the-night bleeps. Her excitement about what might happen on each shift left her practically euphoric, though she was anxious about making mistakes.
Late one night, she was called to a young man with cancer. He was in the terminal stages, and had been extremely sick from the failing attempts at treatment. Anita tried to console the emaciated patient, who could not stop vomiting, and she reflected afterwards that here was a man a few years older than her who wouldn’t be alive at the end of the year. She moved on to the next ward to answer the next bleep.
This time, she rewrote the drug chart of an elderly woman. It could have been left until the morning, but seeing as she was up already, she thought she’d get on with it. As she transcribed the list of the woman’s medication from the chart to the fresh file, she squinted to read the names of the drugs. She turned on the bedside light, but still found it a strain picking out the words on the pages. She was exhausted, she reasoned, and decided to abandon her efforts. It could wait until morning. She made her way back to the doctors’ residence, and lay down for a rest. When she was called an hour or so later, she couldn’t make out the number on her pager, and she now became conscious of a dull ache in her right eye. When she looked around the dimly lit room her eye hurt, and she realized quickly that she could hardly see anything. She covered her sore right eye, and found she could see out of the left, but when she covered her left eye she was almost blind.
Anita was one of my favourite undergraduate students. She was witty and very intelligent, and didn’t take herself too seriously. She was empathetic towards patients, and had a good sense of human nature. When she sat with me in clinics, we would analyse the social aspects of each case as much as the neurological problems, and she was precociously astute in her assessments of people and the influence of their environments.
I see at least five junior doctors a year who worry that they have developed neurological problems, and on only two occasions in more than twenty years has it ever been anything serious. Most of them have been recently exposed to a neurology patient and wonder whether their symptoms – headaches, fatigue or a muscle twitching – signify that they too have developed a terrible neurological condition. A combination of a little knowledge, chronic sleeplessness and baseline anxiety is generally the cause, and it’s perfectly understandable.
But when Anita called in to me in the clinic the next morning, it was clear straight away that something was seriously wrong. She cried throughout the examination, as she had spent the last two hours googling her symptoms (a case of ‘physician, do not heal thyself’) and had spent enough time with me in our clinics to know that painful loss of vision in one eye in a young woman was most likely inflammation of her optic nerve (optic neuritis) – commonly one of the first signs of MS. I could not reassure her; the examination proved she was right. She had reduced appreciation of colour and limited central vision. The rest of her examination was normal, so I arranged an MRI scan for later that day. We gave Anita a course of intravenous steroids, and she recovered her vision over the next few weeks.
The MRI scan showed the ominous white spots that tend, in people with MS, to gather around what looks like the shoreline of the lakes of fluid in the brain, the ventricles. The clusters of white spots emanate from the area of the brain that connects the right and left hemispheres in a pattern known as Dawson’s fingers – when viewed in profile on a scan they look like a bright Mohican haircut on the inside of the brain.
These white-spot areas represent various types of injury to the nerves (or wiring) of the brain and spinal cord. In the early stages of MS, the wires can lose some of their insulation in a process called demyelination; the wire isn’t broken, but conducts less efficiently than before. It’s like a dodgy lamp: the light works when you switch it on, but may flicker a little. Later in the disease more and more of the insulation, or myelin, can be affected and the light flickers more often. Eventually, the wire itself becomes damaged and the light may hardly function at all. So these white spots are areas of ‘high signal’ on the MRI scans that represent plaques in the brain where the sheath protecting the nerves has become inflamed and usually indicate MS.
I had sent her for other tests looking for conditions that can mimic MS, but to no avail. Anita had, as of now, a mild form of relapsing remitting MS. We set up other tests to confirm the diagnosis, which they did, and I knew Anita would never be the same bubbly, enthusiastic young woman ever again.
Sitting in front of Anita and her distraught parents a few weeks later to deliver the diagnosis I thought of Jenny – the young woman from chapter 1 who was my first MS patient. She often comes to mind when I am delivering a new diagnosis. Anita was twenty-four years old, and working seventy or more hours a week as a doctor, and planned on becoming a surgeon. But what would her future hold, with a diagnosis of MS hanging over her? Neither of her parents was a doctor, so unlike most parents, intuitively they deferred to their daughter. She already knew the diagnosis and had done her research, but regardless of who they are, it’s not uncommon for patients to refuse to believe they have MS, because they feel so well, until they hear it from a neurologist. Anita nodded grimly when I gave her the diagnosis. Her father put his arm around her shoulder and her mother cried.
Anita said she wanted to start therapy straight away. She discussed her options pragmatically, but had made her decision. We agreed to treat her with one of the interferon injections that had b
ecome available as one of the first effective drugs for MS some years earlier. Interferon works to reduce possible future relapses by lessening the rogue response of the immune system that is thought to cause MS attacks.
For Anita, as for so many young people with MS, the question of what to do next ran deep. Had her ambition to be a surgeon been thwarted? As I had learned by now, it was not my role to judge but to try to help. What if she developed symptoms in the future while operating? What if she had no attacks for years, became a surgeon and only then developed symptoms that would prevent her doing the only job she had spent years training for? There are so many ‘what ifs’ and no definitive answers.
‘I never thought, as I dreamed of becoming a doctor, that I would actually become a patient,’ she said. My heart broke for her.
Patients managing a long-term disease have a lot to deal with, and Anita taught me so much about the insecurities that a neurological diagnosis like MS can instil. The interferon therapy caused her some side effects – flu-like symptoms after some of her early injections – and she felt run down while taking it. Interferons can cause depression in the first few months, but it can be hard to distinguish from the perfectly natural change in mood you might expect to see in a young, vibrant person who has suddenly been given a diagnosis of MS. Anita became increasingly timid, and I was sorry to see her lose her confidence.
Gradually Anita settled into a routine, giving herself the injections three nights a week. She said she had gorgeous moments when she was free of any thoughts of her dreaded condition, but no sooner was she enjoying life than she would be due another injection. It sounded like a form of emotional torture.
Our goal is to help our patients to resume their everyday routines and many people with MS live normal lives. Of course, the diagnosis never leaves them; they have to keep up with their medication, check-ups and therapies. Yes, the landscape of their lives will have changed, but what I often hear is simply, ‘I just have to get on with it, don’t I?’ So, Anita would turn up for her appointments along with the 700 or so other people with MS who attended our clinics each year back then. There, she would see the worst cases, the people who don’t respond to therapy, the people who are profoundly disabled by spasms and loss of muscle control. The sight of such patients stays with the more fortunate in the waiting room, and makes a greater impression than the majority breezing in and out of their annual reviews on their way back to their busy lives.
Just One More Question Page 7