It’s not fair!

Why was I born with so many problems?

It’s not fair!

Why wasn’t I born better looking, healthier, stronger?

It’s not fair!

Life hurts.

I’m too old/young.

I was born at the wrong time for a person like me.

I don’t know the right people.

Adam is 26 and Nigel is coming up 62.

Adam has a degree in politics, but Nigel’s is in Maths (and Adam hated Maths).

Adam is Jewish (kind of) and Nigel is Christian.

Adam works for a [...]]]> Adam has cerebral palsy and Nigel has chronic depression, so we’re both disabled. But apart from that similarity:

Adam is 26 and Nigel is coming up 62.

Adam has a degree in politics, but Nigel’s is in Maths (and Adam hated Maths).

Adam is Jewish (kind of) and Nigel is Christian.

Adam works for a living, Nigel is retired.

Adam has to work at walking. Nigel used to run 50 miles a week.

So we’re different.

But we’re the same in some ways that matter.

We’re both human. We know what it feels like to fight against a major disability. We care about people. And we want to set up a special kind of publishing business together.

We’re both a bit weird and subversive. That’s part of the reason Adam recently jumped out of an airplane for charity. (He had a parachute, and a friend to control things).

 Here’s a random list of words and phrases we published recently which we want to apply to the business we set up:

irreverent,subversive,warm,friendly,human,approachable,unconventional,gently disrespectful,fun,a bit flippant,laughing at ourselves,caring,considerate,a bit weird,reliable,trustworthy,professional,alive,modern,technically knowledgeable,moving with the times,respectful of good traditions,genuinely listening,team

We asked people to comment, to add suggestions. Twenty one of you looked at the post, and not one said anything! Cheers.

So here is our narrowing of the list, and we get three basic areas of feeling we want to express:

• Warm, approachable, caring
• Professional
• Irreverent, weird

and probably in that order of priority.

So how do we create a brand which communicates those feelings?

• We tell our story. Not all of it, but selected bits that hold together, are true, and give the right feel for who we are and why we’re doing this (not particularly for money, though Adam needs to make a living)
• We choose the right name for the business
• We design the right visual image including a logo that can be used flexibly at all sizes and in all contexts (paperback spine through to, er, well, probably not billboard because that wouldn’t be cost-effective, but certainly t-shirt)
• We set things up properly before launch so that:
• at least two books are launched together, preferably three, and they communicate the brand image
• we can handle all communications, whether from readers, prospective writers, or agents, rapidly, personally and supportively - which suggests we need a few more people on the team even though we can’t pay anyone (yet)
• we inform each branch of the media appropriately, and the right time before launch
• we choose the right type of business setup from the start (sole trader, limited company, partnership, limited liability partnership, cooperative)
• We start getting our brand image/story out there now
• We start as we mean to go on, and get people involved, and get to know them as friends
• We get the brand website designed, up and running

We’ll pick up the story again there next time.

And if you like the idea of being involved in any way then hey, just contact me or Adam. If you don’t already know one of us we’re both on Facebook using our names Adam Warner and Nigel Leech, and we’re both based in Leeds.

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They take people who genuinely want to break some form of addiction that is destroying them, typically a drug (often Heroin, Cocaine, or Alcohol) but sometimes less obvious addictions such as [...]]]> A week ago I visited a place called Spacious Places in Leeds (UK) to chat with Graham Fell who is one of the leaders.

They take people who genuinely want to break some form of addiction that is destroying them, typically a drug (often Heroin, Cocaine, or Alcohol) but sometimes less obvious addictions such as gambling or anger. They offer a tough, real, sympathetic, loving, structured, supportive course of at least a year. Sometimes people succeed. Sometimes they don’t. It can be heart-breaking work.

But the people they work with are just that, people. They may have been living on the streets. They may have lost all chance of getting paid work. They may be struggling to survive. But these are people, just like us, with problems. I was lucky enough not to end up out of work and homeless, and if you’re reading this you have probably been that lucky too, but I know how close a lifetime of chronic depression has brought me to everything collapsing round me.

Everything?

That’s loss of family, friends, home, job, integrity, control, health.

Probably I’d somehow have held on to self-respect. At a guess I’d have become even more self-opinionated, even more certain I was right about everything. Now that’s frightening.

And I would have used something, probably alcohol, to make life bearable.

I don’t cope well with my desire to eat too much, snack on chocolate, etc. I already know I’m mildly addicted to alcohol. I just stopped alcohol, completely, some years back. The evidence is that if I ever went back on it I’d be more addicted than when I stopped. And often I’d love a bottle of real ale or a glass of wine or a small glass of Port or …  stop there, kid, and move on. Put something else into your head, mate. Damn, I can smell the red wine.

So I have some understanding of the homeless people around Leeds many of whom drink a lot. They’re me, in a different life.

And yet they can be frightening.

And that worries me.

I sub-titled this blog living with human minds. We all have to do that: live with our own weird minds, and live with the minds of everyone else.

And to understand you I need to start by understanding me, I guess.

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Maybe it has been ME, which stands for Myalgic Encephalopathy, and is also called Chronic Fatigue Syndrome. There’s more information on this [...]]]> The Doctor has typed it into her computer as post-viral fatigue, partly so that if any fresh symptom appears and I see some other Doctor they won’t just pass it off as ME-related.

Maybe it has been ME, which stands for Myalgic Encephalopathy, and is also called Chronic Fatigue Syndrome. There’s more information on this web site: http://www.meassociation.org.uk/?page_id=1685 

Is this what was wrong with me for twenty months? I’ve no idea. I do know that after two bouts of flu in quick succession nearly two years ago I started to experience unusual physical weakness. I couldn’t think as clearly as usual, or think hard for very long at a time. After a while just a slight increase in physical exercise would knock me out the next day - and not in the same way as when younger I’d feel bad after doing too much running or climbing. This was far more severe and was a far more extreme lack of energy than mere complaining muscles. Most recently the general feeling of can’t be bothered to do anything got worse, and recently I’ve written hardly any blog posts.

The Doctor was very sympathetic, and over the course of a year scheduled a range of tests. It felt like I was providing blood samples by the pint. A very pleasant Doctor checked my abdomen thoroughly with ultrasound. She said no, she didn’t ever find her work boring. Rather less pleasantly, cameras were inserted by other Doctors. Now I know a wide range of common cancers which I do not have. Every test was negative. There was no obvious explanation for how I felt, so call it ME until there’s further evidence, and treat it accordingly.

Actually it was quite a relief to have other stuff ruled out, but incredibly frustrating to still not know. Is it all in my head? Am I a serious hypochondriac? Is there something major wrong that only House could diagnose? I already felt rough, little interest in doing anything, serious lethargy, and the uncertainty made it worse. Over later months things felt even worse.

And finally there’s a deeper problem: if you feel like this for long enough you start to give up. Then, even if the ME were to fade, you’d never know because you’ve learned how to experience the symptoms.

The trick is to keep very gently pushing at the limits of what your body will let you do.

And that’s not easy when motivation, energy, and ultimately hope are all so low you have to work at spotting them.

The good news, for me at least, is that about a month ago I did one of my intermittent twenty minute walks too fast without thinking. And. The next day. I. Was. Not. Knocked. Out. Yes, muscles were a little sore, but I felt like getting out of bed, getting on with bits of life. Wooooeeee!

So here’s hoping this is the start of a better year.

And if you think you might have ME, keep hoping, and keep gently pushing at your limits so that when things do improve a bit you’ll notice.

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