Sunday, June 29, 2008

Life with Chronic Pain

Four years ago, and for almost a solid year thereafter, I experienced the most horrendous back pain. This in itself is nothing unusual. I have experienced some form of back pain for much of my life. My earliest memory of back pain is the time I experienced a back spasm when I was 16 years old. My parents were away and I had just come in for the night and was talking to my grandparents when suddenly I was overcome with mind numbing pain. My grandfather helped me to a chair and my grandmother asked me if I wanted her to call a doctor. I told her “No, I just want to sit for a moment.” Then decided I would go up to my room and lie down, only to realize I was most likely completely unable to make it up the stairs.

Since then, and for most of my adult life, I have experienced numerous aches, pains, pinches, burnings, and spasms in my low back. My father has had back trouble most of his adult life and I suppose everyone assumed my back trouble was “genetic,” that, like the color of my eyes, my father had a bad back, so I would too. This kind of complacency of thinking is dangerous, mostly because I became convinced early on that there was nothing I could do to prevent back trouble. I had inherited this problem, and I would simply have to suffer and accept these occasional interruptions to my life.

At one point, after a car accident in Austin irritated my back, my co-workers encouraged me to visit a chiropractor. As luck would have it, I found, quite by accident, a remarkably talented chiropractor that, almost effortlessly, erased my pain. I was convinced that this man had the healing touch and whenever the inevitable ache or pain would rise, I would rush to him without a moment’s hesitation. Once, while shaving, I leaned forward, ever so slightly, towards the mirror to glimpse the underside of my chin and found I could not lean back, so powerful and so sudden were these attacks, and yet it never occurred to me that these were anything more that my own genetic curse, the proverbial cross I was to bare.

Four years ago, as said before, all this changed. I woke up one morning (to the best of my recollection this is how it began) feeling the telltale signs of oncoming back pain, not the sudden jarring pain of the spasm or the pull, but the general tenderness that the blossoms into full discomfort. Time and experience had taught me to be careful, but I was reckless and went to the gym for a 4-5 mile jog on the treadmill. Half way through my usual routine I knew something was wrong. Cautiously I slowed the pace of the machine and dismounted. I thought perhaps a few light stretches would do the trick, so I began to lie down and realized that, if I followed through, I would be trapped, helpless on the floor of my gym, surrounded by dozens of strangers. Terrified, I limped to the stairs and made my way down to the locker room and home.

For the next few weeks I suffered discomfort. I was unable to walk upright, and most of the time my torso leaned over and to the left. I knew that these pains were temporary, sometimes lasting as much as a week, but after two and a half weeks nothing changed. Concerned, I felt powerless and confused. “Why wasn’t the pain going away?” I adopted rigorous treatment (that means heavy applications of Tiger Balm.) A month passed by and then six weeks. Each day I would wake and make careful mental inventory of my condition. As time passed no two days seemed the same. The pain was there, to be sure, but the symptoms always seemed to vary and kept my constantly confused and off balance. Some days it seemed like the pain was almost gone, the next I would experience violent spasms that would leave me on my knees. I could walk upright on Monday, on Tuesday I would barely be able to get out of bed, then Wednesday, walking with a lean.

I had long since stopped seeing my chiropractor, and had moved to another city, so I began to look around. I visited a few and was shocked by the variety and intensity of treatments I was given. No two chiropractors were the same. My innocence shattered, I settled on the one that seemed to offer the most relief and began to visit him every day.

Here is the thing. I visited the chiropractor, I exercised, I tried to lose weight, but nothing seemed to help. Then, almost magically, I got a reprieve. A year after it had started, a year of limping around, groaning as I got out of bed, and straining to pick anything up, the pain went away.

I’m not sure if the pain completely went away. But Jenny describes it as a dramatic change. One in which I was suddenly “cured.” The problem, six months later it was back (no pun intended) with a vengeance. Jenny was pregnant with Scout and I went snowboarding with a friend, upon my return, my back was making itself known. I didn’t suffer any horrendous fall; I didn’t twist myself around a ski pole or sleep on the floor of some mountain cabin. I just began to feel the familiar burning, pinching sensation that lives somewhere between the middle of my low back and my left hip.

Something was different though. This time the pain never seemed to let go. Eventually I was in so much pain that all I could do was to sit in a chair and watch Lost episodes until even this was unbearable. Hunched over, unable to move, much less breath, I begged Jenny to take me to a hospital. That in itself was quite an ordeal, just getting in the car was almost more than I could do. Honestly I have no idea how I did it. Jenny drove me to the nearest emergency room. I was admitted and given a room and put on morphine. An MRI later, it turns out I had swelling in the three of the disks in my low back, and that the channel in my vertebrae through which the spinal nerve ran, had narrowed, possibly putting pressure on the nerve itself.

Everyone told me I was going to need surgery, but I opted for the less invasive cortisone injections into my spine. The first one allowed me to sit up, a week later the second injection made life bearable again. I could move around I could walk, but I would always feel that slight twinge in my low back, but was so happy I could stand up I didn’t complain. I had a second MRI four months later and it showed improvement, but the pain was still there. I talked to a neurosurgeon who recommended against surgery since there was improvement. “Wait and see” was the diagnosis.

For the next two years I have undergone these injections every 2-3 months. For brief periods I have even been pain free, once for as much as for four months. That period ended, with the most horrible sense of irony, on Christmas morning last year.

