Story-Gatherer

Complete strangers regularly tell me intimate details of their bodies, illnesses, and suffering. As near as I can tell, they see my prosthetic leg (and previously my scarred and misshapen leg), and this sign of my suffering and survival sparks an urgent need to share their illness stories with me.

I have received dozens of stories throughout the 28-year saga of my diagnosis, treatment, and recovery from bone cancer in my right leg, as well as my coping with late effects of cancer. Here’s one of my favorite moments, a story told to me not too long after I became an amputee, almost 20 years after I had cancer.

I watched anxiously as the last of the passengers left the gate area, proceeding down the broad airport hallway in response to the gate change announcement. An American Airlines representative gave a distracted smile to me and the man next to me, calling out as she left, “Someone will be back to get you.” I sighed.

Departure_gate_B6area_LFrederick_1208

“Hope they send someone soon,” commented my companion. He and I were stranded in airport wheelchairs, their stainless steel parts shining in the harsh fluorescent lights.

“Hope so. I need to make this flight, for sure,” I responded, turning to smile at the gentleman. “I’m going to a conference.” A fringe of white hair ringed a mostly bald head marked with several brown age spots. His watery, pale blue eyes were alert and focused on me.

As we waited, the man kept glancing at my prosthesis. “Were you in the military?” he asked, looking at my leg again.

“Ah no. I had bone cancer in my thigh years ago, and the doctors rebuilt it with bone grafts and metal implants. Then a series of staph infections led to the amputation this past summer,” I explained patiently, having answered this question several times already on this trip to other inquisitive travelers and flight attendants.

Pain etched itself on the man’s face. “The bastard took my wife!” I nodded, not sure what he meant by that. He continued, “She had lymphoma three times, and she fought real hard. She beat it twice. And then the third time she, she… She just…” he trailed off, stricken. Ah, the bastard was cancer.

“I’m so sorry about your wife,” I said automatically. “That’s so sad. It’s so… hard,” I finished weakly.

His eyes delved into mine, seeking understanding. “The third time she didn’t want to fight again. She told me she was too tired, that it was time to go.” Anguish twisted his face. “The bastard!”

I smiled sympathetically. “I’m so sorry. I’m grateful to survive,” I said. “And I never understand why some survive and others don’t, can’t, that is, I mean, they aren’t able to.” My face flushed as I stumbled.

“Yeah,” he said, nodding, still looking into my eyes. “Yeah.”

“It’s good that she had you to take care of her,” I offered hesitantly.

“Mmmmm” he responded, nodding. Our gazes held for a few moments, and then he looked off into the distance, seemingly lost in thought.

A younger man strode with purpose toward my companion and released the brakes on his wheelchair without addressing the seated man. With no choice but to go where pushed, my companion headed out. “I won’t let them leave without you!” he called, smiling at me and waving his hand briefly.

“Thanks! Nice to meet you. Hope you have a good flight,” I responded. Soon after, another efficient airline employee arrived to push me to the gate, and I pondered my encounter with the older man as we rolled along.

I am less a storyteller than a story-gatherer. Perri Klass, author of the classic medical school tale, A Not Entirely Benign Procedure, suggested that patients told her the intimate details of their lives because they saw her “as a comfortable repository for secrets,” and I think that is what I have become as well.

The Tyranny of Cheerfulness

giphy1“Well, you certainly have a very positive attitude,” said the white-haired woman with an approving nod.

“Thanks, yes. Most of the time anyway,” I replied. The woman had asked me how I am became an amputee as I mingled at a coffee hour at my parents’ church. I gave her the short version of my story—cancer, chemo, surgeries—and more details in response to questions, and I kept a smile on my face as I did so.

I wasn’t upset or irritated by her questioning. She was polite, even warm. Unless people are rude, I generally answer their questions quite pleasantly. Inevitably, this involves a smile and cheerful tone of voice.

Any cancer survivor learns quickly that cheerfulness is the mandatory emotional display  in order to be judged a good patient or a good survivor. On the one hand, medical evidence supports the belief that optimism, hope, and positivity correlate with improved health outcomes for patients. On the other hand, the pervasive cultural demand for positive attitudes from people with any significant illness, notably cancer survivors, is also widely (and often sarcastically)  acknowledged. Barbara Ehrenreich explained in “Welcome to Cancerland” that “cheerfulness is more or less mandatory.” Likewise, Samantha King describes the “tyranny of cheerfulness” in Pink Ribbons, Inc., an excellent book and documentary on the ways in which corporate breast cancer awareness advocacy often benefits corporations far more than it does cancer survivors.

