pain: the nighttime phantom


The phantom pain comes from nowhere. Random, explosive jolts through a foot that’s been gone for almost 14 years. As Pain and I have become increasingly well acquainted due to our sporadic but ongoing relationship, I have identified its 3 key characteristics – for me. But Pain is a creative character who treats everyone a bit differently. These are not universal rules.

Rule of Pain #1: it likes the dark

When I first became an amputee, the doctors told me that Pain’s nocturnal nature had something to do with a “quiet mind.” They encouraged me to “keep busy” and assured me that the more I distracted myself, the less I’d feel it. There are several problems with this approach.

First, I find it hard to sleep while simultaneously juggling axes, frying an egg, and reading Neuromancer. My personal experience, with 40-plus years of experience behind me in this area, is that sleep and furious mental activity are not complimentary activities.

Second, if the “quiet mind” theory held true, then I would expect Pain to drop by for visits more frequently on the weekends, when I tend to think less, than during the week. It would jump out and surprise me when flipping mindlessly through Excel spreadsheets I can’t understand. (In other words, every Excel spreadsheet I read.) It would jump me whenever Grey’s Anatomy came on the TV. But my experience has failed to validate the “Mind-on-Mute Hypothesis.”

Third, keeping my mind busy in the darkest hours of the day isn’t compatible with good art. This isn’t a medical issue, but an aesthetic one. So, if I turn on the TV at 2:30 AM, I have to deal with the agony of fiery explosions into my absent limb and the riveting dialogue of movies like Police Academy 3: Back in Training, The Scorpion King, and Samuel L. Jackson’s masterpiece, The Man. (How could the same actor who gave us the epic speech in Pulp Fiction have read this script and thought, “Yeah, I need to spend the next few months of my life working on this.”)

Similarly, if I’m awake enough to read a book, Crime and Punishment and A Farewell to Arms are out. The wee hours of morning, pain, and great literature do not blend. So that leaves me with the collective works of John Grisham. The wonderful thing about Grisham is that you really believe you’re a fast reader when reading one of his oeuvres. In the early days of my post-accident life, experiencing pervasive nighttime phantom sensation, I knocked off The Firm, The Pelican Brief, and A Time to Kill in 3 consecutive nights. But this sense of accomplishment was undercut by the fact that I was, well, reading Grisham.

These issues aside, I can truthfully report that I’ve never had consistent, activity-stopping phantom pain during the day. Ever. It’s always at night. And it’s usually not until after I’ve fallen asleep that Pain knocks on my door. Only after 60 to 90 minutes of unconsciousness do the electric explosions start, and they recur every few minutes for the next 6-8 hours.

There’s something particularly unnerving about living with Pain at night. No one else is awake, so I’m always alone when it comes. There’s nowhere to go and nothing to do at 3 AM, so I usually lie in a sleepy haze, getting jolted awake every 90 seconds or so.

Pain has taught me the following truth: time moves slowly from midnight to sunrise. And that perhaps is its most sinister trick. The 6 hours of real-time pain occur over what my mind tells me is a 10-12 hour stretch. At this point in my life, there are few times when I actively want time to speed up. My irregular visits with Pain are the exception to that rule.

Rule of Pain #2: trying to explain phantom pain is almost as bad as having it

Living with limb loss/difference presents certain communicative challenges, including the fundamentally unrelatable nature of living without a crucial body part. People with knee pain have something they can share with someone else who has back pain. Describing how you suffered through mononucleosis, your friends’ eyes light up in recognition as they then offer you the story about their vicious bout with strep throat. People who get crew cuts have an inkling of what it’s like to be bald.

But limb loss/difference is a truly alien experience. For those of us who pride themselves on their communication skills, it’s especially frustrating. Trying to describe how Pain visits a body part that’s no longer there ends up sounding like Abbot & Costello Visit the Trauma Ward:

My Daughter: So you feel pain in your leg, right Daddy?

