"I have been volunteered by the committee to give the first Iris Hazel Memorial Talk, but first a few words about Iris. I never met Iris but we had been in regular contact by letter after she joined in 1987. As you all know by now we became the main beneficiary in her will. We intend to remember this gift by Iris with a light hearted talk at our future Annual General Meetings. It is open to any member so, give it some thought for I would like to pencil one of you in for next year.

In the meantime unfortunately you will have to put up with me. Rather then talk about how the charity was formed for I think this is common knowledge now, I will base this talk about how being involved with the charity has changed by life and the sometimes amusing incidents that have happened to me over the years.

People who know me well will know that I am very shy and speaking in public has never been easy for me. My role as chairman through these years has made me overcome or hide these shortcomings. I have a memory of a sieve and the attention span of an amoeba. I have also managed to conceal with grateful help from Irene and Paula my useless recollection of names, dates, phone numbers, car registration numbers, birthdays etc., etc. I’m completely hopeless. My short-term memory is just as bad. I am told this is because I am artistic and have a creative mind. This excuse is good enough for me! However, without being too self-demeaning my other faults I have put to good use such as a bad temper, aggression that I have acquired from the fact of being vertically challenged and my stubbornness. These traits have proved invaluable in not accepting defeat while working for the charity. Sometimes being a muttonhead does help!

Now you know how I tick I shall now tell you how it has been put to good use. When Irene and I started the group the first thing we needed was a typewriter. My mother worked for the Inland Revenue and at that time they were going computerised and we bought our first machine from them for £10. Fortunately, Irene is a trained typist but she still had to decipher my long hand. Our first newsletter was also our first major hurdle. We had no funds to have it printed so it was a case of pestering local offices near where I work to see if one would photocopy pages one and two while another office photocopied pages three and four and so on. My contribution was to staple them together. As you can appreciate this soon became impractical for the work and membership was growing. We then moved on to using a friend’s copier and this became Irene’s job. This was my first bit of charity chairman delegation. However, even this became difficult as the Group membership grew. The next move to get the newsletter printed was aided by my brother-in-law, Fred. He was night manager for a distribution company and I was able to slip in with the night shift and use the companies’ photocopier through the night. By now I had lost the art of delegating and getting a good nights sleep. This proved okay for a few issues until I jammed the machine. Unable to fix it meant that I could not risk people’s jobs in the future after Fred managed to bluff his way out of a delicate situation to his bosses.

It was now time for our next newsletter and no means of getting it printed. At this time and it must have been the late eighties there was an economic slump and interest rates and businesses across the board were struggling. In particular estate agents were finding the pinch and having to close branches. I realised this was an opportunity not to be lost! I knew a director of a chain of estate agents who had several offices close down. I asked him if we could have one of the copiers preferably donated. He called me all the names under the sun but my cheek paid off with him actually delivering it. We were back in business. We still use the machine but no longer for the newsletters. These days we have to go to printers because of the numbers involved.

As well as producing the newsletter our key fund raising schemes were evolving. We started with our first London marathon with member, Steve King, running for us and Jo Cambridge offering her help and support. At this time we also started the Summer Draw with prizes begged from all and sundry. We held the draw in conjunction with a barbecue in my back garden. Eventually we became victims of our own success for within a few years it had developed into having a marquee and associated canopies. We had music by a folk group led by the late Big Malc Roberts and even a sixties singer. It took a day to set the event up and a day to take it all down and clear up. Enough was enough.

With modest funds Christmas cards were out of our reach until member Rex Ingram who is a printer offered to overprint our charity name on cards. Our business was conducted in the car park on Scrubs Common at the back of the prison and Hammersmith hospital. We must have appeared a furtive pair with the car boot lids up and boxes being exchanged. We nearly had a disaster with them because we did the packing ourselves. We used a system where we wrapped the cards in a cellophane wrap and sealed them using an iron. The problem with this was that the gum on the envelopes in some cases stuck together from the heat of the iron. It was not until a member phoned up that we realised we were in a sticky problem. Fortunately, not many complained. One year we even recycled Christmas cards and committee member, Sue Hindle cut them up into Christmas tags to sell the following year. The demand for cards increased with a growing membership and we took a gamble and had cards printed. However, to keep costs down in those days all my family shared in packing the cards and we spent many nights in the months before Christmas taking on this task. I am sure the family got to the stage where they could pack cards in their sleep. The printers do all the packing now and I am sure the packing role is not missed one bit.
Also in the early days to raise money my late father on a Saturday ran a tabletop sale in the front of my shop. This proved very successful but due to his ill health it had to stop. However, committee member Sue undertook several car boot sales with the stock. Sue and Irene soon realised that I was a liability and was prepared to argue and not haggle with a customer over a 20p item. Car boot sale customers bring the worst out in me, but I still had the job of packing the wares away.

About this time I was offered a box of paperback books to sale. I put them outside of my shop and a new and interesting venture has since evolved which I still gain great pleasure from running. I put a notice up in the shop window that any donated books were wanted and also put up a bit of information about the charity. Well, it has been very successful and I have learnt so much about second hand books. It has taken me quite a few years but I think I know how to price them. I have learnt all about foxed pages, bumped covers, marks and tears etc., as well as first editions and rare books. I research on their values on the Internet and have come across some real gems in my possession. The range covers from Billy Bunter to Sir Walter Scott. It’s great when a nice little earner for the charity crops up.

