CMT Blog

During the COVID-19 pandemic, many organizations started taking their events online, and many have continued to do this. I’ve never been to a meeting of the Calgary Neuropathy Association (CNA), although I’ve met some of the members at a walkathon we all attended in Edmonton to raise funding for neurological research at the University of Alberta. The CNA has started hosting talks online too, but they’re not always recorded. In this case, they have provided some detailed notes, and that’s great too if you’d like to learn about pain, sleep, and mood — and how to live well when they don’t make life easy. I found these notes and the links accompanying them really interesting and helpful.

Some highlights and comments:

• Movement is the key to pain management. Keep moving!
• The Biopsychosocial model of pain recognizes three main components of pain:
  1. Physical
  2. Psychological
  3. Social
• The likelihood of experiencing depression is five times higher if you have chronic pain. Anxiety rates run even higher, but good psychological strategies help.
• The best predictor of health is social connectedness. (Lack of social connections may also predict worse health.)
•  People with chronic pain almost always have their social connections affected — for the worse.
• Pain is processed all over the brain. There’s no switch to turn it off. Pain medications don’t work as well as we’d like for this reason.
• Unlike acute pain, chronic pain is a message that gets stuck somehow and does not have a protective function.
• Three categories of pain:
  1. Brief
  2. Persistent
  3. Abnormal (Chronic)
• Because of the brain’s neuroplasticity, it can get wired to keep persistent pain going when it’s not helpful.
• Many former cancer patients say they would rather have cancer than neuropathic pain.
• The impact of pain:
  • Chronic Fatigue. You’re able to do less, which leads to being able to do even less, which increases pain.
  • Chronic Stress. Stress releases cortical steroids which increase pain.
  • Poor Sleep. It leads to more pain and can harm mental health.
  • Anxiety. Worry that won’t go away. Worry about worrying! The trap of catastrophizing fears and then avoiding fear triggers is especially damaging.
  • Depression. Sadness that won’t get better.
  • Social Isolation. Loneliness as relationships fall away. (Complicating matters, you may also have abusive relationships that persist!)
  • Low self-confidence and self-esteem. Imposter syndrome and other traits are handicaps in our normally highly competitive fields and social spaces.
•  Ways to manage or mitigate the impact of pain:
  • Exercise
  • Nutrition
  • Sleep, Sleep Hygiene
  • Relaxation, Stress Management
  • Mental Health Supports
  • Meditation
  • Spoon Theory
  • Social activities.
  • Push but pace yourself!
  • Solitude in nature and with others. (This is my advice but well known as an emotional health booster: visit quiet spaces where the non-human and more-than-human world has been left relatively unmolested by people. Enjoy solitude in public too, like a busy café, a park bench, or a crowded square.)
• Chronic pain doesn’t go away, but you can learn to make it seem to recede, move aside, or disappear — even though a brain scan will show it’s still there.

Pain is a Many-Splendoured Thing

The talk behind these notes was given by Dr. Bruce Dick, a clinical psychologist who specializes in pain at the University of Alberta. He’s part of the Multidisciplinary Pain Clinic (MPC), which I’ve read about in the past. I know they offer meditation and yoga classes for people dealing with all kinds of chronic pain, in all kinds of conditions.

I think anything “multidisciplinary” is a good idea. There are many fields of knowledge and practice that are relevant to pain or any other topic. Dr. Dick noted the MPC teaches things that go beyond the usual physical, materialist approach to medicine and the human body. They get into mindfulness, behaviour therapy, positive psychology, and self-

Every positive value has its price in negative terms… the genius of Einstein leads to Hiroshima.

Pablo Picasso

I’d like to take that a little further. Dr. Dick didn’t use memes in his presentation, curse, recommend cursing, or discuss the absurdity of life and suicide. But I do! 😁

And here’s why.

Teaching and learning how to cope with pain with an accent on pacing yourself and being “positive” is great, up to a point. But you can’t let it become denial about the negative.

