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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Turning Point

There should be a word for the moment you know your spirit will survive a catastrophe.

Catastrophic news is like a car crash. Having had both in the last month, I am ideally situated to compare. “You must have been so scared,” everyone says. And they are surprised when I say no, you are very calm.

I once read of a man mauled by a lion who said he was only afraid when it was useful for survival. Once the lion started tossing him around, he was strangely calm. Something that comforts me when the cat brings home a mouse.

In my GP's office, once she starts delivering the news, like the moment before our car hit the jackknifed tractor trailer, I am dead calm. And dead is the word, because there was no life in it, just blank acceptance. You can't arguei; it just is. You go home and try and do something, because busyness reconnects. I make a salad.

Then because my back is throbbing, left over from the car crash, I take breakthrough meds and lie down on a hot pad, a mechanical act. And think…. I, the me I know and live in, isn't there, just an exhausted shell. It obviously isn't the time to jolly myself along and a therapeutic, good walk is physically impossible as I only limp at the moment – and the snow under a grey sky is not enticing.

So the safe place is the observer, and I retreat to it. It is interesting, because I am observing physical and psychological shock. I can't do anything to cheer myself up, because my body and brain are as if anaesthetized, yet I know it will pass. I don't recognize myself, where have I gone – and left this blank shell?

An hour later, I go to my chiropractor and then on for a massage. All part of the accident rehab. As I walk into the room, my young therapist greets me cheerfully. I don't tell her – she's young and hopeful. She doesn't need my burden.

She's carrying a mug of coffee and I say jokingly, “You shouldn't be drinking that. You should be drinking herbal tea that tastes like grass.”

She tells me of her fatigue, hypothyroid, she queries? Blood sugar? I counter. Suddenly, we are in deep conversation. I tell her about hypoglycaemia research, shades of my nutritional consultant days. And bursting through our speech, I recognize myself, strong and loving, my deep self is back. The shell falls away. I recognize the truth that to be whole one needs to be able to give and the most pernicious aspect of cancer is that it turns you from a giver into a receiver.

 

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Pain Full

Deja vu! It's been a grey day. I have been reading more about myeloma, not pulling the punches. It is written by a doctor, so there's a degree of detatchment. “The patient”, compliant – good. Smarty pants – very bad – and came to a bad end, literally. I read it's one of the most painful cancers. And I try to weigh up my choices. Smarty pants?

Am lying in bed, reiterating, “I still have a choice – to be joyful.” Somewhere deep within is that joy, just behind clouds tonight. Hold on, this is familiar territory!

I never knew that chronic pain could come in useful. It's been good practice. How many times have I lain there, reciting: “it's only this moment – now! It's not yesterday or tomorrow. Just now.” Step one of my Quick Steps for Pain: bracket the pain. And how many times a few hours later has the pain dimmed and sunlight washed the clouds.

The old trick looking inside: “Am I unhappy now at this moment?” And truthfully at that instant the answer's no. Unhappiness isn't in the immediate second – now. It is pervasive, brooded on, rather like scrambling an omelette in the pan. It is like a mist, creeping into your bones. But it isn't in this second – and if I can hold onto that, it will clear and the seconds run together. Oh, pain has been a good school and I have learned well. As for self-pity, I can't afford it. My psychic bank balance can't afford that energy withdrawal.

So now, in this moment, I am not unhappy, whatever lies ahead. Brahms Lullaby plays through my headset And I am taken back to the twenty-five year-old who stood, heart full, by the crb, watching our daughter snuffle in sleep. She who is a delight and comfort to us now. I can touch that girl, often scared with my husband flying, but deeply happy. I gather her to me and together we walk towards the future.

The music in perfect drops, like liquid in my soul. The offering of the best the composer can do, his moment of perfection; his offering to life.

I can be joyful – my choice. Difficult now, but with practice becoming easier – thank you, pain. Thank you life.

 

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The Greatest Gift

Some wish blessings, others pray for them.

Some send blessings and they become one.

Joyce C. Lock

 

If it is more blessed to give than receive, why do self-help books keep telling us support is vital to our well being? We are asked the wrong question: how much support are you receiving? From work, parents, friends. Support is great, like a warm bath, but it is dangerous to rely on it. That way lies powerlessness. We end up needing approval and belief in us from outside to succeed or be happy.

Don't get me wrong. I am hugely grateful for the kindness of my friends through my cancer journey. They have walked beside me and made me feel still part of the human race. Mike and the kids have been unswerving. But, deep down, I know that I have to walk this walk and it is my faith and resolution that will succeed or fail. I also know that for my friends to give willingly, I have to be able to accept, but never demand.

What we aren't told is that our greater need is to be needed, to be able to give. As an immigrant, I only started feeling at home when a friend needed my help. Just after we arrived, I was told I might need surgery – and realized that my friends had support from family and long term friends. I was way down their list. Yet, because I had no one, they were high on mine. The day a friend asked for my help was when I felt I belonged.

