Monday, 21 May 2012

Rethink Mental Illness Activist Training Day

I have been to London again!  It was so nice - a two hour journey on the train to Waterloo, then a perfect half an hour walk along the Thames to the Rethink Mental Illness offices on Albert Embankment.  A day discussing important issues in the company of congenial people.  A free lunch.  And then another long train journey home on which to languish lazily, reading and gazing and thinking and grazing...  Such peace. 

I cannot exaggerate the sense of freedom and independence that comes with a day in the big City - well, it has that effect on me, probably because I have become so parochial in the last twelve years or so that I practically never leave the few square miles around my home, and if I do then I hardly ever do so alone. 

My first day in London for a mental health event, back in March, just felt so empowering.  Woman can build!  (Family joke, sparked by something my ten year old said when she saw my friends assembling the table I had bought on our ladies' trip to Ikea.  She watched in wonder before exclaiming in awe - 'I just feel so, like, woman can build!'  By which I think she meant, empowered).

Anyway, I had been looking forward to this event, and I was not so nervous about it as I was the last time, although I had been feeling a bit wobbly at the end of last week and over the weekend and am starting to think this might have been stress rather than the bug I attributed it to at the time.  Who knows...

It did go really well.  I met some great people, including a Rethink Trustee who I had the good fortune to be seated next to.  She was lovely.  Another lady at our table turned out to live very close to me.  She looked familiar, and we realised that we had both attended a local networking event last year.  Small world.

The tone of the event was lively - people had plenty to say, and we all learned something about campaigns, how to organise them, and established what sort of issues are important to us as people affected by mental health issues.  We did some group work, and I offered to scribe, then ended up reading out the thoughts which were pooled at our table.  I enjoyed this, although I did worry whether I had done the job adequately - and still don't honestly know how I came across.  I should have recorded myself - but then I would probably have been really self-conscious. 

I forget sometimes how new all this is to me - a year ago I was still hiding my diagnosis from the world, in fact I was still pretty shy and retiring and beset by nerves.  Now I am attending meetings in London and learning about campaigning... I would never have believed myself capable of giving a presentation like I did today - and enjoying it!  It is all such a huge change.

I do worry sometimes that my experience is so different from that of the average service user.  I suppose the fact is that I am not really a service user - I was once, but I was never dependent on services, in fact I was always eager to get away from them.  Apart from benefits of course, which I didn't like taking but knew I had to, because they protected me from the worst effects of stress and gave me time to heal.

Most of the other activists today (the term activist sounds interestingly edgy, but it basically just means campaigners) are still reliant on services to some extent - I think I am right in saying this - and so when I pitch up talking about how the use of restraint and long term medication needs to be reviewed I must seem a bit off track.  They want to concentrate on services, I want to concentrate on recovery and moving away from the need for services.

The fact is, I feel so much happier now that I am earning my own living - but it has taken me an exceedingly long time to get this far.  So I do understand how others feel - that there is no hope of recovery - and sometimes I think I must be pretty annoying insisting that there is hope, and that I have personal experience of it.  I can completely understand the need for decent service provision, and I think anyone who needs benefits should have them for as long as possible - as I have said on here before, I don't believe in the term benefit scrounger, I think anyone who felt capable of doing a job would do so for the sake of self respect and decent remuneration - if only life were so simple.

And I know some people don't recover from serious mental illness, for whatever reason.  I met a mother today whose son has schizophrenia - he has no other relatives and she is terrified of what will happen to him when she can no longer care for him - it is an awful predicament.  I feel pretty useless waltzing in and saying, 'Look at me, I was ill and now I'm fine!' in this sort of situation.  What help is that?

And yet - and yet, it is true, there is a real possibility of recovery from serious mental illness.  It is just that those of us who do recover from so-called schizophrenia go into hiding, because that is the only sensible way to react to a label like that.  Sometimes I wonder on days like today if I am a bit manic - if I have lost touch with reality and have just got my rose tinted glasses stuck on. 

I was pretty full on - I told everyone how much better I felt about speaking up about my diagnosis - I do, almost all of the time, except that I occasionally panic about the long term effect of all this on my kids.  I hope it will make them more caring, understanding and enlightened adults - I do hope so, so much so.

I also talked about the Hospital Radio Bedside interview and how I had enjoyed it - again, true, except that it threw me when Helen said she wanted the interview to have a positive spin (because the listeners were bed-ridden) and when she asked me questions about my early childhood and education which I really wasn't prepared for (Paul edited these parts out of the radio interview that you find at the top of this blog).

So I was a bit relentlessly upbeat, and then I rushed off at the end of the day to catch my train and didn't even say goodbye to anyone properly.  (Note to self, next time do not run at full pelt along the Embankment towards the train, stopping only to take a picture of Parliament for the kids, and then break into a run again, and as a consequence almost trip over the flagstones and break one's neck.  Instead, say goodbye in a slow and civilised fashion, then saunter back to Waterloo enjoying the weather, the atmosphere, the ambience and the wonderful view.  These trips to London are not likely to be frequent - they should be savoured).

Anyway, what's done is done, and it was a good day, and I am proud that I was able to be there and to contribute.  I shall give myself a pat on the back instead of berating myself for where I went wrong because at the end of the day, nothing is perfect, but I think it helps to look on the bright side. 

However, I do understand that some things really seem not to have a positive slant - I very much recall feeling helpless and hopeless - it was not all that long ago.  There is so much wrong with the mental health system - sometimes it seems so overwhelming.  But we have come a long way - as evidenced today by one old chap at the back of the room, who clearly had lost a lot of years to his mental health problems.  I think young people today have a far better chance of recovery than he ever did - he was probably institutionalised from his late teens and only let out in the eighties with the advent of care in the community.  Poor old thing.

Anyway, if any of those people who I handed my cards out to today are reading this - fellow activists -  it really was great to meet you all, and I hope to see you again.  To the Rethink Mental Illnes staff - thank you for everything - and if you need anybody to come to London again, for anything at any time - I am at your disposal.       
And the best bit of the day?  Paul bringing all the kids to collect me from the station, and getting greeted like a homecoming queen.  Back to reality - and it's the best place to be.


  1. Really enjoyed reading this thank you.

    I too feel it is important to focus on recovery which is often possible.

    Well done on taking the steps to speak out and not hide away!

  2. well done honey x

  3. You should be very proud of yourself you've done a fantastic job!

  4. Thank you all very much. I am enjoying stepping out of my comfort zone after all these years. I do hope I am doing a good job - time will tell. Louise x

  5. Full recovery is our birth right. Getting there is the unique challenge that determines the new paths in our live. Well done. I was also "hiding" a year ago. Now I take my music and message directly to the patients of Psych hospitals. Love