My Storytelling Dream

If you’ve been following my blog, you will know that I love to tell stories.  I began a year ago, when I joined a brilliant storytelling club called, ‘The Success Stories Club’.  There is a page for it, right here, on WordPress The Success Stories Club

Last weekend, I performed at a fundraiser, for ‘Maggie’s Place’, which is a wonderful venue in Manchester, situated near the famous Christie Hospital, that is dedicated to helping, and supporting, people with Cancer, and their families and friends.  The picture I’ve posted, taken at Maggie’s, doesn’t show me, very well, but I am the third lady on the left.  The other people are members of our storytelling club.  The lady who is first on the left, is the club’s founder, Sharon Richards.

I really enjoyed performing at the fundraiser, and it reinforced a dream I have been having, about becoming a professional storyteller.

Once again, if you have been reading my blog, you will know that I have medical conditions which restrict me in many ways.  I cannot recognize faces and the reason I know who Sharon is, in the picture, is because she wears glasses, and I know that she posed for the picture.  I have all kinds of ways of recognizing people, but they are not foolproof, and it is always a strain for me, when I am interracting with other people.

In my last blog post, I told you of other medical problems I have, because of my Tuberous Sclerosis and Fibromyalgia.  Including confusion, memory-lapses, short term memory problems and Chronic Fatigue, so a conventional job is impossible for me.  I could not man a shop’s till all day (or even half a day) take money, give change, and talk to the customer.  I have tried, and it’s impossible.  I also, couldn’t type on a computer all day.  It would be too exhausting

A few years ago, I thought of setting up a jewellery business.  I make jewellery as a hobby and thought that I could sell it online.  Needless to say, it did not work out.  Some websites are free, but they are not good ones.  To have a website which people can find out about, you need to advertise it, and have a good domain name.  To set up a suitable site was all too expensive, for someone who doesn’t have much money in the first place, and no one visited my pathetic free site.

I tried hiring stalls, at various events, but did not make the money back that I had paid out.  So although I tried to become self-employed, so that I could come off the benefits, I could not succeed.  Hosting jewellery workshops is not an option, because I experimented, by holding a free one once, to see if I could manage to do it.  About 15 women showed up and I tried to show the clients what to do, answer them when they shouted to me for help.  Then go and help them.  The brain-fog descended within half an hour.  Workshops are a no no for me, I’m afraid.

But I am good at storytelling!  I can also sing.  I was trained to sing by an opera singer, when I was a teenager.  When I was young, I performed in armature operatic societies, and when I atended church, I always itched to perform.  It is something that seems to be in my blood.  People have always said that I am good at it, and I know I come to life on a stage.  My sister called me an attention seeker because I love to perform, but she didn’t realize that when I am on a stage, I am living.  Otherwise, I am just existing.

I think that, one reason I can tell stories, or sing, to an audience, is that the interaction is not the same, as talking to them directly.  I look into the audience, I make eye contact, but while I am talking to them, I do not have to answer questions, or perform a complex physical task, while I am talking.  I am just standing there, telling my tale.

So, I am now dreaming of becoming a professional storyteller.  Once I can get a story into my long-term memory, it stays put.  The difficulty, is getting it there.  But since I write my own stories (I never look up something online, or perform one that someone else has told) I have an advantage.  It is my tale.  I can practice it in the peace and quiet of my own home, until I know it by heart.

A few weeks ago, I told a story round a campfire.   I wasn’t paid as it was a club event.  But it showed me that I can perform to different audiences.  While I was telling my story, there were motorbikes outside the venue, and I carried on telling, even though I almost lost my place.  I was really proud of myself and it gave me such confidence.  At Maggie’s Place, I told the same story twice, in two rooms.  One lady complimented me, and others said they liked my story about a pregnant woman, her unsympathetic hubby, and a hypnotist.

Soon, our club will begin making videos.  When I have videos of myself, I will post them on here, and you can hear me tell stories.  Including the one mentioned above.  Hopefully, the YouTube videos will get some exposure and hits.  It’s one way I can get myself promoted and (hopefully) begin getting bookings.  It would be wonderful if, someday, I can call myself a professional storyteller, and no longer be classed as a sick woman on benefits.  That is my dream.

I will post again soon.

