MS, Dad and MePosted on 16 December 2018 in MS experience share
By Martin Baum
As someone who has had Multiple Sclerosis for thirty five years – just let that settle in for a moment because that is a huge number off my fifty-nine years of age – my relationship with MS has been a less than harmonious or agreeable arrangement. Much as it had been with my family and especially my dad for much of that time.
For every unforgiving relapse over the decades there have been consequences and blame between the two of us that make this reminiscence as uncomfortable to remember as it is difficult to write. Although I had MS, my illness wasn’t confined to just me. It was too much of a family affair to be considered otherwise.
Over the years, after diagnosis, relationships with my family had been a battle of wills. But with dad, well, we both seemed to blame the other without ever finding a balance of understanding from both sides of the MS divide.
At the time when my parents and I were given the diagnosis from a neurologist that I had MS – we were a close family then and mum and dad were there for me, something that I find easy to remember now as easily as I forgot when life turned on its head post diagnosis; there was nothing that could have prepared any of us for the fallout that ensued.
On reflection, being wise years after the event, I can now see that there was too much hurt and too little tolerance from both sides; lack of understanding, communication and acceptance but then again what did I know? I was in my early twenties and didn’t really understand what having Multiple Sclerosis meant. I had become a ‘sufferer’ with a classic sufferer complex.
What I also didn’t contemplate was the simple truth that neither did my parents understand. My mother immediately brought out the cotton wool, although in reality there was never going to be enough to wrap me in. Yet the more she tried the more I kicked against it and so began a vicious circle of good intentions gone awry. My father, on the other hand, was having difficulty handling my increasingly hostile and belligerent behaviour whilst trying to come to terms with the runt of the litter.
Runt; that was my word. He never said it, but it must have been extraordinarily difficult to deal with a child that he perceived to be ‘damaged’ through no fault of his own. Even now, as the proud father of a 24-year-old son, Josh, I cannot even begin to imagine the despair and helplessness he must have felt by not being able to do anything to take the MS away from his child.
The fact was that none of us coped; mum would explain away my growing fatigue as a ‘cold’ to her friends and family which only made me react with hostility. For every action there was a reaction, but it was never really going to be any different because none of us knew otherwise.
As the years dragged on, I moved on and got married yet though domestic life with my parents had settled down to a certain extent, my father still couldn’t bring himself to talk about ‘it’. Yet given I was on a constant downward spiral, whenever he spoke to my wife he would unfailingly mutter, “Housemartin?” Suddenly I had evolved from a son into a bird with the speed of a question he couldn’t ask fast enough for fear of it getting stuck in his throat. My wife, sensing his awkwardness to face reality, played down whatever was going on. And so it went on until my father’s health began to decline.
He began to pay the price of doing manual labour in the harshest of conditions. As a result, his mobility became impaired as did his immune system, and that was the moment he began to understand and relate to me.
After all the years of thinking how little he cared, it broke my heart to see him suffering and now it was me who wished I could take his pain away. I watched helplessly while my father adapted his entire way of life as his body went into decline, but never had I felt closer to a man I had so misjudged. Yes, there are regrets but the truth is – shamefully if not sadly – none of us knew any better.
Recently I had lunch with a theatre producer acquaintance who told me how her husband couldn’t cope after she was diagnosed with MS and left after many years of marriage. Listening to her story, told quite dispassionately as it turned out, there were so many aspects of her story I could relate to.
I was struck by a stark difference in our circumstances and it was this; a relationship with a spouse compared to one shared with parents is that generally speaking, although parents might not always appear to be the most understanding or sensitive, they won’t walk away.
By the time my father had passed away – several years ago now – we had begun to build a relationship. So much so that I had only just begun to appreciate what it was to have had a family on my side wanting to protect me, even if I didn’t know it at the time.
More than that I also came to realise that I could have achieved so much more during that time by not living the illness but instead living a life.