So You Can’t Miss What You’ve Never Known?

Dad2It’s strange.

I grew up ‘knowing’ my dad died of MS.

I was guided to a window shortly after his passing and shown him travelling to heaven.

A lot of people get angry when I tell them this  – you don’t die from MS.

Well, back in 1978, you did.

There were no MRIs, no disease modifying drugs, nothing.

Technically, he died from a complication arising from his MS; in my mind, he wouldn’t have had this complication at the age of 35, without having MS. Which came first?

So, yes. It was normal to grow up with one parent. I missed him at seminal points in my life and often wondered how he would laugh, how he would hug me, how he would sit down with me and put the world to rights. How he would protect me. I strove to bring the photograph to life to no avail.

When people found out my dad died when I was four, they were sympathetic, of course. And I would reply,

‘You can’t miss what you’ve never known.’

I was adamant. A protective mechanism?

I now stand corrected. You really, really can.

At 37, broken and alone, I missed him more than anything.

Think of the conversations we could have had! I would compare symptoms, speak with someone who understood exactly what I meant by ‘fatigue’, ‘nerve pain’, ‘abject terror’. He would have held my hand and understood.

When I was going through the diagnostic process, I felt closer to that figure in the photograph than never before. Now I knew. Now I had an inkling of what he had gone through.

It was this that made me choose Alemtuzumab as a treatment option – I was going to blast MS with everything my dad never had. Call me sentimental.

On this sentimental strand, I would like to think he would be proud of me and all that I have achieved, despite MS. Sure, I have collapsed, reached rock bottom and felt like there was no tomorrow.

But everything I have done since, whether it is making The Teenager toast or writing a book, it is all with my dad at the back of my mind. According to others, he was intrepid, fearful of nothing.

I would like to think I have picked up where he left off.

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8 thoughts on “So You Can’t Miss What You’ve Never Known?

  1. Debra Smith says:

    You are so right about MRI, disease modifying drugs etc. not being available in 1978! We often forget how lucky we are these days. I had my first MRI (privately) and IV corticosteroids in the middle of 2002. Even then, my local NHS authority had no MS nurse, no specialist neurologist and could offer nothing for treatment. I was exasperated, but now I realise that even then I was much better off than many who had come before me. However, by 2004 we had an MS nurse/neurologist and at the start of 2005 I started my first treatment with injectable drugs. When I look at the situation today, there are so many options – at least for RRMS.

  2. Judy Epstein says:

    This was very moving. You (and many others) are so fortunate to have ms drugs like Alamtuzumab available now. You’ve bravely picked up where he left off.

  3. David says:

    It used to make me angry when people said MS is not fatal, you only have a disease it’s not cancer, then ask what is Multiple Sclerosis?
    Even during Vicki’s last days friends and family even our son didn’t think Vicki would pass away.
    Sometimes I think how lucky some MSers are to have different drugs to help them live with MS, then how strong they are to put up with different side effects.
    My friend she had an LP last Monday first 2days was fine, Thursday her carer called GP and MS nurse her speech and swallow have declined, was told she is having a relapse.
    Thankyou for your blogs I enjoy reading them, hope you and the teenager have a good happy Christmas and a better 2016

    • stumbling in flats says:

      Thank you so much David – I always appreciate your input and wishing you a wonderful Christmas too 🙂
      I know exactly what you mean. I remember talking to a nurse (not one here in Cardiff) and told her my dad died of MS. She told me blankly that simply wasn’t possible. Well, I agree to differ. When your immune system has been compromised by MS, etc.
      Vicki sounds like she was an amazing woman and I’m sure you must miss her so much this time of year especially.
      Thinking of you,

  4. SIF! I’ve missed participating on your blog (but I get a fix by reading your lovely book, so there’s that). Sorry to have not commented in so long; I’m still a faithful reader.

    You have done way more than many people without MS have. Your dad would be proud.


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