Wholeness is holding opposites and contradictions together.

The positive and the negative.

Reject Toxic Positivity

I’m glad “toxic positivity” has come into common speech and awareness. Sadly that seems to be a result of the widespread experience of pain and hardship during the pandemic years. But it’s good — people aren’t willing to tolerate positive psychology running amok.

Positive psychology has gained a lot of solid criticism because it lacks a realistic balance with the negative. In fact, it is awfully negative itself when it becomes negativity about negativity! That does not create a true positive but a false one.

The negative has a positive role to play. And it is there, like it or not. My advice is to start from the negatives that you’re stuck on or most challenged by. What questions do they raise? Face them. Speak them!

This is what psychologist and positive psychology critic Barbara Held recommends in Stop Smiling, Start Kvetching: A 5-Step Guide to Creative Complaining. Love the title! Believe it or not, Dr. Held offers creative complaining as a prosocial activity.

To his credit, Dr. Dick’s notes struck me for how they don’t emphasize the negative yet clearly start from it. In fact, there is a strong note of caution in the science that shows how chronic pain will drive a cascade of increasingly negative outcomes without intervention. That message has surfaced in other things I’ve shared here about CMT-related research and from personal experience. It reminds me of Hugh Laurie’s terrific acting as Dr. Greg House. I’ve been rewatching old episodes of House and re-appreciating how great Laurie and the writing for his role was — how human, how raw and unsanitized.

Negativity in the House

House, or the dark side of him, embodies the negative truth, the TL;DR of any serious encounter with pain, loss, and trauma.

House ran for nine seasons and quickly became centred on Dr. House’s personality and relationships, even his (problematic) philosophy about pain and his seemingly misanthropic view of other people. I doubt House would be allowed on TV today. It would be “cancelled” by audiences. There are plenty of cringe-worthy parts, especially in how he treats women. But that’s also part of why he’s compelling and “real” as a fictional problem character.

House speaks realistically as a person in pain seeing and experiencing life through the perspective of pain — which is not going to be fixed. He abuses pain medication for example. He doesn’t follow the rules. He is not a good patient. He is not simply “a bad person” either. He’s a mixed bag, like any real person dealing with the reality and lasting trauma of true hardships. He cuts through the bullshit. He is not glib. The show is also remarkably attentive to the lives and struggles of all kinds of people, from rich to poor. It doesn’t shy away from anything.

I think the CMT and pain “communities” can use more of that candor. There’s a huge and often misplaced emphasis on cures over coping and on following the script for a good coper rather than saying what you really think and feel.

For example, we don’t talk about money and the radical differences in who has access to what support, care, or even diagnostic resources.

Pain is expensive, and a lot of us can’t afford it.

People with a lack of support due to their income and the deficiencies (or lack) of a public healthcare system are likely to fare worse and take a hit in their employment/employability, which drives the negative cycle forward.

Notice all the Catch-22s or nasty double-binds that come with pain? Pain demotivates and presents barriers to movement/exercise, sleep, a good diet, relationships, and all the things that help alleviate pain. It’s a death spiral, and it probably tends to get the better of people in pain.

Especially if they’re poor.

From my windows I’ve been watching what’s occasionally been reported on — people living in the street and freezing or burning to death trying not to freeze — or having frostbitten limbs amputated and then they’re put back on the street.

Is this the work of a medical system or sadistic semi-socialized torture?

Guess who is being pushed into “medically assisted suicide” not because they have crushing disabilities or terminal conditions but because they are poor?

It sucks to be poor, especially in North America, especially if you have a chronic illness and pain. The COVID-19 pandemic in particular and its political context has done a lot of lasting damage to the Canadian public healthcare system, to communities and families (social relationships), and to everyone’s mental health. It generated new chronic illnesses for some people, caused a lot of deaths, and happened is happening amid increasing uncertainty and fear about violence, war, economic collapse, and environmental catastrophe.

