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Jane Hawking BBC Interview about The Theory of Everything

The Theory of Everything

Released on 1st January The Theory of Everything has become a sensation, winning both the Best Actor and Best Original Score awards at the Golden Globes and the interest around the film is just growing and growing. Back on January 3rd Jane Hawking appeared on BBC Radio 4’s Woman’s Hour discussing her life with Stephen, the time she spent as a carer, the aftermath of her marriage and even her thoughts on the film.

In previous posts since the film’s launch we’ve discussed the technical side of things, how Professor Hawking actually talks but here we’re looking at the more personal side of their lives, which has become critically acclaimed in cinemas around the country.

Life on a Precipice

In an interesting interview which gave Jane the chance to discuss her life with Stephen and her feelings about having her autobiography, Travelling to Infinity: The True Story Behind the Theory of Everything turned into a hugely important and hugely popular film.

Talking about the film Jane expressed how strange and mesmerising it was to see Felicity Jones playing her and even remarked how Stephen too was amazed by how fantastically Eddie Redmayne came across playing him, with some stills of the two next to each other almost identical.

The interview also delves more deeply into the life Jane had trying to cope with Stephen’s Motor Neuron Disease with very little knowledge of what the disease could do and a prognosis of two to three years before his final death. In reality things panned out very differently and Jane herself highlights how she wished she had asked more when she had the chance so she would have been able to ask for help, get the right provisions in place and start with the support needed from the beginning, with a better system in place for vetting the medical and health professionals who came into their lives.

Jane described her life, when things were deteriorating, as ‘on a precipice’ not knowing what would happen next or how they’d cope with it but it wasn’t without hope, and her strength of character comes through, despite the issues they faced as a family.

Moving Forward

Jane Hawking’s Autobiography

Both Stephen and Jane Hawking entered new relationships after theirs was over and Jane highlights how the film portrays her relationship with Jonathan Jones very well, showing respect for all parties involved and she talks eloquently about how they managed their feelings to ensure no one was initially hurt. The mentions of Stephen’s second wife Elaine are fleeting and it’s clear, Jane and Stephen have been able to maintain a more effective family relationship since his divorce from Elaine.

Their family connections ensure they are always tied together and this has allowed their relationship to remain strong even after all the tribulations, although it is now better described as a working or platonic relationship than what they had before.

The type surrounding the Hawking family at the moment is fascinating and gives us a closer look at one of the leading figures in modern physics and the more personal side of his life. Hearing things from Jane’s point of view is especially valuable as it gives another dimension to the story as a whole and lets us see how well the film has portrayed her autobiography in her opinion.

Transcript:

[Intro]

Interviewer:     But first, in 1963 two young undergraduates bumped into each other at a Cambridge party.

 

[Film Clip: 00:00:08 – 00:00:56]

[Start]

Stephen:          Hello.

Jane:               Hello

Stephen:          Science.

Jane:               Arts.

Stephen:          English.

Jane:               French and Spanish. What about you? What do you?

Stephen:          Cosmologist, I am a cosmologist.

Jane:               What’s that?

Stephen:          It’s a kind of religion for intelligent Atheists

Jane:               Intelligent atheists?

Stephen:          You are not religious are you?

Jane:               C of E. Church of England.

Stephen:          England. I suppose someone has to be.

Jane:               What do cosmologists worship them?

Stephen:          What do we worship?

Jane:               Mhm.

Stephen:          One single unifying equation that explains everything in the universe.

Jane:               Really?

Stephen:          Yes.

Jane:               What’s the equation?

Stephen:          That is the question. And a very good question. [Laugh] I am not quite sure yet, but I intend to find out.

 

[End]

 

Interviewer:     Well that was Eddie Redmayne and Felicity Jones imagining the first meeting of Stephen Hawking and Jane Wilde in the new film, The Theory of Everything. It tells a story of how Jane went on to marry the brilliant young astrophysicist knowing that he had motor neurone disease and had been given only three years to live. Together Professor Stephen Hawking and his wife Jane confound all possible expectations as the years turned into decades. And they had three children together before separating in 1990. Both went on to remarry. Stephen to Elaine Mason from who he has since divorced and Jane to a long standing friend Jonathan Hellyer Jones.

Well the film is a fascinating glimpse into their lives before and after the diagnosis and it’s based on Jane’s Autobiography Travelling to Infinity. Jane Hawking told me what it was like seeing her life on screen.

