Welcome

I am writing this for anyone who, like me, has been pitched into a life-altering situation.   For me, it has been chronic pain, but the same issues face all of us whose lives have been dramatically changed: how to make sense, find psychic strength and hopefully improve our lot.   But the path has been more than coping – it has been discovery and often joy.  Thank you for walking alongside me.

 

 

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If You Are Happy and You Know It

 

Having spent a beige morning in a hospital waiting room, I decided to give it a go. I decided to be happy. It's a lifetime decision, not a petty fix, I know. But this seemed a good time to practice. Why not be happy instead of impatient, bored and constantly nagged by my back?

I have to admit a reluctance – in my British Protestant work ethic childhood background, happiness was a wuss* emotion. Enjoyment was ideally part fun, part discomfort, ideally surfing in a howling gale with no wetsuit. Happiness was allowable as a biproduct, but not an end in itself. Then came the self-help era and happiness became a goal. Books instructed us and we felt failures if we weren't “having it all.” Perhaps coincidentally, depression and anxiety increased.

I always felt it a greedy aim. Sure, I would like it, but some niggle underneath whispered that there's only so much happiness to go round. How could I take a large slice of the pie? After all, what about refugees and starving children?

Then I read “The Untethered Soul.” Happiness as a decision made sense. Living with pain, everyday I tell myself firmly, “This is what you've got; you can be miserable or content.” Meanwhile my monkey mind trots out the usual irritations and distractions.

This is different. This means catching the clouds across my mood before they rain on my day. Asking myself what is interfering with a happy state. It is NOT expecting happiness to be caused by anything external. It is knowing that it isn't generated by shopping or a meal out. It is not dependent on hearing, “I love you.” At least, that is wonderful to hear – don't knock it. But happiness is a quiet flame deep within, a clear window. According to Michael Singer, we need to identify whatever is clouding that window – and stand back. Watch ourselves feeling or reacting. We need to be the observer, not the grumbler or whiner; the true self, not the ego.

It didn't take any effort, no firm self-talk or determination. Just recognition that there was no reason not to be content – and it's so much less tiring! I also noticed that my body relaxed. It didn't prevent the pain; I am still lying on heat and writing this up in the air on my iPad but I am not fuming at paying for a two minute consultation with hours of pain. My observing self is peaceful.

At a deeper level, happiness is appreciation of God's or the Universe's bounty. It is not a greedy grab, but an act of prayer.

 

The Untethered Soul: the Journey Beyond Yourself by Michael A Singer

* Wuss – n. 1982, abbreviated from wussy. Mike Damone: You are a wuss: part wimp, and part pussy. Dictionary.com

 

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Painting Pain Pleasant

Suppose pain is pleasant? Sounds crazy! Worse, it sounds the sort of thing heartless people say while you squirm. My GP apologized for her lack of help with my back pain (after an MRI showed a slipped vertabra trapping my spinal cord), saying, “I thought people wanted their pain!”

I do NOT mean that. Pain has been an unwelcome companion for too many years. But tonight I sat watching the news, with my back throbbing with deep pain. Mike went off to make a cup of tea. As I waited, suddenly it occurred to me: suppose this is OK?

Pain is a sensation. I have labelled it unpleasant. I can feel my muscles tightening against it and my mnd exploring it like a tongue prods toothache. But what if I label it just a feeling, relax into it instead of resenting it?

It got easier, my muscles relaxed, i imagined it like a spa sensation, wrapping round my back. I leant into it – and it was softer, kinder. There were moments when it even wasn't there. This wouldn't work all the time. Not where the activity is actually creating the pain. Totally impractical for cooking, shopping or, God help me, sitting at my computer, but for those despairing moments of utter exhaustion when I flop down, soaked in pain. Perhaps a better way?

 

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Mind Full

 

 

Am sitting here not thinking of a pink elephant. What I mean is what meditators know so well: trying to separate the observing deep self from the chatterbox in my head, so busily running commentary about all and nothing.

We are wired defensively. It is safer to see a snake under every stone than happily ignore a stray stick – as I found out when I stepped on a cobra on our daughter's porch. So we look for the worst .

And the quickest way to alert ourselves not a calm discussion, but a red flag emotion, straight from the amygdala, conveniently grabbing attention away from the more sedate cortex. And this goes on all day – and frequently all night.

Monkey mind, meditators call it. I remember the great breakthrough on reading The Power of Now by Eckhart Tolle that I don't have to listen to it. Wow! Just observe it – as if it were a small child whining in a supermarket line. Or the cat wanting in and out and in and out.

