There is always a certain trepidation I feel when reading a book about someone with an illness I know very well. Twelve years ago, my much loved, cheeky, charming and romantic husband chose to refuse treatment for aspiration pneumonia and let nature take its course. He was 42 years old. The strong and athletic body that carried him up and down the rugby field had started to fragment and disintegrate. He’d had primary progressive multiple sclerosis for twenty years. More difficult than providing his care, was the fact that I have relapsing/remitting multiple sclerosis. Was I watching my own fate play out in front of me? Aspiration pneumonia occurs when the swallowing reflex is affected by disease, causing choking and the aspiration of food, drink or even saliva into the lungs causing infection. So, being something of an MS expert, I wondered if this book would affect my emotions strongly or whether the portrayal of the disease would be sugar coated to make it palatable.
Geraghty either knows MS personally or has done her research very well. Our narrator is Terry, a mother of two in that middling age where time seems to be divided between caring for elderly parents and teenage children. She is also worried about her friend Iris, who hasn’t been in touch for a few days. Terry decides to go and look at her house, so grabs the spare key and plans to check in. Her task is complicated when her father’s nursing home calls to say they’re doing work on the building and residents need to move out for a few days. Terry collects her father, Eugene, who has Alzheimer’s, and they make their way to Iris’s house with Dad singing Frank Sinatra in the passenger seat. Inside the house Terry gets a huge surprise. The house is immaculate: bins are emptied, surfaces are spotless and clothes are missing. Then Terry finds an envelope addressed to her and starts reading.
Iris is a strong character, who always wants to live life to the full, despite the limitations of her disease. She uses crutches to get around, but still manages to lead an interesting life. This makes it all the more difficult to comprehend her letter. Iris is taking the ferry to Holyhead on the first leg of her one way journey to Zurich. Iris means to take her own life, while she is still able to make decisions and before life gets too hard. The mobility issues and fatigue are manageable, but Iris dreads the thought of choking and having seen it with my own eyes I can understand the fear she feels. It’s a very difficult decision to curtail life while you are still well and love living it. However, from personal experience, it is harder still to realise you’ve left it too late, that you can’t administer the drugs yourself and are now trapped inside a failing body. Terry is horrified and her immediate thought is to get to Iris and change her mind. So begins an unusual road trip for the two friends and Terry’s dad. Will Terry be able to persuade Iris to give up her plans or will she return to Ireland without her? More importantly, can she stand by while her friend follows through with her plans for ending her life?
I know this sounds like really tough reading, and despite the odd lump in the throat, I found it engaging and very funny in parts. Both of these diseases are heartbreaking for patients and their families. However they can throw up some really funny moments. I remember once feeding my husband tomato soup when he choked and sprayed the soup all over my head until tomato soup was dripping off my fringe. These are often the moments that we treasure and remember. In the same way, some of Eugene’s quirks and experiences are charmingly funny. The two women have a great friendship and it was great to see two interesting, intelligent, middle-aged women at the heart of the story. I loved the way this journey is just as vital for Terry as it is Iris. In a couple of terse phone calls from her husband we can see that Terry lives to keep home running like clockwork for him and their daughters. This may be the first time Terry has ever taken time for herself, to pursue something important to her and place her friendship first. She worries and feels guilt, but she does it anyway, This shows us how much Iris’s friendship means to her. It is also interesting to see that in caring for two people with debilitating conditions in less than ideal circumstances, Terry forgets her own anxieties. Iris’s determination to live whatever life she has left to the full, seems to rub off on Terry.
Iris is a force of nature. I felt a kinship with her, not just because we share an illness but because we have the same fears and concerns. I don’t want to be a burden to anyone. I am also phobic about choking, which is a P.T.S.D response to watching my husband struggle for breath constantly. For about a year after he died I would wake up suddenly in the night and panic that I hadn’t checked his airway. The other comment that rang true for me was Terry’s observation of how others see Iris and respond to her disability. Iris thinks that people only understand visible disability. This is something people with invisible or varying disabilities know only too well.
I was reading this alongside Anna McPartlin’s Rabbit Hayes sequel ‘Under the Big Blue Sky’ where Rabbit’s love Jonny Faye has MS too. It gave me a stark reminder to keep looking after myself and enjoy all the things I want to do, just in case things get worse. So I booked a trip to Venice. Me and my other half, in a canal room with a balcony for a whole week. It took a while to find my new love and I’d been alone for several years. I understand that isolation is damaging, when you top it off with a life limiting illness it’s even more so. I can see how Iris feels alone when she makes this choice. I think Geraghty writes this with experience and compassion. Terry believes she can make Iris fall in love with life again and luckily that is what my new partner has done for me. He’s popped the sparkle back into my eyes and reminded me of who I am.
Thank you to Random Things Through My Letterbox for the chance to host today’s blog tour. Please check out these other great bloggers.
The Lotus Readers 