I had on several occasions spoken to a small group of people on behalf of the charity. However, nothing had prepared me for the size of the audience when I went to Manchester to receive a cheque on behalf of the Group from a church there. I asked Jo Cambridge to come along with me and give me moral support. We had met up in the railway station and caught a cab to the church. We were early and on being driven along the road we noticed a huge church and fete with stalls everywhere. I told the driver to stop off further up the road in a pub car park. I needed a pint of Dutch courage. Well I felt like a man walking to execution. I was so nervous. The church was packed and relayed by speakers outside. I stammered over a few words and I was relieved to pass the microphone to Jo who said all the right words to an appreciative congregation.

One of the reasons Irene was pleased that Jo went with me was she was sure that I would get completely lost. I travelled to Manchester from Southampton and Jo travelled from London. To get back to Southampton I also had to go back via London. The only trouble was I had to get right across the city. Irene knew that I would get lost in the underground if Jo did not escort me and put me on a train at Waterloo. After all these years of visiting London I still have not got a clue of where I’m going. In fact I have been known to vault the automatic ticket machine gates in shear frustration.

I’ve also had to learn a few negotiating skills over the years. Again not one of my strong points. I remember giving a presentation to the hospital management at King’s. I was appropriately suited and booted. Irene came along with Tony our treasurer and my brother Alan who is a solicitor who was there to keep me on the straight and narrow if did not keep within the confides of the charity constitution.

We finished our business by lunchtime and decided to find somewhere to eat. Walking along the pavement at Denmark Hill towards the Elephant and Castle, noticing at the same time a heady smell of cannabis being smoked by people as they walked along, we saw across the road a pub. It did not have a matching curtain in any window and there were notices for karaoke and pub quizzes plus a sign offering pub grub. This was good enough for us and we walked across the road briefcases in hand. On entering the bar all went quiet, the barman stopped wiping the glass in his hands to give us a curt hello. I responded with the same greeting, ordered our drinks and asked what food was on the menu. "Egg and chips, egg and chips and more egg and chips" was the reply. Irene declined but we tucked into what I can describe as good fare. Irene would argue otherwise! The pub activity was now back to normal and after an hour we got up to leave. The barman looked up and thanked us for our custom and wished us a good afternoon. His closing comments as we approached the door were, "I’m sorry if I seemed off hand when you came in but the way you are dressed I thought you were the bailiffs." Of course we just roared with laughter and it made our day. The meeting at King’s is history now and I will never forget the television news coverage that I managed to talk a producer into giving us. The only problem was that the hospital clinic was not set up. When filming began Professor Scott had to borrow a colleague’s office and a nurse became the patient sitting opposite Professor Scott’s desk when the cameras rolled. For six minutes of filming it took a day and a half. We have since had other news coverage and you never know one day some big news will break in the treatment of Myositis and when it does I know the door will open again. Talking about the charity on the radio was also a good form of publicity. Again, it was a very nervous experience especially when you have to be in the studio and live on the air at seven thirty in the morning.

Another plus for me for being involved with the charity is that I have met so many interesting people, many of whom have become friends. Old friends too have been towers of support. Tony and Sue have been mates since teenage days and are godparents to Paula. Tony was always ready to help the Support Group and once we became a registered charity became our treasurer. He has held this role ever since. When I had the good fortune to become a dad again to my daughter Laura we roped in Dr Jo Cambridge to be her godmother. So the ties of the charity are more than just a workman-like nature. We still have the charity posse. These are friends I can call on if we need bodies to turn up at a charity function or to make the numbers up. I have never been let down and we’ve had some great fun on these occasions. The success of the Support Group means a lot to them for they have seen and been part of the fight in getting it established.

I have also had to learn some computing skills. None of us had a clue how to operate them. Thankfully the committee members are all computer literate except for me. If nobody is around to get me out of trouble when I’m using one I just have to shut up shop. On our first machine I managed to wipe out three months work. We have never had a lot of success with the hard ware and programs and the whole system crashed last year. Thankfully, Big Malc the folksinger who was also an expert computer programmer and operator kept us up and running. You may recall at last years AGM I mentioned that Malc who was sorting the system out, was unwell. Suddenly his health deteriorated and a couple of months ago he died. However, when we had the new system supplied Malc managed to come to the office just a few weeks before his death to make sure everything was okay and we had not been as he put it, ‘stitched up’. He was pleased with the set up and I am told, for I would not know any different, that the new system is trouble free and working well and pigs might fly!

Well this has been a brief insight into the pleasure I have had over the years and the benefits have been; friendship, public speaking, writing, computing? Second hand book expert, negotiating, begging and attempting to be the perfect opportunist.

This concludes the Iris Hazel Memorial Talk and I look forward to one of your renditions next year."
I was presented with a beautifully inscribed cut glass decanter for my efforts. We decided at our last committee meeting to present a memorial gift and I’m sure we agreed for it to start next year. You can imagine my surprise when Tony Hindle presented it to me. Even more surprising was that our treasurer was prepared to part with the money to cover the cost!”

Les Oakley
Chairman, Myositis Support Group