Wednesday, June 18, 2014

Phantom of the Choppered-Off

I have a simple philosophy about pain. I can handle it as long as it makes sense to me. Here’s what I mean. Let’s say I’ve just cut my left index finger while trying to slice a grapefruit. My fingertip throbs and bleeds and stings like a son-of-a-bitch. But I’ve just witnessed how it happened. It’s my fault. So I wash the cut with warm water and soap, pat it dry, and cover it with a Band-Aid. It still hurts, but I know it will pass. Then I eat my grapefruit.
         Or, let’s kick it up a notch or two. Lets say I just had several layers of skin peeled off the top of my right thigh in order to provide what’s needed for the skin graft of my amputation site. Yeah, it really, really hurts. But I know the pain serves a purpose – the skin was sacrificed so the large wound on my other leg could heal, which means I will get well enough to go home. Besides, I had been informed in advance that the procedure would be quite painful. I understand it's just another thing I have to get through.
I've even managed the pain of childbirth fairly well. Hey, I graduated from Lamaze class, so I had a general idea what was contracting, what was stretching, and what hormones were racing through my veins at any given time. I understood why my body felt like it was turning inside out, and I knew there was nothing I could do to stop it. The pain was a path to something beautiful -- I was about to give birth to my first child, eight pounds and seven ounces worth of baby boy who'd decided to show up facing in the wrong direction. (An omen, to be sure.)
But there’s one type of pain that got the better of me – phantom limb pain. It beat me, and I believe it did so because my brain couldn’t make sense of it. Not only was there no visual evidence to support the pain I felt, there was visual PROOF to the contrary: what I felt wasn’t even possible.
As you probably know, “phantom limb” and phantom pain” are terms used to describe what happens when a patient senses a body part no longer part of their body. Most often it’s experienced by those who have lost a limb or, like me, a part of a limb. Doctors say that about eighty percent of amputees experience some kind of phantom pain. But the phenomenon also has been reported by patients who were born missing limbs or who have had a breast or other organ removed.
 If you're not a doctor and try to read up on phantom pain, your head will spin. It’s a wide-open field at the moment, but everyone agrees on a couple things. The concept has been observed since the 1500s, when a French military surgeon wrote about it. The term “phantom limb” was first used in 1871 when a U.S. neurologist noted that “spirit limbs” were “haunting” thousands of soldier amputees left behind after the Civil War. In other words, the phenomenon has always been linked to the horrors of war. It still is.
But why does it happen? Researchers have some theories about what is going on in the human nervous system that leads to this bizarre occurrence, but nobody has any definitive answers. Is it because traumatized nerve endings shoot abnormal sparks all over place? Maybe. Is it because electrical signals from nerves send confusing and even damaging messages to the spinal cord, which then freaks out like the “Danger Will Robinson!” robot from Lost in Space? Maybe. Or is it because the brain’s cerebral cortex is struggling to create a consciousness of “self” with this new physical configuration? Maybe that, too.
As is clearly demonstrated by the previous paragraph, I am not a scientist. But I have lived through it, and I can tell you – it’s some mighty strange stuff.
It began in the hospital after the amputation of my left leg above the knee. I swore that my left leg was still there, even though it wasn’t. I felt tingles up and down a shin that no longer existed. My foot itched. My knee ached. The calf muscle felt really tight, like I had pulled it at the gym. (Yes, that calf muscle – the one that had been decimated by flesh eating bacteria and thrown into the medical waste incinerator.) It was  bizarre as hell. But these were oddly uncomfortable sensations. The pain was still to come.
While in the hospital, my left leg began to hurt from hip to toes. As surely as I felt my residual limb throb and ache, I felt the rest of the leg throb and ache. Shooting pains all along the length of the leg were common. Often, R.L. would jolt up from the pillow she was resting on, twitching violently in response to somebody stabbing something sharp directly into the sensitive arch of my foot.
By the time I was discharged from the hospital, I had felt every kind of pain imaginable along the length of the leg that no longer was. Tingling. Burning. Twitching. Itching. Aching. Pounding. Throbbing. And then there was my personal favorite – the sensation that my leg had fallen asleep, causing that heavy, dead, numb sensation we’re all familiar with. I remember that once I had the unmistakable sensation of stubbing my big toe against a metal bedframe, complete with the appropriate verbal reaction – SHIT! OW! -- even though there was no metal bedframe. There was no toe, either.
The weirdest experiences I had with my phantom leg are actually pretty hard to describe, even for a person who makes her living putting things into words. I’ll give it my best shot. Sometimes, I’d feel my left foot turned upside down, with the sole facing the ceiling, as it protruded out of the inside of my left knee. Or I’d feel my shin pulled up tight to my thigh, almost like it had fused with the femur. Or, I’d feel my left leg tucked up underneath my right leg, the way I used to sit while writing. The sensation wasn't painful.  I would simply feel it tucked under me, a comfortable and familiar position. All these weird misperceptions of physical reality intensified when I began to wean myself off the pain meds. R.L.’s tendency to jump and twitch got much worse when I decreased medicaiton.
My leg man, Jeff, counseled me that the flopping around at night might continue for years. “When you go still, your brain doesn’t have other physical movements to focus on, and it starts to make stuff up.” Again, Jeff was right. To this day, R.L. will twitch when I’m trying to fall asleep, though it’s become a less frequent occurrence.
          Since the cause for these phenomena is not clearly understood, the treatment is hit or miss, too. There were a couple things that seemed to help me pass through the stage of regular phantom limb pain and discomfort.
          The first was mirror therapy. Scientists aren’t exactly sure how it works, so I don't either, but I do know it does. I would put a lightweight full-length mirror between my legs, the glass facing toward my intact leg. Then I’d open and close my legs in sync – back and forth – and my mind would be tricked into thinking that the reflection of my intact right leg was actually my left leg. Somehow, that seemed to soothe my short-circuiting brain, and the phantom limb sensations lessened dramatically. Therapeutic massage helped, too. I had gone to a massage therapist regularly before my illness, and when I went back about six months after I’d been home from the hospital, we experimented with how much touch I could handle. I noticed that as I built up tolerance for touch at the amputation site, my phantom limb sensations lessened. 
          These days, I’m happy to report that phantom limb pain or discomfort is a rarity for me. My amputation site still aches and every once in a while I’ll get a stabbing pain through what remains of my thigh, but I think my brain has become used to the fact that part of me is gone forever. It’s figured out who my new “self” is these days.
         I wish there was a mirror trick to help me process the emotional and psychological makeup of my that new “self.” I’m finding those phantom pains much more difficult to deal with.


Monique said...

Susan, I know it's not even close to being what you have to deal with, but I've put on 100 lbs since having my 3rd!!!!car accident.(am considering painting a bullseye on my car, so they know where to aim). I can hardly exercise because of back pain, and my self worth some days is really floor level. So, I spent the money to have professional makeup and portrait done, and when I think I'm just a fat slob, I hang it up on my mirror, and then say, "That's who I am, inside and out" So smile at you... cause it's not your leg, or lack of it that people love. Stick the hip out and flaunt it. And any time you think I can't do it, look up some of the clips of this year's Dancing with the stars....hey, write another book and buy a fancy leg with a really great pair of shoes.


Monique, hang in there! I love the idea of the photo. And yes, I would stick my hip out and flaunt it but I'd probably fall on my ass. :) As always, thanks for reading the blog. -S