This blog began on 1 April. If anyone is still reading it I hope they did start at the beginning: that should put everything into context.
It’s a self-imposed challenge, frankly. A couple of days ago I started wondering if it was such a good idea after all, and so had to remind myself of the original reasons. They were and thankfully still are:
1. History: Many of us over the decades have led interesting and varied lives. Unlike many I haven’t passed the stories and experiences on very much, e.g. to family. Only occasional anecdotes socially; and I’ve never kept a diary. Time after time in recent years friends have said “Write your memoirs!”. That prospect doesn’t appeal, but a trickle-feed of bits and pieces from the past might work.
2. The illness: after the diagnosis in July last year I read reasonably widely about motor neurone disease including a couple of blogs written by those who were suffering. One lasted almost 4 years. Both have now passed away. Though painful to read at times, they were useful if only to provide some sort of forecast. For them and for many sufferers the illness started in the feet or legs or hands. Mine has started in the bulbar (mouth, throat, voice) area, and although there are online forums or chatrooms, and plenty of info on the medical websites, I haven’t found a first-hand account from anyone else whose illness began with bulbar problems. Perhaps this will help.
3. Friends: the last 6 months or so have been overwhelming, not so much because of the disease but because so very many friends from all parts and periods of my life have phoned, emailed, texted, visited, invited me to visit them, offered practical help in London and so on, and that still continues: they will want to know how I am as time goes by. Naturally I would do the same for others if the roles were reversed. Every contact has been welcome – very moving in fact – and I’ve tried to update everyone individually as best I can, inevitably repeating the same information by phone, email, text and suchlike, many times. Periodically relaying the situation in the blog might help with the basics.
4. Current events: as far as I can tell the brain is still working reasonably well, but you’re the best judge of that. Being able physically to chat about things however – face-to-face or by phone or Skype or Zoom – is becoming more difficult as the voice declines. So, putting it bluntly, I’ll try to keep ‘my voice’ going online, and to continue causing trouble wherever I can!
5. The virus and matters arising: no more symptoms so far but there is rather more time to tap the keyboard. And quite possibly others have more time to read, at least for now.
Those were the main reasons for the blog: jottings about the past; info for MND sufferers and their helpers, especially for those with the bulbar problem; keeping friends updated on the main illness points; staying in touch with the here and now; and with time to do all of those things while I can.
Questions: during last week some questions came in by email. I think I answered them all directly but here they are anyway:
- Can I comment on your words by writing on the blog itself? No. Some blogs are interactive, and in fact I ran an interactive one about 15 years ago. It became totally controlling, with people saying all sorts of things online, in public, and expecting me to answer each one. Great fun actually, but I spend enough time at the keyboard already. If there’s anything seriously important you know how to get hold of me.
- Will there be alerts to say you’ve written some more? No. If anyone is interested in reading it then they just have access the site whenever they like, and catch up. I’m not guaranteeing a daily input by the way, although it’s been daily so far.
- Can I pass the blog site on to others? Yes if you wish. It’s in the public domain so technically anyone can access it, but if you know others who might be interested for any of the reasons in my rationale above, then go ahead.
- What’s the meaning of ‘Not Secure’ that appears top left of the screen next to the site address? It means it’s perfectly safe to read, but you shouldn’t give me your bank details or send money to me or do any other risky interaction. Such a pity: there was a plan to establish the David Peace Benevolent Fund … I jest of course.
The result is that this blog is a mongrel (I was about to say ‘hybrid’ but that sounded hifalutin). It’s a multipurpose thing. Might not work but I hope it does.
P.S. Over time there will probably be more about the illness: it’s definitely ‘progressive’. When the blog entries do build up, each will be categorised so that anyone who wants to hear only about the MND experience will be able to click on a tab specifically for those.
[ Tomorrow, MND probably ]