Sunday, 20 November 2016

Letter from America

Now that a  little time has elapsed, since the shocking events of the US elections, it is perhaps time to reflect on those events. Consequently I feel it is important to share the moving words below. 

I have been trying to comfort a dear friend who has the misfortune to live in Florida! She is half Cuban, is an MS comrade and shares my liberal/socialist tendencies. The poor girl is beside herself with grief at recent events.  She and her (largely Hispanic) friends, are trying to find solace wherever they can.

She forwarded me the email below, which is really rather beautiful.  It certainly touched me deeply, and reminds me that not everyone in America is busy polishing an AK-47 that is stashed it in the garage.


Who do I want to be in this situation? 

Dear Ones:

Good morning. 
As Beyonce once sang, "We woke up in the kitchen, saying 'How the hell did this shit happen?'"
Oh baby. 
I did not want this outcome. I did not expect this outcome. I did not in any universe imagine that this outcome ever could have occurred — and the fact that I did not imagine it as possible means that clearly I have been out of touch with the hearts and minds of millions of my fellow Americans. I cannot say that I understand them. I certainly don't agree with them. And yet this is the world we wake up to today. 
Every single day, you must face whatever world you have woken up to — whatever that may be. That's the only world you get. You must start there. 
Let me tell you what happened in our home last night.
I settled in with Rayya, to watch the returns — relaxed and certain that we were about to watch a historic and joyful moment: The election of the first woman to the presidency of the United States of America. Then it all started to slide. Then came the stress. Then came the growing anxiety. Then the panic started. Then: FLORIDA. (Always Florida. What are we gonna do with you, Florida?) Everyone I follow on Twitter was suddenly hysterical. Text messages of horror started flying around across the world. (Never have I seen so many "WTF's" fly across the screen of my phone.) The global financial markets began to collapse. Foreign leaders started losing their cool. 
Around 11pm, I found myself in this state: Huddled on the couch in the fetal position, clutching a pillow, eyes wide, speechless, paralyzed with fear. 
That's never good, right? 
I've been there before, and that is NEVER good. 
At that moment, I closed my eyes and asked myself to observe what was going on my physical body — my animal body. What I felt was a sickened stomach, shaking hands, a clenched chest, shallow breathing, a wild and uncontrolled mind, and an elevated heart rate. This is exactly what happens to an animal when it is being hunted.
At that moment, I asked myself, "Is this a helpful response, Liz?"
If I believe that I am here to serve the world (and I DO believe that I am here to serve the world), then how does it help anyone if I am feeling and acting like a hunted animal? Answer: It doesn't help. Feeling hunted and trapped doesn't serve me, and it doesn't serve anyone.
This is when Rayya and I made a decision to turn off every single electrical device in the house and GET REAL. We stepped away from the television, from the social media, from the phones. Because we knew that RIGHT NOW, we needed to find calm. These are the moments when it's time to find out who you really are — and who you can really be.
We lit a candle, sat with each other in quiet prayer for a while, and then we each asked aloud the big question: "Who do I want to be in this situation?"
This is a question that we ask in our house a lot these days. This is a question Rayya has taught me over the years to always ask myself, when shit goes down, or when the world goes crazy, or when the panic starts to rise: "Who do I want to be in this situation?"
This is the question that Rayya and I asked of ourselves six months ago, when the doctors found signs of tumors on Rayya's pancreas and liver, and it didn't look good. I remember the day she went in for her CT scan, to confirm just how bad the situation really was. We woke up that day in a panic. We were both experiencing the standard human response to scary situations. We were undone. We both felt like: "We are terrified and anxious, and we will be terrified and anxious until we find out the results of this CT scan. We will not be at peace until we know what's going on. And if the results are horrible, we will totally fall apart."
But then we stopped, checked ourselves, and we asked, "REALLY?" 
Was that true? Was it true that we could not be at peace RIGHT NOW — even if we didn't know the outcome, or even if the outcome promised to be horrible?
So we got really quiet that day, and we each asked: "Who do I want to be in this situation?" 
The answers came, same as ever:
Once we answered that question, we found our peace. Because THAT PART was up to us — who we would decide to be, regardless the outcome. And once we found our center again, we were able to walk into that hospital with relaxed breathing, clear eyes, steady hands, and resolute hearts. We were able to find peace BEFORE we even knew the results. And a few days later, the results came: CANCER. Not just any cancer, but terminal cancer! But by that time, we were were at peace. We were ready, because we knew who we were. And once again, facing this difficult situation, the only question on the table became, "Who do I want to be in this situation?"
That is the only question that EVER really matters. 
I insist that we can learn — with practice — how to choose our emotional state in all situations. This has to be true. If this isn't true, then we are TRULY AND THOROUGHLY FUCKED — because our state of being is literally the only thing in this world that we can control. 
This is not denial. This is not complacency. This not me cheerfully saying, "Oh well! I'm sure everything will be fine!" Sometimes things are not fine. Sometimes the diagnosis is terminal cancer. Sometimes the dark forces win. Sometimes the outcome is dreadful. 
But all our practices in peace and grace and equanimity and courage are for TIMES LIKE THESE — for times when you do not get the outcome that you want. This is when it matters. When the shit goes down, and the shit goes wrong, and when the shit gets real — that's when the shit gets interesting. That's when the test comes: Who will you be now? Right now. Right this moment. Because that's the only part that is up to you. 
So last night, Rayya and I decided to go to sleep without waiting up to find out who won the presidency. We decided to keep the phones off, and the TV off. We decided to step away from the burning vehicle of global panic. We decided that — when the world is trampling itself in a stampede of fear and anger — we will not join the stampede. In the same way that we decided six months ago to find peace in our hearts BEFORE we got the biopsy results, we decided last night to find peace in our hearts BEFORE we got the election results. 
We prayed and mediated and coached each other through until our hearts and minds and bodies were at peace. Then we woke up to THIS world, and the same question as ever: "Who do I want to be in this situation?"
Decide who you will be today, Dear Ones. RIght now. DECIDE. You can do this. This is what all your training and practice has led you to. Show the people around you what a calm and peaceful strong mind looks like. (Trust me, they need it. They already know what a panicked mind looks like; show them what a calm mind looks like.) Ask yourself again and again who you want to be, and believe that you can be it. 
Nobody gets to take your emotional state away from you, unless you give it to them. 
This is how you lead. This is who you are. This is how you BE. 
Here we go. 


