It’s evident that our best man Philip is equally downbeat about Simon’s prospects. A mutual acquaintance tells me that he has quoted a 10% chance of Simon making a full recovery. “Oh really?” I reply, paddling fast below the surface. Philip later denies that he ever said this. I suspect that he gets supplementary information from his partner Mike, the medical consultant, and I appreciate his discretion in filtering anything he shares with me. A few days later Philip is unusually insistent on having some time alone with Simon at the bedside. I take myself off to the café downstairs not knowing that he is bidding a private farewell to his witty, imaginative and creative friend, in the likelihood that after two weeks of lying there with a severely infected brain there isn’t much chance that Simon’s mind and personality will ever be the same again.
The only light-hearted moment comes when the doctors investigate why Simon’s belly has swollen up dramatically and is now taut like a drum. I wonder what new medical horror story is about to unfold. They do an X-ray and find his belly is full of—gas! It is probably a reaction to the drug regime, and produces some much-needed Carry-On-style laughter at the bedside. Despite all their sophisticated drugs and machinery there’s not much the medical team can do about gas.
For some strange reason, I feel relatively calm about recent developments. Of course I don’t like the idea of not trying to bring Simon round each day but, unlike the medical staff, I know he’s a person of great strength and determination who invariably pulls through at the last minute when least expected.
With immaculate timing, my musician sister Kate pitches up in ICU. Her own experience of recovering from meningitis and of playing music to palliative care patients gives her a special sensitivity to our situation. She’s brought a small Tanzanian thumb harp with her and for the next couple of hours she gently plays and sings around the bed, creating an invisible tent of comfort and support around Simon and myself. We’ve been told that it’s customary to seek permission from the ward sister for any live music but this is very discreet, and all the nurses within earshot are supportive, perhaps because of the events of the morning.
After Kate leaves I sit for a while longer by the bed holding Simon’s hand lightly in my palm, and suddenly an extraordinary thing happens—he is gripping me back so hard that my fingers begin to go numb. I beckon for the nurse to take a look, partly because I can hardly believe it myself, and need to know that it’s not just wishful thinking. After about 45 minutes his grip loosens but is still strong for another 45 minutes. I’m not convinced this comes from him personally: it feels more like a gift of reassurance and encouragement from the universe after our earlier disappointment. Even if Simon wasn’t ready to come out of his coma today it’s a sign of hope that everything will eventually turn out okay.
CHAPTER 11
A web of support
One of the many things I have learned in this second week is that one of the biggest challenges in any health crisis is how to keep friends and family up to date with the latest developments without becoming exhausted or distracted, and how to match their kind offers of help with what I actually need or can handle at the time.
Only the very closest family members and friends have been encouraged to visit Simon in ICU. It feels important for both him and I to keep the zone around his bed as peaceful as possible. However something particularly lovely happens on the ward one morning. As narrated by the ward sister, a man in cycling gear with a particularly big smile arrived with gifts of biscuits and fruit “for the nurses who are caring for Simon.” I am touched by such quiet thoughtfulness and generosity, made without any kind of expectation or demand. I wasn’t around at the time, and the sister apologised for not remembering the man’s name.
Nobody wants to hear a telephone ringtone on an acute ward, so texts have become a lifeline. I feel very fortunate to discover a warm and loving text on my phone in almost every moment of need. As long as no reply is expected this is a wonderfully immediate and effective way to offer support. Although the hospital offers free wifi in the public areas I am reluctant to spend my limited energy on email. It seems I’m not the only one: the hospital cafés and other gathering places are full of real conversations taking place in real time.
At the weekend, I raid Simon’s phone to get the numbers of some of his close male friends. We’ve always believed that having separate friends of our own gender is important to a healthy marriage, so these aren’t people I’m close to but they nevertheless need to know what’s going on. One of them is an old drinking mate and also an IT enthusiast and he offers to set up a Facebook page on our behalf.
His first posting gives me an outlet for the anger that I’ve been unknowingly storing up inside. Instead of making me smile, the flippancy makes me see red.
Okay Simon is in Intensive Care at St Thomas’ Hospital. We will be trying to use Facebook to let people know what his progress is. So at the moment: Visitors? No visitors just yet, he is in intensive care (watch this space).
What is he doing there? Hopefully, being looked after.
I mean . . . why is he there? *Alison to fill in*
Can we send him Grapes/Airfix Kits/Cards etc? *Alison to fill in*
Perhaps I’m getting my just desserts. Simon would wince at the decision to set up a Facebook group in his name. And he wouldn’t be the only one. It turns out that many of our middle-aged friends find themselves overcoming long-held prejudices to open an account and join the group, while others choose to access it via their children’s accounts.
I’ve always felt that due to our tendency to get absorbed in our jobs Simon and I have been rather cavalier about nurturing friendships, so it’s a wonderful surprise to find out how many people care about us. There is a growing swell of concern from our friends around the world and for me Facebook turns out to be the perfect tool for engaging with them in my own time and at my own pace. Every evening I come home to a rich mix of poems, prayers, images and music, which I read and re-read with a mixture of smiles and tears.
