If You Were Still Here …

dadFather’s Day has always been difficult for me.

Dad died aged 35 a couple of months before my 5th birthday, from complications arising from his MS.

I don’t have clear memories of him, just a few snapshots in my mind, but I do remember the day he died.

I waved him off to heaven from a window, still wondering whether the bottle of medicine I had dropped by accident had anything to do with him leaving. I remember feeling desperate rage at whoever had taken him and wouldn’t give him back.

As I grew up, the concept of MS receded into the background; I simply regarded it as an illness  that could make people end up in wheelchairs, like my dad. I studied photographs of him, tracing his life from bright-eyed optimism to darker ones of him slumped in his chair. The difference was shocking and incomprehensible. I filed MS away in my mind.

Every year throughout primary school, the week leading up to Father’s Day was torturous. I would have to tell the teacher I couldn’t make the card, the gift. I was given other projects to do, seething with envy as my classmates spent hours chatting about their dads while they cut out bits of coloured paper.

One year, we had to draw a picture of our family. I don’t know why but I had a sense of overwhelming shame that I couldn’t put my dad at the beginning of the line of people. Instead, I drew my brother standing on a large rock, followed by my mum and then us, in the hope that as the teacher glanced at is, she would assume the figure was my dad.

Throughout my angst-ridden teenage years, my outrage against the whole world at the loss of my dad led me to backpack to Norway for six weeks after my GCSE’s in a bid to trace one line of my dad’s origins. It would take another six years before I accomplished this, but during that trip I felt more connected to my dad than ever before.

As I got older and life opened up, it was the major events that I missed him the most – my wedding day, when I gave birth to his grandchild. I couldn’t help but wonder what he would say, would he be proud of me, what would he look like.

And then, MS happened. I was 37. Suddenly, I needed him more than ever. He would be the only person who would completely understand the confusion, the anger and the fear. I hated him and I loved him. I hated him for not being here and I loved him more as I now had an inkling of what he had gone through.

I felt incredible, overpowering sadness that he was born a few decades too early to have access to the treatment I now have. There were no MS nurses, no DMT’s and no real understanding of this illness. It was termed ‘creeping paralysis’ when he was diagnosed back in 1970.

From the stories I hear, my dad was a determined and wilful person, with a vibrant and somewhat unconventional personality. If he was still here, I would love for him to be proud of me and how I live my life despite MS.

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10 thoughts on “If You Were Still Here …

  1. Teresa McTernan says:

    That is so moving. One thing for sure he would be very proud of you xx

  2. Me says:

    Pretty sure he would be, mine too

  3. Judy says:

    Oh! This brought tears to my eyes! Your father would be so proud of you and how you are bravely ‘dancing’ with your strange dancing partner, ms, and how present you have been for The Teenager.
    Your father’s choiceless courage.

  4. Keith Rhodes says:

    Lump Hammer Love

    I am fortunate to have enjoyed 26 years with my Dad before he died from his second heart attack at the age of just 53.

    His death happened in July 1986 some three months after I married.

    My eldest daughter was born in October 1990 and my son arrived in November 1992.

    My youngest daughter , Natalie, followed in June 1998 and I was diagnosed with primary progressive MS on the day that TV celebrity Jill Dando was murdered I.e. 26th April 1999. A bad day for my family and considerably worse for the Dando family.

    I share with you, Barbara, sadness that my Dad never met my children and vice-versa. They would have adored each other. Am I being selfish in hoping that my children have children sooner rather than later to minimise a reoccurrence of my Father’s sad story.

    I also share with many of you, a desperate dread of evil MS claiming the good health of my children. Although my children are all now adults and far more rational than I am, I pray that I never need to talk to them about the quite common reoccurrence of MS in children of a parent with MS. Am I being a coward ( which I am usually ) and have any of you discussed this with your children who have not experienced any MS like features ?

    Perhaps I need to find within myself the bravery my Dad displayed when as a teenager I dropped a big lump hammer on his foot and broke his toe. Not a single f*** escaped his lips and he continued to love me and spend lots of time with me.

    • stumbling in flats says:

      I don’t think you’re being selfish at all, wanting your children to have children sooner rather than later. I kind of feel the same way myself!! Although of course I want him to see the world first.
      It really is a common dread I think, to worry about whether MS will touch another generation, although I never considered it when I was growing up. However, as soon as I had my very first symptom on that fateful day, I knew immediately what it was. And of course, I worry about it affecting The Teenager.
      He now has a neurology appointment early next month, so hopefully we can quickly clear up his recent collapse and the spectre of MS can be put to one side.
      p.s. if someone dropped a lump hammer on my foot, I doubt I would have been so polite!

  5. Carina says:

    I know exactly how you feel, I lost my father when I was only 8 years old. He died of a heart attack and diabetes at the age of 64. My mother found it very difficult to cope on her own and I felt, like you, somehow ashamed of the fact that I no longer had a father. At school, I never mentioned anything, nor the problems I had at home. I was an only child and very much an outsider. Throughout my teenage years I always had the feeling something was missing – I was close to my father and resemble him in both appearance and personality.
    When my mother passed away in 2010 (breast cancer) I came to realise how alone I really was. But all these life traumas have one good aspect – it increases resilience in being able to deal with difficult situations such as, in my case, my husband’s MS diagnosis. It has also made me a more caring and sympathetic person to other people’s needs. The answer is quite simple: NEVER GIVE UP!
    best wishes

    • stumbling in flats says:

      I’m really sorry to hear this, it must have been so difficult for you. Isn’t it odd that we were both ashamed at school? I still can’t quite remember why I felt that way.
      You’re absolutely right though, going through hard times like we have definitely prepares you for challenges such as MS.

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