Pain:
The nighttime phantom
by David McGill
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.
8IFO*mSTUCFDBNFBOBNQVUFFUIF
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
NPSF*EJTUSBDUFENZTFMGUIFMFTT*EGFFM
it. There are several problems with this
approach.
Second, if the “quiet mind” theory held
USVFUIFO*XPVMEFYQFDU1BJOUPESPQCZ
for visits more frequently on the weekends,
XIFO*UFOEUPUIJOLMFTTUIBOEVSJOHUIF
XFFL*UXPVMEKVNQPVUBOETVSQSJTFNF
XIFOnJQQJOHNJOEMFTTMZUISPVHI&YDFM
TQSFBETIFFUT*DBOUVOEFSTUBOE*OPUIFS
XPSETFWFSZ&YDFMTQSFBETIFFU*SFBE
*U
would jump me whenever Grey’s Anatomy
DBNFPOUIF57#VUNZFYQFSJFODFIBT
failed to validate the “Mind-on-Mute
Hypothesis.”
4JNJMBSMZJG*NBXBLFFOPVHIUPSFBEB
book, Crime and Punishment and A Farewell
to Arms are out. The wee hours of mornThird, keeping my mind busy in the
ing, pain and great literature do not blend.
darkest hours of the day isn’t compatible
So that leaves me with the collective works
with good art. This isn’t a medical issue,
of John Grisham. The wonderful thing
CVUBOBFTUIFUJDPOF4PJG*UVSOPOUIF57 about Grisham is that you really believe
BUBN*IBWFUPEFBMXJUIUIFBHPOZPG you’re a fast reader when reading one of his
PFVWSFT*OUIFFBSMZEBZTPGNZ
QPTUBDDJEFOUMJGFFYQFSJFODJOH
pervasive nighttime phantom
TFOTBUJPO*LOPDLFEPGGThe
Firm, The Pelican Brief and A
Time to Kill in three consecutive nights. But this sense of
accomplishment was undercut
CZUIFGBDUUIBU*XBTXFMM
reading Grisham.
'JSTU*mOEJUIBSEUPTMFFQXIJMF
TJNVMUBOFPVTMZKVHHMJOHBYFTGSZJOH
an egg and reading Neuromancer. My
QFSTPOBMFYQFSJFODFXJUIQMVTZFBST
PGFYQFSJFODFCFIJOENFJOUIJTBSFBJT
that sleep and furious mental activity are
not complimentary activities.
42
mFSZFYQMPTJPOTJONZBCTFOUMJNCand
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
SFBEUIJTTDSJQUBOEUIPVHIUi:FBI*OFFE
UPTQFOEUIFOFYUGFXNPOUITPGNZMJGF
working on this.”)
inMotion Volume 21, Issue 6 November/December 2011
5IFTFJTTVFTBTJEF*DBOUSVUIGVMMZSFQPSUUIBU*WFOFWFSIBE
consistent, activity-stopping
phantom pain during the day.
&WFS*UTBMXBZTBUOJHIU"OE
JUTVTVBMMZOPUVOUJMBGUFS*WF
fallen asleep that Pain knocks
PONZEPPS0OMZBGUFSUP
90 minutes of unconsciousness
EPUIFFMFDUSJDFYQMPTJPOTTUBSU
and they recur every few minutes for the
OFYUIPVST
There’s something particularly unnerving
about living with Pain at night. No one else
JTBXBLFTP*NBMXBZTBMPOFXIFOJUDPNFT
There’s nowhere to go and nothing to do at
BNTP*VTVBMMZMJFJOBTMFFQZIB[FHFUting jolted awake every 90 seconds or so.
1BJOIBTUBVHIUNFUIFGPMMPXJOHUSVUI5JNF
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
XIFO*BDUJWFMZXBOUUJNFUPTQFFEVQ.Z
JSSFHVMBSWJTJUTXJUI1BJOBSFUIFFYDFQUJPOUP
that rule.