Jane:                Felicity’s performance was phenomenal. She came to dinner several times when they were filming in Cambridge and I got to know her quite well, but she studied me obviously while we were talking and we talked a lot. And, when I saw her on the screen I was flabbergasted because she captured my mannerisms, my movements, my patterns of speech. Even—

Interviewer:     I know when I see a snap shot of Eddie Redmayne and Felicity Jones in the wedding when you got married and an actual black and white shot of you and Stephen you almost do a double take don’t you?

Jane:                Yes. Stephen says that he’s seen photos of himself as young man and Eddie side by side and he has difficulty knowing which is which.

Interviewer:     And the decision to get married which was in 1965 when you were both very young seems to have been an extraordinary thing to do of your life because at that point he’d had his diagnosis of motor neurone disease and you knew that a battle lay ahead. But, you thought it was going to be quite a short battle didn’t you?

Jane:                When Stephen’s father told me that Stephen had two or three more years to live at most and I felt I could devote myself to him for those two or three years. I loved him, I wanted to marry him and I wanted to do my best for him to give him every opportunity. Also though I have to tell people that we were living under the Nuclear Cloud and it only took what would take only one spark to ignite a conflagration or a Nuclear war which was going to be the end of civilisation; the end of all of us.

Interviewer:     You also gave up a lot when you got married which again wasn’t unusual for women of your generation, you know, you were educated, you studied languages, you hoped for a career in the diplomatic service. You then dedicated your life to your husband and family. But, do you feel like you gave up more than other women, other friends?

Jane:                Well to look at it from one perspective I think ours was the last generation for whom a home and a family were the great aims in life. On the other hand my father insisted that I finish my degree in London. So, I did finish my first degree and then I looked around for what could I do and I realised very quickly that being a wife and a mother in Cambridge was a passport to nowhere. There was no respect for wives and mothers in the academic–

Interviewer:     Did you resent that?

Jane:                I thought I needed to do something about it. So I started work on a Ph.D. on medieval Spanish poetry which was a lovely thing to do but it was quite difficult to manage first of all Stephen and a Ph.D. it wasn’t so difficult because we were both working together, but then when the children came along when I was looking after or playing with the children I felt I should be doing my Ph.D. and when I was doing my Ph.D. I thought I should be looking after or playing with the children. So there was a constant tension there and because of all the other things I had to do looking after Stephen of course, looking over the household. It took me a very, very long time to finish it. I finished it actually just before Tim, my youngest son, was born.

Interviewer:     I mean you talk of the years of child care but you also talk of the “Stephen Care”. Now as a carer you sacrifice your own needs much of the time and it was endless caring. Did that take its toll? You described how you became a drudge in the book.

Jane:                Eventually. At first we were trying to be a normal family living a normal life. I was very young. I had bags of energy and I managed, I coped. Stephen did have help from his friends and colleagues I mustn’t forget them because when he went to the department of applied math’s during the day they looked after him there and they brought him home for lunch and they brought him home in the evening. It was really after fame and fortune took hold that I began to find things very difficult. I was not as strong as I used to be. I was very tired; in fact eventually I was just worn out.

Interviewer:     Because there were a lot of occasions where someone had to be with Stephen 24 hours. You’d sit up all night and you would do shifts wouldn’t you because you were worried about him?

Jane:                My darling mum came over from St. Albans and she would sit up with Stephen all night when I was exhausted and then one of his very special students Bernard Carr also came and helped out in the same way. Stephen hated being in hospital he didn’t want to go into hospital and when he had to go into hospital he wanted to get out as quickly as he could. And we didn’t have a nursing team at home in those days and it meant that the family had to look after him at night with his dreadful, dreadful choking fits which was so, so scary.

Interviewer:     So you were living on a knife edge weren’t you between life and death?

Jane:                I described it as living on a precipice; the edge of a precipice. But, even so I said in the book that if you live on a precipice long enough you actually begin to put down roots and then a little tree grows up on the edge of the precipice.

Interviewer:     It sounds like Stephen is a sort of non-confrontational person because you never discussed his illness it was like a “no go” area wasn’t it?

Jane:                He would not talk about it. And I think that probably was my mistake because if when we were very young I’d insisted on talking about it, it might have been rather easier later.

