My Life of Brian - E17 Art Trail Exhibition, 1st September 2012

When I was asked to exhibit as part of the E17 Art Trail I immediately said yes. I usually say yes to pretty much anything that will raise awareness of motor neurone disease. I started to frame up my prints thinking this will be a doddle.

I went to visit Walthamstow Library to find the best space. I had to find a fairly dark, large area to hang my work and situate an eyegaze computer. The only suitable space was partly in use but I was told that I could use the back wall. I was also told that I couldn't put nails in the wall so after many tweets I found a hanging solution. Gotta love twitter! Luckily, I met two of the Art Trail organisers by chance and I think they could see that I needed help and support. They introduced me to artist, Toby Poolman.

I can honestly say that without Toby my talk would have been dull and my work would have been crooked, instead of perfectly aligned on the walls.

 

Despite an English Defence League march and the police closing the roads around the library, I had a good turnout and really enjoyed the day. I still can't believe that I've had my first exhibition! Here is a transcript of my talk and more photos:

"Hello everyone and thank you for coming. When I was diagnosed with motor neurone disease in April 2000, I never imagined that I would have an art exhibition. In fact, if I'm totally honest, I never imagined that I would have one before I became ill! But here we are, so let's begin.  

For those of you that don't know about motor neurone disease, it's a fatal, degenerative disease with no cure. I've beaten the odds because the usual life span is 2 to 5 years.  I was only 34 and pregnant with my second child on diagnosis. I'm sure that you can all understand the shock and horror that I felt.  

I skulked around for a few years, unable to do much. That changed when I got my first assistive technology computer.  I've been actively raising awareness of motor neurone disease for several years. You may have seen me on a tube poster or in a scary cinema advert!  So, all in all, I was pretty busy, when my lovely friend Hector introduced me to Tobii eyegaze technology. Eyegaze has given me a new lease of life because it's much quicker than any other assistive technology.  Hector told me that I would be able to paint and draw with eyegaze and I was desperate to try.

I had some drawing skills but when I lost the use of my hands I gave up all hope of creating anything again.  I use software called Revelation Natural Art and will demonstrate how I use it soon. It's similar to art programmes on i pads but slightly trickier to use without hands!  Being able to create something again has made me feel much more content. I can escape from my normal life, which can be pretty frustrating and mundane.  I feel as if life is suddenly far more colourful and interesting.

My title piece, My Life of Brian, was inspired by slides of motor neurones at a conference.  Dr Brian Dickie was giving a talk and I was finding it a bit tedious, but I was transfixed by the images he was projecting. I'm also inspired by nature, as well as artists such as Modigliani, Picasso and Rothko, and have always loved colour.  The process of creating each piece is painstaking and can take several days or weeks. I have to be careful that I don't strain my eyes because they can become very sore.

I had to wait over one year for funding for my eyegaze technology and I'm incredibly grateful that I have this cutting edge equipment. I'm selling prints and cards online and all of the proceeds will purchase Tobii eyegaze technology for others with my illness.  I've extended my exhibition until 14th September and my work will be at the Arts and Crusts cafe, 19 Victoria Road, Walthamstow E17 4JT from tomorrow.

If you like something don't feel shy to buy it here or online!  I must thank Carol and Hector for telling me about the E17 Art Trail, as well as the Trail and Library staff for their support. Special thanks to Toby for his brilliant advice and for helping me with the installation of my work.

Thanks for listening.

Does anyone have any questions before I give a demonstration?"

  

Press links: Guardian Series , Times Series

The Right to Live

This piece has been waiting to escape from my weary brain for quite some time. Some people won't like it but tough.

Every few years we get someone with a terminal illness who feels that they have to change the law about assisted suicide/euthanasia/topping yourself. They usually don't actually want to die right away but want to know that if they do decide they've had enough and can't physically take their own life someone else will and not be prosecuted.

The media love it. The general public get very upset and pity the poor disabled wretch. 'We wouldn't keep an animal alive in that condition' (I know someone with an old disabled dog who cares for him and would never put him down). TV programmes debate the rights and wrongs and then it's forgotten until the next court case/terminally ill 'hero' attempts to change the law. I'm going to explain why I believe that nothing should change and it's based on my own experience, so enjoy the ride...

I was diagnosed with motor neurone disease (MND) when I was 34 and expecting my son. I didn't know what MND was and was absolutely horrified when I found out. My body stopped doing what it had always done and I didn't know how to cope. My ex-husband started to mock the way I walked and spoke. He called me ugly, said I smelled ill and moved out of our bedroom. Every now and then I would get a thump from him. I still can't look at his hands.

I cried every single day for three years and wanted to die. Being a fairly observant Jew at that time, I knew that taking my own life was forbidden. I didn't have the guts anyway and was also in denial, hoping that I'd recover. By the time I realised that MND wasn't going away I couldn't use my hands. I had lots of total strangers caring for me, seeing me naked and wiping me after I used the toilet. I was deeply depressed, barely eating and started begging my hospice doctor to end my life. He felt so sorry for me that I know that he would have snuffed out my life if it was legal.

