Phantom Pain

Phantom Pain: An often-painful sensation of the presence of a limb that has been amputated. (Merriam-Webster)



August 1978

“C’mon, honey– smile.  It’s not that bad. Here, let me measure your feet.”  My family and I were in the Lincoln Square mall in Urbana, Illinois and I was more than miserable.  My older brother Peter and younger brother Ted were off in the visible distance, playing inside the large marble whale, where I longed to be.  Meanwhile, I was stuck with my parents in Sholem Shoes.  “I don’t think that will exactly be necessary,” I could hear my father say in a soft voice in response to the sales clerk.  My mom held up my white baby-looking boots, turned to the clerk and asked, “Might you have these in whatever your smallest girls’ size is in brown?”

for ted2In that moment I thought about the things my friends told me they hated – being sent to bed early, getting grounded, eating brussel sprouts.  But for me, the trip to buy new shoes was just as painful as pulling teeth without Novocain.  These were the days before the Internet and the pleasures of ordering online, in obscurity and privacy.  “Come here dear, please stick out your foot and let’s try this on.”  In her hand was a chocolate brown boot that resembled a cross between a baby shoe and an army combat boot.   Looking up at my parents first, I obliged but kept my socks on, trying to convince myself that perhaps she wouldn’t notice my difference.  I was wrong.  Louder than any other voice in the store, she exclaimed at the site of my misshapen, club-like feet, “Oh, my!” I felt absolutely humiliated.  I just wanted to escape that store and the experience that felt like hell to my nine-year-old self. “C’mon Meggie!  Le’ts play in the whale!”  It was Teddy.  I turned and instantly smiled….I was saved!





Charlieshoestore“Smile for the camera, Charlie!”  I wish it were that simple.  The absolute last thing on my nine-year-old son’s mind was to offer-up a smile.

It all started Mothers’ Day weekend, when we were going out to dinner and I scrambled to find hisMother's Day May 2014 brown leather sandals from last summer.   I had been worrying simultaneously about finding them and whether they’d fit.   For both of my boys each passing year means their feet grow in width more than length which makes finding comfortable shoes an increasingly challenging task.  Already late for our dinner reservation, I finally found the old pair and tried to squeeze his extremely wide feet into them.  “Owww, Mom!”  I looked up at Charlie and rememberedhow my own high-heeled shoes were also dreadfully uncomfortable, yet I said, unsympathetically, “Just wear them one last time, Char.  I promise I will find something that fits better after today.”

At dinner we carried our plates around  a large buffet table and I watched Charlie struggle uncomfortably.  His mood was sour, and I began to feel regretful.    The minute we got home I began a search online for extra-wide sandals.   It wasn’t easy, but I took quiet pleasure in being able to chase down those shoes from the privacy of my home.  No socially awkward salespeople, no public attention to my boy’s feet.  Nevertheless, seven Fedex deliveries later, my efforts were futile.  Nothing was wide enough.

Father's Day June  2014Then, on Father’s Day, I announced that I needed to take the kids to try on shoes at a nearby children’s shoe store.  I noted the reactions.  First, Ethan (our older son who also shares my genetic condition) firmly declared that he wanted instead to join my husband John on a Home Depot run.  Second, our daughter (with no physical difference) jumped with excitement at the chance to try on as many pairs of shoes and bright-colored sandals as she could.

As Charlie, Savanna and I entered the store, I promptly informed the first available clerk pointe blank that, due to our physical difference, no shoe would fit Charlie perfectly and so measuring his feet was pointless.  She looked at me quizzically at first, but then rolled with it.   Next, I threw out my best guess at a size, explaining my highest priority was to find extra-wide leather sandals for Charlie.   As we waited for the clerk to return from the depths of their storeroom, I attempted to distract Charlie by asking him to smile for a photograph.  Not happening.

The clerk eventually returned with a brown leather pair.  Charlie appeared visibly distressed, especially when I attempted to remove his socks to try on the pair.  “No, that’s okay Mom.  If they fit with my socks on, then we will know they could be wide enough to fit my feet.”  I stared at Charlie momentarily, and decided not to push.  In that moment, I could not only understand where he was coming from, I am quite positive I could personally feel it.  Although we both tried to get his foot into the left brown leather sandal, the foot was simply too wide.

That evening, as I was reflecting on the day’s events, I decided to read a New York Times article written by Miles Mile O'BrienO’Brien that my literary agent and friend Lisa had forwarded to me that morning. O’Brien, a science and technology correspondent at the PBS News Hour, had just recently (and unexpectedly) lost his left fore-arm.   Apparently, after his last shoot during a long assignment to Japan and the Philippines, O’Brien was stacking cases brimming with TV gear onto a cart. As he tried to strap a bungee cord around them, one of the cases toppled onto his left forearm.   The rest, as they say, is history.

While the piece focused on his transition professionally from a fully-abled journalist to an amputee and how he has learned to physically transition into the “mono-mano” life which (in his words), “is more manageable than you might think,” I couldn’t help but cue into what O’Brien described was his ‘biggest challenge.’ “The biggest problem I cope with is phantom pain.  My arm has become a ghost, immobilized as if it were in a sling—which is where it was the last time I saw it… the day goes on, it feels progressively tighter and tighter to the point of excruciating pain.”

That night I woke up in the middle of the night, but my mind was racing.  I scrambled to my iPad to find the definition of “Phantom Pain,” and the first description that popped up was from Wikipedia: “Phantom pains are sensations described as perceptions that an individual experiences relating to a limb or an organ that is not physically part of the body. Limb loss is a result of either removal by amputation or congential limb deficiencyI then compared the definition to that in Webster’s and realized that for whatever reason, Wiki acknowledged that phantom pains can be experienced as a result of a congenital limb deficiency but Webster’s definition was restricted to an experience suffered by amputees that suffered loss later in life.

Of course, if read literally, the Wiki definition makes no sense.  My boys and I would never experience any type of physical sensation of pain as a result of being born so digitally challenged.  We never had it to lose it.  On the other hand, Wikipedia might actually be onto something.   After all, there is a feeling of “pain” that I’ve always associated with the pointless and humiliating experience of trying on shoes that could never possibly fit.  There’s the embarrassment of subjecting myself to the fumbling of store clerks and stares of other shoppers while my problem is debated on the showroom floor.  There’s that pain and discomfort that perhaps Ethan purposefully avoided when he chose to skip the shoe store for Home Depot.

I have come to learn, however, that regardless of my own personal experience, my role as a parent is to help our sons push past the emotional torment, as my family did for me decades earlier.  I am committed to showing them that the feeling of degradation was only as real as we chose to make it.  This kind of “phantom” pain can dissipate with the right attitude.   I turned to Charlie.  “Hey, there is one last pair to try.  They are a nice navy blue leather…I love them!  Something tells me these will fit perfectly as long as you take your socks off. “He hesitated, and began to look around.  “Honey, they only care if you care.”  I saw his shoulders relax as he seemed to finally understand that I must have had a similar experience as a child.

Charlienewsandals June 2014To our collective delight the navy sandals fit….well, fit well enough for our family.  “Charlie! C’mon.  Let’s go outside and play!”  It was Savanna.  At that, Charlie finally smiled and ran off.   At least until the next time we need to buy shoes, thanks to his sibling, he had no longer any sign of pain, invisible or apparent.










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