When I devised my “Quick Steps” to cope with bad pain days, my final step was to do something for someone else. It took me out of victim mode and made me feel a useful member of society, rather than a miserable wreck. Often it was just phoning a lonely friend, but it was giving and that was important.

So, if I am to survive (which actually I can't as my cancer at best can be postponed) this experience, it won't be in body, but in spirit. Truly the spirit will be willing, but the flesh is weak. Yes, I need and value my friends and family, but I need even more for them to need me.

 

 

Quick Step through Pain (not a waltz, but better than a dead march.) – link to blog entry

  • Bracket the pain. Say,”It is just today.”
  • Take steps to ease the pain: meds, heat, cold, rest.
  • Reassess the day. What can I change or do another day?
  • Ask: what CAN I do? And do it, trying to appreciate what is pleasant about doing it.
  • If possible find something I can do for someone else – this makes me feel a contributing member of society and not a victim.

 

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Walking Ahead

Am so tired of “bucket lists” which always seem to be high carbon, consuming rather than giving. Then, tables turned, my myeloma cuts my future off. All the “one day” things I had parked for sometime way off have to be done or discarded.

Am not going to save the world, which is quite a relief. I compromise by recycling. Or write a best seller or climb Everest.

So what about a legacy? I remember my mother's mother, who was non-intellectual and cozy, but full of common sense and courage. And my father's father, who was brilliant and successful, setting up the Land Registry in England. He was knighted for his efforts. Odd: we talk about Granny still and a family argument can still be stopped with the words,”Granny wouldn't like this.” My grandfather, we never happen to mention.

So far, my efforts with the grandchildren have been limited: Sasha will never stamp on a caterpillar and Matt hands knives, handle first. It's a beginning. Maya now waves at the stop sign holder at roadworks because “How would you like to stand there all day?”

I won't see them grow up. But one last gift I can give them: I can, hopefully, show them that it is possible to face death with grace. I am not sure how, but I try to meet each day with hope and courage. I try to show them that what matters is not having or even knowing; it is love. Love given and accepted. That one's whole life should be lived as a creation of joy and love. I often think of trials Granny faced and feel her close to me in mine. So when, way down the road, life hits our grandkids in the face, they will know I have gone ahead and not be afraid.

 

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Gently Does It

 

Gentle verb (used with object), gentled, gentling.

to tame; render tractable, to mollify; calm; pacify; to stroke; soothe by petting.

to ennoble; dignify.

 

An email from a friend with back pain: “How do I keep the pesky muscles relaxed?” How indeed? This struck a chord because why has my jaw been clenched and my face sore – ever since I got my appointment booked with a new hematologist, who I suspect is gung-ho for chemo?

If muscles switch in out of the blue, I always suspect an old program running in the background. Something has hit a button tagged by my amygdala as dangerous. Our brains are constructed to look for danger – after all, who will survive? The person who sees snakes that aren't there (but they could be) or the cocksure hero who dismisses caution out of hand? Our amygdala is on guard for us. Every time we have a strong emotional experience, like fear, our brain takes a quick snapshot of everything going on and attaches a warning tag. From then on, anytime we encounter one of these tags, our amygdala is there, ready to go.

I already knew that if you can deactivate the tag, it is gone for good. Often I can do this, but with my clenched jaw nothing works. Then serendipity, my old friend, pops up in the form of an article on Internal Family Systems therapy. This sees us a bunch of voices: the Exile (the emotions we have locked away); the Manager (the neocortex trying to run the whole enterprise); and the Firefighter (the amygdala at the ready).

It intrigued me. I am familiar with NLP (neuro-linguistic programming) working with parts and with Transactional Analysis – parent-adult-child. Also Focusing which unhooks emotions from their triggers. I am accustomed to questioning and digging. But there was something different here. It had never occurred to me to be kind to the errant part. I had treated it like a recalcitrant, overactive child, with tired patience.

So now I stopped and listened to the part that tensed my jaw: what and why? I didn't act the teacher with it and explain that its efforts were unnecessary. I sympathized with its desperation. And I listened. It all came tumbling out: right back to the nine-year-old whose brother was just institutionalized, who tried so hard that it hurt to be OK and not be sent away too. The fourteen-year-old sent away to boarding school who frenziedly overworked. Perfectionism was my go-to reaction whenever I felt at risk. So, of course, a male doctor (shades of my father, a neurologist) who would tell me what's wrong with me and suggest a punitive treatment would set off my part's desperate efforts to try harder.

When I stood back as the observer instead of being swamped by panic, I could see how frightened that part was and how hard it was trying to protect me. And when I comforted it like a child, the tension relaxed. It is gone, though sometimes my muscles tighten, but a few kind words and they relax again.

Why is self-compassion so hard? Why always the stick? Let's show kindness to our lost and frightened parts. We would to a friend, why not to ourselves?

 

If you want others to be happy, practice compassion.

