Health

Thank you Oliver Sacks.

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I’ve just read the article published in the New York Times on the 19th of February where  Oliver Sacks announced that he had been diagnosed with terminal cancer.       (My Own Life.)  It’s a beautiful piece of writing- moving and provocative, hopeful and inspiring. But then, hasn’t Oliver Sacks always been challenging, moving, inspirational?

Oliver Sacks, Professor of Neurology at New York University.

Oliver Sacks

Oliver Sacks

I first heard of Oliver Sacks when “The Man who Mistook his Wife for a Hat” was published- an account of his work as a neurologist with patients living with difficult and rare conditions,  such as Tourette’s Syndrome, Autism and Parkinsonism.  Amazing stories about the resilience, courage and resourcefulness of these people, examples of our capacity to change and adapt. I knew little about such conditions, so this book was eye-opening.

“Awakenings” is probably his other most well known work. It’s an account of his work with a group of patients suffering sleeping sickness, years after there had been a pandemic of the disease. He was able to wake them, briefly. A sad and amazing story- later made into a movie starring Robert de Niro and Robin Williams.

His article begins

“A month ago I felt that I was in good, even robust, health. At 81, I still swim 1.6 kilometres a day. But my luck has run out….now I am face to face with dying”.

He continues

“It is up to me to choose how to live out the months that remain to me. I have to live in the richest, deepest, most productive way I can….”

I could take that statement as the way I want to live my whole life.

And…

“Over the last few days, I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts. This does not mean I am finished with life.

On the contrary, I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight.

This will involve audacity, clarity and plain speaking; trying to straighten my accounts with the world. But there will be time, too, for some fun (and even some silliness, as well)…..

I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and been loved; I have given much and I have been given something in return;…

Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.”

IMG_0327Please, I beg you to read the article. Like me, you will be moved, challenged and inspired. What I would say if I received this diagnosis? What would I want for the time remaining me? How would I feel? How would I sum up my life?

How would you sum up your life? What would you want for the time remaining to you?

What better than to be able to say

“I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and been loved; I have given much and I have been given something in return…above all, I have been a sentient being, a thinking anima, on this beautiful planet, and that in itself has been an enormous privilege and adventure.”

Nighttime Rituals.

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Writing101. Daily prompt.

More and more of us go to bed too late because of sleep procrastination. What are the nighttime rituals that keep you up before finally dozing off?

“Oh sleep! it is a gentle thing,

Beloved from pole to pole!”

Yes. yet another cat picture! But, oh how he sleeps.

Yes. yet another cat picture! But, oh how he sleeps.

Coleridge’s Ancient Mariner had it right. Sleep, it is a blessed thing. Without it, it’s difficult to function, without it I stumble around in a haze of exhaustion, my constant focus on staying awake and making it through the day.  I look back on my life now and wonder how I ever survived. How did I stay in jobs? How did I stay sane? Why didn’t I get help?

What’s the response if you mention you can’t sleep? For me, there were several:

You just need to pull yourself together. Anyone can sleep if she only tries. It’s all in your mind. Just tell yourself you will sleep, and of course you will. It’s not nearly as bad as you think…stop whinging, pull yourself together…

I’ve heard them all. So I lived with it. Then one morning, driving to work (late as usual), I heard a specialist in sleep disorders interviewed. It was a moment of revelation- he described me! I had a sleep disorder, therefore I could get help.

Imagine the power of that moment, the sense of liberation I felt.

I saw a hypnotherapist. I slept.

I shall never forget the next day. I spent it in wonder, marveling at how I felt. If I felt like this, I could accomplish anything. Fly to the moon! Climb Mt Everest! No limits! Maybe those people who slept well, always felt like this?

It wasn’t permanent. I struggled on. Naturally a night person, I went to bed late, took hours to go to sleep and stumbled out of bed, jet-lagged, every morning. I rarely did the things I knew might help me sleep.

Then, a few years ago… brain surgery. My sleep was destroyed. I persevered and endured and heard stories of others whose sleep had been destroyed following brain surgery.

Until… crisis. I could endure not one minute longer.

An emergency visit to the doctor I had recently found ( a miracle in itself) followed, a demand to be hospitalized and sedated and insistence it happen that day. He took the necessary steps. I was sedated that day and hospitalized the next. (And my undying gratitude to my wonderful friend who stood steadfastly by me through this time- thank you Brian. )

So, nighttime rituals? routines? Yes! I have evening routines. I’ve learnt their importance.

  • No television, no phone calls, no computer after a particular time;
  • mindfulness practice and walking a few hours before bedtime;
  • the same bedtime every night and the bedroom only for sleeping and loving;
  • And the other usual routines- showering, teeth cleaning etc…. and for me attending to the needs of a stoma.

