A Privileged Pain

I.

If we live our lives with some semblance of order and direction, we awake most days with the motivation to participate in networks of relationships, to retain and apply new knowledge, to be a part of shared emotional and transitional experiences, ultimately - to make a small thread of history in the infinitesimal bolt of yarn that is the universe. On most days, though, I feel like my thread has been frayed and knotted. Chronic pain has detangled, at a microscopic level, my thread. It’s hard to describe how deeply chronic pain has changed the way I live and think. Each day I wake up, I think about how hard it’s going to be to get out of the bed. Do I slither out and splay myself on the side of the bed, then using my right arm to lift myself up? Or do I risk angering my left shoulder by propelling myself up like a weighted kewpie doll? How I worry about the most minute movements upon waking: movement, the thing that is responsible for the brains we have and the languages we use, choruses of this there and thats that, for the pain free, allow one’s world to expand into operas and madrigals whose sounds fill the halls of participatory experience. These days my songs are solos that barely register in the few rooms I sit in as time, with its insincere, autonomous drive guides me into singing the same song day after day.

Most of my days are like this: I get out of bed. I take a hot shower to try to loosen up, so that my limbs don’t feel like they’re fighting against a center of gravity field located in my stomach. It helps me feel mildly better, but by the time I’ve properly washed myself, I’m exhausted. I encroach the steps with trepidation. I get downstairs, and I sit and recline on the couch, using a small arsenal of pillows. I stay there, changing positions every 30 minutes to an hour, all day. I’ve consumed an inordinate deal of Netflix and Amazon Prime, balanced out by 4-5 books a week that I read. The cat knows when my baseline pain increases and will sit by my side, knowing that I need to change positions and that the lap is not an ideal location. I feel like I’m rotting.

There are those rare days where I can do more. They are decreasing in frequency. I can make a mediocre dinner on these days. A couple of weeks ago I made a pot roast that was disappointingly, only mildly tender, but where the whole, skin-on, golfball-sized golden potatoes developed a rich, buttery and earthen flavor. They were near perfect in the amount of give it took to break the salted skin to let my tongue taste the fluffy flesh. On one of my best days I was able to hike the Jones Bridge unit of the Chattahoochee River (I paid dearly for it the next day, though). It is an understated, beguiling trail that is relatively flat, that winds beside the shores of the river, slopes upwards, over the river’s ravine, through pine and oak forest and chestnut trees. You can always hear the river if you stand still, as if it were completely willing to guide you without any trail markers. It is these sensory things that I use to fight back against the pain.

II.

We are living in a time where there is a certain set of medications that have simultaneously done great good and great evil to people who take them. The producer of these medications has recently been fined over a half billion dollars for the damage it did to communities. Not just individuals, but communities. I take these medications without trepidation, but I am in a privileged position and in a community that is well-protected from the damage that opioids have done to less privileged people and communities. At best, these medications let me feel minutely functional for maybe 2 hours out of the day. At worst, they leave me in a stupor or asleep on the couch for the entire day, especially if my pain is severe. At this point in time, I do believe these are essential to my well-being. But I also recognize that the same effects that help me function can dismantle the psyches of individuals and entire communities. I am cheating. I am taking something that is poisonous to others in a way that should never have been expected or anticipated.

But it WAS expected and it was ANTICIPATED by the very source of production that set these pills and patches and lollipops into American communities, letting the less privileged trick and treat themselves into an early grave. There is something that helps me feel better that is at least, in part, a product of evil thinking. What does that make me?

III.

Today, I got a third opinion. I am privileged enough to be able to do that. I went to the Mayo Clinic to see if my cervical spondlyosis and crippling arm pain could be alleviated. I got X-rays and an EMG. If you don’t know what an EMG is, it’s a procedure that tests the speed and strength of various nerves. It is a form of light torture. You are electrically shocked and then have thin needles stuck in various locations to see how well everything works. I’ve had it done twice before, so I knew what to expect. And that’s a big part of the privilege I have. I know what to expect. The people and communities that have been devastated by the opioid epidemic haven’t been in the position to know what to expect for a very long time. This goes beyond health care and into the very chorus of life itself. Even with all my pain, I know what to expect. I can expect to see a provider on a regular schedule. I can expect to pay less for medications. I can expect to reach a low deductible on my insurance and not have to pay for much out of pocket anymore. I can expect to get the medications I need and to have relationships with responsible health care providers that promote and enforce the responsible use of opioids. I can expect to live as comfortably as possible with the pain that I have been given.

So even though most days I go from bed to couch, I’m at least not going from bed to a grave, or experiencing the horrifying effects of addiction, which for many might be worse than death.

IV.

I’ve been living with pain for a little over 5 years - pain that has become progressively worse over time. I’m not sure this is going to change in any significant way, yet I continue to try new things, see new doctors - I haven’t given up yet. Unlike the people and communities impacted by the opioid crisis, I have consistently felt like I’ve had options, even though my world involves a bed and a couch most of the time. Being fortunate is a form of medicine. I just wish it was something prescribed to everybody in this society. Everyone knows we have health care systems that are built to propagate inequalities - it’s exorbitantly expensive for all, for one, but I have been privileged to be able to be out of work for more than 6 months to obtain continual care. It’s also a health care system that can, unchecked, operate irresponsibly. It is why we have counties in West Virginia where the rate of opioid deaths was EIGHT TIMES the national average. Doctors were dispensing death there, where for me, it gave me a little bit of life I had lost. Why must we have this paradox? Why must I be a part of it?

V.

My personal pain has made me realize that other people in our country are experiencing pains I’ll likely never endure. So even though my world is tiny at the moment - sometimes I swear if an earthquake were to hit Lawrenceville, GA I’d have little fake snowflakes fall down on my crumpled body - my world is a world of pain that is still a privileged one. I exist in a system where, compared to others, I am cheating death and have the opportunity of life. I have been shielded from the opioid crisis and will continue to be shielded. And now that there has been a fallout from this, maybe there will be others who can now be a part of a community and social system that can, even on remote occasions, help with the pain.