Sunday, 16 October 2016

I am a Shrew and Proud of It

October 2016

Shakespeare would have thought me a shrew. A what, you ask? A small,
furry animal? No. Nowadays we would say a woman with 'attitude', a bit lippy, mouthy, gobby (or, if feeling particularly uncharitable a bit of a 'gobshite'). The Wikipedia definition of a shrew says,"the figure represents "insubordinate female behavior" in a marital system of polarised gender roles that is supposedly male dominated in a moral hierarchy. " Clearly, the shrew and the feminist are sisters. 

In medieval England a woman could be prosecuted as a nag or 
scold and sentenced to public humiliation and torture by wearing a 'scold's bridle', an iron muzzle in an iron framework that enclosed the head. A bridle-bit (or curb-plate), about 2 inches long and 1 inch broad, projected into the mouth and quite literally, 'held one's tongue'. 

 'scold's bridle'
As a child I was not especially troublesome, but I was fascinated by naughty girls.  Favourite books were the My Naughty Little Sister series. 
My Naughty Little Sister book series by Dorothy Edwards
 A favourite movie was the black and white 18th-century historical drama, The Wicked Lady which featured a dashing aristocrat, played by Margaret Lockwood, with her secret identity as a notorious highway woman.

Margaret Lockwood as the Countess
in  The Wicked Lady              
Margaret Lockwood in her hair highway woman disguise

My real life naughty little sister and I were co-conspirators in most things. We had a secret club, the wigga-wigga club. If one was in a naughty mood, making the secret sign to the other sister, was a signal to get together in private as soon as possible, in order to hatch some mischief. 

This may or may not have involved the 'witch kitch', a hidden and private area of the front yard, where low walls at a convenient child's waist height facilitated the cooking up of all manner of disgusting potions in stolen cooking pots. Dried up dog poos were collected from the pavements and crushed up with poisonous holly berries and curry powder, pilfered from the kitchen.  Adding water then made a delightfully poisonous and gloopy potion, which could then be flicked at the kids next door, or spattered over the next door neighbours'  windows.

I remember being taken to see the 1967 version of The Taming of the Shrew starring Richard Burton and a luminous Elizabeth Taylor.  Most of the action involves the highly entertaining misbehaviour of the fiery Katherina, the shrew.  However, the story ends with a downtrodden, exhausted and compliant Katharina who has been 'tamed'. This little girl felt thoroughly cheated, and wanted her money back.
Elizabeth Taylor as the fiery Katharina in The Taming of the Shrew

I think I was born a feminist. Only I didn't know it until, after a stormy and rebellious adolescence (oh my poor mum!), I reached Manchester University in 1982 where I became politicised.  On finishing my degree, I co-founded a 4 piece women's theatre company called Red Stockings, touring agitprop feminist cabaret throughout the North West and then nationally. Our administrative HQ was in a women's centre, the sumptuously converted childhood home of Sylvia Pankhurst, the Pankhurst Centre. According to the zeitgeist of the decade, I merrily campaigned and protested my way through the '80s. 