I’m not that good at sticking to these routines, even though I know the consequences of neglecting them.

And yes, I have rituals. I find the routine of bedtime soothing and settling, but the rituals lift it to being somehow hallowed.

Let your light so shine. A candle, shining in darkness.

Let your light so shine.
A candle, shining in darkness.

My rituals?

  • Settling; becoming aware of my posture; taking some time to focus on my breath;
  • Lighting a candle and and placing flowers on my small table if I have them;
  • Remembering those I love; practising a loving-kindness meditation;
  • And reflecting on the day with gratitude. There is always something for which to be grateful.

Do I always do this? I confess that I don’t. I have no excuse and I choose not to beat myself up about it. I know some of the habits that will disrupt the flow – I must tape any TV programs I want to watch and it’s better if I don’t have a novel waiting to be read. I seem to have little discipline.

And evening shadows fall across the sky.

And evening shadows fall across the sky.

Writing this has reminded me of the beauty of my simple evening. Tonight I will start my routines early and I will finish the day with candles, beauty, quietness and a grateful heart.

 

 

 

Life with a stoma.

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I live with a stoma and ileostomy. This means the end of my small intestine (ileum) is drawn out to my skin to form a stoma. I then stick a base plate to my skin and attach a pouch to that. The remains of my digestion- which for you passes into the large intestine for further digestion, empties through the stoma into the pouch. Literally, the facts of life for me.

I’d had ulcerative colitis, hence my long hospital stay and  life-threatening, traumatic emergencies.

Finally, to live or die meant emergency surgery and a body changed forever.

For more than forty years I have lived because of this.  Lived in gratitude, but lived in isolation, never knowing another person with an ileostomy. It’s what we do, isn’t it? We pick up the pieces and carry on. I have never thought about this or realized how lonely it’s been, until last year when I found my best friend from childhood again, and she too, lives with a stoma and an ileostomy. What are the chances of such a coincidence? And how wonderful that I found her!

We compared notes. What appliances do you use? and do you find that works best? What do you do when you’re in a room, full of people, everything’s quiet then your stoma starts gurgling and spluttering? And clothes! Can you wear something that’s close fitting across your stomach?  I always like to have a top that’s loose, do you?

So many questions, and so many more to come. I wish I’d had someone to talk to when I was younger, single and had met a potential lover. When do you raise the fact of a re-arranged digestive system and the additions to one’s tummy?  I wonder what other people do? How do you know the moment to call the ambulance when suffering a bowel obstruction?

We have only just begun this conversation. There’s so much I want to ask her about, so many experiences to share that only a fellow ostomate can share.

Here I need to acknowledge my friends, my friends who listen to me day and night, who meet me with compassion, love, tenderness, empathy and endless acceptance and support. I could not ask for more.

Then, just the other day, a friend who needed a catheter and drainage bag for a few days said to me (we were talking about showering) that he now began to understand a little of what I lived with every day. An insight for him and validation I hadn’t had before for me. Sometimes you don’t realize you lack something until you get it.

I was having a cup of tea with another dear friend when out of the blue she asked me about the details of stomas and pouches and all. Like, how does it stay on? Why doesn’t your skin become infected? What do you use? Show me. Show me the pouch. Show me where it is. Can I touch it? What do you need to do every day? What’s it like? Do you ever forget it’s there?

She listened. She listened with her full attention, no judgement, no revulsion, just full attention. Finally, she sat back and looked at me, then spoke.

“Kathryn, it’s a miracle.”

Other people have mixed responses, but there was nothing here but clear insight:  “It’s a miracle.”

And it is. I live with a miracle.

I offer this to others who live with a stoma: colostomy, ileostomy or urostomy in the hope that it may offer some validation of your daily existence. And in the hope that this post may begin a supportive community. Talk to me!

 

 

Celebrating generosity

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The thrill of  a wonderful surprise! And even better, it leaves a glow.

Two days ago there was a ring on my doorbell, and there was my lovely parcel delivery man. Now I’m expecting a parcel so I wasn’t surprised to see him, but I was surprised to see two cartons.

imagesDEQMWLV5He said something about wine but that wasn’t what I’d ordered so I didn’t take any notice. Refused his offer to carry them inside, couldn’t easily lift them and realised… they were cartons of wine! Huge excitement! This was only the second time in my life anyone had ever sent me wine. The last time it was champagne as a house moving present. That was pretty special.