Love to all my followers, from Marilyn

 

 

 

 

 

 

 

 

 

 

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Invisible Disabilities

When I began this blog, I mentioned that I am disabled.  But it’s not the kind of disability you can see.  It is the kind that people can’t tell you have, so it causes all sorts of problems.

The biggest problem for me, is that I can’t work, much as I would like to, but when you are relying on the benefit system, for your financial security, it is a tentative situation, to say the least.

My husband also became disabled, after working hard for 40 years, and destroying his body with heavy lifting.  Recently, because we don’t have much money coming in, he contacted The Works and Pensions, because we had been advised, by Welfare Rights, that I could be included on his claim and that we might get a bit more money than the £109 per week we were getting.  But when we contacted the DWP, I bet none of you would guess what they asked us to do!  They insisted that we send bank statements, dating back to 2014, with an itemized listing of what we had spent our cash withdrawals on.  This is because, since 2014, our savings had dipped, well below £16,000, and they wanted to know why that was?

It is obvious to anyone who isn’t a moron (so what does that say about the DWP) that our savings had decreased, because, the small amount of savings we had when Alan came off work, were accrued while Alan was working.  Since he’s been ill, we have never been able to add any money to the two ISAs, but we have had to replace broken items in the house, also, we have gradually replaced our single-glazed windows with double-glazing, and we have had to spend money on anything else that crops up in a normal household, like repairs to the house etc.

We feel that The Works And Pensions have behaved diabolically, for even asking us to account for money that they never gave us in the first place, and we did not spend everything at once.  We still have some savings left, because have been careful with our spending over the years, knowing that there is no way to re-replenish our money and that the savings have to last us all of our lives.

If things had stayed the way they used to be, before David Cameron and Nick Clegg made things so hard for disabled people, I would have been on my old age pension now, as I am 63 years old.  Because of their meddling, which seems even worse under Theresa May, I can’t get it until I am 66 years old.  Alan will actually get his pension before I do.

“So why not just go to work”.  That’s what people might say to me.  My answer is, ‘Chronic Fatigue Syndrome’.  Now this doesn’t sound like much when you say it, but it is one of the most debilitating things you can have, and the problem is, no one can see it.

Chronic Fatigue Syndrome is not a condition in it’s own right.  It is a symptom of many other conditions.  The ones I know of are:  Fibromyalgia (which is, itself, a misunderstood condition) M.E. (another misunderstood condition)  Lupus and Tuberous Sclerosis Complex.  I am sure there are other illnesses, which have this condition as a problematic symptom.

Anyone with Chronic Fatigue will recognise the metaphoric analogy, of the daily cup of liquid, which runs out during the day as we drink from it, and can never be refilled until the next day.  First of all, we wake up exhausted, despite the amount of sleep we have had the night before.  During the day, as we attempt to do our normal things, we get even more exhausted.  We have to sit down regularly because dizziness and feeling faint, overtakes us.  We feel like we have just built a motorway, even after just a short walk.

We have very bad memory and concentration problems, because our brains are working, as though through thick sludge.  Speaking for myself, I even forget how things work, like the oven or the microwave.  Even typing out this blog, I have had to plan it in my day, because when I have finished, I will be spent and will have to rest.

The other thing I have to mention to you is, we can not get used to a busier schedule, as people without Chronic Fatigue can do.  It is not a case of, getting used to going out to work, so that you get better at it.  Believe me, I have tried.  I even undertook volunteer work to test how I would be.  I really gave it my all, but I started to get bad tempered with the customers at the charity shop where I worked.  There was one particular time, when I had tilled up a lady’s items, she suddenly went away and grabbed something else.  She took me off my train of thought.  I had to re-adjust and till up another item.  This doesn’t sound hard to most people, but anyone with concentration problems will understand how I felt.  I am completely unable to multi-task, or deal with unexpected situations.  I just become so confused.  That day, I just panicked and had to finally admit that I could not do a normal job.

I love to go out and perform and tell stories.  It is something that I do, occasionally, and it gives my life meaning.  It means that I can achieve something despite my limitations.  However, on the days when I tell a story, or sing a song, I have to do nothing else for the whole of that day, otherwise I would just become confused and would be unable to think straight when I am performing.  I have to save my daily cup of liquid, for that moment.  I have to practice during the times I feel able to do so, and it can take me a month to learn something off-by-heart.  so you can plainly see, I could not go to work every day.  I would not even last the week.  Believe me, I only wish that I could.  As well as Chronic Fatigue, I have problems with my balance now. It’s not good, but at least it is something that people can see.