And if I consciously watch monkey mind from my observing self, if I stand back and name the emotions instead of arguing with them, they lose their punch. What helps is to understand why the child is whinging. I don't mean an in-depth exploration of my childhood, but understanding why MM is throwing up these thoughts.

Yesterday, I got a call from my hematologist's office. There's a problem with my biopsy sample. He wants to discuss it at Grand Rounds, a weekly interdisciplinary meeting to discuss patients' problem diagnoses. OMG they don't know what it is! The biopsy was to see whether my cancer has morphed into something more vicious. My imagination paints the worst, then over the next day I calm down – and wait. Or so I think.

Yet monkey mind is chattering a familiar theme: when there's a pause, it inserts a memory of failure or inadequacy. Why now? And I remember the anxious nine-year-old coming back from school each day urgently confessing some small misdeed. My younger brother had just been institutionalized to my mind for not being “good enough.” Again, on being sent away to boarding school at 14, I crazily overworked. Always placating some unknown judge. So no surprise that MM was concentrating on flaws – pink elephants.

Don't try to ignore them or argue, just recognize and let them pass. “You again.” And the pachyderm deflates.

 

 

More info:

selfication.com – How to Deal With Emotional Problems: Getting to Know Your Two Minds

Mark Manson – Happiness is not Enough & Your Two Minds

 

 

L

 

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Howl for Hope

Wolves are butterflies? No one dreamed what happened when 41 wolves were returned to Yellowstone Park, where they had been extinct for 70 years.

They triggered a cascade of events that led to the regeneration of the area – even to the extent of changing the river's course. Watch The Wolves of Yellowstone Park and see! A magnificent butterfly effect!

If 41 wolves can bring flowers, trees, beavers, small animals, if their presence can lead to the river banks shoring up firmly, if they can bring abundant life, what could we do – just a few of us, with our actions? What could our small acts lead to down the road?

Suppose we sponsor a refugee family, or band together to save a park, think what we might be setting in motion. More and more I see that we are all one, interdependent and entwined. The air you breathe out, I breathe in. A simple throwaway act of kindness may be magnified and swell.

Similarly, the current anger and hatred we see nightly on the news is like a chemical spill polluting all downstream. A careless statement from the top can panic markets, lose jobs. A ra-ra rally has the crowd baying hate. Simple acts like cutting off a driver, taking a pile of groceries through the 1-8 item checkout, snapping at a fellow worker can spread like an oil spill of ill will.

If wolves can change a landscape, think what we can do.

 

 

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The Blood Clinic

Back at the Cancer Clinic for the result of my CT scan. The staff are so unrushed and kind. But what a huge difference it would make if they coordinated the blood work clinic with the patients.

The appointment sheet gives a time; no mention of coming early for blood work. Yet last time, when I saw the doctor, he expressed surprise I hadn't gone to get my blood work done first. So this time I am there early – to pandemonium. It's like Grand Central Station. No, I'm not fair. Everyone is sitting in defeated heaps, with no sign of movement.

I am checked in and given a device like a cell phone which will buzz when the doctor is ready for me – one floor up. Meanwhile, I sit holding a paper number and watching an electronic board. My bleeper buzzes, but I uneasily ignore it. For variety, I switch between the board on the wall at right angles to my left shoulder and the one above the door which is diagonally up to the right. Like a tennis match in hell. The old man sitting next to me rearranges his walker, saying his back is agony from radiation.

My beeper buzzes hysterically, but the flashing numbers don't move. I feel at fault. How early should I have come? Finally, my number comes up. My bleeper has shut up, defeated. I wonder what my waiting doctor is saying. The technician looks up my requisition and advances with a syringe. I idly muse out loud – how do they get the results through in time for my appointment, which is already half an hour overdue?

“Good thing you mentioned that.” She rushes back to her computer. She had been about to do last month's tests. No req. for today. She calls Sam, then Cheryl, then Mary. No blood work today. I go guiltily past the old man with his walker, having wasted 10 minutes.

We arrive on the upstairs floor, hand over the beeper. Then before I can go in to see the doctor, I am waylaid by an eager volunteer with a wellbeing survey. Do I gave anxiety, depression etc.? Well, not before the blood clinic.

After the appointment am then sent down to take a number and wait again for blood work. When I eventually get called, the req. has't come through yet. Also I am on the computer twice under two different names. Do we both have the same diagnosis? I am sent outside because I am holding up the queue.