The role of women in society has changed immeasurably throughout my life so far. A recent phenomenon has caught my interest – the bitch-slap. One of the carers where I live I regard as the World Authority on this matter, so I   asked her,  "What is the difference between a slap and a bitch-slap?"."Oh a lot", she said. "Wid a bitch-slap dere's a backswing.  Dere's a lot more force. We're talkin' vi'lence!". Fascinated, I probed a bit further, "And can you bitch-slap anyone, man or woman? ". "Yes, but usually it's men, cos dey need keepin' in line. De only peops ya don't bitch-slap is children". The bitch-slap is not gratuitous violence or administered in the heat of the moment. Rather, it is a considered punishment which has somehow been deserved. Moreover it is a singularly female expression of displeasure. Strange to think that not so long ago, just punishment was purely the domain of men and never women. A bitch-slap would have been extremely unseemly and un-feminine. 

Oh, how the tables have turned. The shrew has finally used her sharp little teeth.

Henrietta Whitsun-Jones

Tuesday, 20 September 2016

Why Risk is Worth It

September 2016

I really enjoy taking risks. It's just part of the blueprint I was born with. I am also a natural rebel. This means that I hate rules of any kind. Show me a rule of any type and I will want to smash it up and break it. On principle. As you can well imagine, this has gotten me into trouble at various times throughout my life.

I guess part of the reason that I like risk is because I am so familiar with it. I have spent my working life as an artist, in my case as an actor. Step out onto a stage, and no matter how many times before one has said those lines, almost anything can (and sometimes does) happen. As an actor, one is taught to embrace and welcome risk. The moment actors stop taking risks, is the moment that the performance becomes dull, listless and tired. So I suppose it is that risk to me, is the spice of life: some level of it is necessary in order to live a rich and colourful life. Think how boring and dull life would be, without it.

I think this is why I often have a problem with Health and Safety (H&S which I call Hell and Samey) which seems to want to eradicate risk from our lives altogether. You only have to say the words 'H&S' out loud to me, and I feel an instant rush of blood to my face and neck. My hackles are on 'alert' mode.

This seems to happen to me fairly often these days as I live in a care home, which is by definition, a very risk-averse and highly regulated environment.  There is a plethora of regulations and legislation that the home must comply with. That need not, however, necessarily include me. I must remember that I live with some people here who unfortunately cannot make decisions in their own best interest any longer. It is these vulnerable people that the rules and regulations are there to protect. Not me.

To give them their due, The management have always been sensitive to the fact that I am an intelligent woman with full capacity, who is strong-willed and has opinions of her own. Signing disclaimers, in order to protect the company, has become a way of life.

Around 5 years ago I jumped out of an aeroplane at 15,000 feet. This was in order to raise money for the Centre. It proved to be quite a worthwhile stunt, as I managed to raise several thousand pounds. Would I do it again? You betcha! I only wish I was able to jump out in my wheelchair. What a great photo that would make!  Not to mention some great publicity for the Centre. Especially now that I am a middle-aged woman in poor health and in a wheelchair: life has become  far too sedate and 'safe'. It needs messing up a bit.

There is usually a nugget of truth in an old axiom."Nothing ventured, nothing gained", is an old saying that this applies to. For if you make an attempt, you risk failure. However, if you do not even try then you will never know the untold riches that you may have won.

I know which I would prefer.

Thursday, 15 September 2016

Warrior sisters

September 2016

My beloved little sister and I share something. We both have MS. She has been living with the diagnosis since the tender age of 19, whereas the bomb didn't drop on me until the age of 42.

But there the similarity ends. My sister says that whilst she got the skimmed milk variety, I ended up with the full fat version of the disease.  She has the relapsing-remitting form: I have the more aggressive primary progressive type.

Between us we have 50 years of experience in managing our MS symptoms and fatigue (34 years in her case, and 16 in mine). We have had to learn the art of working within our limitations, whilst still achieving our objectives and living a productive life.  The learning curve has not always been easy.  Many a time, we have been on the brink of doing something, only to be disappointed by a spell of illness at the last minute.  In my case, the symptoms are constant, but slowly and steadily worsen over time. No sooner have I adapted to certain capabilities, then the goal posts shift, and I have to start all over again with a reduced set of circumstances. In my sister's case, the only response that is effective during a period of illness, is complete bed rest. Literally to stop everything and rest.  This is difficult for her as she has a young son to care for. Meals must be cooked, clothes must be washed and a child taken to school. Life does not stop because mummy is ill.

