This is the partner-carer story par excellence. Jane Hawking may have been the wife of one of the most extraordinary men of our times, but the choices, the strains, the relationship pressures, and the ways the home was destroyed by outside carers, these are the common concerns of most people caring for a severe disabled family member.
Stephen Hawking is such a famous person that his story has been told in documentaries, feature films and biographies. Jane Hawking’s story as his wife and carer should perhaps be read in the context of these other accounts, but as the story of how the family relationships were affected by his Motor Neurone Disease, it stands alone.
One of the more extraordinary things about Stephen Hawking is the way his Motor Neurone Disease seems to have stalled, and that means that Jane’s story is a long (almost 500 pages) and protracted one, tracking different phases of their lives, both together and, latterly, apart. This story is much more than just an account of Jane’s role as a carer. It encompasses the story of how Stephen was able to continue his globe-trotting life as a scientist, and to reach a wide audience and fame with his book A Brief History of Time. And alongside the medals and awards, Stephen and Jane had three children. Jane herself worked to obtain her own PhD from London University. Stephen himself even gets to travel into space on the Space Shuttle to experience weightlessness. No wonder this book was made into a feature film.
For the interested clinician or carer wanting some insight into the aspects of the story relating to care, there are several important sections. Chapter 11 of part 2 (‘Balancing Act’) looks at the difficulties of achieving some balance, Jane’s need for support, and her feeling that her role was becoming that of the drudge keeping everything going for Stephen’s sake. Meeting another family in California (part 3 chapter 1 ‘Letter from America’) in similar circumstances was very validating for her, sensing as she did the valiant front put on for public consumption, and the efforts behind the scenes. Stephen is obviously a very strong personality, and he was for a long time totally opposed to external carers in the home, however heavy the burden on Jane. This is powerfully described, and I sensed the increasing burdens and exhaustion as his physical abilities decline. She describes the progressive secondary effects of the MND and of the long hours spent inactive in his chair. For example in ‘A board game’ (Book 3 chapter 4) Jane tells of Stephen’s emaciation, and the choking and coughing fits as his swallow became less effective. When the family succumbed to chicken pox Stephen was very dogmatic about what treatment he would allow, resulting in an exacerbation and in admission to hospital in Cambridge – just at the time that Jane’s father was due for surgery in St Albans. The following chapter (‘Celtic woodland’) portrays the difficulties of caring at this critical period immediately prior to the inevitable disaster that forced the engagement of external help, a period when any slight extra stress would cause the whole thing to collapse.
I felt strongly for Jane as she carries on coping in a situation that she could never have anticipated. Her gratitude for different forms of support and help from friends is obvious. Students help with caring for Stephen in moments of crisis. But obvious also is her resentment of unimaginative and unsympathetic attitudes, especially from members of Stephen’s family or the academic establishment. In addition, Stephen’s refusal to accept outside help was ‘wearing away the empathy’ Jane had felt hitherto. This must be a common phenomenon. To provide relief Jane eventually joined Stephen’s former physiotherapist in a local church choir, and through this escape also found the friend she would eventually marry, Jonathan Jones, who becomes a stalwart supporter as there are further dips Stephen’s health and ability to communicate.
Part 4 starts with the critical events of Stephen’s coma due to pneumonia while away in Geneva (1985). Jane is forced to take important decisions on his behalf, including the decision to make a tracheotomy for intubation, so robbing him of speech, a decision that led to his use of the synthesised voice that is Professor Stephen Hawking today. In the short term the consequences of the decision aroused resentment, and further cracks in the Hawkings’ marriage. Such is the gratitude given to carers who have to take responsibility in moments of extremis. ‘Mutiny’ (chapter 4 of part 4) tells how the introduction of carers at home finally destroyed the possibility of a ‘family home’. This must be a scenario for many families coping with the later stages of a progressive disease. (Compare the experience of Ruth Fitzmaurice whose husband also had MND.) That Jane, Stephen, Jonathan and the children are able to come out of this without severe scarring is testament to their basic goodwill and intelligent management of an impossible situation.
The feature film The Theory of Everything is inevitably a romantic version of Jane’s book. In contrast the documentary from 2001 (Channel 4, The Real Stephen Hawking) provides some excellent insights. For example, Tim Hawking, the younger son, comments over family film clips about life with a severely disabled father. He says that the new synthesised voice enabled him to form a relationship with his father that would not have happened otherwise.
The book is a great, if exhausting, read. It is essential reading for carers of someone with a severe progressive neurological condition. Therapists and professionals could learn a lot from the insights Jane gives into the burdens of unceasing care responsibilities, and from her comments about health workers and their attitudes.
Hawking, Jane (2007, 2014) Travelling to Infinity; My Life with Stephen, London Alma Books
Audiobook is available: https://www.audible.co.uk/pd/Travelling-to-Infinity-Audiobook/B00QUAOU6O?source_code=M2M14DFT1BkSH082015011R&ds_rl=1235779
Documentary: The Real… Stephen Hawking (29/01/2001), Channel 4, https://media.coventry.ac.uk/Player/1073 Posted on YouTube in 5 instalments, https://www.youtube.com/watch?v=Rpgdwr8lQ5k
Feature film: The Theory of Everything (2014) dir. James Marsh, starring Eddie Redmayne & Felicity Jones