I'm so glad that he couldn't. I would have missed the best adventures of my life.

So what turned it around? Great care from my hospice, antidepressants, chucking the husband out, getting a computer that I could use without hands, some romance and regaining my confidence again. Instead of dying I started to live again. My children still have a mother and I'm a good one. I can write, read, work and paint. If you don't know me you can see what I'm up to here. If you do know me, I have to go because I have questions from a journalist to answer, two exhibitions to prepare for, several articles to write and I'd rather be painting.

LIFE CAN CHANGE.

Dr Sharon Abrahams Interview

Dr Sharon Abrahams is a Senior Lecturer in Human Cognitive Neuroscience & Clinical Neuropsychologist at the University of Edinburgh. Her current post has three roles, which are:

a) Research into i) the cognitive and behaviour changes which are found in a proportion of people with MND using cognitive interviews and brain imaging and ii) cognitive and behaviour changes in people with dementia including Alzheimer's Disease and Frontotemporal Dementia (FTD),
b) Teaching Undergraduate and Postgraduate students in Neuropsychology,
c) Clinical Neuropsychology for assessment of dementia to aid in diagnosis and management.

 

Dr Abrahams first became interested in MND in 1993 when she joined Professor Nigel Leigh's and Professor Laura Goldstein's team at the Institute of Psychiatry, King's College, London. As a postdoctoral researcher, she investigated possible cognitive impairment in MND using cognitive interviews and experimental brain imaging techniques. The area at the time was new and very few researchers were investigating these clinical aspects of the disease. In fact very few people in MND research recognised that cognitive symptoms could be a part of the disease. The impact of what they were finding to the research community, clinical/health professionals, support services and people with MND and carers soon became apparent and so this became an exciting although somewhat controversial area to research. Secondly there was and is an enthusiasm and vigour of the research community within MND which encouraged young researchers to believe they could have an impact on this disease. Thirdly, Dr Abrahams feels that meeting and interviewing all types of people with MND is one of the most rewarding experiences of her work, not only from an academic or clinical perspective but in terms of getting to know people with the disease and how they cope with the challenges they face.

She has continued to research within this field throughout her career and following her move to Edinburgh in 2004, she became a founding member of the Euan MacDonald Centre for MND research. Her interest and the field has grown exponentially and now the link between MND and a type of dementia (FTD) is well established on a cognitive, imaging, clinical, genetic and pathological level.

Dr Abrahams believes that this work has foremost helped researchers to understand the disease process better, its relationship to other diseases (FTD) and that the disease is not restricted to the motor system in some people. This has directed further scientific investigation into why there is a link between MND and FTD.

This has helped researchers to understand and adapt for the clinical implications of having cognitive change associated with MND to aid in the management of symptoms. Dr Abrahams says that one of the most rewarding aspects of her work is in education. Informing both health professionals, carers and people with MND of the consequences of having cognitive problems. People repeatedly state that they have been recognising these symptoms in some people with MND for many years and now have an explanation as to why. So for example her work may involve helping a carer to understand why a person with a dementia syndrome may be behaving in a particular way and that the cause of this is their MND.

Dr Abrahams said that the ultimate goal of researchers is to find a cure and it is difficult to say whether this is round the corner or not. A very realistic goal for the immediate future is to find an effective treatment to slow down, stop or even reverse symptoms. This, she believes, will be achievable within the not too distant future.

GALLERY

I have new art software on my Tobii PCEye and have started to paint using my eyes. I've loved drawing and painting since I was young and studied art and history of art for 'A' Level. I started an art foundation course at 18 but didn't finish it. They were trying to push me into teaching which I didn't want and I was too young and immature. I carried on enjoying art and did several life drawing and sculpture courses at evening school. I always had a sketch book on me, it was just a normal part of my life.

Marriage and kids took over and then I was diagnosed with motor neurone disease at the age of 34. I'd always imagined that I would pick up my artistic pursuits later in life. When I lost the use of my hands I gave up my dream and started to write instead.

Little did I know that I would paint again using eyegaze technology. Of course, it's very different to using my hands and I'm still learning how to use the programme (Revelation Natural Art) and techniques. I absolutely love being able to create and express myself artistically again. I'm even looking at everything around me more intensely, which I haven't done for years. I feel as if life is suddenly more colourful and beautiful, waiting for me to capture it on my virtual canvas.

I'm going to post my work here and know that it will improve (I hope). Special thanks to Hector Minto at Tobii, who was the first person to help me to escape from my awful, locked in, MND existence.