The area of parenting is the only one where I have sometimes felt a sense of envy towards my sister, given our different illnesses. Whereas she has been able to stay at home and parent her child as she thinks fit, unfortunately I have not. I have had to leave my home and live in a care home, and watch ruefully from the sidelines, as their father makes repeated mistakes.

There are upsides though, to this situation. I get to enjoy their company without having to police their lives as a parent normally would.

Warrior women are my favourite kind of chick.  I am extremely fortunate that both my sister and my daughter are this kind of woman. Gutsy, feisty and not afraid to fight for what she believes in, yet only punishing the guilty, never the innocent. It would be difficult to put into words how much I love, admire and respect them both.

I am very fortunate to have them in my life.

Sunday, 4 September 2016

MS Cannot Kill My Creativity

It is true to say that I have not touched this blog in a long time. This is in part because everything has become more challenging for me as my MS progresses. However, MS cannot kill my creativity Yes, it makes it more difficult for me to express it. But it is part of me. Somehow or other it will be expressed by hook or by crook. Unfortunately and, sometimes it is hard to use a mobile phone/tablet for writing. So the blog is likely to be less frequent in future. Less frequent, but perhaps better.

My creative juices have also been otherwise employed: I'll have written a Christmas panto-style entertainment for the nursing home where I live. I am hoping that this will be performed at Christmas parties. I will offer to direct, which would be enormous fun for me.

I have also been completely immersed in designing and creating a garden. The nursing home allocated me my own patch of garden within the communal grounds, and gave me permission to develop it as I wished. I used grant money from the MS. Society to fund the plants and hard landscaping materials.  Labour was provided in-house free of charge.

My intention was to create a Mediterranean gravel garden, suitable for a very dry and partially sunny plot. A maintenance free garden that would need no constant watering.

I also wanted to create a shady patio beneath a wild plum tree: a refuge from the harsh Summer sun, which my MS hates.

The garden has been really fantastic and has made my  summer. Best of all, it has been a great social space in which to lunch and spend time with friends and family.

One of the things I adore about gardens, is that they never stand still and are always changing. Already I am hatching plans for changes and improvements that I want to make next year. Gardens link past, present and future, melded together by the beauty of nature.  And they're great places to eat too!

Henrietta Whitsun-Jones

Monday, 5 October 2015


Mindfulness has been my constant companion over the past 2 years.  It has been both a rock to cling to in a storm, and a place to bask in the sun when the weather is kind.

I meditate most mornings, with only the sound of birdsong as a soundtrack. I find it sets me up for the day ahead, rather like a strong cup of coffee.

I freely admit that I have lost my way at times.  Fortunately for me, our own Trustee and Mindfulness coach, Sarah Jones, has been on the end of a phone, ready to give me a Mindfulness coaching session and set me back on the right track again. In the real world, this kind of one-to-one coaching would cost hundreds of pounds. We are very fortunate at the Centre to have Sarah as a Mindfulness resource (I know she wouldn't mind me calling her a 'resource').

At times, this journey has been a somewhat lonesome road. Looking back, I think I would have preferred to take the trip with a group if that were possible   I am told that the energy one experiences in a Mindful ness group is very different to being by oneself, and is very nurturing. Looking for a group will definitely be my next step.

I cannot now imagine life without Mindfulness. It is now a sustaining force in my life, the glue that binds all the different parts of my life together. I would encourage anyone to embark on a Mindfulness adventure for themselves, for it is truly the adventure of a lifetime.

October 2016

Tuesday, 22 September 2015


I first posted this nearly 2 years ago on January 14th 2014 as WITH NEW YEAR IN MIND (hence the Christmas theme).  I want to republish iit as Mindfulness courses are still ongoing at the Centre, thanks to Trustee, Sarah Jones. I then intend to publish an update on my Mindfulness journey. 

But first, let us go back in time.  Moreover,  I believe this is as true today as the day I first wrote it ..

January 2014

So it's all finished with for another 12 months. My sister texted me the following day to say "thank f-- for that!  It's all over for another year". 