So here is the thing. It is now six months and another injection later and I still feel the tenderness. Part of me is resigned to the fact that I am going to feel this pain forever, and part of me realizes that it is this kind of complacent thinking that (in part) got me into this mess. My first lesson is that managing pain has everything to do with how you think about it. Everything from your preconceived notions about the source of the pain, to the daily routines that evolve to manage pain affects your decisions. Rule number one? Don’t get comfortable.

My second thought is, upon reflection I realize that in talking to chiropractors and doctors I made an assumption that I no longer believe is true. I assumed that someone could treat my pain like the common cold, but I think pain is unique to each individual, not only in how we feel or deal with pain, but because pain has the power to isolate an individual from within, and this isolation is as unique as the individual who experiences it. No two pains are alike, so no two treatments are going to be alike. You have to find the treatment that best suits the pain, and in my experience, the pain evolves, so the treatments must continually evolve with it. Rule number two? Don’t get comfortable.

Finally, in my experience medication and traditional medicine are often futile against pain. Without exception every healer I have talked to, traditional or otherwise, has adopted a wait and see attitude. This patient approach offers a unique opportunity for self-reflection and self-examination. After all pain is just the body's way of letting you know there is something wrong, and without an immediate cure in sight, that pain is screaming for attention. In the past I have found it easy to succumb to the mind's continuous chattering with commentary or judgment about the situation, and much of it based on erroneous or biased assumptions. However this provides a unique opportunity. By noticing that the mind is continually making commentary, one has the ability to carefully notice those thoughts, seeing them for what they are. What am I talking about? In a word: mindfulness. The more mindful I become, the more I am able to see myself internally without aversion or judgment. In this way I am able to challenge old assumption about who I am, and how I choose to deal with the constancy of pain and ultimately how I choose to live. While mindfulness isn’t a cure, it does make life more bearable while suffering from chronic pain and stress. Sometimes this relief can mean the difference between sanity and madness.

Almost any kind of contemplative state can be good for the body. When people meditate, the blood pressure comes down, the heart rate falls, immune changes take place in the body, and so on. So meditation is certainly a way of bringing about healing influences in our own body. Mindfulness controls the pain and stress, it slows the breathing to give one some peace and downtime. As one more closely observes the inner reality, one finds that happiness is not exclusively a quality brought about by a change in outer circumstances, but rather by realizing happiness often starts by releasing attachment to our thoughts and pre-dispositions. Perhaps in this way mindfulness can help release those automatic reactions towards pain. Basically I allow myself to be aware of my reality, and by challenging old assumptions and the bric-à-brac of my own mind, and sometime able to make better judgments for myself.

So I am feeling less complacent about my situation, and am looking at options, second opinions, faith healers and the power of the ancients of Atlantis. Last week I got yet another MRI, and while I am still in pain, the doctor said my back looks "much improved." I have no idea what that means. So I breath slowly, think calmly, and try to do the next right thing.

“One must free oneself by mindfulness and never put oneself down, as surely as self is the only friend of the soul, and its only enemy” –The Bhagavad Gita

3 comments:

the unreliable narrator said...

True and difficult and beautiful things you have said, here. Thank you.

A friend of a friend has written some useful words on the topic, too—especially her book Turning Suffering Inside Out. Ms. Cohen is herself a brave and tender student of being mindful with her companion, crippling arthritis; she walks miles in meditation while others sit. I admire her tremendously, and her great fierce gentleness.

When you and I were 18 and 19, respectively, at the Great Books School twenty years ago, you were similarly gentle with me once; and I have always been grateful. Peace to you, and to your vertebrae—

AnnaMarie said...

Sitting in a chair and watching Lost episodes became unbearable?

How awful!

This is an inspiring post. Thank you.

Nikki said...

My friend AnnaMarie shared this post with me.
I too have chronic pain and your post just rang all too true with me. I have had problems with inguinal hernia repairs. The first dr. messed up 2 of them. The other dr. tried to fix her mistake. So I suffer with pain most every day. Some days are better than others. Today though I am in pain due to the fact that I planted flowers all evening yesterday.
Pain is a hard bear to control. I know that if I'm going to be really active, I have to pay the price the next day. I know that once it hits, I'm not doing anything active for the next day or so. There are days that all I can do is lay on the couch or in bed crying and drugging myself up. It's not fun.
As far as treatment goes I'm in the same boat. Right now I'm in a pain clinic. I've done the injections like you but they don't last long enough so we stopped that. I've tried various medicines some of which work better than others but none that actually get rid of the pain except for pain meds. I've been on pain meds for about 3 or 4 years now. I hate this because I worry about my kidneys and liver. THey started me on some anti-seizure meds that help quite a bit, but they put me on another planet. My dr. also suggested another surgery to implant a stimulator on the side of the pain, but i really don't like the idea of that. Too much can go wrong with an implant.
Another problem that this started while I was working at my previous job. That insurance covered everything. I just got my current job about a year ago and was told by my insurance co. that this is considered a pre-existing condition so they won't cover me on anything. I can't see my dr. anymore because it's about 150 a visit. Can't do the injections because they are expensive also. I'm back to dealing on my own.
I'm not telling you this to complain about my "sad story", I just wanted to thank you for your story. It can get very hard dealing with this and it's nice to know I'm not alone in the world.