In the End: It Just Is

Pain
I know little about the physiology of pain - the neural pathways, the synapses, the receivers and transmitters of pain signals - some sense, some medical mumbo-jumbo. I understand a little more about the psychology of pain, acute and chronic, which both aids and hinders us humans along the path of illness and hopefully, wellness.

It's possible we humans do not possess identical pain processing plants. It's certain that we humans perceive, and therefore, feel pain on radically different scales of agony. That we perceive pain differently is widely accepted. Why we perceive pain differently is universally questioned.

And so we are left with this: pain is relative. There can be no hierarchy of pain because there is no constant template from which to establish a frame or point of reference.

The pain you perceive to feel is as real as and as *painful* as you believe it to be. You are your brain and your body. You cannot escape this simple fact. You cannot compare yourself to another or your affliction to another's. You are not stronger or weaker or braver or more cowardly than other sufferers. You just are. Your pain just is. Or isn't.

Medical practitioners and caregivers know this - they are willing to treat and mitigate your pain without judgment. Enlist them when you need to and discharge then when you don't.

As I've written: In the end, it is only you. You, and what you can bear.

Illness
"There is a psychology to any illness, whether you have chicken pox or a broken leg. There is a particular psychology to a progressive illness or disease, one in which the pain, loss of mobility, and exhaustion are all framed in a race against the clock. The matter of you walking or not, or living or not, is a matter of time and timely treatment and, occasionally, of timely miracles." So I once wrote.

I don't profess to know much about illness on the whole but even in my short journey, I fell victim to the sudden sense of isolation that envelops one when sick or injured. We've all had a bad cold and spent a sick day or two in bed with tissues and a book. Remember the feeling you had when you eventually showered and dressed and went back to work and life. It seemed like you had been away for ages. It may have only taken a few minutes or perhaps an entire morning before you slid back into your routine, but for a short time, you felt the tiny stab of knowledge that the world marched along without you. Unaware and unconcerned.

For those with lengthy or terminal illnesses or injuries, you begin to feel like a ghost in the outside world, neither fully present, nor completely absent.

The reasons for your phantom existence are multi-fold but mainly it is because you feel terrible and unable. Participating in regular life might highlight or antagonize your disability. Worse, you might utter a complaint or an audible moan of pain. You want neither to be a martyr nor be viewed as one.

You sometimes believe and behave as if it is easier to stay home, to be alone, to not have to ask, explain, or negotiate what should be simple things, like small talk in the grocery store or ladies' baking night. Of course, this is what life is - but it suddenly seems so daunting, and tiring.

Illness is a state of mind and body.

Support
Everyone has a support network. They may or may not be individuals or organizations that you automatically identify as such. It may be your spouse but it could also be your aerobics class or your dog.

Even your standard definition of support may be unrecognizable. It might be in the form of drug therapy, aromatherapy, or laugh therapy. It might be more concrete, like a buying an automatic can opener when the task finally becomes insurmountable.

You may desperately seek out support, reject it outright, grudgingly accept it, or fall into it, as I did.

My wise advice: When any such supportive form begins to make itself recognizable to you, embrace it and surround yourself with it. Don't abuse it but don't feel guilty about drawing strength and assistance from it either, whenever necessary.

Me
There's no great epiphany here. I haven't seen the end of the world. I've just explored more terrain and foreign topography.

Some clichés: I am learning how to be grateful, more patient, less judgmental, more helpful, lighter, freer.

I am learning that cold, damp winters will be hard. I am a 40-year old with the hands of an arthritic octogenarian.

I am learning that I can bear more than I realize but not as much as I thought.

I am learning that there are many causes and reasons for a person's appearance and behaviour.

I am learning that everyone bears some pain in some form.

I am learning that good and bad can come at anytime in equal or unequal measure and that *fair* is a myth.

I am learning how to age.

I am learning how to accept.

