Writing a medical memoir

Regular readers of this blog will know that in 2015 my husband Brian had a near-fatal heart attack, and that this was followed by a whole series of medical and surgical emergencies affecting our family. I had spent many years working on the medical staff of hospitals and hospices, but experiencing serious illness from the perspective of patients and relatives was very different.

After recovering from the traumas I decided to write a short memoir about them, and this is now available on Smashwords, Amazon US and Amazon UK under the title Across a Sea of Troubles. The first part tells the story of what happened, and the second part is a review of various topics including life event stress, the mind-body connection, post-traumatic syndromes and the role of  the carer.

I wrote this partly for myself as a way of coming to terms with things. Whether it has actually been therapeutic I am not sure – revising the manuscript involved rather too much focus on painful memories. So even if it still not a perfectly finished book, I have decided to publish it and move on. I hope it will hold some value for people who are coping with illness, whether as patients or relatives or health care professionals. But as always when publishing something new, I feel apprehensive about its reception: have I revealed too much personal information about myself or others? does it come across as morbid and self-pitying? is the medical information accurate?

A memoir can be defined as “a record of events written by a person having intimate knowledge of them and based on personal observation”. In contrast to an autobiography, it describes one particular aspect of experience rather than a whole life. Naively perhaps, I have always tended to assume that both memoirs and autobiographies are historically accurate. So I was a little shocked to be advised on one on-line site that it is acceptable, even desirable, to alter the facts to make them more interesting or inspirational for the reader. Although I did wish there were more positive aspects to my own story I resisted any temptation to embroider the truth, and wrote it exactly as I remember, checking all the dates from my diaries. So, rather than one of those books about “illness as a precious gift that transformed my life” it is an honest account of a rather gruelling sequence of events. Here again are the links for Smashwords, Amazon US and Amazon UK. I will share a short extract in my next post.

ast-smashwords-cover

Reflections about caring

This post is an extract from a work in progress, a memoir about the traumatic events that affected my family last year. If you have suggestions about how to make it more readable or relevant, please leave a comment below.

I found that looking after my husband following his heart surgery, and my mother during her last illness, was highly stressful even though it only lasted a few months and involved very little heavy hands-on work. The carers of patients who are disabled or demented must have far more arduous and prolonged ordeals to endure. The experience certainly made me appreciate the challenges of the caring role, with its somewhat uneasy combination of duty and privilege.

Studies from the cancer care setting indicate that levels of emotional distress among patients’ partners are similar, in both frequency and severity, to those for patients themselves. This is not surprising, considering that besides feeling sad and anxious about their loved ones, partners are often physically exhausted by providing practical care and running the household on their own.

There is a sensitive balance between attending to the sick person and meeting one’s own needs. Self-help authorities often say “Look after yourself first, or you will have nothing to give to other people”, usually quoting the airline safety message about putting on your own oxygen mask before assisting anyone else. This is sensible advice, but it can be difficult even to find the time for basic self-care, let alone take a break to enjoy something purely for fun or pleasure. One afternoon when Brian was in hospital, I found myself with half an hour to spare between appointments in the city, and impulsively decided to get a manicure. This frivolity gave a short boost to my morale, even though when I visited Brian in the evening he remarked that my bright pink nails made me look like a whore.

When my mother’s health was failing I discovered what a fine balance there can be between providing help and support that is appropriate to the patient’s needs, and seeming to be interfering with their independence and autonomy. Ideally it is best to check what the patient wants, rather than assuming you know what is good for them. But this does not always work, for sick people can make irrational choices, keep changing their minds, or be incapable of expressing their wishes, in which case the carers can only try to be tolerant.

While attention is focused on the patient, the carer’s vulnerability is not always appreciated, and I felt this a couple of times. A friend of the family sent two beautiful hand-painted cards, one for Brian and one for Clare, but did not send one to me nor mention my name on the messages inside. I did not blame her for leaving me out – I might well have done the same in the past – but, being at a very low ebb at the time, could not help feeling a twinge of self-pity. On another occasion, I phoned the hospital about 11 p.m. and asked to be put through to the ward where my mother was dying. The ward nurses had told me I could ring at any time, but the telephonist was reluctant to make the transfer, and sharply reprimanded me for calling after visiting hours.

Leaving these minor incidents aside, my relatives, friends and healthcare professionals were tremendously helpful to me both on practical and emotional levels. Research consistently shows that good social support is an important factor in buffering the adverse effects of life events, and my experience showed me that this is very true. I will always be grateful to those who took time to listen while I confided my troubles, brought meals to the house when I was too unwell to shop or cook, gave lifts to the hospital when I was too unwell to drive, or sent supportive emails from overseas.

My main confidant and support was Brian himself, and though we were close before his illness we have become even closer since. Finally, as an animal lover, I must also mention the comfort provided by the presence of our three cats.

The long and winding road to recovery

Today is a Sunday, and also All Saints Day. After many weeks of absence, I’d been looking forward to returning to St Patrick’s Cathedral to sing in the choir at 11 a.m. Mass, always an uplifting experience. But I didn’t make it. With our various family health issues still ongoing, dealing with domestic practicalities and medical appointments leaves little time or energy for anything else.

Although life is still not easy, there are plenty of good things to be thankful for. Brian is making a splendid recovery from his cardiac surgery five weeks ago – though an atheist, he talks of a “miracle”. He can go for long walks on the beach; climb up and down the steep hills around our house; and do some work in the garden. The limiting factor is that he cannot yet lift heavy weights, because it will be three months before his divided sternum will be fully healed. Nor, because of the pacemaker insertion, can he raise his left arm above shoulder level. His mood is cheerful, and there is no sign of the cognitive impairment which he feared might follow such a massive operation. Having reached the age of 82 without being on any regular medication, he is now on five different drugs, which are presumably necessary at present though we hope some of them can be discontinued in future.

Meanwhile, the health of my 91-year-old mother has become the main focus of care and concern. Now home from hospital following emergency abdominal surgery, she is making a good recovery from the operation itself, and striving with great determination to cope with independent life again. But there are problems with managing her ileostomy and I only hope a satisfactory system can be worked out, and that it will be possible to reverse the procedure in a few months time.

My own symptoms continue on and off, and while further investigations are in progress I try not to worry about them too much. Friends and family continue to be wonderfully supportive and we have greatly appreciated all the messages of support, the lifts to hospitals, and the gifts of food and flowers including this lovely bouquet from the Cathedral Choir.

Flowers from choir