Some of the posts conjure up the tangible presence of people whom I long to have alongside me in these difficult days. A message to Simon from his cousin Nigel brings that gentle spirit right into ICU alongside us, as if it were the scent of the bees that he keeps on his smallholding on the edge of Dartmoor. “Take your rest. Allow yourself to be healed. Be carried by the huge wave of love and respect we all feel for you and Alison. Know that we wait patiently for your recovery and long for your humour, wisdom, inspiration and life.” An old friend from Simon’s beloved Hungary posts an MP3 clip of Bartok’s Allegro Barbaro, explaining that listening to this piece of music is her own personal prayer for Simon. “That very rough and intense will to live, the will to survive in some way, which is the core of the Hungarian spirit, may help You in these times. Much love, Zsuzsa.”
I am also deeply touched by the tributes that pour in, even if they sometimes feel like funeral eulogies in advance of the event. Some tell me things I never knew: “Simon was supportive, helpful and engaging (as well as very generous!), when I staged a fundraising event to raise money for an orphanage in Madagascar.” Others elevate him so high that I hardly recognise him: “If Simon may not be a saint, O God, he surely must be one of the thirty-six ‘Lamed Vav’ righteous human beings on the face of the earth, on whose account, according to our ancient Jewish legend, You preserve our world, despite its pervasive evil.” Another dear friend is disarmingly honest: “I went to spend some days with Simon last summer in Devon. He took me out on his tiny boat and he rowed all the way round to another bay from Kingsbridge. I would have been exhausted in about two minutes, he never stopped and the water was choppy as a wind came up suddenly. Ok, he didn’t fancy rowing back, instead we parked the boat and had a lovely walk back home.”
Simon’s friend Alec from university days uses the Facebook group to remind us of happier times. “This Sunday I am going to the Lakes for a few days with my son and wife for some spiritual uplift, and I promise you every fell we climb I
will be saying a prayer for Simon. Years ago we walked the Yorkshire Dales together, Simon always encouraging our little group by telling us before each next stage “that there isn’t far to go!” I shall be thinking of those funny moments when walking in the next few days. Simon has always had the capacity to make me laugh. Alison, however far we all have to walk to get Simon better, we are all up for it. Be sure of that.”
To my surprise, one of the recurring themes in the group is gratitude. Courtesy of Facebook, it becomes apparent that I’m not the only person who is undergoing some kind of personal transformation. One of the side effects of extreme situations is that they remind us of what is meaningful in life. “It’s paradoxical that this ohso-serious situation has generated such unity and inspiration among such diverse people,” posts a friend in Amsterdam. “Thanks for offering us all this reason for connecting and focusing on what is important. We are many that are with you,” adds a friend in Copenhagen. From another friend in Raleigh, North Carolina: “Thank you for the opportunity to express our love to you and feel connected at this time. May Simon hear and feel your love and that flowing through us all to you both.”
A poet friend called Roger, who himself has extensive experiences of mental distress and hospital life, seems to sum everything up when he posts:
All those friends
all those prayers
medicine or spirit
wherever you are Simon
You will be safe.
And Alison
WEEK THREE
LIFE AND DEATH
CHAPTER 12
Self-care
“You have power over your mind, but not over outside events. Realize this, and you will find strength,” wrote the Roman leader and philosopher Marcus Aurelius. For the past two weeks I’ve been living spontaneously, simply reacting as best as I can to whatever arises with the speed, intensity and fragile balance of a ballet dancer on pointe. In some circles this might be seen as an advanced spiritual state of living ‘in the now’. Possibly—but it also makes me more vulnerable and unsteady. I am beginning to understand why hospitals put so much emphasis on routine, because it’s something for staff, patients and families to hold on to in the face of so many big unknowns.
On the bold but instinctive premise that I am a key player in Simon’s survival and recovery, I see that I need to pay better attention to my own health and well-being. What nutrition do I need, and when? What can I handle, how far can I stretch, and how do I restore my energies? What gives me strength, and what drains me or drags me under? When will I need company, and when will I need to be alone? It feels like there’s not much margin for error.
In a bid to strengthen my resilience for whatever is to come, Philip suggests that I review my daily routines. We call on a friend called Lois, a management consultant whose speciality is to assist individuals and organisations in planning better. Lois and I come up with the following 8-point plan:
1.
Continue my practice of getting out of bed as soon as I wake (a steady 6am), and immediately making my way to the hospital while the streets are silent and empty. Enjoy a precious hour with Simon before the morning shift arrives and while the ward is at its most peaceful. Gather first-hand information about the previous night to help me prepare for the day ahead.
2.
When the shift handover starts at 8am, take myself off to the precious quiet space of the hospital chapel to do my daily meditation practice, in which I can dive beneath the choppy surface waves to the luminous and calm depths of my mind.
3.
After chapel, treat myself to a bowl of porridge with honey at the AMT café. On the days when Simon is doing badly, skip the café and go straight back to the ward with a bottle of strawberry milk—my staple comforter, which I carry with me constantly—from the M&S in the lobby.
4.
