Life with a stoma.

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

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.

 

 

Solar Day!

 

they arrive.

they arrive.

It has finally arrived! After months of worrying over quotes, driving people to distraction with endless questions, bombarding one of my brothers for information and trying the endless patience of my co-house owner …I settled on the supplier (yes, in consultation with my co) and accepted their quote for installing solar. Then, it was waiting for the installation.The original panels were no longer being made…postpone the day…then…It was raining! postpone the day…then…other people had to be done first…postpone the day…then…The weather forecast for Friday was for rain and storms! Would it happen?

Aren't they beautiful?

Aren’t they beautiful?

The men arrived. Looked rainy. Nail biting. Work began. And continued…slowly, or so it seemed to a waiting woman who had been saving her washing, the ironing, the vacuuming…(some people who know me well, might ask “what’s new?”). They worked. Tedious business, this. Very hot, especially in the roof cavity, they say. And they worked. I go out, come home, still working. Even hotter. Four-thirty, and yes, the panels are on, but the micro-inverters are yet to be connected and no, they are sorry, but that won’t happen today. My house looks like it has solar, and it will, but the washing still waits.

Suit the house, don't they?

Suit the house, don’t they?

Maybe tomorrow? But it doesn’t matter! It will happen and this household will be less dependent on the use of fossil fuel, which has always been the aim. The release last week of the IPCC report makes the use of alternative sources of energy ever more crucial. I haven’t wanted  solar simply to save money on my energy bills and I don’t think we will save much initially. But I have worried about the state of our planet for a long time. I remember sitting in the  movie theatre after watching “An Inconvenient Truth”, not able to leave. I was crying too much. There really wasn’t anything new in the film, it was the sight of our blue planet suspended in space. I loved her fiercely and I hadn’t realised how much. I love this earth; I love all the bits; I want to see as much of her as I can; I love her creatures; the glimpse of a whale is joy and delight; the thought of polar bears starving to death because of what we have done I find almost unbearable.

What if they were gone forever?

What if they were gone forever?

Because it isn’t just about us. Yes, the report contains dire statements about Australia- more extreme heat, more bushfires, more storms and severe floods. Think of the suffering of the animals every time there is a bushfire, every drought, every heatwave. I remember Stephen Fry in the series “Last Chance to See” a BBC 2009 production, filming rare and endangered species. I was moved to tears when Stephen bottle feeds a baby rhino and declares to the camera “Now I can die”. I feel I am not doing nearly enough. I still drive a car. We will grow as much of our food as we possibly can and we will share what we have with our neighbours. I will work to create community here where I am. I am learning to live frugally and simply. BUT…

Five minutes from my front door. I am grateful every day.

Five minutes from my front door. I am grateful every day.

We have a beautiful home, let’s do whatever it takes. After all, changes in our lifestyle can’t hurt us and may make all the difference!

Breathing

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.

 

Listening would change the world

I believe with my whole heart, that if we were to practise the skill of active listening we could change the world. Just think about it. Simply by being given the gift of active listening people would feel heard and validated; conflicts would be far fewer because we would truly understand what the other was saying; sometimes if we ourselves were truly heard we would be helped to understand what it was that we wanted to say.

Now this is coming from an accomplished chatterbox. I’m one of the world’s talkers. However, learning the skill of active listening transformed my life. I was no longer totally intimidated by situations. I knew I could always simply reflect back what I had heard. And when I am focused I can choose to offer to the other the gift of true listening. I don’t always talk! When was the last time you truly felt heard? You know that, in your gut, this person has heard what I have to say and may even have helped you to understand yourself better?

One of my favourite things is to teach Communication Skills. Having some of those skills has empowered and enabled me. It is thrilling to share them and watch as light dawns for people. However, it is not simple. I have found that one of the most challenging things for most people is to listen and simply reflect back what they have heard, without giving advice. It seems to be hardwired into our systems to give advice. Maybe it comes from a need to make things better, I don’t know, or maybe we don’t want to feel bad. You think about it- do you want someone to tell you what to do? Or do you want someone to truly hear you? My bristles go up the instant I start being told what I should do, unless I’ve asked for help and that’s completely different. And here I feel I need to apologise to my friends for the endless times I still fall into the trap of giving them unnecessary advice. All we need to do is, listen.

This poem says it all: Listen

When I ask you to listen to me and you start giving me advice you have not done what I asked. When I ask you to listen to me and you begin to tell me why I should not feel that way, you are trampling on my feelings. When I ask you to listen to me and you feel you have to do something to solve my problems, you have failed me, strange as that may seem. Listen! all I ask is that you listen. Not talk or do- just hear me. Advice is cheap: 50 cents will give you both Dorothy Dix and Dr Spock in the same newspaper. And I can DO for myself; I’m not helpless. Maybe discouraged and faltering, but not helpless. When you do something for me that I can and need to do for myself, you contribute to my fear and weakness. But when you accept as a simple fact that I do feel what I feel, no matter how irrational, then I quit trying to convince you and can go about the business of understanding what’s behind this irrational feeling. And when that’s clear the answers are obvious and I don’t need advice. So. please listen and just hear me, and if you want to talk, wait a minute for your turn; and I’ll listen to you. Anonymous.

The Importance of Naming

I wonder how you see yourself when you’re reflecting. Do you see yourself as a woman or a man? Or do you think to yourself, after all I’m only a girl, or only a boy.

