A memoir by late Eltham resident Jane Maxwell
Eltham resident Alan Maxwell has been heavily involved in the production of Forever Yours: A Sufferer of a Cruel Degenerative Condition Finds Her Voice, a memoir by his late wife, Jane Maxwell, that was published in February.
Jane, who died in 2016, suffered for most of her life from a serious and progressive neurological condition, Friedreich’s Ataxia*. Unable to walk and confined to a wheelchair as a teenager, her condition worsened, slowly but cruelly, as each year passed.
In spite of her problems, Jane graduated from university, married, had a baby, and travelled the world. The painstakingly slow nature of the deterioration, over decades, made each successive loss all the more devastating as Jane’s ability to walk, stand, dress, wash, push her own wheelchair, hold a pen or cup, type, feed herself, speak, hear and communicate all went in turn. Losing speech and hearing were, for Jane, the most isolating and distressing symptoms of all.
Having been effectively silenced for many years by her condition, Jane’s ability to communicate was restored in 2011 through technological advances that enabled her to
‘speak’ via a computer, using very slight movements of her chin. It was much like the equipment Stephen Hawking used (but thankfully not writing about astrophysics!).
The assistive technology Jane received changed her life dramatically and gave her real hope for the final five years of her life. Being able to communicate again in writing, after so many years, meant everything to Jane. In the midst of losing her voice, her hearing, and the use of her arms and her hands, Jane decided to write a memoir of her life – Forever Yours – her story, in her own words. She was assisted by her speech therapist, Helen Day, who works with Greenwich and Bexley health authorities.
‘Forever Yours’ had been the inscription Jane and her husband Alan had chosen for their engagement rings back in 1977. Jane’s book was to be “a love story but with a twist”.
Together, and in faith, Jane and Alan were to learn that the deepest joy can come from the darkest of places, including in times of trial and pain.
The book touches on serious issues, including pain, suffering and loss, enduring love, faith, hope and joy. Through it all, Jane’s incredible sense of humour, and positive outlook, come across as a welcome but disarming companion. In such a negative world, full of much hopelessness, cynicism, and bad news, Jane’s voice is worth listening to. So often those who struggle the hardest to speak at all have the most to say. And we have much to learn.
This is a real good news story. Timely intervention by the local neuro-rehab team from the Memorial Hospital, who helped Jane immensely, at her time of greatest need, in the period following a spell in palliative care in 2011, with the timely provision of assistive technology for the profoundly disabled, offering her at last, real hope and – through the freedom to write. A voice for the voiceless.
(Local readers might be interested to know that Jane’s father, Dr Peter Dawe, was in practice as a GP at the Blackheath Standard surgery for many years and also had a surgery in Little Heath, Charlton.)
Forever Yours: A Sufferer of a Cruel Degenerative Condition Finds Her Voice by Jane Maxwell (Westbow Press) is available on the internet, including direct from Amazon UK (Kindle version £3.35; paperback £14.95)
*Friedreich’s ataxia is a genetic condition. Recent advances in the field suggest that it is no longer fanciful to believe that one day there may be a cure. Other advances are making the lives of sufferers a little easier with each year that passes. Ataxia UK is the charity that both supports research into Friedreich’s ataxia and similar conditions and helps those people with such conditions to lead more normal lives. Visit their website (ataxia.org.uk) for more information.
This article appeared in the summer 2018 issue of Black + Green Magazine