Mike Squire

Mike Squire

Mike Squire: JTSMA Chairman from September 1997 - December 1998

On the death of a friend

Anita Macaulay's e-mail sent to tell people what had happened and some of the e-mails received at the JTSMA in response.

Anita's Email

Anita Macaulay's original email announcement:

It is with the greatest sadness that I have to let you know that Mike, our dearly loved Chairman and personal friend, passed away peacefully early this morning in Solihull Hospital. Mike was one of the greatest people I have ever known, he inspired so many people whose lives have been touched by SMA, and many many others too. He gave so much to all of us at the Jennifer Trust and taught us so much about life and living. He will be so very much missed by all of us who had the privilege to know him. Our love, thoughts and support are with Mike's parents and sister at this sad time - we all wish them the strength to cope with the days ahead. We all loved you Mikey!!
--
Anita J Macaulay 16/12/98

Some of the replies

These replies are in no particular order, in some cases they have been snipped out of longer messages.

.... your sad news was just waiting for me today. I am extremely sorry as I know Mike was excellent in his role for JTSMA as well as a good friend to your all ....
--
Elizabeth Mellor.

I am so sorry to hear this very sad news. My most heartfelt condolences to Mikey's family and friends. He will be deeply missed and mourned.
--
Faye

Please send our condolences .... with heartfelt sorrow ....
--
Fred and Michelle

Thank you for sharing this sad news with us, Anita. Our prayers are with you all.
--
June Price
Living SMArt

.... what sad news. He was a true inspiration to the group and to many people who met him.
--
Kay Davies

Our deepest sympathy in hearing about Micky. Such a terrible time of year; if there is such a thing as a good time of year where death is concerned.
--
Ken

I'm very sorry to hear such sad news! I know Mikey will be missed by all who were blessed to know him! Please pass my condolences on to his family, who are in my thoughts and prayers.
--
Sincerely, Kristin

This is such sad news, thank you for letting us know. Mikey was a great guy...always warm and funny. I will miss him too :(
--
Melissa Richardson

I'm very sorry to hear the news of Mike Squire passing away. I only had the pleasure of a few exchanges of email with him here on Strength-L. I'm sure he is going to be missed dearly. My heart goes out to his family at this time. Rest in peace Mike, see you hopefully when I get there.
--
Mike Cunning

I just want to say that Mike has given me alot of inspiration in nearly all areas of my life social the list could go on for ever.. I've light a candle for him and decided to get as mobile as possible I walked in a wobbly fashion for 50 yards on a walking stick so who knows when September comes ....
--
your's Mad Pat in Crawley

May the Force be with you Mikey.
--
Ray

Please express our deepest sympathies and condolences to the family. We are truly saddened to hear the world lost a kindred soul. Our prayers are with the family.
--
David and Lynne

Really sorry to get the news. We will miss him. .... Will we be doing something in his memory?
--
Love, Sue MC ( See 5th June 1999 entry on the diary page )

Thanx for letting us know. I'll miss Mikey, he was a cool dude :(
--
Tufty

I have just accessed my cumulative email .... and was most upset to receive your letter of december 16 with the very sad news of mike squire's unexpected death.

It was only a few weeks earlier that i bumped into him in the waiting area of the Xray department at hammersmith hospital, where i was also in the line for an XRay and he seemed in his usual effervescent good spirits.

It really was a privelege to know him over all these past years and I was always amazed at his tremendous energy and enthusiasm and obvious zest for life.

I always considered it a particular treat to be able to join the discussion group of the young adults at the annual conference and learnt so much from mike and his fellow travellers about coping not so much with disability itself, but with life in spite of disability. I am sure he lived his life to the full and certainly packed a lot more into it than many an able-bodied, but less inspired and motivated individual. ....
--
sincerely, victor dubowitz

I would just like to say how very sad I was to hear of Mike's death. I had never had the pleasure of meeting him but had spoken to him over the telephone and by email. We were intending to meet up for a drink at some point and talk. I think in fact he was the only person of my age that I knew with the very same disability as myself. I regret that we never got around to it. My thoughts and sympathies go out to his family and close friends at this difficult time.
--
Yours in sadness, Vikash

Running Repairs

An Anecdote about Mike from Sue Walmesley

Anyone who uses a wheelchair will know what an important part it plays in their life -- they will also know that anything electrical or mechanical will always let you down at the wrong moment. Mike's chair's favourite trick was to wait until the Wednesday before Conference, then blow its mind, cause a quick dash to Coventry for me to get it back to our workshop, repaired and back to Mike before Conference started.

About 5 years ago, Mike's chair did one better and waited 'till the middle of Saturday to suddenly start losing speed. By teatime, Mike and his chair were crawling around at about ½ mph. With no workshop to hand there was only one place to carry out running repairs — the bar.