I’m not the only cancer survivor who finds implicit demands to be cheerful exhausting, I know. It takes courage to resist the tyranny of cheerfulness and instead admit to strangers—and even friends, colleagues, and family—that cancer is a raw deal. And even more courage to add that not only was cancer treatment horrible, but it also left many of us with chronic late effects that seriously impact our quality of life.

This act of resistance takes courage because the reply is inevitably, “But you must be so grateful to have survived! Thank god for the amazing treatments that are available now!” This demand for gratitude and cheerfulness is almost never accompanied with any acknowledgment of our past or ongoing suffering, so it sounds a lot like, “Stop complaining! You are lucky to be alive and should be grateful no matter what you have to deal with.”

I admit I don’t want to be judged a bad survivor and shamed for speaking the truth. But there is something else at work here, at least for me. Like a moth drawn irresistibly to a flame, I desperately want to believe that sustained cheerfulness is powerful enough to make me feel better. Wouldn’t it be wonderful if having a positive attitude really did help?

I want to believe that I can eliminate my phantom limb pain by cheerfully refusing to accept that an amputated body part continues to hurt.

I want to cease having panic attacks at the dentist because I have been so positive and upbeat when working with my therapist to release traumatic memories of being immobilized on a gurney for surgeries that my brain stubbornly equates with reclined dentists’ chairs.

Maybe if I smile brightly enough, the side effects of my pain medications will stop making me miserable.

If I keep my chin up all day, the feelings of anxiety and depression will go away.

So far none of these things has proven true for me.

I know that the tyranny of cheerfulness is largely about other people’s discomfort with cancer survivors’ (or really anyone’s) suffering. But the tyranny is also seductive, in that it tempts us to believe that our suffering will abate if only we embrace the good cheer mandate with our whole hearts.

When this proves untrue, as it inevitably does, it might do survivors more good to let our chins drop, our upper lips droop, our relentless smiles dim, and positive our attitudes fail for a while. Taking a break from mandatory cheerfulness—even if only in private—can help us let go of not only the burden of other people’s expectations, but also the weight of our own.

 

Laughing Out Loud

I have a mug that says “I’m stumped!” and a t-shirt that says “The bear was faster,” accented with claw marks. Another t-shirt highlights the disabled parking symbol with the tagline: “I’m just in it for the parking.” As an above-knee amputee, I find these hilarious.

Not everyone shares my sense of humor, and I respect that. But for me, humor, language, and empowerment are entangled. And laughing at myself beats ranting about ableism or pretending that my difference doesn’t make a difference (to my students,  colleagues, even strangers).

I’m make it a practice to laugh in order to short circuit emotional pain, to dispel or diffuse it. I don’t always pull it off, but I have found that I can often use humor as an effective preventative to feeling pain at unkind, embarrassing, or just unwanted attention to my disability.

When I was in graduate school, parking was tight, as it is seems to be at all universities. It was commonly remarked that a university parking permit was merely a license to hunt. I joked one day that people only wanted to have lunch with me because I drove, and they wouldn’t have to give up their parking spaces.

I was able to park after lunch because I had “the parking spot of the goddess,” meaning disabled parking. Back then I still had my right leg, but it was in poor shape due to numerous reconstructive surgeries and terrible arthritis. After that quip, referring to disabled parking as “goddess parking” and my placard as the “goddess tag” became normative among my friends and colleagues, and I continue to use it today.

My spouse Glenn is responsible for our term for what’s left of my right leg following the amputation. I’m told this bit of leg is properly referred to as my “residual limb,” more colloquially called a “stump,” but neither of those appealed to us. Glenn coined “leglet,” which is decidedly more playful.

My friend G’linda shares my joy in sarcasm and my resistance to seeing disabled people as inspiration porn for nondisabled people. G’linda often invokes Bette Midler’s classic song. “It’s you—the wind beneath my wings!” she quips. We laugh, and then she pretends to be worried. “Wait a minute—does that make me the wings above your wind?!”

I loathe meetings (the worst part of being a professor). One of my go-to jokes when discussing committee meetings, council of chairs, faculty affairs, or other meetings I do not wish to attend is to say, “Sorry, I can’t go to that meeting. I only have one leg.” I hold up my index finger and shake my head in fake dismay, reiterating, “Just one,” as though this is a perfectly reasonable justification.giphy

My BFF affectionately refers to my amputation as “the paper cut,” harkening back to a conversation we had years ago about people who tell me that they understand how I feel because their grandfather had an amputation or because they had to have knee surgery to repair a torn ligament\. “Yeah,” she had joked, “I know just how you feel. I once had a paper cut!”