Whether you are sad or delighted depends on several things, such as what sort of relationship to and history you have with Christmas; this seems to relate mostly to what your childhood memories of it are like. Those people who had great childhood Christmases tend to carry this on into adulthood.  The reverse is also true. This then gets passed down to their children etc, etc and so the cycle continues

At this juncture (after Christmas and around New Year) I typically find myself doing two things: reviewing how the Christmas just gone went, and looking forward into the new year and sketchily planning out a few things I want to achieve during the first few months of the year.  So I look back and then look forward, at the same time. I am quite sure that I am not alone in doing this.

This Christmas just gone was the best one I have had in years.    This, despite it being almost a year exactly that I have been living away from home in a nursing home.  The prospect of Christmas was looming large and making me quite tearful and full of dread.  I was gearing myself up for a disastrous first Christmas here. A travesty of the warm and homey Christmases I had now lost forever. I had constructed the complete, disastrous scenario that was to take place.

Then I thought no!  Hang on a minute. This could, if I let it, be the best Christmas in ages because we are all free.  Free of all the limitations of looking after a sick person that being here, in a nursing home, has taken away because it is someone else's responsibility. For the first time in ages we could concentrate on enjoying being together and having fun.

And guess what, we did.  It really was the best Christmas we have had in a long time
But how was I able to achieve this quantum shift in perspective?  The answer is very simple: through something called Mindfulness that I have been introduced to through the Centre. 

What is Mindfulness then?  It is a toolkit of techniques that you can learn, including daily meditation, which together train your brain into a new way of thinking that is far more positive.  It is a technique that has been honed over many years into an eight week course and is delivered through a book and CD which are used in conjunction. The book explains the theory and the CD delivers the daily meditation practice which you are guided through.  It really was as simple as that  [for me] but as with all things it is the simplest things that are the hardest. And so yes,  I found it very difficult at first.  I found it hard to concentrate and that my mind kept wandering. Perseverance is necessary but improvement and therefore encouragement come quickly.  It can also be very helpful at times like this to have someone else to be in touch with in order to compare notes and offer mutual support.

My personal experience has taught me that what you really need in order to take up Mindfulness most successfully is a willingness to change and an openness of heart and mind.  You need wholeheartedly to commit yourself to those 10 minutes a day and ideally to finishing the eight week course. If you can do that then the changes just seem to flow by themselves and to happen almost effortlessly

I see no point in going into great detail about the process. Firstly because this will be different for everyone so your experience may be quite different to mine, and secondly because this is done so much better by Mark Williams, the author of the book 'Mindfulness: A practical guide to finding peace in a frantic world'.

I initially took up Mindfulness as I felt I needed some support over Christmas in order to get me through a particularly difficult and emotionally draining time.  To make matters worse a doctor had temporarily removed my antidepressants with disastrous results and at the very worst time of the year for me.   I found myself ricocheting almost uncontrollably between states of red hot anger and sad weeping. 

I had heard that meditation had the ability to raise the levels of serotonin in the brain, much as antidepressants do.  So originally I was looking for a replacement for missing antidepressants to get me through Christmas. I didn't realise what a life-changing thing I had stumbled across.  Mindfulness has already delivered this and much more besides and I am still only early on in the process (at week four of eight)

I have found that general benefits include: improved creativity and improved concentration and focus (less likely to be distracted), better time management and much better relationships. Oh and food tastes great!  As if I never tasted it before
MS-related benefits include less fatigue and better fatigue management, improved memory and improved sitting posture.

I have learned a lot about myself; what a control freak I am and how difficult this can be for a wheelchair user with MS who cannot control her physical environment very easily and how this can lead to very negative frustration.   I have found out what enormous benefit there is to be able to let go of control when I choose to. This is a crucial point about Mindfulness; it does not change your personality, merely allows you to be aware of the choices you are making and helps you to make better ones. 

I definitely intend to continue with the Mindfulness course and want to take these learnings forward into the new year.  If you are interested and decide to give it a go, then the good news is that you can join a class and learn in a Group at the Centre which has the advantage of giving you the support of a group of people who are experiencing similar issues to you. Teacher/facilitator  Sarah Jones will be running classes in the new year so keep an eye on Centre noticeboards or leave a message at Centre reception. If you have any questions Sarah would be delighted to talk to you shecan be reached on or call 07973 156331. There is no charge for members except the customary donation

Mindfulness has been proven to be of enormous benefit to people with long-term illnesses.  You may not be able to cure the MS but you can certainly change your attitude to life and improve the quality of it.  I would highly recommend giving Mindfulness a try.  After all you have absolutely nothing to lose and potentially everything to gain. 

January 2014/September 2015

Henrietta Whitsun-Jones