I am learning It Just Is:
(Summertime in England - Van Morrison. I know Van doesn't approve of this whole file-sharing thing, so I hope he'll forgive me this one time. Long before KD, this was one of my favorite-all-time-celebrate-life-with-wisdom songs. Wise man, Van. It's 15 minutes long - close your eyes and just be.)

In Limbo - Part 8: Help! (at last)

If I had to pinpoint the day and time I started to get desperate and paranoid, it would probably be this day in April, that minute or two I spend on the phone with Dr. T. It’s not a clinical, official, paranoia, but I have definitely moved beyond what some call a healthy scepticism. I now have a very unhealthy scepticism. Whereas I may have felt like a drug dealer when “smuggled” in for my MRI, I now feel like a drug addict, looking for a fix. Please, doctor, won’t you help me out? Just a little?

There is a psychology to any illness, whether you have chicken pox or a broken leg. There is a particular psychology to a progressive illness or disease, one in which the pain, loss of mobility, and exhaustion are all framed in a race against the clock. The matter of you walking or not, or living or not, is a matter of time and timely treatment and, occasionally, of timely miracles. The sense that time is slipping from you and taking with it your potential to live well or better or at all makes your heart race. The squeeze of time shortens your breath and flips your stomach. It makes small talk and eye contact difficult, and it pushes you to the edge of every seat, one leg rapidly shaking and tapping. Up and down, up and down. You are ready to take flight at any given moment.

Another thing occurs as you begin to identify with yourself as sick or disabled: you think you are too young. You feel ripped off. The irony of Kienbock’s, as well as many other much more serious conditions, is that it generally affects the “young”. Kienbock’s most commonly affects those aged 20 to 40. People just starting their working and family lives. At 37, I am a grandmother in the Kienbock’s family, but I have young children, a new husband, and a new business. I’m just getting started, I feel. I don’t think of myself as old. That youth is a relative concept doesn’t truly become clear until you’re older…or sick. And as they say, youth is wasted on the young.

You believe that the medical profession should be rushing to treat you. You’re a young, vibrant contribution to the world and they’re just letting you waste away. Doctors and medical caregivers, however, have a broader perspective of illness and aging. They realize early on that the big secret is that most of us don’t just suddenly keel over when we’re 90 and go gentle into that good night.

No, the secret is that our bodies start to break down slowly, lose function bit by bit: bursitis by herniation by emphysema by cancer by toothache. The secret is that there comes a day when one or several "medical" conditions, however minor or serious, exist in your body and there is no cure or treatment, there is simply management. Your body and its activities may be forever limited or altered and there may be chronic pain.

That doctors know this and that their patients can’t fathom or won't accept it is the great disconnect in medical care.

I can’t explain my new, sad sense of self to anyone, not my husband or my closest friend. I feel isolated and pathetically, alone. There is no need for this, for what is tantamount to self-pity, yet this new introversion smothers me, traps me.

My mother, as mothers do, sees the crazy in my eyes, my disconnect from “real” life and unbeknownst to me, is working her way up to a semi-friendly takeover of my medical care. When all is said and done – the numerous phone calls and faxes and costly private consultations (yes, there is a two-tier system in Canada!) - good old Mum has landed me a surgeon. A surgeon who has even treated Kienbock’s.

Dr.G works out of St. Paul’s in Vancouver. Each way, it is a 4-hour car and ferry journey from my home. But you know what, it’s all good because what I need most of all is:

Help!

	The Beatles - Help .mp3
	Found at bee mp3 search engine

You probably think this blog is about you

I could see the judgment in her eyes; the sanctimonious smirk that is all too familiar in our west coast bastion of environmental fervour. Do you need a bag for your milk? The diapers? As if carrying 4 litres of milk by a tiny skinny handle is comfortable. And diapers? The package doesn’t even have a handle. Glance around the parking lot at any given midday moment and you’ll see a mom barely holding on to her toddler as a 10-pound rectangular block of plastic-wrapped poop catchers slides out from under her arm, along her leg, and inevitably to the ground. Yes, I do need a bag. Thanks so much.