Dan Everard and myself got out our tool-kits, and before long had the rear wheel off, and found the problem was that the braking system was jammed on. While we beavered away at Mike's "rear end" he sat there holding forth with a pint of Guinness in one hand and a fag (cigarette, ed.) in the other. After 15 minutes or so, Dan had done a temporary repair to get Mike through the weekend.

Mike then paid us with two very large scotches. This was the nicest and quickest payment we had ever received, it was waiting on the bar before we had put our tools away! By the way, that temporary repair lasted two years — cheap at twice the price.

Love you, Mike, we will miss you and that chair of yours.

Sue xxx

Cake

This photo was taken at the JTSMA 1998 Awareness Week (Holding-Handsathon).

Out With the Old

Mike's article in Holding Hands when he gave up being editor in October '96
(and the beginning part of Tod's reply).

"After many years, this is my last Holding hands, as has been a trend it is late — my apologies for this, but this is one of the reasons for handing on the baton. Tony Lodge has agreed to run the next round and takes over as editor as from this issue; my thanks to Tony for offering, I think I've told you everything that's ahead of you!

As I left conference three weeks ago, there was a huge gap in my life, for not only have I given up the editorship but also my position on committee after nine years. JTSMA has been a major part of my life, but like any partnership things can get too much and stale, and this is why I need my break - I will be back one day - all fresh and eager and keen!

As I write this my mind goes back to how and why I became involved in JTSMA. It was Vivien Mullett who suggested I join her for a weekend in Stratford at the first conference; I was not convinced that this group, for people affected by "SMA" was for me, as at the time I only knew that my impairment was Werdnig Hoffman (WH) Disease and had been told I was one of only a few! But I went along, got very drunk and was re-diagnosed not by a consultant or professional, but by Geoff Parr who on my telling him my 'diagnosis' looked at me strangely (not just the alcohol!) and explained that WH was a type of SMA, but I could not have that, he suggested I be a type II and on comparing myself to others at that event I re-diagnosed myself there and than and started using the word SMA for the first time.

I had found a new family, I was not a rarity and got very drunk with our Irish friends . . . why else would I have got involved with JTSMA! My thanks to Vivien and Geoff, Anita for getting that first event together and everyone else connected with JTSMA, you'll never know how much you've done for me. My final thanks must go to the one person that most of us have never met, but to whom I know I owe more than anyone else, Jennifer — just look at what you did!

Keep up the good work, Keep growing and raising the cash and I'll see you again soon.

So, now it's over to you Tony, here comes the baton . . . catch . . ."

" . . . thanks Mike; the baton nearly dropped, but I caught it just in time!

I was talking to Mike the other week on the telephone and he kept on laughing every few minutes, which coincided with him telling me of yet another aspect of being editor of Holding Hands.

Hello, I'm the new editor of Holding Hands (stop laughing Mike) . . . . "

Mike's own SMA Email Directory Entry

Written by Mike in Summer 1998.

A Note from our "New Chairman"

Written by Mike in November 1997's Holding Hands

Hi everyone, and thanks for voting me in at conference this year. After my year out I seem to have returned with a vengeance, and just hope thet I can do the job well, see the group continue to thrive and support both members and staff in everything they do.

For those who don't know me, I have type II SMA, use a wheelchair full-time and have recently started g-tube feeding (remember all my runny food demands - well this is the outcome!). I work for a disability rights organisation in Warwickshire as Service Manager and this includes running training courses and supporting disabled people in Independent Living.

I live alone in a new house which I moved into just two weeks ago in a village near Coventry, and employ three full-time personal care assistants. I have been involved with JTSMA since it became a registered charity as a committee member and this has led me to the post of chairman today (also ex-newsletter editor, but Tod is much better - he says creeping because late with the deadline . . sorry, Tod).

Over this year I would like to see the group consolidate its work, over the last few years we have grown immensely and I feel it's time to just take stock of where we are at - I have seen so many organisations trying to run before they can walk and often fail, and don't want JTSMA to be one of them. Also securing the large income now needed to enable JTSMA to continue is becoming more of a worry yearly; society doesn't make it easy for charities to raise those all important pounds and I am praying that by next AGM I can say that 'we have survived another year' but that will not happen without your support.

You have elected me and committee to represent you in the running of JTSMA; but I ask you to tell us what you want, what we are doing well and what we are doing badly. It is vital that we represent the interests of the group, but need to know what the group wants - please remember that we are just 12 other people touched by SMA! Get in touch with me by post, phone, e-mail, fax, visit or whatever and support us to support you - or even just for a chat or invite to an event - I'm all for a party!!!

Finally can I welcome the new committee and thank those who have just stood down, especially Craig for his outstanding work as my predecessor, you left me a good hand, Craig, thanks again.

Here's to 1997/98,
Mike Squire.