My Daughter: So you feel pain in the air?
Me:/P*GFFMQBJOJONZGPPU5IFSFTB
shooting, stabbing pain down the side of my
foot into my little toe.
My Daughter: But Dad [patient smile on
IFSGBDFFYQMBJOJOHUIFPCWJPVTUPIFSJEJPU
GBUIFS>ZPVEPOUIBWFBGPPU0SBMJUUMFUPF
Me:<(FUUJOHFYBTQFSBUFE>:FT*LOPXCVU
UIBUTXIFSF*GFFMUIFQBJO*IBWFOPMFH*
have no foot, but the pain is there.
My Daughter: [Serious, commencing an
A Few Good MenDSPTTFYBNJOBUJPO>%JEOU
the doctors take your leg away after your
accident?
Me: [Voice rising] Yes.
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.
My Daughter: And you don’t have that leg
anymore, do you, Daddy?
Me: No, but –
My Daughter: [Triumphantly] So you can’t
GFFMQBJOUIFSFBOZNPSF*UTOPUBUUBDIFEUP
you. [Turns and nods knowingly to the jury,
her two brothers, and judge, my wife, who
collectively nod in agreement with the minJBUVSF$MBSFODF%BSSPXBOEMPPLFYQFDUBOUMZ
at me, having already reached their verdict.]
Me:3JHIUCVUUIBUTXIFSF*GFFMUIFQBJO
[Plaintively, turning to the judge and jury,
#VUMJNCMPTTEJGGFSFODFJTBUSVMZBMJFOFYQF- pleading my case.] That’s why this is so
SJFODF'PSUIPTFPGVTXIPQSJEFUIFNTFMWFT messed up. [Voice rising, getting higher
on their communication skills, it’s especially QJUDIFE>*GFFMUIJOHTJOQBSUTPGNZCPEZ
frustrating. Trying to describe how Pain
UIBU*OPMPOHFSIBWF
visits a body part that’s no longer there ends
up sounding like Abbot & Costello Visit the
My Daughter: [Condescendingly.] Do you
Trauma Ward
feel pain in your hair also?
My Daughter: So you feel pain in your leg,
right, Daddy?
Me:8FMM*GFFMQBJOCVUJUTOPUJONZMFH
<QPJOUJOHUPXIBUTMFGUPGNZGFNVS>*UTJO
my foot [waving vaguely towards the empty
space where my leg used to be].
Me: [Smashing head on table, words
coming out between each forehead-table
DPOUBDU>/0<4NBDL>*<4NBDL>'&&-
<4NBDL>*5<4NBDL>*/<4NBDL>.:
<4NBDL>'005<4NBDL>
My Daughter: Daddy, does your head hurt?
Because you’re bleeding everywhere.
My Daughter: But there’s nothing there.
&/%0'4$&/&
Me: That’s right.
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org
43
*DBOUFYQMBJOJUUPBOZPOFXJUIBMMPGUIFJS
limbs. The concept just doesn’t translate. But
XIFO*BUUFOEFEBCJHDPOGFSFODFMBTUXFFL
BOENFOUJPOFEUIBU*XBTHPJOHUPXSJUFB
post on phantom pain, a fellow amputee
immediately shook her head affirmatively
BT*EFTDSJCFEXIBUJUGFMUMJLFBOETBJEi0I
ZFBI*HFUFYBDUMZUIFTBNFUIJOHw
*N$IBSMUPO)FTUPOJOPlanet of the Apes.
Everything’s familiar but no one can
DPNQSFIFOENFVOMFTT*UBMLUP
another non-Ape.
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
BSPVOEEFHSFFTBOEZPVIBEBMMUIF
Rule of Pain #3:
Phantom pain is
more crippling than
limb loss.
Living with limb loss,
for me, is undeniably
different from my preaccident 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
XPSTU*IBEMFGUUIF-POH
*TMBOEIPTQJUBMXIFSF
doctors had amputated
my leg and journeyed
to New York City’s Rusk
*OTUJUVUF6QPOBSSJWJOH*XBTXIFFMFEJOUP
BMBSHFSPPNUIBU*NQSFUUZTVSFUIFZVTFE
in Born on the Fourth of July. Mid ‘60s 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.
