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Comment by Richard Alexandar on April 4, 2012 at 12:04

You're right, Jan. She's one of the irredeemable ones. That's why I've given up in this particular sheltered scheme. Yet, she's quite "respectable" to the outside world. Her trick is to provoke, and not stop.

You've taught me something about bi-polar. I have known several people with varying severities of bi-polar, but they were not able to talk about it. We certainly are lucky in that respect, but it's been hard-won.

I have recently completed a 14 page prose poem called THE NEW DIAGNOSIS. It needs to be presented to the right kind of audience, who could identify the nuances of experience and medical fact. They would also need to appreciate the unusual form I've used. I did once wonder if I should blog the entire poem here, but decided against it.

Anyway, have a good day. Take care, Richard.

Comment by Jan Tchamani on April 4, 2012 at 10:35

I hope you find somewhere where you can feel safe and people are friendly and understanding. I understand about 'absences' - they're part of bipolar too. You and I are probably along the same spectrum - I had petit mal seizures as a child, and used to talk about 'my fizzy brain' - I still have 'blanks' when under duress, and absences of up to half an hour, and forget a lot of things. I empathize with you.

Sounds like your neighbour is one of the irredeemable ones. Also sounds as though she's not taking her medication, having outbursts such as you describe. Poor woman to have so 'lost it'. We're the lucky ones to be able to think, reason and behave ourselves (even if that means hiding away at home when we don't want to risk being out among people).

All the best, Jan

Comment by Richard Alexandar on April 4, 2012 at 10:30

Interesting to hear about your daughter. She has an interesting vocation. 

You make an interesting point about starting a dialogue with other disabled people by using mobility as a topic. I do have to use taxis door-to-door on a wobbly day. Not necessarily because I can't walk, but because It's likely that I will have a series of absences and/or complex-partial seizures, and wander off somewhere. Nobody knows I'm in the middle of a seizure because I just carry on as usual, but unconscious, or with altered consciousness. It's extremely dangerous, because of the possibility of walking under a truck, lol.

Luckily, I tend to know when to be extra careful, and some days just go back to bed!

The funding for a permaculture would have to have come from existing scheme budgets, but I had hoped to get in before decisions were made. It didn't happen. Anyway, I'm leaving this place as soon as possible because my neighbour from hell persists in calling me a fxxxxxg lunatic, and shouting, "You should be in a fxxxxxg lunatic asylum!". If it was a bloke he'd be nursing a sore head by now :-) Why does society wait for a catastrophe before acting?

Comment by Jan Tchamani on April 4, 2012 at 10:07

When Terry and I started the Garden Project here, it was just us two. Now there's a core group of 6-8 and a lot more supporters, making tea, giving praise etc. People may not believe something's happening until they see it start happening! You know how people are - especially those who have experienced a lot of difficulty and disappointment... The first thing may be to look for official sources of support - and funding, e.g. from the Community Chest via your ward office - just a suggestion.

I understand your experience with disability groups, but I still think it's a matter of being a presence there and letting people open their minds to other conditions. After all, seizure conditions do cause mobility problems - in that your ability to go where you want whenever you want is affected. That might be a starting point - starting from a point that people understand themselves. For example, perhaps you tried to go somewhere to do something and a seizure prevented you - anecdotes often get the message across.

My daughter is a neuroscientist, currently on a 3-year funded programme in the department of psychology at one of the Oxbridge universities. I believe psychology and neuroscience are coming closer, and have hope that it's only a matter of time before mental health conditions - and anything brain-related - is reviewed. If, as neuroscientists say, 'brain equals mind', things are going to move forward. Have you read 'The Man Who Thought His Wife Was A Hat'? Fascinating stuff.

I have a close friend who lives in France and she has benefited from a much more holistic approach to her comorbidity. She has 5 different conditions, two of which are related to mental health. All her specialists talk to each other, and they have put together a step-by-step treatment package which even involves a nutritionist. I agree - we need the same approach here.

Kind words - you will always have them. Human beings should be kind to each other. Life is tough enough.

Best wishes, Jan

 

Comment by Richard Alexandar on April 3, 2012 at 20:29

I'm particularly interested in creating a perception of "ill health", rather than separating it into "physical Health" and "mental health". We know that the two are inseparable in real life, interdependent and mutually affective. The more progressive Trusts not only acknowledge this, but work seamlessly with each other at times of crisis.......for example, ina case of co-morbidity, when a person who suffers from a chronic condition comes under the "care" of a different department which has no access to other specialist notes.

I no longer bother with local disability rights groups as seizure conditions are not given proper creedance. These groups have often been started by people with mobility problems, who in my experience, are not interested in much else.

But there are literally thousands of people in Facebook groups, from every corner of the world, building up momentum and becoming more confident. The relatively new NEUROLOGICAL ALLIANCE may be able to jointly muster enough clout to raise standards of neuological treatment....ironically, in a country with world-class neurologists, research capabilities, surgical expertise.....to a good standard nationwide. All it takes is money, and that means political will.

I envy you the garden project. When I was in Todmorden I was too busy setting up OAK (50+) and U3A Todmorden to become involved in Incredible Edible. Since moving to Cambridge I have Proposed to the management of our sheltered scheme that we make the (under-used) garden into a permaculture, incorporating a sensory section, and involving as many residents as possible. But nothing came of it.

BTW, thanks for the kind words :-)

Comment by Jan Tchamani on April 3, 2012 at 18:11

Yes - that was me at the end of the article. I met someone with Tourette's (which I'm sure you know has mental health as well as neurological symptoms) who said the same thing as you. I think I do believe in talking openly about one's disabilities - why not? - and that given enough information and understanding, people will eventually get the message. And that it sometimes takes a lot of talking to get recognition. I'm sure you connecting with such groups will bear fruit eventually. Both within the groups and in your campaigning. I had petit mal as a child, and still get 'brain fizz' from wireless, proximity to humming machinery, stress... It doesn't happen very often, as I self-manage so carefully - can't imagine what you have to go through. More power to you, Richard.

Comment by Richard Alexandar on April 2, 2012 at 22:30

Sounds promising, Jan. Was this the meeting:

http://www.guardian.co.uk/politics/wintour-and-watt/2012/apr/02/edm...

If so, I may rethink my decision not to join any more "Disability Rights" groups. They usually marginalise people who have siezure disorders.