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.

 

 

Posted in Uncategorized | Leave a comment

Standing up to the Bullies

OMG United! Bad press, bad heart! Every way you look at it, the company is thinking meanly, from taking seats from boarded, paying passengers to give to their aircrew (can't they count before boarding?) to initial self-righteous comment (no way you could call it an apology).

So it is heartwarming to read of a young Finnair pilot, flying off duty. When a young mother traveling with 4 small kids, two of them babies, boarded, it was obvious she couldn't fly. Each baby required a lap to sit on. The pilot immediately offered his lap for the flight, including bottle feeding the baby. See this link for beaming picture

What a great way of standing (or sitting) up to be counted. Easy enough to click our teeth in disapproval of United or post a comment on Facebook. How much more effective to DO something – a moral setting straight of an imbalance. Putting humanity back in the black.

Or pay forward compassion and good service like the Etihad Airways pilot who turned his plane back to the gate, delaying take off so a grandmother and grandfather could get to their grandson's bedside in intensive care – and see him before he died later that night.

The more bullies we hear of, the greater the need for each of us to make a bonus payment of kindness into the future.

 

Finnair pilot holds baby – link

Pilot turns plane round for elderly couple so they could visit dying grandson – link

 

 

 

Posted in comment | Tagged , , , | Leave a comment

Too Short a Time

It is better to have a meaningful life and make a difference than to merely have a long life.

Bryant H. McGill

Imagine being 16, with 13 brain surgeries behind you and ahead … what? And it's your birthday.

Lewis Hine did something different for his birthday: he made a video! Not singing and dancing, not surrounded by gifts, but a quiet account of his life: 13 surgeries since he was diagnosed with a brain tumour at 27 months; hydrocephalus, meaning water on his brain which has to be drained with a shunt; daily seizures. Yet he speaks of gratitude for life itself and his determination to help other kids who can't go to school or make friends.

He talks of the loneliness of being different and the difficulties of making friends when you are in and out of hospital. He. didn't sit around being sorry for himself, but founded Friend Finders, to put kids like himself in touch with each other.

There's a vibrancy throbbing through his speech, the essence of life that suffering can't quench. I was humbled, inspired and encouraged.

He doesn't have what most kids take for granted – or are boredly wearied of. Those kids who take drugs at parties to dull their ennui at living should hear him – and understand how precious is the life they are dawdling away.

What shines out of him is quality, courage and life. That trumps any bucket list.

Please watch it – link. (Aplogies: I couldn't insert the usual YouTube video link, but this link will get you there – and it is, in the real sense of the word, awesome.)

Friend Finder – link

 

Posted in inspiration | Tagged , , | Leave a comment

Pain(t) me Wrong

Turn your wounds into wisdom.”

Oprah Winfrey

“It makes me so mad when they blame my pain on my past,” said Sally, manning the advice desk at our local pain clinic . “Why add that to my daily burden?”

The “experts” have just again said chronic pain is the result our “thoughts, feelings, and resulting behaviors.” Which feels like blame the patient: if I could crack jokes and be life and soul of the party, then my pain would go away. This is an absurd oversimplification.

Yes, my attitude has a huge effect on how I handle pain. In fact, one of pain's great gifts has been to teach me not to waste energy on rumination, looking over my shoulder or comparing myself with those luckier than me. Learning to manage my mood has been a great bonus. It is a daily determination, like charting a course when sailing.

Pain takes up brain space and energy; I can't handle evil, murder and hatred on top. So pain has, oddly, meant I live in a kind space, what I call “the beloved.” As my daughter said to me last summer, when my back was pushed to its limits with grandchildren, “You are in a good place, Mum.”

The experts point out that “childhood physical and sexual abuse and painful losses” are risk factors for chronic pain. Apply cognitive behavioural therapy! Am sure it helps: forgiving and letting go help anyone. It's one of the lessons back pain taught me, though I don't think my past caused the pain. Simply, I hadn't the room in my head for both past and present pain.

No, there's a simple, humane explanation why so many of us had trauma and now have back pain. Stress travels the same pathways up the spine as pain, so does digestive distress. When my digestion, crippled by 25 years of non-diagnosis of celiac disease, plays up, my back is always worse.

As for childhood, any situation where you live in constant stress and fear sensitizes the stress pathways. By age 18, I felt physically and emotionally exhausted. My stress pathways were trigger happy and hypervigilant. Just ready to take over when pain was added to the mix.

Yes, our pasts are involved, because our brains are changed by stress, making our neuronal pathways sitting ducks for later pain. And, yes, learning to rewire those circuits really helps. But the implication that we are somehow causing our chronic pain is hurtful. It makes us out as inadequate and broken.

So let's look at chronic pain sufferers not as causing their pain, but as growing through it. I don't have a lousy life because of my pain. No, because of my pain I have learned to live a purposeful, authentic and kind life.

 

The stress-related back pain diagnosis is a “psychosomatic” or “psycho-physiological” one. A psycho-physiological illness is any illness in which physical symptoms are thought to be the direct result of psychological or emotional factors. This diagnosis means that psychological factors either initiated or are maintaining the back pain, or both.

