A date you do not forget
“Are you sure about your dad?”
I can still see the puzzled look on the neurologist’s face. It’s January 20, 2005, and I’m attending the first appointment in a series of investigations into what is wrong with me. A day that will change the course of my life forever. I’m 42 years old, and I have just been told I may have multiple sclerosis (MS).
I was a teenager when my mum told me my dad had been diagnosed with MS, a debilitating disease affecting the brain and nerves, often associated with muscle and walking impairments. All I can remember was the cover of a medical book she showed me, purposefully laid on my bedcovers, and her reassuring words of, “Don’t worry, it is not hereditary.”
Although I’ve since learned that cases exist where several members of a family are affected, those words were the only ones I had retained, and that was all I needed to know. The thought of being affected by this disease later on in my life never crossed my mind, not even for one moment. No second thought, no “what if?”, no nothing.
I have often wondered, after that fateful day in the neurologist’s office, what my life would have been like if, all those years ago, my father’s condition was known to be hereditary and I had been told there was a chance I’d get it. Would I have lived differently, aware the clock was ticking? Would my still-in-the-making personality have made light of it? I was so young after all and had my whole life in front of me. Would I have worried about myself some 20-25 years in the future? So early in one's life journey, being forty-something seems like a whole eternity ahead. But that eternity had arrived, knocking on my door as I tried to make sense of the news and absorb the shock of what I had just heard.
But there was something else.
The summer before that first examination, my sister—two and a half years younger than me—and I were candidly discussing the fact that our bodies seemed to be getting on a bit. She told me she had to stop for a rest one day during a holiday mountain hike, unable to take one more step, her legs almost becoming paralysed. It was just an isolated incident, a harmless and random one-off, but I had to admit to occasionally feeling ‘heavy' with jelly-like legs when climbing staircases at work. I had put it all down to being in my forties, and all that entails in terms of starting to be steadily over the hill, but we eventually decided to check with our respective GPs. My dad’s condition had not even crossed my mind yet at this point, but my sister already feared the worst—a link between our father and ourselves.
Fairly relaxed going to the routine appointment I had made with my usual lady doctor, I was expecting some stock advice about healthy lifestyle for my years. Describing my lack of energy when physically exerting myself, she asked me to undress and lie on her examination table. Requesting I execute various movements to lift my legs and checking my reflexes, I detected some slight concern on her face. She had always been sparing with her words, but she did not say anything. Silence. The worst. I began to feel uneasy. She asked me to get dressed again and went to her desk.
“I’m going to refer you to the neurological department at the hospital for further checks,” she said. Upon hearing the word 'neurological', my heart sank. Now troubled and desperate to be reassured, I tried to ask her questions, but she was sorry she could not tell me more without specialist input. As much as I wanted to know more, there was nothing I could do but anxiously wait for the appointment.
It would be weeks before I had one and could put my mind at rest, allowing me plenty of time to have a field day with worst-case scenarios. Weeks later, as I eventually made my way to the hospital for the neurologist referral, my stomach was in knots; as I put my coat on, my husband tried to cheer me up, joking it was probably a simple case of the grumps. If only. After the appointment, things were far worse; the verdict had been rendered. It was most likely MS.
Had it been an unfamiliar disease, I could have tried to ignore it and brush it aside as my mind sought to cope with this devastating news. But this was the very illness that had progressively destroyed my dad’s life during some thirty long years. Bit by bit, it reduced him to the tiniest part of who he had been. All my adult life up to now, I had been the heartbroken witness to a condition that forced him to gradually lose all autonomy, eventually confining him to his bed the majority of the time, needing to be fed, washed, dressed, and cared for during the last four or five years of his life. A disease that slowly and relentlessly crushed his soul and would eventually claim his life at 73, only a year after my first appointment.
How was I going to keep this ghost at bay, this terribly haunting picture of me stepping into his footprints, ready to follow his fate into my own grave? As if it wasn’t bad enough to be given such a voodoo curse, I had to contend with knowing exactly what would happen to me in all its sobering details. Such was the sword of Damocles hanging over my head.
For most people, life usually follows a pretty linear path. We are born, and we grow up, working through school and maybe pushing on to university. Our hearts skip a beat with our first romance; we move out of our parents’ home and maybe go explore the world. We get our first job; we get married and have kids. Some of us live through the pain of a divorce. We work hard and try to lead happy lives. We experience many cheerful moments, and we manage to weather the bad ones. We also run around like headless chickens, and all too soon, it’s ‘game over’.
But for some of us, there can also be a before and an after when we are suddenly faced with a life-changing event, where life will never be the same again.
However, that same life can somehow be equally merciful, and it gave me the ability not to focus too much on my potential fate. Built-in survival instinct maybe? Besides, as a working mother of two beautiful young children aged ten and six, my busy schedule didn’t give me much time to ponder such things. Thinking back, at that point, I had two things going for me.
Firstly, there was the neurologist’s puzzled look when not making sense of this first diagnosis and asking me over and over again if I was definitely sure my father was suffering from MS. Secondly, I was barely experiencing any symptoms. My gait was ever so slightly out of kilter, but there was nothing visibly wrong with me to the outside world. Everything else was absolutely normal. The first MRI of my brain showed a few specks of abnormalities, but nothing particularly conclusive to indicate it was MS. With a diagnosis obviously not clearly defined yet, was I being given a “get out of jail free” card and left off the hook, at least for now?
Growing up in a family environment open to homoeopathy, acupuncture, and other alternative health modalities practised by my uncle, a rather avant-garde GP, I wasn’t going to rush into a whole battery of conventional tests. I already lacked confidence in traditional medicine that could not do a great deal for me, and had always leant towards more natural ways of doing things, steering away from chemical treatments.
I declined the lumbar puncture offered, also known as a spinal tap—one of the standard methods for confirming MS— where a needle is inserted into the spinal canal to collect fluid for diagnostic testing. I had also been warned of its potential side effects and the possibility of permanent headaches. Coming so soon after an uncertain diagnosis, I thought it was a bit premature, so I turned it down. With my father having displayed the symptoms of the rarer version of the condition, there were potentially no remedies that could be offered to me since most treatments were only suitable for the more common type.
So, granting me mercy, the illness left me be for a while, allowing me to look after my two young children. Running was the only thing I could not do anymore but not being a sporty type as in my younger days, it was a minor issue. In the absence of obvious symptoms and especially anything that would prevent me from functioning in all my daily routines—and despite my tendency to worry—I was not compelled to look into or research my health’s challenge. Although not deliberate, ignorance was bliss.
My sister had only had a standard GP consultation leading to a diagnosis of a possible congenital hip malformation, so we were none the wiser. Life carried on as normal for both of us for the next five years until our mother’s death in February 2010. Up until then, she had done what all mothers do, protect her family. I remember how she had timidly told my father shortly after my first examination that it was nothing to worry about and probably unrelated to what he had. She was desperate to reassure not only him but my sister and me also.
It wasn’t until after her death that, when sorting out her papers and possessions, we got hold of our father’s entire medical record. There was something in there we had not seen or heard of before. One single new word appeared in the medical reports of tests he had gone through from the mid-nineties up until his death. It was in the French neurologist’s office that, soon after, my sister and I found out what the word leukodystrophy was. I had never heard of it.