This blog today, is dedicated to all of those with invisible disabilities, whom others dismiss as hypochondriacs, or simply, do not believe.  I have Tuberous Sclerosis Complex, which I have had all of my life, and when I was about 50, I was also diagnosed with Fibromyalgia.  If you have an invisible disability, I know precisely how you feel.  I know you are not “putting it on”.  I wish to tell you, you are not alone.

 

 

 

Watch Your Step, At Sale Water Park

Hello again!

I want you to know that I am usually a pleasant person.  I don’t always complain about things.  I know a woman who complains at the slightest little thing.  For example, she ordered tea in a cafe, and complained that it didn’t come in a china cup!  Me…  I don’t care what kind of cup the tea is in, as long as the cup is clean, and has no cracks.

But I have, very recently, had cause to complain, and my complaint is about the tourist attraction, Sale Water Park.

It is a beautiful place.  There is a lake, a Visitors Centre with a cafe, and a nice restaurant halfway down the side of the lake, called The Boathouse.

Anyway, the Manchester Metrolink Trams, now run to the Water Park, so yesterday, because the writing group I attend (Sale Scribblers) was cancelled, I suggested to my husband, that we go on the tram to the park, for a day out in the sunshine.

Well, the first bad thing that happened was that the toilet at the Visitors Centre, was blocked up.  The woman in the cafe was apologetic, but, even though I have a walking stick, she refused to let me use the staff toilet.

“We’re not allowed to let customers through the kitchen, because of the hot pans.”

but who was to know? I certainly wouldn’t have said anything to anyone, and her boss wasn’t there to object! Besides, there should not be just one toilet in a busy tourist place!  She could have just let me use the loo, instead of telling me to walk down to the restaurant, and use the one in the water sports centre, attached to the restaurant.  But that was just what she told me to do!

So I had to walk to the next loo.  It’s actually not that far.  I followed the path to the lake and into the wooded area.  It’s the only footpath there is, and then… I came upon the stepping-stones!

Just as I said, there is no other way to go.  In order to proceed towards the restaurant area, you are forced to go across the stepping-stones.  Now I know that many people do not have a problem, but I do, because my balance is bad and that’s the main reason I always use a walking stick.  I managed the first two steps, with some difficulty, but the third was a step too far.  The space between the stones was too much.  I lost my nerve and was truly afraid.  My husband tried to help me, and a passer by did too, but I couldn’t cross the water.  I managed to get back the way I had come.  Then, the only way to get to the toilet, was to re-trace my steps to the Visitors Centre, and then walk along the road.

The road is dangerous!  It has no footpath, and the cars are coming along all the time, both ways.  So that was another nerve wracking moment in time.  But I got to the toilets eventually, although my day was ruined.

The Water Park is not ‘disabled friendly’.  Because it is a country place, it’s not flat, but there are no ramps anywhere, only steps, that is bad enough.  But the stepping-stones are lethal.  They are often wet, and anyone who is bad on their legs could not cross them, neither could anyone with a pram or pushchair, and if you were in a wheelchair…  Forget it!

This is not good enough, in this day and age.  I am no carpenter, yet even I can see that you only need a thick plank of wood, placed across the existing stones and secured at either end, then you would have a bridge, which would be much safer than those stones!

Where there are steps in the park, there also needs to be ramps, to allow access for wheelchairs and people pushing babies in prams or buggies.

And before anyone says, you can drive along the road, to the restaurant and toilets, let me remind people that not everyone is fortunate enough, to posses a car.  Alan and I don’t have one.  We have to walk or use public transport, so when we used the road to get to the restaurant, we had no choice, but to walk along it, and hope that the cars would not hit us.

Once again.  This is not good enough.  The Water Park could be a great place to visit, if it was accessible to everyone, but it is not.  The problem is, that people just do not speak out, when there is a problem facing people with disability, or people with young children who need to be pushed in prams or pushchairs.  If more people did, I am sure something would be done.  It is a shame that the park is not a better place, for those of us who are physically disabled.

So I have complained, and am trying to get the word out there.  I know this blog is a bit more downbeat today, but I hope you all understand why.

I wish you all a lovely day

I will post again soon

Best wishes from Mari