My little brother—now in his 40s, but still my little brother—came up with one of the best lines ever. We were in sight seeing in San Francisco. I was exhausted and clearly having trouble walking. I needed to rest, and I apologized to Mark, my sister-in-law, and niece. Mark looked at me with mock annoyance and said loudly, “Again with the one-leg! Jeez, let it go already.” Several people looked at him, dismayed (obviously not knowing he was my brother and teasing me), and I doubled over with laughter. That’s become a perennial in-joke for my family.

Legendary Saturday Night Live comedian, Gilda Radner, who died from ovarian cancer, wrote, “Cancer is probably the unfunniest thing in the world, but I’m a comedian, and even cancer couldn’t stop me from seeing the humor in what I went through.” Living with cancer’s late effects is also unfunny, but the humor is there, too, and I continue to look for it.

 

 

Travel Tips

Photo credit: http://addisonyachtcharters.com, via: https://creativecommons.org/licenses/by-sa/4.0/

Photo credit: http://addisonyachtcharters.com, via: https://creativecommons.org/licenses/by-sa/4.0/

“Sweetie!” I bellow from the depths of a white plastic laundry hamper where I’m frantically pulling dollar bills from pockets. “I need your ones and fives!” Well used to my pre-conference ritual, my husband dutifully goes through his wallet and yesterday’s pants for $1 and $5 bills and adds them to the growing stack of crumpled bills that I will use as tip money.

Nine days later, I’m back from attending two conferences, flying from California to Ohio, then Colorado, before returning home. As a long-term cancer survivor with late effects, travel costs significantly more for me than it does for most people.

Before I travel, I book (more expensive) direct flights whenever possible to avoid the stress of rushing between connecting flights.

I tip the—almost exclusively minority, typically immigrant—people who help with my bags and wheelchair. I dislike relying on airport wheelchair services, but long lines at security and enormous terminals often make it necessary.

I don’t know hourly wages earned by curbside luggage handlers, wheelchair pushers, courtesy shuttle drivers, and hotel bellhops, but they cannot possibly be lucrative. I’m grateful to have sufficient income that I can afford to be generous to the people who help me, especially since they are almost always resourceful and kind. That said, the tipping really adds up.

In addition, I bring a ton of luggage, and that costs additional fees. And yes, airlines are allowed to charge disabled passengers for all baggage, including medical equipment; the only exemptions are wheelchairs, walkers, and similar mobility devices. I pack travel crutches to use in the morning and evening when I don’t wear my prosthesis. And I lug a travel shower chair because hotels will not promise to meet my needs, only note my “preferences” and “do their best” to accommodate me.

Side note: Most hotels have two categories of rooms—regular and handicapped. You’d think I’d like the handicapped ones with the built-in shower chair, but you’d be wrong. The vast majority of these rooms are designed for people who use wheelchairs and include roll-in showers that unfailingly cause water to spill over the floor, which makes maneuvering on crutches deadly. Add in the inevitable miscommunication between the reservation staff and the front desk, and it’s easier to just get a regular room and bring what I need.

At conferences, I wear myself out going to sessions and so tend to take cabs when others might walk to meet colleagues for dinner. Or else I pay extra for food delivery when I am too exhausted to go out.

It’s not that $100-$200 in tips and fees during a trip is that big a deal. But I am increasingly aware of the ways in which necessary assistance for me costs extra, either through charges or reasonable expectations of tips.

These extra costs matter even more when we consider the pay gap for people for disabilities in the U.S., which exists at every income level. My own employment and educational category—a professor with a Ph.D.—averages over $20K less per year for disabled people. And of course the disability pay gap intersects with pay gaps based on racism, sexism, and other forms of discrimination, further marginalizing vulnerable people.

I don’t have a solution, since I can’t refuse to pay fees, and I don’t want to deny tips to service workers. But it is important to boost public awareness of ways people with disabilities and chronic illnesses incur higher costs and earn lower wages, presenting barriers to our full participation in society.

As with honoring other forms of diversity, fostering full inclusion of disabled people, including cancer survivors with late effects, within our workplaces, transportation systems, and other public spaces will take collective efforts against systemic barriers and ultimately will enrich our communities and institutions. The ADA was vital legislation, but many transportation needs go unmet.

In the meantime, I’m unpacking my jumbo suitcase and allowing small bills to collect on the bottom of my purse for my next trip.