Monday 20 June 2016

A2 LL - Through the Pain Barrier - notes

Through the Pain Barrier
Andrea Dworkin
The Guardian April 2005

Page 304

1
Osteoarthritis – starts before symptoms are made manifest, perhaps began during period of homelessness, sexual and physical abuse.Her partner John blames the book – took 9 years to write on Jewish identity and women’s liberation. Dworkin blames the rape in 1999 Paris 

2

  • After fathers death, she is admitted to hospital with infections, blood clots

told she is going to die, treated well by nurses – allowed to spend time with partner in hospital bed

3
There is no medical evidence to support her claim that the rape is a causal link to her present medical condition

4
After being discharged from hospital her knees developed problems. Avoided NY subway and bought a cell phone to call cabs in emergency

5
Diagnosed with Osteoarthritis in the knees, treated with painkillers and steroids. Free from pain she chatted to a neighbour but in excruciating pain when she got up. Pain free for an hour

6
Mobility decreased. Pain increased. Became limited to her home. Home was physically very badly designed for her. Crawled up stairs. Remained in bed. John brought her food. Only outing was to the doctors.

7
Drug management very difficult. Doctors prescribe and pharmacist advises.   Eventually knees needed replacing together. The process of amputation and fitting prosthesis was very difficult.

Page 305

8
The amputations were barbaric – sawing through bone. Very painful. Morphine used to control pain.

9
Experienced severe hallucinations fear of falling downstairs


10
One day rather wet the bed than experience the pain of getting onto a bedpan

11
Walking very painful. Tried to walk to chair but had to be dragged to a chair. Waited 2 hours – to recover from pain and then carried back to bed. Nurses try to be positive. They are patronising.

12
You cannot die from pain. Suffering cannot be measured. It’s unbearable – and will be for the next 2 years.

13
Moved to an institute. Required to take painkillers and attend  classes. She could only manage a very few steps.  She was in constant pain

14
Classes are large. She’s relieved by the long wait between turns. Improvement is very slow. Eventually she can walk few steps and is given crutches.

15
Rehabilitation is very slow. Occupational health. Mundane daily tasks, repetition.  Life seems very limited and restricted for her.

16
She also sees the psychologist every week for no apparent purpose. The pain relief medication helps her cope with the psychologist.

17
Her cynicism continues to deepen about her stay in the rehabilitation unit. She learns to kick cats and uses her crutches to do this. She has learned to stay indoors if the weather is bad even if this means missing medical appointments despite this being considered sacrilegious and finally she’s earned never hold on to anything that moves

18
On discharge she I provided with basic care and resources that include a young poorly trained nurse home help who can do basic medical care and help with bathroom, kitchen duties. She’s also provided with a physiotherapist. She too knows only the basic fitness routine.

19
She attends a pain management centre. She seems contemptuous of the staff. She is given a detailed irrelevant questionnaire to answer that seems suitable for people with cancer and who have sex.

20
They are reluctant to issue repeat prescriptions for such powerful drugs so she has to return every 30 days to undergo a series of humiliating and degrading procedures like undressing for examinations before being given a further prescription. 


21
once she has given tolerable drugs where she can ignore the pain she begin to write about her life as a way of recalling happy memories. However the side effects of the drugs limit her capacity to work for longer than an hour a day. They cause memory loss and slurred speech.

22
One day the pain in one knee disappears and she goes out to get a coffee. She watches ordinary people walking the street. Each walker has a unique way of walking. She longs to be like them. Ordinary pedestrians appear to her to be artists. She remembers that she was once like them.

23
As the years pass there is gradual improvement in managing the pain and walking. A walking can replaces crutches. This is seen as a victory. The pain eventually lessens in her left knee she is taken off the painkillers but suffers terrible withdrawal symptoms from methadone.

24
They move to Washington as John has a new job there. But despite finding a place to live that is more suited to her needs she experiences a sudden decline in her right knee. Her medical condition is affecting other parts of her legs now. She needs both crutches to walk. She has to see a physiotherapist twice a week. She feels fragile and vulnerable. Falling over is dangerous and is a constant threat.

Page 308

25
At a new rehabilitation unit an orthopaedic surgeon recommends a leg brace to restrict the movement of her knee. 

26
The knee brace takes months to make by specialists. It looks science-fiction. It is completely rigid. She hates it. It is very complicated and difficult to use. It takes months for her to work it properly. She loses her balance and once miraculously falls backwards into a chair. 


27
Ordinary jobs are really difficult for example clearing up the mess her cat has made. Her efforts to stay upright throughout the process are super human and she manages it somehow.


28
The physical landscape is fraught with dangers and threaten her stability. Everyday ordinary things are hazards to her walking like a broken pavement, the wind and people walking too close.

29
She really resents her disability. A simple task like carrying a cup of tea from kitchen to sitting room in one go is enormous. And many times she has failed. The cup has breaks. She has become very angry and utterly exhausted by the experience of being disabled.


Page 309

30
Disability is humiliating sometimes she is treated as if she is a stupid child. Sometimes the physical obstacles are too overpowering, for example having to walk three flights of stairs for a party given in her honour. She did not go to the party. Using toilets in public bars and having to navigate slippery surfaces is a nightmare. A friend can barely hide the revulsion she feels at this woman’s life.

31
Loneliness and alienation are significant features of life for disabled people. There needs to be a huge change in government policy and public awareness to help disabled people live fully integrated lives. There must be equal opportunity for people with disabilities. – She should have moved to London.

32
There needs to be changes in the urban environment to include people with special needs. In 1990 the Americans with Disabilities Act states that the environment must be made available to people with disabilities. Excluding the disabled is discrimination according to the act.

33
Disability groups employed lawyers to sue companies for non-compliance of implementing measures to include and integrate the disabled. Apparently big business in the US hates to lose money so compliance became the cheaper option and many big businesses implemented new disability policies supporting inclusion and integration.

Page 310

34
Now things have changed considerably for disabled people. Both public and private space has facilities that make it possible to navigate through the urban landscape easily for disabled people. For example wheelchairs and grab rails are provided. Disabled people don’t have to be invisible of feel ashamed in public.

35
The work of aggressive lawyers working on behalf of the disabled has made this all work. They are hated by the Republicans and George W Bush. 

36
Despite all the difficulties she experiences there are moments listening to Yo-Yo Mar playing Bach or Loretta Lynn’s Von Lear Rose she knows she is healing. Music can transcend suffering.