Prints and merchandise are available to purchase from http://eyegazeartists.tictail.com/

Love Lies Bleeding (March 2015)

Vodka Dreams (February 2015)

Autumn with Matisse (October 2014)

Tree of Life (August 2014)

Peaceful Warrior (June 2014)

                         

Healing Precious (August 2013)

Seize the Day (July 2013)

One Day at a Time (May 2013)

First Movement to Spring (February 2013)

See Hope, See Love (February 2013)

Perseverance (October 2012)

Snowdon (August 2012)

Untitled (July 2012)

Wheaton (June 2012)

Made in Britain (May 2012)

My Life of Brian (May 2012)

Sophie's Butterflies (May 2012)

Teardrops 2 (April 2012)

Teardrops (April 2012)

Seascape (April 2012)

Popred (April 2012)

Blues (March 2012)
      

Daffodils (March 2012)

Profile (March 2012)

Phoenix (March 2012)

Cloudbursting (March 2012)

ACTRESS, GINA BELLMAN, SHARES HER EXPERIENCE OF MND (uncut)

Many of you will remember Gina for her roles in Dennis Potter’s ‘Blackeyes’, or as the hilarious Jane in the sitcom ‘Coupling’. Gina’s mother, Helen, has Motor Neurone Disease/ALS and Gina describes how the disease has impacted on the Bellman family.

Our experience was similar to many other families in that we waited a long time for an accurate diagnosis. At first, (six years ago) it was thought that my mother had probably suffered a stroke. She had started dragging her right foot and was coughing a lot and complaining of a numb lip. She was tested for all kinds of diseases and possibilities and I remember during this period, there being a sort of background chatter amongst doctors, friends and relations that everything would be okay so long as it wasn’t MND. Eighteen months after her first symptom my Mum was diagnosed with Primary Lateral Sclerosis. 

I realised straight away that we would need support to deal with this news. I got straight on the phone and called the MND Association. I spoke to a really supportive and sympathetic volunteer. She talked me through how the illness may develop and how we should prepare for the next stage. She asked me about my mother’s support group and then mailed out information packs for myself, my two brothers and my mum and dad.

By the time my mother was diagnosed, she had already started to struggle with controlling her emotions. Overall, this has been the hardest symptom for her to bear. I advised her to speak to her doctor straight away about taking anti-depressants. Obviously, I am not qualified to prescribe medication but in my mothers case it was extremely effective at helping her to cope with the excessive laughing and crying that can occur. With the support of medication my mother has been triumphant at controlling this aspect of the disease. Just recently she had to endure a close family member’s funeral and everyone was very worried about whether she would be able to stay composed. She was remarkable. The grandchildren used to laugh alongside her when she would have laughing outbursts, which would often prolong the episodes. Nowadays, we smile and reassure her but give her the privacy to compose herself gracefully.

I believe that her quality of life has recently improved because she has a new ipad with TBoxApps Predictable software http://www.tboxapps.com/. It's great for people who can still use their hands. The software has predictive text and files for common phrases and a predictive toolbar of commonly used words and names so it's quite quick to type. She’s finding it far more enjoyable to use than the Lightwriter. 

I would advise anyone with a newly diagnosed family member to get the MND information packs. They are brilliantly designed and should win all sorts of awards. There are individual self-contained sections on all the symptoms that you can refer to as and when needed and add to a ring binder as the disease progresses. They are simply written with bullet points and no technical medical jargon. When I received the packs, I highlighted the paragraphs that were relevant to us, it meant that we were all on the same page and could learn together moving forward. This disease is totally overwhelming but if you take it one symptom at a time it can lighten the load a bit. 

The MND/ALS Twitter community is extremely active. I recommend that people with MND and their carers, should get straight onto Twitter where they can keep up to date with research and fundraising but also make friends with people like us and a huge international community of brave, supportive, knowledgeable and loving people, some of whom have the struggle in common and some of whom are simply interested and interesting. I'm @Ginabellman if anyone wants to follow me.  

MND defines the word ‘courage’ for me. I can only speak for our own experience but my mother’s struggle and my father’s support has brought my family much closer together. My brothers and I are in awe of their strength, courage and dignity. The only encouragement I can give is that this disease can strip you of your independence, mobility and speech but it can’t take away your sense of humour.  We laugh a lot, especially at things that might have seemed degrading in easier times. Most of the time, my mum doesn’t let it get her down and so, nor do we.
 

My life will never be the same in terms of finding the strength to overcome a problem or challenge in the future. I am witnessing someone I love take on this disease and wrestle with it to keep hold of her independence, freedom of choice and free will. Moving forward in my life, both for myself and as a mother, I will endeavour to match my mum’s dignified strength and courage.

I’m about to head to America to film the fifth season of LEVERAGE, the US show that I work on. It stars Timothy Hutton as the mastermind of a gang of con artists who have come together to help victims of crime and corruption. I play Sophie, a mysterious, sophisticated grifter who can master any accent and has a soft spot for Tim Hutton’s character Nate. You can see it on FX channel here everyday at 10pm.

In my opinion, helping to care or support someone with MND is not a burden, but a wonderful opportunity to relearn everything you thought you ever knew about the majesty of the human spirit. Although, I would do anything to turn back the clock or obliterate this disease, the fact is, my mum has it and we have to cope with it, and I am grateful for the opportunity it has given my family to look after and support one another and to learn from everything that MND chucks at us everyday!

February Blues

This time last year you were mine
Being together was exciting and fun
Valentine's hearts and flowers
I wish you would send me one line

You're wracked with torment and shame
Soul mates forever you promised
Happiness has disappeared
I know that I'm to blame

Never again to meet
I didn't believe you would disappear 
Maybe you were but a dream
My memories remain sweet