Me: Well, I feel pain, but it’s not in my leg [pointing to what’s left of my femur]. It’s in my foot [waving vaguely towards the empty space where my leg used to be].

My Daughter: But there’s nothing there.

Me: That’s right.

My Daughter: So you feel pain in the air?

Me: No, I feel pain in my foot. There’s a shooting, stabbing pain down the side of my foot into my little toe.

My Daughter: But Dad [patient smile on her face, explaining the obvious to her idiot father], you don’t have a foot. Or a little toe.

Me: [Getting exasperated.] Yes, I know, but that’s where I feel the pain. I have no leg, I have no foot, but the pain is there.

My Daughter: [Serious, commencing an A Few Good Men cross examination] Didn’t the doctors take your leg away after your accident?

Me: [Voice rising] Yes.

My Daughter: And you don’t have that leg anymore, do you Daddy?

Me: No, but –

My Daughter: [Triumphantly] So you can’t feel pain there anymore. It’s not attached to you. [Turns and nods knowingly to the jury, her two brothers, and judge, my wife, who collectively nod in agreement with the miniature Clarence Darrow and look expectantly at me, having already reached their verdict.]

Me: Right, but that’s where I feel the pain. [Plaintively, turning to the judge and jury, pleading my case.] That’s why this is so messed up. [Voice rising, getting higher pitched.] I feel things in parts of my body that I no longer have.

My Daughter: [Condescendingly.] Do you feel pain in your hair also?

Me: [Smashing head on table, words coming out between each forehead-table contact] NO! [Smack!] I [Smack!] FEEL [Smack!] IT [Smack!] IN [Smack!] MY [Smack!] FOOT [Smack!].

My Daughter: Daddy, does your head hurt? Because you’re bleeding everywhere.

END OF SCENE

I can’t explain it to anyone with all of their limbs. The concept just doesn’t translate. But when I attended a big conference last week and mentioned that I was going to write a post on phantom pain, a fellow amputee immediately shook her head affirmatively as I described what it felt like and said, “Oh yeah, I get exactly the same thing!”

I’m Charlton Heston in Planet of the Apes. Everything’s familiar but no one can comprehend me . . . unless I talk to another non-Ape.

Rule of Pain #3: phantom pain is more crippling than limb loss

Living with limb loss, for me, is undeniably different from my pre-accident life. But it’s also still undeniably living.

My visits with Pain, on the other hand are something else entirely, short but scarring bouts with an opponent that sucks the life out of me incrementally in the darkness.

Pain’s first appointment with me was by far the worst. I had left the Long Island hospital where doctors had amputated my leg and journeyed to New York City’s Rusk Institute. Upon arriving, I was wheeled into a large room that I’m pretty sure they used in Born on the 4th of July. Mid 60’s decor, with four patients tucked into each corner of the large room that contained my bed.

The guy diagonally across from me was a diabetic pizza shop owner who was trying to keep his foot, fighting an infected ulcer. (He lost.) The guy to my right had Rickets. I’m sure, to be in Rusk, he had something more than that, but with my curtain always drawn I never saw him. Just heard him talk interminably on the phone with some unfortunate on the other end whom he willingly and in cringe-inducing detail related his symptoms to. And finally, opposite me, lay a man somewhere between the ages of 60 and 90, who appeared to have only one word left in his post-stroke universe. He repeated that word – “nurse” – upwards of 30 times an hour, and more frequently and at greater volume the later in the day it got. Combine this trio with Rusk’s affinity for keeping the hospital room temperature somewhere around 85 degrees, and you had all the earmarks of a Zimbardo-like study that would examine how people would function in a real-world hell.

Upon arriving, I immediately got out of the wheelchair and spent my first day since the accident upright, learning how to use crutches. As I returned to my bed that night, armed with a Harry Truman biography that a partner at my law firm had given me, I felt good. Around 9 pm, I started feeling tightness in my residual limb. Theorizing that I’d put my body through a lot, I started stretching to the best of my limited ability, convinced that I was just having muscle issues.