If you want to be happy, practice compassion

Dalai Lama

 

More info: Psychology Today Internal Families System Therapy – link

Inner Harmony: Putting Yourself Back in Charge: Based on the internal family systems (IFS) model of healing by Beth Rogerson PhD

 

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Go Gently into the Good Night

 

For now we see through a glass, darkly; but then face to face:

now I know in part; but then shall I know even as also I am known.

1 Corinthians. 13 (King James)

 

I have a diagnosis of IgM multiple myeloma. So why or how am I so deeply happy? Yes, it has been overwhelmingly stressful, mainly because this particular variant is so rare that there's little research. All I know is that it is not curable and the IgM version does worse than most. Ironically, I feel better and more energetic than for years. That makes it hard to go into treatment that will make me sick, when no one can tell me what that will buy.

That's the bad part. Now about the good. When the meandering path of life suddenly plants a stop sign in clear sight, when it becomes a cul-de-sac, in the words of Dr. Johnson, “it concentrates the mind wonderfully.”

But out of that concentration comes beauty. I asked myself, “If I am going to die (as we all are), where do I need to be? Who do I need to be?” In a way I feel privileged because I have time to prepare. It's like being in an elevator. I have to get out at a certain floor, but I am able to align the lift so when I get there, I can hopefully step easily across. I will be ready. Now I don't mean actual dying will be physically easy. I am hopeful, but not dumb; however, my spirit will be prepared. I will not rage against the dying of the light, but see it wide and sunlit above the clouds of our human life.

Years ago when we lived in the cottage we had built in the woods, the simple joy of living there flooded my soul. But I also knew one day we would have to leave, as we did, when age caught up. I prepared, often thinking, as I wound along our sunlit path to the mailbox, eating wild strawberries in passing, “One day we will have to hand this over to someone unknown.” And I prayed that whoever followed us would love it as we did.

So now, I loosen my grip on the mundanity of every day, yet appreciate each jewel that it presents. It is the same feeling I had the day our daughter got married, when I walked back into our home without her. Knowing it hurt, but it was a good and healthy pain.

Or the night before we emigrated, comforting our seven-year-old son, “I know it hurts, but that means you can love another place. It would be sad to have loved England so little that you don't mind leaving.” And he now lives on Vancouver Island, steeped in its beauty and glad we came to Canada.

So how to reach a place where crossing the divide will be right and good? I try to live not in the transient here, “on the lake” or “at the theatre,” which I will lose, but in that part of me that loves beauty which somehow I know will merge with something greater than I can ever be.

When my father, an non-believing doctor, died, my thought was, “Where is he? Where does the soul of an atheist go?” The answer was swift: the flowers he tended, the music he loved. He didn't recognize his soul, but it was that part of him that was deeply moved when he gazed at the hills, fingers templed in reverie.

My mother, in her last letter, asked me, “What is it like to die? In some ways, the peace, but to lose my self?” To which I replied that I didn't know, but I believe that whatever it is, it will be so good that she won't mind the loss of ego.

The hard part will be leaving family, though I am confident the children are on good paths, and I hope the grandchildren will carry something of my values forward, as Granny lives on with me. It is leaving Mike that breaks my heart, though we both know that this is the price we pay for a marriage that has enriched our whole lives. Would I sacrifice that so as not to hurt now? No, but it is hard. And he, not I, will pay it.

The happiness? A deep peace. As small irritations fall away, what expands is love and joy. In order to make it bearable to leave, I have inadvertently reached a more beautiful place. I looked through a glass darkly; soon I hope to be ready to meet the light face to face.

 

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One Smile

“Spread love everywhere you go. Let no one ever come to you without leaving happier.”

Mother Theresa

 

It was just a CT scan with contrast. Nothing special – except what the results would show. The waiting room was beige, cold, with stick-like chairs and torn magazines. No one spoke as we sipped icy contrast drinks from paper cups. While our stomachs dreamed of bygone breakfasts.

Then a girl scooped me up, whirled me through the dark intestines of the hospital and into a beige (why always beige?) cavern with a large white doughnut surveying all it commanded.

She smiled as she prepped me; my isolation fell away. She was alive, present and connecting. One of those rare beings whose warmth shone through her every movement.

“Why did you choose this job!” I asked her as she slid me into the machine's mouth.

She has cystic fibrosis, she told me, with no hint of self-pity. “I was supposed to die before I was two.” Yet, here she was at 30 working – and smiling. Most if her contemporaries, she added, were in hospital waiting for lung transplants – or dead.

But why a hospital? Surely, she'd had a lifetime of that. “I had some pretty bad experiences in hospital,” she explained. “And I wanted to give other people good ones.”

So each day she gets up early, does her CF routine and sets off to “give back” what she has seldom received.

It's not an easy path, when you watch everyone else carelessly enjoying what you will never have, like kids. Or a future. Living with chronic pain, I knew only a fraction of the psychic willpower she has to find each day. but enough for our eyes to meet in recognition.

As she slid me out again, I said, “Can I ask you a personal question? Do you believe in God?”

“Yes,”. Her answer was immediate.

“So do I!”

We hugged and she trotted away to fetch her next patient.

 

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