*NTVSFUPCFJO3VTLIFIBETPNFUIJOH
more than that, but with my curtain always
ESBXO*OFWFSTBXIJN+VTUIFBSEIJN
talk interminably on the phone with some
unfortunate on the other end whom he
44
But the tightness evolved into a tingling, like
NZMFHXBTGBMMJOHBTMFFQ"TJUFTDBMBUFE*
SFBMJ[FEGPSUIFmSTUUJNFUIBU*DPVMEGFFM
everything from my knee to my foot, even
UIPVHI*EMFGUUIFNCPUIJOBOPQFSBUJOH
rom a week earlier. “No problem, weird
TFOTBUJPOCVU*MMHFUUISPVHIJUw*UPME
myself. That was around 10 p.m.
By 11 p.m., lights off and trying to sleep,
the thought occurred to me for the first
UJNFUIBU*NJHIUCFJOUSPVCMF*OPXIBE
pins and needles – long
ones – shooting into the
empty space below my
GFNVS'SJHIUFOFE*DBMMFE
a nurse, who oh-sogenerously gave me a
Tylenol with codeine,
FYQMBJOJOHUIBUTIF
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.
'SPNBCPVUNJEOJHIU
until 3 p.m., the pins and
needles morphed into an
increasingly hot, burning
sensation that, before
hospital staff finally
relented to the nowearmarks of a Zimbardo-like study that
XPVMEFYBNJOFIPXQFPQMFXPVMEGVODUJPO screaming 26 year-old and administered
NPSQIJOF*DBOPOMZEFTDSJCFBTCFJOH
in a real-world hell.
EJQQFEJOBDJE*DPVMEGFFMNZMFHburning
6QPOBSSJWJOH*JNNFEJBUFMZHPUPVUPGUIF off my body, flames licking up my blackened
TLJOBOEFYQPTJOHJUBMMUIFXBZUPUIFCPOF
wheelchair and spent my first day since
below, at first inch by agonizing inch, and
the accident upright, learning how to use
DSVUDIFT"T*SFUVSOFEUPNZCFEUIBUOJHIU then all at once in a continuous symphony
of pain. By the end, even the stroke-addled
armed with a Harry Truman biography that
guy across from me, somewhere in his
BQBSUOFSBUNZMBXmSNIBEHJWFONF*
compromised brain, was saying, “God, just
GFMUHPPE"SPVOEQN*TUBSUFEGFFMJOH
HJWFUIFLJETPNFESVHTBOETIVUIJNVQ
tightness in my residual limb. Theorizing
UIBU*EQVUNZCPEZUISPVHIBMPU*TUBSUFE *DBOUFWFOIFBSNZTFMGTDSFBNA/VSTFw*
IBWFOFWFSJOBMMNZMJGFFYQFSJFODFE
stretching to the best of my limited ability,
anything that comes close to that.
DPOWJODFEUIBU*XBTKVTUIBWJOHNVTDMF
issues.
inMotion Volume 21, Issue 6 November/December 2011
"TBSFTVMUPGNZSFMBUJPOTIJQXJUI1BJO*GFFMUIBU*IBWFBEJN
understanding of why torture can so effectively convince people to
TBZPSEPBMNPTUBOZUIJOHUPNBLFJUTUPQ%FTQJUFUIFGBDUUIBU*TFF
Pain only sporadically, and even though those encounters are, all
UIJOHTDPOTJEFSFEnFFUJOHUIFZFYBDUBMBTUJOHUPMMUIBUTGBSPVUPG
QSPQPSUJPOUPNZPCKFDUJWFFYQFSJFODF*MJWFXJUIMJNCMPTTFWFSZ
EBZBOE*DBOTBZXJUIPVUFRVJWPDBUJPOUIBUMJGFXJUIBQSPTUIFTJT
7 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
WJTJUPSESPQTJOVOFYQFDUFEMZ5IFTFFODPVOUFSTMFBWFNFESBJOFE
BOHSZBOEHVOTIZi8JMM*GBMMBTMFFQBOECF0,UPOJHIU 0SXJMM
Pain crash my party yet again?”).