But the tightness evolved into a tingling, like my leg was falling asleep. As it escalated, I realized for the first time that I could feel everything from my knee to my foot, even though I’d left them both in an operating rom a week earlier. “No problem, weird sensation, but I’ll get through it,” I told myself. That was around 10 pm.

By 11 pm, lights off and trying to sleep, the thought occurred to me for the first time that I might be in trouble. I now had pins and needles – long ones – shooting into the empty space below my femur. Frightened, I called a nurse, who oh-so-generously gave me a Tylenol with codeine, explaining that she couldn’t get anything stronger without calling a doctor. So rather than bother him, she opted to give me the equivalent of a pillow to cushion my fall from the top of the Empire State Building, rather than the giant, inflatable pad that could safely catch me. And then the fun really started.

From about midnight until 3 pm, the pins and needles morphed into an increasingly hot, burning sensation that, before hospital staff finally relented to the now-screaming 26 year-old and administered morphine, I can only describe as being dipped in acid. I could feel my leg burning off my body, flames licking up my blackened skin and exposing it all the way to the bone below, at first inch by agonizing inch, and then all at once in a continuous symphony of pain. By the end, even the stroke-addled guy across from me, somewhere in his compromised brain, was saying, “God, just give the kid some drugs and shut him up! I can’t even hear myself scream ‘nurse!'” I have never, in all my life, experienced anything that comes close to that.

I lived the next 3 months of my life in constant fear. I quickly professed my allegiance to Pain’s enemy, Percocet, which the doctors prescribed me in the wake of my little foray into Dante’s masterpiece, and railed at them when they cut me off less than a week later. I stayed up late at night reading Grisham, for God’s sake, in an effort to forestall what I believed to be Pain’s inevitable return. In short, Pain controlled me for months, even though he had hung out with me for only a few hours one evening.

While I’ve never experienced anything quite that terrifying since, my now-quarterly get-togethers with Pain still have a disproportionate impact on my life. I find myself considering all kinds of coping mechanisms. Shortly after my accident, I tried wrapping my leg in tin foil, as there were those who claimed it works (it doesn’t, though it does stop the government from listening to the anti-American plots that my subversive left leg comes up with in my basement laboratory). I tried using a battery-powered massager, letting it vibrate against the end of my limb. While that helped chase Pain away for short periods of time, as soon as I fell asleep and dropped the massager to the floor, my friend came racing back. Plus, I felt like I should be wearing gold chains and velour whenever I used that device. Most recently, I’ve tried to overcome Pain through the power of my mind. While that hasn’t worked either, it has led to some truly bizarre visions.

Ten days ago, when Pain visited for the second time this year, I tried relaxing my body as much as possible, imagining that I could slow everything down and convince Pain that he wasn’t needed here. In my semi-conscious state, I briefly dreamt that I achieved such a profound calmness that my body become flat, only an inch or two thick, my face becoming thin, long and flaccid, like the Senator in the first X-Men movie. Unlike him, fortunately, I didn’t die a gruesome liquid death. But neither did I successfully kick Pain out of my bedroom, as he sent a nice shot of lightning torture down my leg despite my visualization, a jolt that returned me to my three-dimensional self.

As a result of my relationship with Pain, I feel that I have a dim understanding of why torture can so effectively convince people to say or do almost anything to make it stop. Despite the fact that I see Pain only sporadically, and even though those encounters are, all things considered, fleeting, they exact a lasting toll that’s far out of proportion to my objective experience. I live with limb loss every day, and I can say without equivocation that life with a prosthesis seven days a week, 14-16 hours a day, 365 days a year, is much less disabling than the 4-6 hours every few months when my nighttime visitor drops in unexpectedly. These encounters leave me drained, angry, and gun shy (“Will I fall asleep and be ok tonight? Or will Pain crash my party yet again?”).

And what scares me even more than this realization is the knowledge that I’m lucky. Many (most?) people with LL/D get unwanted visitations from Pain on a monthly, weekly, or even daily basis, and can only manage it through the kinds of medications that come with a whole different set of issues. The long, dark nights I experience 3-4 times a year can be a regular torment for others.