Dr. John Sarno

 

Posted in back pain | Tagged , , , | Leave a comment

A Space to Be

“Suppose I don't get better? Suppose they tell me this is it?” We were talking about my friend's sudden, out-of-the-blue neurological attack, which took her overnight from an active, hiking grandmother to shuffling with a walker. And unremitting pain. She has been incredibly determined and brave; slowly she is crawling back up from the pit and should recover. “But supposing……?”

Then It is a totally different ball game. While there's hope, you research possibilities and daily whip up your enthusiasm. Still claiming, “This isn't me. Not my reality. A passing nightmare”.

When the door is slammed, everything changes. As I tried to explain to my friend, you have to reach a place beyond pain, where your view is large enough that the pain becomes less significant. Your world view has to expand, even as your possibilities shrink. You no longer cheerlead yourself, no longer paint optimistic future pictures.

Instead, you take a birds' eye view, no longer living IN your body, but way above. Like that You-Tube video that starts with a girl lying on grass and zooms out into space. She gets smaller and the universe bigger. That's how I tried to get above my pain, the loss of an active participating life.

As I said in an earlier post, Barry Neil Kaufman points out that beliefs underlie our assumptions on life. Beliefs are not facts, but opinions – and you can always change an opinion. So I tried to change my world view from inside my life – activities, travel, even seeing my grandchildren – to a higher perspective, where life itself is magnificent. I may be small and limited, but joy exists in all its beauty – someone somewhere is young and in love, a student in St. Marks Square in Venice or watching the sun set over the Golden Gate Bridge.

Love, beauty and joy exist, even if I am not doing or feeling them myself. They are there, so life is good and generous. Life is beyond pain.

 

 

More info:

YouTube video Eye Zoom to Spacelink

Above and Beyond – March 6, 2016 – link

Above and Beyond the Space of Pain – March 21, 2012 – link

 

Posted in choice, chronic pain | Tagged , , | 1 Comment

Will Power

Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.

When we are no longer able to change a situation, we are challenged to change ourselves.

Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.

Viktor Frankl

I am so tired of reading that we don't have free will. That we move our hand before we consciously decide to and that the self we live with in our heads is actually an algorithm. I don't want to look at the stars through a formula, without wonder.

We do have free will, but it is much bigger than which donut do we choose. Much greater and more fundamental. We have the freedom to interpret our reality. We are born knowing very little about our world. As babies, we have to make sense of our surroundings and that is how we acquire our beliefs.

Serge King gives a good example: two kids track mud into the house and their mother gets mad. One learns that mothers get mad, so gets more and more nervous; the other that mothers don't like mud and shrugs his shoulders. We build our lives on our beliefs without realizing that they are not facts, but opinions – and opinions can be changed.

In his book Son-Rise, Barry Neil Kaufman suggests if you are stuck in your life, you look for the underlying belief, accept this isn't working and ask: is there a belief that would work better for me? This forces you to stand back and look at the situation from outside. Often there is a completely different way of seeing things. You change your interpretation, your reality and everything changes with it.

I tried this with pain, asking “Suppose this is just a feeling, like hot or cold?” The emotional charge dropped away. I still felt pain, but it was a sensation, not a punishment. Admittedly, this was during down time in the evening, not when I was trying to do anything. I could park the sensation in the background and read my book.

When we feel powerless, it is because we believe we have no choice, yet we can reclaim agency by winding back to the point where we made a choice that led us to where we are now. Often it comes down to character: we may feel unable to fight back, not because we are victims but because we made a decision way back on the kind of person we want to be – and that precludes hitting out. As Steven Covey says, “ … until a person can say deeply and honestly, “I am what I am today because of the choices I made yesterday,” that person cannot say, “I choose otherwise.”

Or, even more powerfully, we can make the choice how we react. How we explain where we are to ourselves. One of the most difficult things about living with chronic pain is constructing a story about myself to myself that isn't pathetic. So that I can live with dignity, not tears. It means changing my definition of happiness away from, say, going to the theatre with a group of friends to creating loving contacts and helping others, rather than being helped.

I may not be able to change my pain, but as Viktor Frankl says, I can change myself. And that is free will.

 

More info:

Foreword by Raun Kaufman to Son-Rise: the Miracle Continues, whose parents refused to accept their son's autism as a tragedy; they insisted instead that it was an opportunity.

The 7 Habits of Highly Effective People: Powerful Lessons in Personal Change by Stephen R. Covey

Who's in Charge? Free Will and the Science of the Brain by Michael S. Gazzaniga

Posted in choice, stress | Tagged , , , | 1 Comment

Lead, Kindly Light

Wednesday was a happy, loving “up” day. We went to tea with a good friend, who had found a recipe for vegan ice cream that I could eat. She knew I am milk intolerant saying I can't have had ice cream for years. It was delicious! We laughed and chatted – it was warm with comfort.

So why the next day can I hardly move for pain? The meds aren't touching it. But what comes home, yet again, is that the effort of dealing with pain is the most defeating part. Yes, it hurts, relentlessly, but what brings me to exhausted tears is the psychological energy that goes into coping.

