Struggles of the Stumplife

This is me last night at the C___ M___ Zoo (located on a mountainside) where I went with some friends to enjoy 50 acres of twinkle lights and holiday cheer. Loose fitting beret, Mackintosh tartan scarf, vintage belted wool tweed jacket (because the belt keeps the jacket from falling onto the wheels, because the length falls over my lap to keep the legs and stump warm, and because when I’m standing it really compliments my figure), wheelchair gloves over liners to keep fingers warm but still allow me to be in control, and one warm winter boot. Mmmm… festive. But despite the smile on my face and despite the beauty of the chilly weather and the lights, it wasn’t the cheeriest of events.

It was uncomfortable and, at points, frustrating.

Everyone of you knows what it is like to have a zit on your face, a stain on your shirt, or something that you’re sure everyone is looking at. Sometimes we know it’s all in our head and no one is actually staring, but sometimes it isn’t all in our head and people really are staring. It has never been so painfully obvious to this amputee that she was being stared at as it was last night. Let me give you an anatomy lesson by way of coming about to an explanation:

Men have a penis. (Yep, I know you’re all shocked to find out this way.) It fits tidily into their trousers and is covered easily by their pants. Women have breasts and a yoni. Their breasts fit into a brassiere and are covered by their clothing, and a yoni has no problem being covered and hidden away by whatever she chooses to wear. Hermaphrodites may have both but we would probably never know we met one unless they told us because that’s how well clothing works. We all have legs, arms, and backs that others may find attractive. Waists. Hips. Shoulders. Bums. Some of us are more muscular, more lean, more curvy, or more plump. Some of us wear clothing that accentuates our figure or particular parts more than others, yet the parts remain (mostly) covered in public. While it is perfectly normal to note when someone has a body that seems particularly attractive to us, it is not socially acceptable to stare agog at another human being’s bits.

So why ~ anyone, anyone ~ if it is not acceptable for me to stare (drooling) at some attractive man’s John Thomas, firm pecs, and toned arms ~ anyone, anyone ~ or for him to stare at my bosom and yoga pant clad yoni and caboose ~ anyone, anyone ~ would it be acceptable for someone to stare at my stump?

Anyone? ANYONE?!

(Ferris Bueller’s Day Off, in case you were searching for that reference.)

My stump is the bit of my calf that remains below my knee after having my foot and ankle amputated 7 months ago. Having such a drastic change take place as an adult is fairly earth shattering. It’s shape no longer matches my other calf and it’s muscles, although intact to the level of the amputation, no longer function the same way they once did because they don’t have the same anatomy to pull against. I have a scar that goes from the inside of my leg to the outside along the bottom and the skin sinks in along it. The shape of my tibia is visible through my skin at the bottom of the stump and if you were to touch it you would feel the bone growth on the end that feels like drops of wax on the side of a candle. And there is this area along the inside edge of the scar where, between swelling at the time of surgery that has since subsided and loss of mass from tissue atrophy and shrinkage since the surgery, the skin makes a fold that is reminiscent of that which it is named for:

Invagination

If you think that the term invagination makes the stump sound more intimate than you anticipated, then I’m glad you’re reading this. The stump is incredibly intimate.

For an amputee, the stump is more than just a part of a limb. It is the piece that remains of what was once there and what was once a part of the identity of self. It’s a constant reminder of what is no longer there and never will be there again. It doesn’t look like it once did and it seems awkward and unattractive compared to the elegant perfection of the human body. It is tender and it is sensitive to the touch, temperature, elevation, movement, and pressure. The nerves don’t know why they can’t find the rest of the limb anymore and they fire like crazy trying to find it. The sensations it feels are inexplicably complex and cannot be understood without experiencing it, not even with the most vivid descriptions and imagination. Having it exposed to the view of others feels as vulnerable as being naked. Allowing others to touch it requires trust in and comfort with the other. When devotees write an amputee, they don’t ask for pictures of the face or other bits, they want pictures of the stump; it’s like pornography for them. The stump is a constant question mark accenting the questions of self that unsurprisingly arise when you’ve handled the trauma of amputation:

Am I still me?

Will I ever be able to do the things I love again?

Will anyone find me alluring and attractive anymore (or ever again)?

Who am I without the ____?!

Will people ever see me again or will they only see the stump?

Are you starting to get the picture? My stump is as intimate a body part to me as those other parts which I keep unespied. When I’m in public it is never uncovered. Whether I use an ace bandage, a shrinker, a leg warmer, or I simply fold the pant leg into itself to make a stump-burrito, it is covered and tidy.

Much like the rest of my bits, you can see the vague shape of my stump but that is all you can see.