Now I had a fairly good idea of who had sent them and I think a surprise is even better when you can work it out. There’s the pleasure of the unexpectedness, of how perfect the choice is, and of the generosity. I didn’t realise how generous it was until I opened one carton, to find not six, but twelve bottles. I had been sent two dozen bottles of wine!  Wow! Talk about feel spoilt!  It isn’t just the delight from such a surprise , but the feeling of being valued and of being worth such a gift.

Maybe it’s serendipity, but I’ve been thinking about generosity and unexpected gifts. During a very long, traumatic and scary hospital stay, several months of which were in Fort Worth, Texas, I received many, many gifts, often from people I didn’t know.

My veins are very narrow, making it difficult to insert  cannulas or extract blood samples. I’ve been remembering one time in particular, when a young medical intern was attempting to get a syringe in. Now I was used to nurses and doctors needing to keep on trying, sometimes giving up. I’d learnt to gaze out the window, think of other things, grit my teeth and endure it. This time, I had reached the end, for the first time ever. As I was about to ask him to stop, he did. We talked a moment and he left. It was one of those times when you truly meet someone- I guess the experience was intense for both of us and we were probably around the same age. I was far from home, desperately ill.

they're not yellow, but they sure are beautiful.

they’re not yellow, but they sure are beautiful.

The next day, a huge bunch of yellow roses, an absolute abundance of roses, was delivered- no name, just love and best wishes. I knew who had sent them. I was overwhelmed- really, the scraping at my veins hadn’t been that bad. . They carried me through the next difficult hours. How could I not continue to hang in when I could look at those roses and be reminded of compassion and kindness. So, young Texan doctor, I think Dr Macdonald, all these years later, I have never forgotten you and those roses.  From the bottom of my heart, I thank you.

Me

One lesson I need to keep learning from such memories is to be generous myself. And generosity is not only about things that cost money. It’s the gift of time when someone needs it, even though I may not think I have that time to spare. And it isn’t simply taking the time, it’s giving it without counting the cost.  I forget about the little things: sending the card, writing the letter, making the phone call, asking how someone is.

May I always remember to give back, I, to whom so much has been given.

And thank you for flowers, wine, visits, cards, listening, money when I ‘ve been desperate… the list goes on and on.

 

 

Breathing

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Breathing. Now there’s a subject. What is there to say about breathing? It’s as natural as taking a breath? or…

Once during my long hospital experience I became obsessed with breathing and asked everyone who walked into my room “How do you breathe?”  Inevitably, the response was something like “in and out”, just “in and out”.  No one stopped to ask the (obvious) question of why I was asking such a question. But that’s another story.

mindfulnessI am in the middle of an eight week  mindfulness program and have just done a full day silent mindfulness retreat. Rather focuses the mind on breathing and breath!

I’ve been on the edge of meditation practice for more than twenty years In the eighties. friends did Transcendental Meditation workshops. Later, friends went on Vipassana retreats and Mindfulness practice. Buddhism, with its focus on practice became more common.

My partner did two TM programs with his workplace. One misty, rainy night, looking over a country town, he turned to me and said, “Close your eyes, with each breath repeat this…” and guided me through a TM session. I remember tears rolling down my cheeks and knowing there was something precious about this gift. Since then, I have practised intermittently- the times I’ve needed the practice most being the times I ‘ve been most intermittent.

IMG_0317Sitting on my back deck this morning, looking over gentle green hills and a sky filled with gorgeous clouds I found myself reflecting on myself and breathing. (I know that sounds ridiculous, but stay with me.)

How many times are we aware of breathing? It’s so fundamental because without it there is no life, we are our breath. Or it just happens, as all those people said to me back in that hospital room.  But then and other times I have been intensely aware of it. Complete focus on breathing stopped me from giving up during that long experience of illness.. In extreme pain and discomfort, tubes everywhere and surrounded by machines, I said over and over to myself: ” I only have to survive this breath… and this breath… and this breath”;  and I kept on going.

And then twice, that breath stopped. Have you any idea how terrifying it is not to be able to breath?  To feel yourself falling into unconsciousness? The second time I clutched at the sleeve of the medical registrar saying “don’t leave me!” I remember nothing else, until, much later, the awareness of a tube in my mouth and a machine clunking in and out, my parents holding my hands.

But my experiences are so small. One of my brothers was an asthmatic back in the days when doctors believed the condition may have been psychosomatic. My parents were told not to pay it any attention. I would lie in bed listening to him struggle for each breath, not knowing if there would be one. I cannot imagine what it was like for that little boy.

As for now? I know to be grateful for each breath I take and I shall continue to spend time each day in the formal practice of mindfulness. Who knows what that will bring?

Take a moment to be aware of your breathing and be grateful for simply being alive.