In this context, there is a lot of denial and twisted competition among us relatively well-off and housed but still precarious people to demonstrate our high functioning and capacity to afford “self-care” or support as a kind of conspicuous consumption.

“Why do you tell me to accept myself if you won’t?”

That is a question cut into the pavement near the Bissell Centre a few blocks from my building. It aims its sharp accusation there alongside many other poetic fragments drawn from the real thoughts and lives of unhoused, largely First Nations people here in Edmonton.

It really cuts through a lot of the bullshit, doesn’t it?

You may have to do it all yourself, alone, because the reality is people generally do not care. They say they do, and they want to think they do, but they have their own problems and people already taking up their time and energy. Find those who are different, and find ways to give more and need less — even though others don’t. That’s my advice.

It’s a shitty time, and extra pain makes it an extra shitty situation. An absurd feature of our demented society is that it demands not just coping but high functioning from people who are not well, which is everyone sooner or later. We are at least supposed to “fight” and put on an optimistic mask if we can’t brainwash ourselves into “positivity.”

The reality is there’s a lot of coping that happens through “self-medication” and forms of self-harm. People in pain beat themselves up for small things, like indulging in comfort food. There is always someone telling others what they shouldn’t drink, smoke, etc. That they should always try to buck up and go on, no matter what. Many people go on autopilot with scripted dogmas about suicide — that it’s always wrong, always caused by a treatable state of mind. This is especially odd when euthanasia is increasingly legalized and practised. If you’ve had close experiences with people who have punched out or tried to, or if that’s you, the easy advice and judgments of others just might make your blood boil.

Fuck ’em!

Truly, they can go fuck themselves. Tell them to! Cursing has been scientifically proven to reduce pain.

There’s a lot of happy slappy self-help horseshit out there, and if it helps you — great — but if you’re like me (and I think a lot of people) you may realize doctors, psychologists, and other “professional helpers” tend to dodge the dark side and evade the most important and interesting issues — the 500-pound gorillas in the room. Like the fact that your pain is a constant reminder of your mortality, your death — and your life. How brief its enjoyment, and how infinitely long the bad parts can feel.

Have you decided whether this extra awareness of mortality is a special gift or a curse of pain? (Or both?)

I think pain just makes it harder (maybe impossible) to ignore mortality, which is a very unhealthy feature of modern societies. We try to avoid, ignore, and deny pain (like death) out of fear and selfishness. We avoid it to the extent we are grossly privileged and able to get away with behaving like spoiled, immature, overgrown adolescents who chronically avoid the hard housekeeping of life. Pain, fear, and hard, existential questions are threatening in a culture of narcissism, but they can be a path of humility and enlightenment through the pride and illusions of the “post-human” societies of people who have forgotten how to be.

Perhaps we are afraid to admit we aren’t happy and don’t have a good reason to go on. We’re supposed to be a society organized around the individualistic pursuit of happiness after all — that American phrase has infected nearly the whole world. If true, that’s bad news for arguably the unhappiest society in history.

Why put up with it all?

Why live, with or without pain? The human situation is shit and increasingly hopeless. I’m not referring to survival — the species and ultimately the planet will have its end a relatively brief and finite number of years from now. The idea of colonizing and wrecking other worlds is a symptom of the demented and childish failure of our so-called civilization to face the fundamental question squarely: Why live? What’s the point?

Addressing or even acknowledging that question is treated as a professional taboo in medicine and other helping professions. My advice is to find the exceptions — and look for others on that path. Don’t deny it, deal with it.

Maria Popova’s excellent essay on Mr. Camus is a fine place to start.

Good luck!

I’m always happy to talk too, and I appreciate people writing to ask about CMT resources or just feel more visible, and less alone. Drop me a note for any reason or none.

Albert Camus on the Will to Live and the Most Important Question of Existence