"As I mused, the fire burned"

Reflection on life as a person of faith.

The Gift of Enduring Pain

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I’m in a particularly bad set-to with my back pain this week and last, to the extent of missing 1 1/2 days of work – something that is very unusual for me.  I finished Friday, including a 2-hour staff update on renewal activities only because I could rely on the magic of opioid analgesics.  It is a good counter-point to the present media blitz on the dangers of opioids, as there are lots of us who use those same medications to deal with severe pain break-through.  If it was not for my Tramadol, I would miss many more days of work and family activities.  Opioids have a place inside a medical treatment plan for pain.

It is always interesting to see people’s reactions.  This past week at work I was looking pale, and one of my colleagues asked if I was alright.  When I mentioned severe back pain, they asked how I had hurt myself (thinking this was from moving a stove last week).  The part which interests me most is the next exchange:

Me: I injured my back in an MVA in 1999, and I’ve had chronic pain due to nerve damage ever since (as in 18 years).  I’m impairment rated at 36% whole-body.  Most of the time I can cope so that no one notices, but I have these particularly bad stretches when it shuts me down.

Them: Wow, I can’t imagine being in pain all the time.  So you really have pain every day?

Me: Yup, sometimes it’s just worse.

Them: Wow.  I remember one time when I hurt my back and couldn’t get out of bed for three days… (other person, oh yeah, there was one time…)

The conversations unfold that way so often, I’m not surprised by the question, nor the direction it takes after that point.

I understand what is happening – empathy.  As soon as someone uncovers a burden someone else is bearing, if we are empathetic we seek to obtain some degree of understanding of what they are going through.

That can be a valuable undertaking because it shows we care, and allows us to find some degree of understanding as to the other’s burdens.  For example, talking to someone who has just lost a parent, something like, “My mom died 6 years back.  It’s hard” can establish good common ground to have a significant conversation.

There’s a but in that value, which is an area that requires some caution.

For example, I’ve been doing lots of reading on the question of indigenous identity.  There has been a recent spike in discussion around the outing of Joseph Boyden as a non-indigenous person (his response).  I feel this quite acutely as my Métis identity is one that has been under attack since the mid-1800’s, right around the time it was established as a cultural group in Red River.  Who can speak on behalf of a group is important, and Boyden’s main crime was not a false claim of who he was, as much as his claiming of the role of spokesperson for a whole segment of people.  For example, he worked with the Royal Winnipeg Ballet to produce a program  on residential schools.

Now, I don’t have that experience in my immediate family, as some Métis were quite protected from that bit of empire.  If someone asked me about the schools, I can tell you what I’ve read, and the stories I’ve heard, but ultimately I would have to say to them: I do not own this narrative.  If you really want to know, you need to speak to a survivor, or the children of a survivor.  Claiming to speak with authority on such events, without having any moral ability to do so, perpetuates the original injustice again: as the res school kids had their identities and voices stolen, so now a white author is speaking on their behalf, once again rendering them voiceless.  This is quite apart from the reality that Boyden is a really gifted writer, who understands something of indigenous issues.  But, even if he did have some distant indigenous heritage, without the res schools being a part of that family narrative, he has no business speaking about it with authority.

This is also the basis for a part of my reaction to the whole idea of ‘white privilege’ as a white-person’s response to the loss of voice for the oppressed.  It perpetuates that loss of voice by drawing the attention back to the speaker.  A healing response is to step back, to advocate for change within your sphere of influence, but not to presume to gain some moral authority over the oppressed because you’ve declared yourself to feel really bad about yourself.

This is the danger in the chronic pain discussion.  I don’t challenge people on this point, because most of the time I just want to stop talking about it.  When I’m in pain the last thing I want to do is discuss it.  Rather I’ll read, walk, sleep, play video games, or anything to keep my mind off of the pain.  But, talking about the one time you injured your back can give you some perspective on my situation, as long as it stops at, wow, I can’t imagine the pain I experienced going on for 18 years.

When you push beyond that point, it gets into the realm of Boyden and the theft of narrative.  I’m not speaking ill of my co-workers, as they did not do this, but it is an effect I have observed in the past.  We don’t find common ground with others by attempting to fit their narrative into ours.

So, I would never speak about growing up on the Rez.  I would never speak about the racism overtly indigenous people experience.  I grew up middle class white, and all the racism I’ve encountered has been as an adult after announcing my Métis citizenship.  I don’t have any skin in those narratives – so when a First Nations brother or sister speaks of their Rez experience, or the pain of being the child of a res school, I shut up and listen.  This is not the time to attempt to demonstrate empathy, or to share your experience of the one time someone gave you the strap in grade school, but the chance to learn about someone else’s struggle.