Having just celebrated International Women’s Day seems a good time to talk about it.

poster from "Rosie the Riveter"- documentary about women performing traditional men's jobs during the Second World War.

poster from “Rosie the Riveter”- documentary about women performing traditional men’s jobs during the Second World War.

Living in the country I’ve been disappointed and dismayed to hear how common it is to label women as girls. And surprised at the responses I get when I point out to someone that actually, I’m a woman, not a girl. It saddens me when I hear mature women giggle and say that oh no, they’re only girls.

I thought this was a battle that had been won back in the seventies.  Some people respond when I object by saying that surely it’s not important. To which I want to say, well then, why are you protesting and why is it difficult for you to use the term” woman” rather than “girl”. If it doesn’t matter then it won’t matter what term you use and you’ll find it easy enough to do.

Because it’s never only words. Language, the very words we use, shape how we think and who we are. Many traditional cultures have rituals and strong beliefs around the significance of names. Revealing one’s true name can give the other power over you; in others, names are not given until initiation ceremonies. If words don’t matter, then why do we need a Racial Vilification Law? And why could one of our footballers successfully object when a young spectator called him a nigger?

Of course words matter!

Listening to a university conference for young women some years ago I was moved by one of the young participants. She got up and began to introduce herself as  “I’m a girl in”…pause…deep breath…”I’m a young woman in year 11″….A moment of insight and change for that young woman and one requiring courage.

I confess that when I name myself as woman, sometimes I still need to take a breath, because to do so I am acknowledging my maturity, my strength, my power and my responsibility for my own life. If I’m only a girl then I can still expect someone else to look after me.

To my shame I remember a moment with my primary class back when I was in my early twenties. We were playing a ball game and as one of the boys was about to throw to me, I said ” Remember, I’m only a girl.” He was a child, maybe ten, I was an adult. I still cringe when I think about it. What was the message I, as his teacher, was giving? Unfortunately that’s not the only time I’ve taken refuge in the excuse “I’m only a girl!”

However, the most telling illustration for me about the power of names  is a story told by a South African man. As a boy in South Africa one of his mentors was the African man who worked in the garden of his parents’ home. There were household changes and this man took over some of the house chores.

His story goes that one day he commented to his mentor that he hadn’t realised  he was a house boy, as well as a garden boy. The African man drew himself up, gazed at the boy and said “Son, I’m a man, not a boy.”

Do I need to mention colour distinctions here?

So, women, let’s be proud to be women- strong, mature and beautiful!

P.S. I would love to know what you think!

if only…

if only...

if only…I don't think "if only" crossed the minds of Bear or Pusska.

 
I don’t think “if only” crossed the minds of Bear or Pusska.

if only I’d… asked for help… told someone how I felt… known I was valued… taken the chance to… spoken up for myself… told my side of the story… let  them know I loved them … gone to visit that last time… gardened at every opportunity… gone to the beach every possible moment… rung when I thought of it… this list is straight off the top of my head and I could go on and on…

I wonder if you live with some “if only’s” in your life and what they might be.

You might be thinking it sounds negative, as if I’m judging myself, but I find the opposite is true. My if only’s are learning moments. They can lead to self understanding and to insights about myself. I’d like to think that by learning from them I don’t repeat them. If only that were true! I can be a very slow learner.

The if only I’ve been thinking about happened a long time ago. I was teaching in a very good private school in Melbourne, a few years after I had been desperately ill and spent many months in hospital. I was still frail, with limited energy and had moved to Melbourne after finishing an Arts degree the year before- full-time study had taken less energy than working full-time…although, if only I’d had more energy…

Back to this story- I had a wonderful class, bright, sassy and I loved almost all of them. The principal liked me and showed me he valued me. I had, unwittingly, come after an unpleasant situation and, without knowing, saved the day for him.

Not having taught for about five years I found I had lost my confidence. At night after work, I quite simply lacked the energy to plan and organize. I felt unable to deal with any classroom management issues- not that there were many, this was the dream class; I couldn’t have organized programs and all the other things expected of teachers.

So… you can probably guess how this story ends. The shared household where I was living was proving to be more difficult than I’d expected, I certainly lacked the skills and confidence to deal with that, so… I ran away back to my home city. Couldn’t face the Principal, wrote a letter in the holidays.

What did learn I from that, many years later, when I was a bigger person? You’ve probably been shaking your head, wondering how anyone could be so dense. Yes, I could have gone to him, told him how I was feeling and, I am absolutely certain, I would have been given unlimited help. It was that kind of place. I could have been happy there and may have reclaimed my teaching career- but that is pointless conjecture.

What I do know, clear down to my bones, is that a plea for help would have been heard and answered.

However, to ask for help, I needed to know that I could. Sounds obvious? Somewhere along the way I learnt not to ask for help, that it wasn’t OK to ask for help. I’ve spent many years unlearning that. And to ask for help  I needed to feel safe enough and courageous enough to be vulnerable, to be able to say that I wasn’t perfect. My belief that I wasn’t perfect was part of what prevented me from asking for help. My response was to try to hide this, so no one would find out, so I wouldn’t get into trouble. My very need worked against me.

It’s obvious what I keep learning from this story. Have the courage to be vulnerable. Ask for help. Believe in  myself. An essential part of my humanness is my imperfection.

In sharing my vulnerabilities  other people may find the courage and the space to share theirs.

I’d really like to know if you have some if only stories and I’d also like to hear your response to this story of mine- but only if you want to!