In my last syrupy offering, I wrote about the importance of a social network – including but not limited to online networks. I also said I’d expand on the feelings of isolations that can be felt by carers. Here goes…
Today, for the first time, I spoke on the phone with a friend that I’ve only communicated with online. This friend has MS. This friend is also a carer. This friend has just suffered the bereavement of somebody vitally important to them. The loving relationship between my friend and the person they lost was the most important connection between them. But the death also meant my friend lost a big piece of the small network of support they have which helps them cope with their many daily struggles. My friend is so good at managing their own condition plus managing another condition as a carer. However, today’s conversation gave me the over-riding feeling that my friend feels incredibly isolated while trying to contend with everything on a daily basis. Their bereavement has knocked them out of kilter and they’re struggling to re-gain the strength they’ve shown in dealing with the hardships that life has brought them for some years. I hope I was able to give some kind of comfort. I’ll return to my friend later.
After listening to my friend, I couldn’t help but remember my own experiences of isolation. Our conversation revealed many parallels in our lives. Prior to my wife being diagnosed with MS, we both worked for the same department in the Civil Service. We had a circle of friends (albeit they’d known my wife longer than me) with whom we’d socialise on a regular basis. When we gave them the news of a diagnosis of MS, they were initially supportive. A lot of them told us the same thing, “If you need anything, just ask us – even if it’s just a chat”. Disabled people and carers all over the world will have heard this statement or something similar. And I’m sure you know which of your friends you can rely on for that kind of help. What I wasn’t prepared for were the people who I thought were good friends who sank without trace. One particular couple from this circle worked in the same building as we did. They’d park their car near our home, which was only 10 minutes’ walk from the office. We’d have a drink, have a laugh, etc. – the usual things you do with friends. After we told them of my wife’s diagnosis, this couple would still park their car near our home. Yet they’d pass our home twice a day and never knock. They came in to see my wife only once. And that was because they’d passed the house while I was standing on the step waiting for a supermarket shopping delivery. I think they felt shamed into asking to see her. We saw more instances of this kind of boycott during the first year after my wife’s diagnosis. I can’t tell you how angry I’d get. I wasn’t bothered about them coming to see me but my wife was suffering greatly after her diagnosis. How could they do this to her? What sort of friends were they anyway? To abandon her at the first sign of adversity? As the years have passed, I’ve learned to recognised who can and can’t be relied on.
But this behaviour isn’t limited only to “friends”. I was telling the story of the boycotting friends to my family during a get-together. Amid much head-shaking and tutting, I was encouraged to move back to where I’d grown up. I remember vividly the words said to me by one in particular, “Don’t worry, we’ll support you." Support. We were desperate for support. During the three years we lived near them, we saw my family……… twice. Twice. Three times if you include bumping into them in a town centre. You can choose your friends, but you expect more from family surely? I was tired of being let down. I felt very responsible because it was my family who’d promised much and delivered little. This did nothing to improve my increasingly cynical view of people in general. My wife and I were both pretty miserable living there despite the fact that the house we lived in was ideal and that we had breathtaking views from the windows. We decided that we’d move somewhere that would suit us as we’re both "city” people.
Which brings me to the importance of social interaction. I won’t repeat everything from my last post – you can read here the effect that Twitter and the internet in general have had on my life. I want to say this to my friend (who I’m sure will recognise themselves from the first paragraph) : you have so much to confront every day and you cope with it with smiles and love. You face down indescribable challenges with smiles and love. YOU are one of those inspirational people that you spoke about. But you must look after yourself too. Every once in a while, you must be selfish because, if you’re not, you’ll damage yourself. I’m going to tell you something that you’ve heard before – if you need anything, even a chat, just ask. And, because I know what you face, I mean it.
I ran this post past my friend prior to releasing it and she’s happy for me to tell you about her website for her son’s condition – Ring 14.
EDIT: 15.55 25/06 – I feel it’s important to point out that the one family member that was outstanding was my Mother. But, as she’s in her 70s, there is a limit to what she can do. Besides, not being near her now means she can live her life as she sees fit.