Failing Better


So I just left a coffee shop and failed to look down to see a speed bump in the parking lot. I caught my prosthetic toes and went tumbling.

My left hand, hip, and forearm smacked the pavement hard, and the pain registered a half-second after the impact. Ouch.

A second later, humiliation stained my cheeks as I lay sprawled, my laptop bag thrown several feet from me and my body twisted with my unbent prosthetic leg at an awkward angle. I looked around quickly, but for once my epic fail went unwitnessed.

Urban Dictionary—an indispensable aid for faculty whose students spout innovative terminology at dizzying rates—defines epic fail as a “complete and total failure when success should have been reasonably easy to attain.” That about sums up walking across a parking lot, which should be a no-brainer for me after all these years as an amputee.

I know better than to walk without looking down, but I did it anyway because I was distracted while digging in my bag for my car keys, a multi-tasking luxury that leg amputees must forgo – or pay the consequences. I can walk or look at something (other than the ground), but not both.

As I awkwardly regained my footing and retrieved my bag, a rapid series of emotions moved through my body. Resentment compressed my lips into a thin line. Gratitude that I was not seriously hurt released my shoulders from their clench. Grief for my pre-cancer body-self rolled through my stomach. Shame at my failure to accomplish a basic life task kept my cheeks hot and tingly.

The Irish writer Samuel Beckett’s famous quote (taken out of context from his brooding contemplation of “the void”) came to me: Fail. Fail again. Fail better.

I’m not sure I’m failing any better now than when I first became an amputee. In fact, this lapse of good judgment is arguably a worse fail, since I knew full well that I was doing something dangerous, yet I did it anyway.

As I made my way to my car, I tried to think of a positive outcome, a lesson I had learned from this particular failure. How could I think of this as a better fail than the last one? I couldn’t.

Driving home, left side aching, it finally occurred to me that the best thing I could do would be to be kind to myself, to offer myself compassion rather than condemnation. That’s not easy for me; beating myself up for imperfections is a long-time habit. Offering myself the same compassion I would offer to a friend if she fell for any reason could be a transformative experience. If I think of failing better in terms of more effectively coping with the inevitability of failure (as opposed to moving closer to achieving success following a failure), I can reframe this as a better fail.

I managed to stop berating myself and instead talked gently to myself as I catalogued my aches and pains and affirmed the importance of not making this same mistake again. I spoke kindly, reassuring myself that it wasn’t a big deal, that there is no need to feel ashamed by my fall.

I think it’s time for an update and repurposing of Beckett’s famous quote:

Fail. Fail again. Fail compassionately. Fail shamelessly. Fail kindly. Fail with self-love.










Learning to Speak Survivor Language


“I refuse to say ‘I’m fine’ when I’m not,” I said, peering steadily into the eyes of a woman who had asked me how I cope with late effects of cancer treatment.

I continued, “People generally don’t want to hear how I really am, so I say, ‘I’m hanging in there’ or ‘I haven’t given up yet’ or ‘I’ve been worse’–every one of which is absolutely true. I am hanging in there. And I say these things to remain true to myself. I spend a lot of time pretending to be more or less fine so that I can work and spend time with friends, but I also speak that tiny bit of truth to validate myself.”

I had just finished sharing a fairly smooth, practiced, and even funny version of my painful cancer and late effects story. I prefaced my remarks by noting that my story had been told and retold many times during 30 years of cancer and late effects. Over the years, I have become quite fluent in speaking the Survivor language.

I have had 30 years to learn how to speak Survivor, the Cancer Late Effects dialect specifically. Many times, I have offered a useful concept and some turns of phrase to others who are learning to speak one of the Chronic Illness or Disability dialects of Survivor language, which share many commonalties with my own. I first learned some of the Chronic Illness dialect from a dear friend who lives with, conducts research on, and tells stories of Irritable Bowel Syndrome.

The relief and joy of hearing your dialect of Survivor language spoken–whether in a personal conversation, a Facebook post or email, or a presentation being given by a stranger in the front of the room–can be immense. It’s empowering to learn that those who have gone before us coined words for our shared experiences. If you or someone you love lives with chronic illness or disability, definitely check out Spoon Theory, for example.

I’m much newer to speaking Amputee and treasure the words I learn in my fleeting encounters with other AKAs and BKAs [above knee amputees and below knee amputees], often in airports. Because of the courage of a number of young women on my university campus, I have learned to speak a limited amount of Survivor, Sexual Assault dialect, not fluently but enough to offer compassion, respect, and resources.

No one likes having to learn Survivor dialects for themselves or their loved one, but learning it is often the difference between surviving or not. Some health care providers are marvelously proficient at speaking Survivor, while others remain stubbornly ignorant of our language, preferring Medical Speak as a defense against our pain–and perhaps their own pain as well. [Over the years I have become more compassionate toward health care providers who–it turns out–are also human. I am trying to learn some of their dialect, too.]

Medical sociologist Art Frank refers to those who have survived serious illness as members of the “community of pain,” and like all communities, we come together across differences to make local knowledge and shared traditions, including language. I had late effects for more than a decade before I learned that term for my continued suffering post-cancer treatment on a listserv for long-term cancer survivors, and the power of just that one phrase to aid me in my journey was incredible.

Being welcomed to our communities and learning our dialects doesn’t make symptoms go away, but it does provide the comfort of being able to express painful experiences in more nuanced and precise ways, knowing we will be understood.

May we all continue to hang in there.