I have no words of wisdom, no platitudes about Pain. Only the knowledge that we’ll meet again, whether I want to or not, even though I’ll desperately try and lock it out once and for all, knowing full well I’ll fail.

9 thoughts on “pain: the nighttime phantom

  1. Yup. It does feel like jolts of electricity. And even though I function without complaint the rest of time, during a nocturnal bout of pain it’s hard not to feel sorry for myself. Has anyone anaylzed the cause of these episodes? As far as I can tell they have no relation to exercise, diet, illness or stress. Acetaminophen (lots of it) sometimes helps. And Netflix.
    Thanks, Dave for writing about this. And for your dead-on description of Rusk. Ah, the memories.

  2. Avra – thanks for the comment. I wrote this from a personal, experiential standpoint, so I didn’t perform research re. current treatment options. After reading your post, however, I did reach out to the Amputee Coalition of America and got the following info that may be helpful/ interesting.

    First, if you contact the ACA at 888/267-5669, they can provide you the most current articles they have about phantom pain, including several phantom pain-related articles from the September/October 2008 issue of inMotion and information on phantom pain from the late 2009 edition of First Step. In addition, here’s a list of older ACA articles on the topic:
     
    The Phantom Menace I
    http://www.amputee-coalition.org/inmotion/jul_aug_02/pain.pdf
     
    The Phantom Menace II: Fighting the Phantoms
    http://www.amputee-coalition.org/inmotion/sep_oct_02/phantom.pdf
     
    The Phantom Menace III: Physical Modalities
    http://www.amputee-coalition.org/inmotion/nov_dec_02/phantl.pdf
     
    Phantom Limb Pain and the Weather: Riding Out the Storm
    http://www.amputee-coalition.org/inmotion/sep_oct_05/phantomweather.pdf
     
    New Paths in Phantom Limb Pain Treatment
    http://www.amputee-coalition.org/inmotion/mar_apr_07/phantom_treatment.pdf
     
    New Paths in Phantom Limb Pain Treatment, Part 2
    http://www.amputee-coalition.org/inmotion/may_jun_07/phantom_pain2.pdf
     
    Pain Management and the Amputee
    http://www.amputee-coalition.org/easyread/fact_sheets/painmgmt-ez.html

    Hope this is useful to everyone!

  3. Dave – another great blog entry. I don’t know how many times I can say it. The descriptions of your phantom pain experience had me laughing out loud and cringing at the same time – similar to a Grisham novel. 🙂

  4. Dave, I think you are hillarious. I just shared with someone on AEP that I recently(9/10) had a LBKA and had pain one day after and ghosting for about a week. I prayed over my leg and foot the night before surgeory and thanked them (individualy & collectively) for all the years of service to me. Then when the ghosting started with my great toes ingrown toenail pulsing, it took a few days to realize I never prayed over them (done in Feb.,10). So within a week or so that went away. Haven’t had a problem since. I see you talked about the fear factor and that’s what needs to be overcome. The reality that it hurt, should not equate with Fear! Fear is a mind position just like the ghosting. If we release the pain / fear/ ghosting from our minds then they don’t have any control over us. Pray for the release of these things. Lay them to rest just as though they had a funeral. Rest in Peace and you’ll be at Peace. Our mind is what dominates our thinking, particularly our emotional feelings. The “Laws of Attraction” can confirm that if you need a source. Fear of something will always be answered with the something! I hope this gives some light to you and others who might read this. God Bless, Steve O

  5. Pingback: a different ordinary « less is more

  6. I know this is an old story but I just read it for the first time while sittingat the prosthetic office reading an old copy of inmotion mag while they worked on my leg. When the tech came back in I gave him the story and explained how this hits it on the head. We’ve had talks about it but could tell its not something easy to understand when you haven’t felt it. He is cutting it out to make copies for all the techs to share and understand a little more when talking with their patients. Thank you for a well written and understandable explanation.

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