I want to say: “I have some funky disease that is eroding the bones in my wrist, which, therefore, makes it difficult for me to grasp anything. Really. Especially your attitude.”
Of course that would be uncalled for. Fun, but uncalled for. What does she know…or care? She’s been trained to ask this question. To be environmentally and cost-conscious. I get it.

Each time this same dialogue takes place (twice a week, at my local Thrifty’s), I recall a painful and conscience-raising conversation I had two years ago with a wonderful gal pal from my high school days. A girl who could smile anybody’s pants off and whose SUV was run over by a dump truck. While she was driving it.

Two years in, having overcome paraplegia, morphine necessity, and a life that sucks ‘cause you’re raising two small children but you can’t raise your arm, my sweet dear friend finally made it to the grocery store one day (whether or not it was a Thrifty’s is unknown to my ironic self). The point is: she drove herself, she parked her car, she planted the wheat (kidding), she took the deepest of breaths, and then she launched herself, unaided, from the driver’s seat to the pavement, from the parking spot to the crosswalk, across which she carefully and painstakingly guided herself.

Some bastard honked. Actually honked. And ever-so-eloquently suggested she quicken her pace. Well, let’s pretend he was so polite and I’m sure I don’t need to tell you I cried when she told me this story. Her lesson from this experience, after she picked her sobbing self up from the produce floor at which she eventually arrived (and because she really needed another lesson, along with her lettuce) was, from that moment forward, to CARRY A CANE. She told me that she believed people would then recognize her challenges and, therefore, honour and respect them. In other words, not honk when she slowly crossed the street, or perhaps, egads, ask her if she needed help. The possibilities!

Yes, well, if my newly-casted arm is anything to go by, props seem to be more of a conversation piece than a deterrent to impatient co-existers. Hey, we’re all Oprah here. We’ve all got problems. Great story; wanna hear mine? But we’re not all O; I know a whole pile of people who keep their very painful problems to themselves. It is not because they’re emotionally stunted or repressed or well, incapacitated or anything. Stoically, sadly, they are just getting on with it. “It”: the pain and the struggle of mild to extreme physical injury and breakdown, from paralysis to blindness to depression, the invisible majority rules.

My mother-in-law is still suffering from shingles and at times can’t bear the feeling of cloth on her skin. My father-in-law can’t go out in strong winds because of a chronic and excruciating eye condition. You will NEVER hear either of them speak of their struggles. I have neighbours and friends who battle fibromyalgia, chronic and debilitating back pain, migraines, cancer, planter fasciitis, partial blindness, badly-behaved children, bad periods, and wayward husbands and, I swear, you could never tell by looking at them or even by engaging in everyday conversation with them.

Yet, however silently stoic and apparently carefree these wonderful, but not perfect, people may be, there are little clues to their pain. An automatic wince. A squint. A slowness. A sadness. A detachment. Perhaps something even less detectable, an avoidance of an activity or a minor motion, an avoidance of something that others do often, of something others take for granted. Surely without us becoming a world of moaners and public confessors, we can still sense when a fellow human is struggling in some way, be it physical or otherwise.

My fear is not the already horrible thought that we have become so completely self-
involved and de-sensitized via the O confessional that we don’t bother showing empathy for our fellow human sufferers, nor is it that marginally worse consideration that, well, frankly my dear, we don’t give a damn. The lead pit in the bottom of my stomach is the notion that we do not even consider that someone is troubled in a way that might may him or her less quick off the ball, less predictable, less convenient for us and our individual and “vital” schedules. No, some of us actually believe that it is a personal slight, that this other being is deliberately trying to delay us, annoy us, spite us. This is the worst conceit of all: choosing to believe that a 30-something woman limping across the road is trying to make us late for work and pushing aside the possibility that she might be taking the first and painful step to a new, scary future. Sometimes, it’s just not about you.