Interviewer:     But going back to your relationship, your platonic relationship with this lovely widower Jonathan who comes into your life having cared for his terminally ill wife. And in fact slots in really well and he is quite happy to do all the caring duties for Stephen as well and in fact–

Jane:                He takes over and he helps with duties that when I was too exhausted to do myself.

Interviewer:     How did you manage with loving a man who you refused to have an affair with? In the film it comes across a profound sense of duty both of you.

Jane:                I felt I was committed to Stephen and Jonathan was committed as he says in the film not just to me but to the family as well. He was very lonely have been widowed so recently and he was not ready to have an affair. He was looking for some fulfilment in his life.

Interviewer:     Now your relationship with Stephen ended unhappily when he had a relationship with one of his nurses, Elaine Mason who he eventually married and has since now divorced. What was that period in your life like Jane? Did you feel utter betrayal?

Jane:                No, because I realised that Jonathan was in my life and I felt that Stephen had every right to have somebody in his life. But, I did want us to be able to continue as a family and I felt that Stephen needed me in his life because I knew all the routines. I cared for him.  I was committed to him. I felt that he needed my protection, but evidently that is not what he and his nurse wanted. So that was actually the end of the marriage.

Interviewer:     Has your relationship resolved since then?

Jane:                Between Stephen and me?

Interviewer:     Yes.

Jane:                Oh well we have three children and we have three grandchildren and I think that it’s very important for the family to have a sense of unity and to be able to do things together. To be able to go on holiday together, to be able to have meals on festive occasions together. And, to enjoy things like The Theory of Everything together.

Interviewer:     What was it like as the years kept passing by and not to put too fine of a point on it, Stephen was still alive?

Jane:                Life goes on doesn’t it? One year succeeds another and you concentrate on all the really wonderful things: your children, their success, the grandchildren and their success. And, in a sense Stephen and I had won the battle against motor neurone disease and that was a great success to.

Interviewer:     Would he ever have achieved what he did without you?

Jane:                Now that I cannot answer. Other people have suggested that, that might be the case, but who knows what could have happened.

Interviewer:     One point in the film Stephen says to you “you don’t know what’s coming.” If you had known would you have made the same decision to get married?

Jane:                I think if I had known I then would have known that I would be wanting to do things differently. I would want to be able to talk about the illness with him. I would want to be able to make better provisions. I would want to be much more careful about vetting people who came into the house as nurses and carers. So I would have wanted to have been in a strong position myself and I would have definitely wanted a lot more help.

 

[Outro]

Interviewer:     I  was talking to Jane Hawking and that film The Theory of Everything opened yesterday and it is very, very good indeed.

 

Liverpool Mi Smarthouse

Liverpool Mi Smarthouse

Mi Smarthouse Kitchen Area

Mi Smarthouse Kitchen Area

At the Museum of Liverpool there’s a small, unassuming exhibition which looks like the recreation of a normal house. When you get inside you realise it has been setup with every possible gadget and gizmo to support independence. The Mi Smarthouse is a project put together by More Independent (Mi).

More Independent is a Government-funded initiative that is being piloted across four UK regions. As there website says the scheme exists to:

  • enable you to take charge of your health, wellbeing and lifestyle
  • use technology to allow you to feel safer and live more independently in your own home
  • give peace of mind to yourself and your family
  • reduce the amount of time you have to spend on appointments, by supporting you to manage better at home

The Mi Smarthouse at the museum is kitted out with a wide range of equipment covering all the key areas of the home. Here we’re taking a look at some of the gadgets they’ve highlighted and used in their perfect, accessible home.

General

These gadgets could be useful at any place in your home and can make it feel more safe and secure.

Fall Detector

Fall Detector

Fall Detector

A fall detector can be worn around your neck and it connected to a system which will alert your carer if you do fall even if they’re not on the premises.

Large Buttons Picture Telephone

Phone keypads can be hard to use and it can also be difficult to remember phone numbers. This phone has spaces for photographs of those people you call regularly as well as large, clear numbers for when you need to dial out.

Home Safety Alert

The Mi Smarthouse has a bonus caller panic button installed by the front door, giving the residents the chance to press the button if anyone arrives at the door who they’re not comfortable with. Similar home safety alarm system can be found elsewhere too.

Supra KeySafe

Supra KeySafe

Supra KeySafe

The Supra KeySafe is the UK’s first police approved key safe and is the perfect place to store your emergency keys. You choose a combination number and you can share this number only with somebody you trust implicitly.