I know I must drive any change: get up and move, preferably walk, fill the long hours with something constructive, positive. It will hurt, just to move, but it is also hurting to lie, my back smouldering. I try to do the math: if I take more meds, my head will be even more befuddled – but I may get some physical relief. If I sit to read, watch TV or chat, my sacrum will flare more – and will be worse tomorrow.

My eyes are swollen with pain, brain clumsy – concentrating is hard; decisions impossible. Not so different from so many days – the same “buck up” tape rolls relentlessly. Then it hits: the killer is the psychological self-talk, the hyping up to make the best of things, not mind the monotony, be glad for my friends, kid myself that the hours aren't empty and that ironing is a treat. Actually it is ideal: some movement, achieving order and a nice pile of clean shirts, meanwhile listening to the radio. Ticks all the boxes. But it takes psychic energy, lots.

There must be a better way. Today is another day and my back is calm. I am writing on my iPad, lying down. So let's crack it!

Cheerleading doesn't work. It is exhausting and my brain is bright enough to see right through it. Gratitude helps but is difficult on the fly when the bad patently overwhelms the good. I can be glad I am not a widow like Jill which is huge, or dying like Mary, but it feels mean to get a foot up on their suffering. What is needed is a genuine belief that life is good, which I do manage most days.

So how to get there without wearing myself out before I start. That manic cheer of the determined coper rings false. How to find the sweet spot of gentle grace? Unforced, grateful, loving?

What about setting up gratitude in advance? Before going to sleep at night, why not look ahead down the path of tomorrow? What are the small things that give pleasure each day? Reading the paper with a cup of tea each morning; the perfection of an egg with buttered toast; home made soup for lunch; napping with an audiobook; a drink together at four; a favourite TV program before bed – we are working through The West Wing.

So now the daily path has lamp posts shining gratitude in advance. No need to psych myself up against an empty day. Just recognize each blessing as it comes.

The cat purrs and settles herself to sleep against my chest. All set for a good day tomorrow.

 

Healthy Chocolate Ice Cream from Chocolate Covered Katie

Posted in coping with pain | Tagged , | Leave a comment

Letter to Michael

Today, Michael called. A mutual friend had told him I have chronic pain and might be able to help. After we chatted, I put together an email summarizing all we had talked about – and then thought it might also be useful to you.

Hi Michael,

You asked about pain clinics and the snag, here in Canada, is that most GPs won't refer you until your pain is well established. Mine wouldn't even take the first step of referring me to a back specialist “until you are dragging your leg.” In fact, until there was nerve damage, although I begged to be seen before I had damage. When she did get round to a referral, there was a two year wait. Pain clinics need to see you within 6 months of the pain starting. After two years, they told me, my brain would be permanently changed by pain. It was too late.

One of the most effective treatments, I found, is Low Level Laser. It takes about 6 treatments and doesn't hurt! I go back a couple of times a year when my back really kicks off. While it doesn't solve the cause of the pain, it does ease inflammation and calms my back when it gets its knickers in a twist. My blog post explains it in more detail.

You, like me, have great pain sitting, which is not only miserable but very anti-social. It makes socializing difficult; even watching TV together of an evening is hard. My way out has been a zero-gravity chair. I have a simple garden one that we keep in the back of the car. If we go to friends' houses, we take the chair and put it up in their sitting room. I had to give up any attempt to appear normal! Bad for my pride, but more comfortable on my back. We have one for the garden, too and also a more respectable indoor one for the sitting room. This I got from San Diego, delivered to a US mailbox (incongruous thought). Because it was shipped within the US, we didn't have to pay international shipping rates; because we collected it ourselves, there were no customs fees; and because it was prescribed by my doctor as a medical device, no import duty or sales tax.

You say that, like so many of us, you are relying on Tylenol for pain relief. Research has shown that it is ineffective against back pain as well as risky for your liver. As you said, you suspected as much because you still hurt like hell. I try to keep my liver for stronger meds.

Medical marijuana: Note that the CBD strain does not have a psychoactive effect. You do not get high. It does switch the pain right off. That said, it blocks the base pain, the angry, intense, always with me pain. I still feel stiff or achy at times, especially as I am now doing much more.

As for physio, your experience mirrors mine and that of many friends: the hot packs and pulsing doesn't do much and the manipulation and exercises just make me worse. Three months after my back surgery, I went to a nearby physio clinic for further exercises as instructed. It was a sunny day and I breezed in smiling; I came out crying with pain and it took me several months to regain ground.

One last, really helpful tip from a chiropractor: heat up a beanbag in the microwave first thing and lie on it for about twenty minutes. I hobble out of bed, take my pain meds and lie down with a cup of tea and the papers. Twenty minutes later, the meds are kicking in and the stiffness has eased off.

I hope this helps. Please let me know how you go on and get back if I can help any further.

Jane

Low Level Laser – link

Zero-gravity Chairs – link

Tylenol – backpain – link

Medical marijuana – link

 

Posted in information page | Tagged , , , | Leave a comment