Spend the morning quietly at the bedside, often with Philip but discouraging any other visitors. This is when consultants pass through, procedures generally get done, and—on peaceful days—I can read some prayers.
5.
Midday: take a break! My diary is open to all comers.
6.
Back to the ward for whatever the afternoon brings.
7.
At 8pm, when the shifts change, greet the new nurse and briefly show them any music that I’ve selected for the night hours. Take the longer cycle route along the river, imagining the wind and water flowing over me and washing the cares of the day away.
8.
Return home. After supper and a glass of wine, go online to read Facebook messages and sometimes to check emails. This takes until midnight, when I fall instantly asleep.
To my surprise, I have no sense of missing out on anything. During the first few days that Simon was in hospital a speech bubble might pop up unhelpfully in my head—“We would have been on a train in Spain today!”—and suchlike. Now any sense of another life or different priorities has faded. It’s like going on holiday and forgetting all your troubles, but in reverse.
There are also some advantages to this new way of life, which is unexpectedly giving me more space for reflection and for quality time with family and friends than I’ve had in years. For example, I’m thoroughly enjoying being a lady who lunches. Wealthier friends book a table at a nearby restaurant; other friends bring sandwiches for a picnic in the gardens. It doesn’t matter which—it’s all a break, a treat, a lifebuoy.
On the bleaker days when nobody’s free or when someone cancels, I force myself to do something—anything—to unwind, whether it’s reading a newspaper or staring at the river flowing past the hospital. In Week One I optimistically brought my jogging kit onto the ward, but now I feel far too fragile for that. I would fear spilling my tears and vital fluids across the towpath.
In the downstairs hall the hospital has organised a summer season of lunchtime concerts. Only a few of us seem to be regulars, but hundreds of others turn their heads to smile as they pass through. The quality of the music is outstanding. On one occasion a fire alarm goes off and beeps throughout.
In the evenings, our friend and lodger Sue usually prepares a simple supper for us both and—even more importantly—is ready and willing to listen to the events of the day. I later discover that Sue has evolved her own support network to help her with the gruelling experience of hearing my news every evening, whether good or bad.
A friend on the outside says with the best of intentions: “Good luck with the hospital visiting.” Those inside the Kingdom of the Sick know that for the duration, the hospital is your home and the centre of your existence. It’s the rest of your life that you’re visiting.
CHAPTER 13
Pneumonia
Reverend Mia the hospital chaplain drops by for what has become our regular Monday catch-up and advice session. She explains that after Dr Jones’ unsuccessful attempt to bring Simon round at the end of the previous week he will now be labelled a long-term patient. He may not be given the same priority by the ICU team and I will need to get used to watching other patients pass through and move on. These conversations are very painful but, akin to homeopathy, they function to give me strength by preparing my mind and body in some small measure for the difficulties ahead.
My original metaphor of travelling through a strange country isn’t working at the moment because I can’t relate to the idea of actually getting anywhere. Instead, it’s as if I’m running around a racetrack where each lap brings fresh challenges and unknowns. This week’s lap is the hardest by far. I don’t feel I have the necessary strength to run another lap—but here I am, getting on with it, because I have no other option. My inner athlete is training with unprecedented intensity.
It’s not as if Simon is showing any signs of recovery. On the contrary, his situation is getting worse. In the last few days, the skin of his neck around the new tracheostomy has become flushed and swollen and he’s pale, clammy, and sweats constantly. I learn that the infection indicators used in ICU—white cell cou
nt, and something called C-reactive Protein, or CRP—are going up. It’s soon evident that Simon has contracted pneumonia, which as my brother David warned was almost inevitable after so many days on artificial ventilation.
Because he is unconscious, the phlegm gathering in Simon’s lungs has to be sucked up manually through a tube inserted into the tracheostomy, a process that causes him to retch horribly. The more conscientious nurses apologise to the inert patient every time they do this. I watch as nearly half a litre of yellow phlegm is extracted via the hole in his neck in just a few hours, and hold his hand each time he retches just in case it helps. It is excruciatingly difficult to watch.
In terms of nutrition, Simon continues to be sustained by an unattractive tan-coloured liquid that enters through the tube in his nose and continues down into his stomach. At regular intervals the nurses pump his stomach to check that the food substitute is being absorbed. Possibly as a side effect of his fever, he now has a high level of unabsorbed feed (called aspirate) and I overhear a conversation about the possibility of putting him on something they call ‘total parental nutrition’. This initially has a comforting ring to it but I soon find out that’s not the case. It means that he will be fed directly into the jugular vein through the bolt in his neck. Neat and tidy maybe, but it increases the risk of infection and means that his gastric processes will close down. That doesn’t sound good at all.
We struggle on. My beloved husband is bright pink in the face, the colour of bubble gum, and never stops twisting and turning from side to side. I mop his brow, collect more paper towels from the basin in the corner and immediately return to mop his brow again. I recall my parents doing this for me when I was ill as a child and hope that somewhere deep down he is experiencing that same sense of comfort. Simon’s feet are deathly cold, so I hold them in both hands and gently rub them. It is a relentless and terrible day.
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