Carbon Monoxide Sensor

Carbon monoxide can kill. It’s odourless and can’t be seen so the only way to sense it before it is too late is with a dedicated carbon monoxide sensor. Sensors can be easily installed and can save your life.

Fingerprint Lock

A fingerprint lock is a great option if you struggle with keys. You can add the details of your carer and friends as authorised ‘pad-pressers’ so they can get in and out with ease when necessary too.

Kitchen

We’ve talked regularly about the importance of gadgets to make access to the kitchen easier. It’s potentially a dangerous environment so anything to make it less so is a good invention in our book. In the Mi Smarthouse they demonstrated a range of kitchen-specific gadgets.

Talking Microwave

The controls on a microwave oven can be difficult if you have difficulties with your vision or dexterity. A Talking Microwave Oven can help guide you to the buttons you need and it will also tell you when the door is open or closed and let you know whether the food needs stirring or left to stand.

Induction Hob

An induction hob only cooks the pot upon it. There is next to no danger of being burned by it and they’re becoming a common installation in supported living environments to aid independence. This type of hob is also energy efficient and reaches top temperatures in record time. In the Mi House the hob was fitted but they can also be bought as separate electric units .

One cup Kettle

one-cup_kettleWe’ve talked before about how useful the one cup kettle can be. Never worry about spilling boiling water as the kettle will dispense the exact amount you need with the simple pressing of a button.

Entertainment and Living Area

Many of these items listed below could be used all around the house but are most useful when you’re relaxing in front of the TV or lounging on the sofa.

Big Switch and Remote

Big Switch Remote

Big Switch Remote

A Remote Control Big Switch can be positioned wherever you need it to avoid bending to switch off items which have plug sockets uncomfortably out of reach. The big switch can be used with any electrical appliance in the home.

Voice Recorder Switches

If speech has always been or is becoming difficult then these small voice recorder switches can be used to record key phrases. They can have messages such as ‘I’m hungry’ or ‘I want to go home’ ready recorded for when you’re home or out and about when speech has become difficult.

Chair Occupancy Alert

This item is extremely useful if you have an outside care team supporting you as it allows them to monitor the time spent out of your chair. If it seems exceptionally long they may phone you or come around the check everything is OK.

Big Jack Controller

Big Jack Multi-Controller

Big Jack Multi-Controller

The Big Jack can replace all your smaller, fiddly remotes and switches. It can be programmes for a whole range of jobs and can be used to change channels on the TV, switch off lights and even use the telephone.

Personal Care

The personal care element of the home is the most private. Both the bedroom and bathroom are places where you want to maintain as much independence as possible and some of these gadgets are designed to guarantee this as well as ensure you can get the help you need, when you need it.

Epilepsy Sensor

Epilepsy Sensor

Epilepsy Sensor

Living with any form of epilepsy or convulsions can be extremely frightening – especially if you’re alone when one occurs. This epilepsy sensor will alert an outdoor care team if a seizure is taking place, allowing them to provide the right support ASAP.

Enuresis Sensor

Enuresis Sensor

Enuresis Sensor

Designed to fit comfortable under the top sheet, an enuresis sensor will alert your carer to the fight signs of dampness whilst in bed – ensuring you’re not left uncomfortable for a long period of time. We have looked at these aids previously for helping children but they can be equally useful later in life.

Flood Detector

A flood detector will guarantee you never forget about another bath. It’s very easy to forget the bath is running but with the installation of a simple detector, it will be safe and you can avoid the risks of damage to your home and the even higher risk of slipping.

The Mi Smarthouse in Liverpool is one of the first examples of how all this technology can come together and successfully be used to help people remain in their own homes independently. You can take a virtual tour of the Smarthouse here. We recently visited the £D printing exhibition at the London Science Museum and will cover the potential benefits in a future post.

Ataxia Awareness Day – Living with Ataxia

 Ataxia Awareness Day

Ataxia South Wales Wristbands

September 25th 2013  is Ataxia Awareness Day. Ataxia is a rare condition that many people haven’t even heard of and our main connection with the condition is due to one of our most loyal Trabasaxons Alan Thomas living with cerebellar ataxia. We’re always pleased to see Alan on his worldwide adventures and always getting great use out of his Trabasack.

What is Ataxia?

Ataxia is a coverall name given to a group of different neurological disorders which have a profound effect upon balance, coordination and speech. There are many different types of ataxia that effect people in different ways.