Likewise, as I’m reading the compelling AN INDIGENOUS PEOPLES’ HISTORY OF THE UNITED STATES by Roxanne Dunbar-Ortiz, when I read about the massacre at Wounded Knee, I don’t immediately jump into my narrative about, say Louis Riel or Batoche or Frog Lake or Seven Oaks.  The point is not that my people have suffered, or some competition to see who suffered worse, but to sincerely encounter the narrative of another person in a way that transforms us.

My experience of continuous pain, and people’s reactions to it, have surprisingly given me a deeper insight into the power of narrative, and how unjust frameworks seek to control and suppress those narratives.  Historically, we saw that power through the re-packaging of the messages about indigenous: they’re not ‘using’ the land properly anyway so we might as well take it.

Rather, our response to the narrative of another should be to quiet ourselves, and to dwell for a moment in another person’s reality.  We do so not because it allows us to claim parts of that narrative as our own, but because that is what people in community do for others in community.

And, one of the ways I deal with severe pain is to focus my attention on writing about things like identity.

A final word on pain.  The next most common question asked of me is about the pain.  I also don’t mind this question, just like I don’t mind questions about soldiering or being Métis.  My many blessings in life leave me in a place where I can be a spokesperson for those things, and a safe person to give an inquirer some perspective.  So when people say, “Wow, I can’t imagine being in pain all the time, what is it like.” I usually answer.

Most of the time, it’s a dull roar around my left hip, buttock and down my left leg.  Sometimes there’s just a sensation of no sensation, as in a numbness.  When I move that will transition, sometimes suddenly, into a sensation like a dagger being pushed into my back through my SI joint.  Sometimes, my skin feels like it is burning, or being abraded over parts of my left leg…that tracks the nerve damage, so it’s usually in the same places.

When the pain gets particularly intense, it is like having someone run a red-hot piece of metal bar stock down inside the back of my left leg – right along the sciatic nerve.  My left foot starts to droop, meaning I catch my left foot when walking or going up stairs (I’ve had a couple spectacular face plants on stairs).  I still have that dagger sensation, but now it’s a hot dagger, or perhaps an electric drill with a spade bit boring into my left pelvis.  The pain feeds through into nausea, which I have to say is the worst part.  I can deal with the physical discomfort, but the nausea really takes a lot out of me.  Smells and tastes become really problematic (this morning I had to clean out a leaking garbage bag, all the while holding my breath and gagging).

The nausea and a sense of illness, including being really sensitive to temperature, often fools me into thinking I’m coming down with the flu and have a fever.  It sometimes takes a few hours before I can figure out that I’ve feeling awful because of back pain, and not because of a virus.  This can lead to some problems at work, where I tell people I’m going home with the flu, and then show up the next morning looking fine, saying it was just back pain.  Without an understanding boss, this can be a problem.  Sometimes it’s only after I’ve taken pain killers that I can actually discern what it is that is bothering me.

The nerve issues and pain impact my mobility, making it harder to stay active.  But staying in bed is not an option, as that worsens the pain.  Sometimes keeping moving by pacing or walking is the only response.

The reality is that most of the time people around me have no idea about this narrative, and I only normally share it with people I trust, or when I have no choice in a work context.  When I told my co-workers my impairment rating, they both just stared at me.  I always wonder about what conclusion they now draw – 36% doesn’t look that bad, or he must be making this up?

The professional impact is a need to be very cautious about the type of work I undertake.  I could do forensics (and crawling around burned-out buildings) as long as it was only a couple of days per week.  I can do my present job because I have lots of freedom to get up and move or to take sick days as needed.  I could not return to a full-time role in the church, because the only thing that sustains me now is resting on weekends and evenings (and the clergy rarely get two days in a row as a break).  Even in my present work, the 50 or so days of travel per year I have to do is taking its toll…helped a little bit by me personal ability to upgrade aircraft seats to reduce the pain of travel.  I’m so thankful for having the resources to do that, because it gives a little extra margin.

And of course, the one question I’m always wondering about (as the primary wage earner in my family), how much longer will I be able to continue to work full-time?

 

 

 

 

 

 

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Written by sameo416

February 11, 2017 at 4:19 pm

Posted in Uncategorized

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