At 2.30pm on a sunny July afternoon, I was chopping salad for a late lunch when my 58-year-old husband stumbled up the front path looking half-dead. For the next five weeks I sat by Simon’s bedside in the intensive care unit of St Thomas’ hospital in London while he lay unconscious in a life-threatening coma as a result of viral encephalitis.
Over the course of the next months and years, he would eventually complete an extraordinary recovery, but during that five weeks, as a complete newcomer to hospital life, I learned more than I ever wanted to know about what Susan Sontag calls “the kingdom of the sick”.
The serious illness of a friend or family member is hard for anyone to deal with. It’s unfamiliar, frightening. And when we don’t know how to respond, our instinct may be to back away, dissociate, and distract ourselves with “ordinary life”. However, if we can manage to stay present and open when a friend or family member falls seriously ill, it offers an extraordinary opportunity to strengthen bonds and to deepen our understanding that none of us can get by without the kindness of others. Based on my experiences that summer, here is my advice for anyone who wants to offer practical and emotional help to those who are facing a medical emergency, and their family and friends.
Be prepared to offer your unconditional love and support to those whose existence has been turned upside down
In my case, my brother, my husband’s brother and Philip, who was best man at our wedding, were the trio who remained steadfastly by me at every twist and turn, and who I knew I could call on at any time of day or night, whatever state I was in. Philip either visited or texted every day. “In the best possible sense,” he said, “I wouldn’t miss this for the world.”
Don’t assume you deserve to be part of this inner circle, or have the right to join the family at the bedside
As the patient lying in bed 12 of the intensive care unit rapidly became the entire focus of my existence, so my boundaries shrank and my ability to relate to others contracted. I’ve since wondered why all the people closest to me at this critical moment were men. Perhaps it’s because I feared emotional intimacy with my female friends, and the possibility of breaking down.
Find gentle, non-invasive ways to reach out to the family in crisis, even if you don’t get a response
In this unfamiliar and terrifying landscape, it was often the small kindnesses that touched me most. Stepping outside the ward for a cup of tea and finding a thoughtful text on my phone; receiving regular cards of beautiful landscapes from my brother, with the simple words “thinking of you” written inside; the anonymous friend who arrived on the ward one morning with a gift of biscuits and fruit “for the nurses who are caring for Simon”. I never found out who that person was.
Don’t expect regular updates
I quickly learned that responding to a deluge of requests for information is exhausting and time-consuming, especially when the situation is changing from hour to hour. Instead, a friend kindly set up a private Facebook group for us. Every evening, before going to bed, I read and re-read the heart-warming posts that arrived from all over the world. This also enabled me to ask for advice – for example, about what music to play at the bedside (I became the equivalent of a hospital DJ) or what essential oils to use on Simon’s feet, as we tried everything possible to bring him round. There are a range of websites that offer a similar forum for sharing updates, messages and photos, and for setting up rotas for visiting and helping out.
Offer practical help
One evening I returned home to find a blue plastic carrier bag on the doorstep. It contained a home-cooked casserole, which fed me for days, both physically and psychologically. Other families might welcome childcare, lifts, and even DIY. Perhaps there are insurance claims to set in motion. I became obsessively anxious about Simon’s treasured bicycle, which had been abandoned somewhere near Waterloo station. I knew that if he recovered he’d be devastated to have lost it. It was eventually tracked down to a bike rack at the back of the Royal Festival Hall, secured by a combination lock which none of us could decrypt. A friend called Paul immediately offered to hire a set of bolt cutters so that he could cut the bike free and take it safely home. Despite my anxieties that this was a rather risky project for a Kurdish refugee to undertake, he got away with it.
Be punctual and reliable
The family of the sick person may be on a knife-edge. Everything else is uncertain for them, so if you’ve said you’ll do something at a particular time, it’s vital to show up. Facing some of the biggest unknowns of my life, including the imminent possibility of becoming a widow in my early fifties, I relied on people meeting up or helping out exactly as arranged. Being let down felt like an additional calamity.
Have staying power
After the initial drama, there’s an understandable tendency to take someone off your worry list and forget that during the aftermath the family may need your support more than ever. I experienced intense loneliness the year after Simon’s illness, as he began his recovery, partly because everyone assumed I now wanted to be left alone. Sensitivity was also important. When a friend commented: “You look so much better – so strong and happy,” I found it hard to tell them that, actually, I was feeling weak and miserable. The conversation ended there.
Try not to talk to the family about any distress you may be experiencing
They will have enough issues of their own to deal with. There’s a fine line between showing empathy and looking for help with your own upsetting emotions, however tempting it may be. If you need support for yourself, make sure to find it somewhere else.
Don’t share your big theories about why this has happened …
… how everyone will be stronger for it, and how there will be a silver lining. It’s very unlikely that this will be helpful.
If it feels important to you, do pray: discreetly, and in your own way
I was constantly uplifted by the way that friends and acquaintances of all spiritual backgrounds – Christian, Buddhist, Muslim, Jewish, Hindu, pagan and atheist – weaved a web of light and love around Simon and I. Even as a Buddhist, I found it inspiring to hear that people were lighting candles in Lindisfarne, Lourdes and Jerusalem for us, and that a needleworker I’d never met was praying for Simon with every stitch.
Bed 12 by Alison Murdoch is out now, published by Hikari Press, priced £9.99