One Long Goodbye

When your son gets hit by a car
20 October 2017
Bad news I was expecting still hurts
8 December 2017

I went to my (huge, brilliant) company conference this week. I don’t tend to go any more. Long journey, long day, too much noise, too much going on, wheelchair kerfuffle, loo shenagigans, solo hotel scariness. Everything.

But this year I suddenly felt conscious I might never attend again, for all the above reasons and more. I have known lots of lovely people from across the business for up to eleven or twelve years now. And even if I wasn’t saying goodbye, it felt like that to me. So I girded my tired loins, dusted a suit down, and resolved to go. (I confess I also knew I could massage my fragile ego with a cameo in a ‘people’ film due up on the big screens, talking about how well the company and colleagues have treated me over the years…). Here’s my green screen moment filmed a few weeks ago.

I got to the conference in one piece and surpassed myself by also leaving in one piece, if shattered. And in between I said a mental goodbye to big, bustling conferences, and more importantly saw some hordes of people I hold dear. I beamed as we shared a hug, a hand shake or an air kiss, though I was crying inside. In the 2,000 strong hubbub of colleagues, I missed more people than I managed to see, but I tried my best.

A progressive disease like multiple sclerosis has its own cruel, insidious way of dealing out crappiness. Over a period of months, or years, or days, you are consciously or unconsciously saying goodbye to activities, to events or to people. Long scenic walks, then short walks. Then any kind of walks. Parties past 10pm. Then parties full stop. Lots of stairs, then any kind of stairs. Dancing. Hopping. Kickabouts, Cooking. Ironing (hurrah!). Doing up top buttons, cufflinks. Pouring hot drinks. An endless list of farewells that just keeps growing…

Sounds sad I guess. Not just for me but for those around me. I am trying to put a positive spin on this but it’s tough. (though see ‘ironing’ above and add ‘unloading the dishwasher’ for good measure). Disability does bring its own gifts, sliding you seamlessly into a parallel world of empathy and love and special people that sometimes blows me away. But it’s so very tough feeling bits of me and my life – our life – drift away. Wonder what’s next?


  1. jana says:


  2. Jamie Jones says:

    My wonderful colleague and fellow MS sufferer Carolyn Barkin put me onto this blog and at 2am I’ve just finished reading the entries from start to inspirational finish.
    I’m probably representative of the majority who have heard of it but not really understood it.
    I’m blown away by your honesty about life with this vicious and unpredictable disease.
    Great to hear that you also appear to work (like myself and Carolyn) for a company run by real human beings! Seemingly quite rare these days.

  3. Thanks Jamie and nice to meet you. Another blog just posted, a bit less upbeat but I'll be back! Yes, human companies and human bosses have a lot to be said for them!

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