It’s kept hidden thusly not only because of how it makes me feel to expose it but also because of how society receives such exposure.

For millennia artists have captured the naked human form in sculpture and in painting because of its beauty, elegance, and grace. Yet outside of Michael Stokes, you’d be hard pressed to find such art capturing the beauty of a naked amputee except in artistic campaigns deliberately designed to bring awareness to disabilities. Why?

There’s a stigma that says the amputated body isn’t beautiful anymore and the stump doesn’t hold inherent beauty.

The form has interest for artists and showing the stump can bring about awareness for social justice, but it isn’t inherently attractive or desirable.

It should be hidden because it makes people uncomfortable.

Just writing those vile words brings a scowl to my face.

Look.

I’m a realist.

I know everyone doesn’t see amputees regularly and the novelty catches people off guard. I get it! I know I am not unattractive and I’ve never been afraid to wear that which is flattering to my figure; this is to say that I’ve been looked at and I know what it is like to be stared at for uncomfortably long moments because someone found something lovely to behold. I unfortunately also now know what it is like to be stared at for uncomfortably long moments because someone found my physical difference uncomfortable and unattractive.

Whether someone is shamelessly staring at my tush, my chest, my whole figure, my long legs, or my stump, the feeling I’m left with is unpleasant.

What I found to be most fascinating last night was the unfortunate reality that it wasn’t the children whose behavior crossed a line but rather the adults with them. We are adults and we know better. Yet it was the adults, who likely are in support of the #MeToo campaign started earlier this year, staring conspicuously at my stump last night as if that were acceptable while knowing staring at my other bits isn’t.

Meanwhile, children are remarkable when they see an amputation: they get excited and sometimes even squeal with glee to see someone with a different leg, ask the questions, look at it with curiosity and sometimes concern that asks if it hurts, and then they look at my face and talk to me. When they stare, it’s not at the leg, it’s at the woman it’s attached to and their faces never show judgement, horror, or anything negative. They look, process the difference, and accept that the difference exists. Children don’t lack curiosity about it, but they do lack judgment, disgust, fear, and uncertainty.

Adults were the ones last night who stared uncomfortably long at me and my stump with looks on their faces that betrayed their emotions. Adults were the ones who would stop midstride right in front of me. It was adults who would look at me with a shocked stare bordering on disgust, confusion, or horror while pulling their children away toward some exhibit or other as if my mere presence was the appearance of some horror movie character. And it was adults who would look incredulously at me while blocking my path, bumping into me, walking right in front of me, and forcing me to jerk to a halt in order to avoid colliding with them.

Fun fact: Most wheelchairs come with seat belts so that when asshats cause the seated to have to jerk out of the way to avoid a collision they don’t lose their seat and take a tumble anyway.

Another fun fact: I don’t know anyone other than paraplegics that keep the seatbelt on the chair.

Final fun fact: The chair I’m in doesn’t have one but last night I wished that it did!

The zoo is on a mountainside and on wheels the slope is such that “oh shit” bars (wheelie bars on the back of a wheelchair that keep you from wheelies that are too high to control) are necessary to keep the chair from tipping over backward just facing uphill (no wheelies required). I had us taken to the top exhibit of the zoo so I could roll down to the bottom instead of wheeling to the top; working with gravity seemed like a much safer and more interesting prospect than fighting against it. Yet despite my master plan to make the zoo easier on myself by rolling downhill, I went to bed last night in agonizing pain.

It wasn’t the rolling or controlling my chair that caused the pain. After 7 months I’m a rockstar in that chair. I injured myself avoiding the adults who felt that because they have two legs they automatically had the right of way and therefore stepped and or stopped right in front of me. I jerked myself and my chair to the side and to a halt to avoid hurting people who saw me rolling down a hill and either didn’t have the sense to consider or didn’t care to consider what stopping and standing in front of a rolling chair might accomplish.

Remarkable that people who seem capable of common sense and courtesy on the road (mostly… I assume…) would be so inept at the exact same skills when applied to the presence of someone who is physically disabled.

Why?

The stump was too shocking and the wheelchair was too obtrusive to their expectations of normalcy that the juxtaposition of the two was enough to alter their ability to behave with common courtesy, decorum, etiquette, or sense.

As it has been with every negative experience I’ve had because of my amputation, it wasn’t every adult we came across that was completely oblivious. However, it was frequent enough that my friend was agitated and offended for me and it was enough that her children, who were all about the lights and seeing the animals at night, noticed as well. And it was unsettling enough that as I nursed my aching body having avoided too many near collisions to count last night that I angrily declared I would be plowing into the oblivious from this point forward.