*MJWFEUIFOFYUNPOUITPGNZMJGFJODPOTUBOUGFBS*RVJDLMZ
professed my allegiance to Pain’s enemy, Percocet, which the doctors
prescribed me in the wake of my little foray into Dante’s masterpiece,
BOESBJMFEBUUIFNXIFOUIFZDVUNFPGGMFTTUIBOBXFFLMBUFS*
stayed up late at night reading Grisham, for God’s sake, in an effort to
GPSFTUBMMXIBU*CFMJFWFEUPCF1BJOTJOFWJUBCMFSFUVSO*OTIPSU1BJO
controlled me for months, even though he had hung out with me
for only a few hours one evening.
And what scares me even more than this realization is the
knowledge that I’m lucky. Many (most?) people with limb
loss/difference 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.
5IFMPOHEBSLOJHIUT*FYQFSJFODFUJNFTBZFBSDBOCFBSFHVMBS
torment for others.
*IBWFOPXPSETPGXJTEPNOPQMBUJUVEFTBCPVU1BJO0OMZUIF
LOPXMFEHFUIBUXFMMNFFUBHBJOXIFUIFS*XBOUUPPSOPUFWFO
UIPVHI*MMEFTQFSBUFMZUSZBOEMPDLJUPVUPODFBOEGPSBMMLOPXJOH
GVMMXFMM*MMGBJM
Reprinted with permission from less is more
(limblogger.wordpress.com).
8IJMF*WFOFWFSFYQFSJFODFEBOZUIJOHRVJUFUIBUUFSSJGZJOHTJODF
my now-quarterly get-togethers with Pain still have a disproportionBUFJNQBDUPONZMJGF*mOENZTFMGDPOTJEFSJOHBMMLJOETPGDPQJOH
NFDIBOJTNT4IPSUMZBGUFSNZBDDJEFOU*USJFEXSBQQJOHNZMFHJO
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
MBCPSBUPSZ
*USJFEVTJOHBCBUUFSZQPXFSFENBTTBHFSMFUUJOHJU
vibrate against the end of my limb. While that helped chase Pain
BXBZGPSTIPSUQFSJPETPGUJNFBTTPPOBT*GFMMBTMFFQBOEESPQQFE
UIFNBTTBHFSUPUIFnPPSNZGSJFOEDBNFSBDJOHCBDL1MVT*GFMUMJLF
*TIPVMECFXFBSJOHHPMEDIBJOTBOEWFMPVSXIFOFWFS*VTFEUIBU
EFWJDF.PTUSFDFOUMZ*WFUSJFEUPPWFSDPNF1BJOUISPVHIUIFQPXFS
of my mind. While that hasn’t worked either, it has led to some truly
bizarre visions.
5FOEBZTBHPXIFO1BJOWJTJUFEGPSUIFTFDPOEUJNFUIJTZFBS*USJFE
SFMBYJOHNZCPEZBTNVDIBTQPTTJCMFJNBHJOJOHUIBU*DPVMETMPX
everything down and convince Pain that he wasn’t needed here.
*ONZTFNJDPOTDJPVTTUBUF*CSJFnZESFBNUUIBU*BDIJFWFETVDIB
profound calmness that my body become flat, only an inch or two
thick, my face becoming thin, long and flaccid, like the Senator
JOUIFmSTU9.FONPWJF6OMJLFIJNGPSUVOBUFMZ*EJEOUEJFB
HSVFTPNFMJRVJEEFBUI#VUOFJUIFSEJE*TVDDFTTGVMMZLJDL1BJOPVU
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.
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org
45