Some of the many types of ataxia include:

  • Friedreich’s Ataxia – thought to be the most common type of hereditary ataxia and usually first noticed between the ages of 8 and 15.
  • Ataxia-telangiectasia – AT is a much rarer form of hereditary ataxia which effects 1 in 100,000.
  • Spinocerebellar Ataxias – SCAs are a group of hereditary ataxias which again affect about 1 in 100,000 people. SCA symptoms don’t usually make themselves known until adulthood.
  • Episodic Ataxia – as the name suggests episodic ataxia is another hereditary form of the condition which comes in phases but much of the time the person has no symptoms. Symptoms usually begin in the teenage years and can be a reflexive response to stress, exercise or alcohol amongst other triggers.
  • Idiopathic late onset cerebellar ataxia – ILOCA usually occurs after 50 years of age and degenerates over time.

Ataxia can affect anybody at any age but as the above examples show different types of the condition are more likely to be diagnosed at certain points in an individual’s life.

There are believed to be approximately 10,000 adults in the UK living with a type of ataxia and research suggests several thousand children too.

Currently there is no known cure for ataxia although some forms can be treated effectively. Research is continually being carried out and funded by Ataxia UK who are dedicated to finding a cure as this video shows:

What causes Ataxia?

Ataxia is a condition in its own right but it can also be a symptom of other conditions including multiple sclerosis and can also occur due to a head trauma or intoxication. Ataxia which isn’t caused by any of these factors is likely to be a hereditary condition caused by a faulty gene passed through the family or in some instances non-hereditary or sporadic.

Research has also shown that Friedreich’s ataxia is caused by a defect in the gene which produces the protein fraxatin. Understanding this gene helps move research forward towards ambitions of a cure.

Ataxia UK’s research projects are focused on finding out exactly what causes different ataxias and pinpointing the individual genes responsible for these conditions. At present approximately 28 genes have been discovered which cause spinocerebellar ataxia and research continues to ascertain how these genes are effective and make steps towards finding treatment and eventually the cures needed.

Trabasaxon Alan Thomas

Alan and the Trabasack Team

Now we’re back to Alan’s story. Alan has been a huge supporter of our business for many years and we’re really grateful for all the action shots he takes with his Trabasack and we love seeing where he takes it next.

Alan had always walked with a trademark ‘wobble’ and spoken with a small slur but this was just part of who he was. He found a career as an electrician but it was making sandwiches which showed him something wasn’t quite right. Coordination was becoming extremely difficult and after numerous visits to GPs trying to convince them something was definitely wrong, by 34 Alan had his diagnosis of cerebellar ataxia.

Rather than resting on his laurels Alan realised there was very little information about ataxia available and endeavoured to change this. He wanted to make a difference so people living with ataxia could easily access and obtain information about the condition and eventually became a Trustee of Ataxia UK and the Chairman of Ataxia South Wales.

Much of Alan’s work is online supporting other people worldwide with Ataxia and moderating Living with Ataxia an online community

Alan making great use of his Trabasack

for the conditions. He also attends as many national conferences as is feasible and is dedicated to spreading the world about ataxia.

Alan made this video about Keeping Positive with ataxia and the user comments afterwards show what a positive impact his work has. As on commenter says:

“Alan has shown me that my three year old daughter Jade has a lot to look forward to and achieve in her life to come. Jade has Ataxia and by the time I met Alan, I was full of despair for my daughter. Not anymore. Alan – you are truly an inspiration to me and many others like my daughter. You have shown me that Jade has a wonderful life in front of her and I can never thank you enough for that.”

Gadgets for Ataxia

Alan has already highlighted how useful his Trabasack has been for many purposes from carrying drinks and food to taking notes but there are other gadgets which can be hugely beneficial for people living with Ataxia including:

Greepers Laces – removing the need to struggle with the coordination needed to tie them up

UnPlugz – to make removing plugs from sockets simple and safe

HandSteady – a drinking cup with a rotatable handle, making it easier to keep steady than traditional cups

Signature Name Stamps – if you find it hard to write a consistent signature try this idea

Spread the Word – Ataxia Awareness Day

Ataxia Awareness Day is 25th September every year and it’s an opportunity to spread the word about a little known condition which many thousands of people live with. The more awareness there is for the condition the less people will feel isolated and more can be done to research and develop treatments.

All photos in this post are courtesy of Alan Thomas’ fantastic Flickr account.