Get called back and parked in a corner. Sam, Cheryl and Mary are called again. The technician tells me about the car accident where she broke her back. We have progressed to her new hip when the req. arrives. I bare my arm.

“Oh, no,” she says. “I have to copy it on to my computer.” They have two state of the art systems, which don't talk to each other. Surely ripe for a transcription error! Further complicated by the fact that the screen she is copying from has a very intense horizontal table, displayed vertically, so she is contorted at 90 degrees to read it at all.

Then the req. says viscosity, but not whether serum or plasma. More calls to Sam, Cheryl and Mary.

How early should I come in next time? Well, for chemo at least two hours. For lesser souls like me with a simple appointment? “I would come the day before.”

As for my results, they have led to further tests. The paperwork is in the system.

 

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Only Connect

 

It is an absolute human certainty that no one can know his own beauty

or perceive a sense of his own worth until it has been reflected back to him

in the mirror of another loving, caring human being.”

John Joseph Powell

 

The night before getting my CT scan result, I hit a low. A refrain was running through my head unproductively: this time tomorrow … ; in …… hours ….. You would think I was going to be executed. Mike was quiet. The silences spoke loudly.

Then, largely the result of reading about Acceptance and Commitment Theory, (see Living from Above) I was able to reboot. It worked so instantly and so well, that I want to share it.

I tunnelled up through the mud of gloom to ask: where's the strong Jane gone? Can I feel her? Can I reclaim her values? What is she like? What makes me know my life is well lived? How do I evaluate my days? Now that I have become a patient, to be talked over, wheeled around and referred to as “she”, who am I?

The answer comes: I am alive when I am connecting at a deep and genuine level. My day is well-lived, not because I have shopped, gossiped, fumed in line or upped my sales record. It is when I look deeply into another person's eyes and see a loving, enduring soul. When I can feel your essence and some part of me validates you – as you do me. Just souls doing our best.

No one, no circumstance can take that away from me. It is my birthright as a human being. It is practiced anywhere – at home, in a line up, in hospital. In fact, especially in hospital, where people are raw and real. When in hospital for emergency spinal surgery, I made two life long friends.

Years ago, I was at the lowest point in my life. I was in hospital for ovarian surgery and had just been told I would be very unlikely ever to have a child. My husband, a navy pilot, was at sea replacing a pilot who had been died in an accident; I had no visitors; and my mother phoned me daily, hysterically beseeching me to have a baby before Mike was killed. I was numb, just waiting for the final blow.

Yet, a young mother who had lost her baby at birth was put in with me “because you are the most cheerful person on the ward.” Was I? It was plumbed from despair. I sat holding her, night after night, reciting what I could remember from my Bible. “Let the little children come unto me and do not try to stop them, for the kingdom of heaven belongs to such as these.” She was a Catholic teenager, terrified her baby would be locked out of heaven because he hadn't been baptized.

Here was proof that I can keep my humanity whatever faces me. In my cancer community, I hear tell daily of the grace and courage of my fellow travellers. So Acceptance (because fighting is the road to misery) and Commitment to what I can do, the small steps that connect one soul at a time. In this lies our essence, eternal and strong.

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Crossing the Divide

When you're well, it seems like forever. You feel invincible, belonging to a favoured group who are not old, sick, disabled or confused. Like the young, you believe “it can't happen to me.” Though tucked away in a corner is the fear that it might.

So when I got a cancer diagnosis, I passed through the portals not only of the cancer clinic (with an astonished “I can't believe this is me” disbelief), I also crossed the rubicon between the world of the well and the strange country of the long term sick.

And what a rich country it is! I am humbled at the courage, kindness and generosity that abounds. Unlike the busy, every day world, we have time, sometimes stretching endlessly – yet precious because it may not be here next year.

The nurses and technicians shed their outside selves and show us warmth and kindness. I have WM (Waldenstrom's Macroglobulinemia) which is indolent, incurable, but treatable. It is also very rare: 5 in a million. It came without warning from a routine blood test. This is my new normal.

What I hadn't expected was the friendship extended by the WM forum. Strangers reached out to help me. Linda, my first time on line, emailed that she would walk the walk with me. And she has, tirelessly. I am learning to take with grace – really difficult when my instinct is to help. It's so much easier to give than receive.

There's an unspoken acknowledgement by the members of this new country – like a Mason's handshake. It's very similar to being an immigrant. You are changed forever, indefinably. You can't go back – and you recognize at a glance someone who is a fellow traveller.

I don't want to be here, but I also know that I am deepened and enriched by the company I am forcibly keeping. And in a strange way, I am blessed.

 

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