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Being a father with MS

Open Door - Winter 2001 pages 4-5

By Gary Hetherington

My experiences of MS began about 8 years ago, when I was diagnosed with Bells Palsy. With hindsight it was just the 'tingling' sensation that accompanies MS. Following bouts of double vision and cognitive problems, particularly at work, I was diagnosed with MS. I think the junior doctor who got the results from the MRI scans was more upset than I was. It didn't really impact on me until I thought about my family. How do I tell them I've got multiple sclerosis?

With my wife it wasn't easy, but she is very understanding and thinks things through before reacting. OK, stage one done. Now stage two, my three year old daughter. No, she's too young; I'll wait until she's about five years old.

So I did.

In the meantime, I let it slip to my mother during a conversation, who replied, "What do you mean your neurologist has changed your prescription?" You see what I mean about cognitive problems! It seems I may have put my foot in it. What followed was a series of 'Oh my Gods' interspersed with a lot of jumping up and down. I'm sure that most people with a problem, whether it be health or otherwise, dread the moment when mothers get involved. God bless her!

My daughter Olivia's fifth birthday came and went and the longer I left it the harder it became to tell her. She doesn't really need to know, I thought. Why should I tell her? It wouldn't harm her if she doesn't know? This may be true for many people with MS, but fatigue meant I was beginning to go to bed at every opportunity. I also had what the doctors call episodic symptoms, whereby for a moment I would lose feeling in one of my legs altogether, resulting in a broken foot and torn ligament on one occasion, and a badly bruised arm and ribs on another occasion. Never mind the broken CK glasses.

Following discussions with Jane, my wife, I decided that the best way to tell Olivia that I had MS was to be honest with her and to tell what she needs to know without allowing her to worry about what may or indeed may not happen in the future. The content of the book, My Dad's Got MS, is to a large extent a true story. Olivia and I do go to Anfield when we can. If I am not feeling 100%, then satellite television does make a good alternative to watch coverage of our heroes, LFC.

I have to say in all honesty, that Barbie still comes first in Olivia's list of priorities, but I'm working on her. When she was in her relaxed 'Barbie takes Ken for a drag' mode, I asked her why she thought I was always tired? She said, "Because you're tired, why else?" She was right; I hadn't thought about it like that. I then told her that I was tired most of the time because I had something called MS. "So? My friends Rebecca and Leah are off school with chicken pox," she replied with a sneer. My first thoughts were, "She's going to grow into a teenager." I had to put that behind me and concentrate on the problem in the present.

I didn't feel that it was necessary to continue with the subject any further, as she was only five (she was six in October). I believe that with 'matters of the heart' people will act and react in many different ways. My way may not be conventional, because I always try and see a funnier side to a situation, and some situations definitely do not require a 'black humour' approach. My intentions for the future are to gradually bring her up-to-date with my illness, but not to exaggerate unnecessarily and definitely not to make our discussions serious. Olivia understands now that occasionally her dad will be tired, but it's no big deal. That is how I want my daughter to look at the situation.

Two years ago I was working as a Mechanical Project Engineer involved in running many multi- million pound contracts on bridges, power stations, etc. Double vision, fatigue, tingling, aches and pains and cognitive problems put paid to that. I used to survey structures from great heights and the Health and Safety people deemed this was unsafe. The cognitive effects of MS meant that I couldn't control and plan contracts as I used to and for the first time in twelve years, my sites were starting to lose money. After many months I was placed on a long term sick leave.

To have the carpet dragged from under me was very depressing, but eventually I settled into a pattern, which allows me to sleep during the day and basically re-charge my batteries. I now accept what I have and in fact I now see my daughter far more than I ever did before. So in respect of how MS affects the father / daughter relationship, then at the moment it has improved things. Yes, sometimes I feel quite low, but this is when I have to really work on myself and tell myself how lucky I am to have a beautiful wife and daughter.

My philosophy is that no one knows what lies ahead, so irrespective of your health or finance or whatever, just enjoy life while you can. Make the best of any situation, and if the opportunity arises, introduce a bit of humour. It doesn't do you any harm and in fact it is supposed to be therapeutic. My daughter and her friends think that I am as 'daft as a brush'. But I think I can cope with that!

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