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There are side-effects to surviving

stethoscope-insideBee Lavender is the author of the award-winning memoir Lessons in Taxidermy: Diagnosed with cancer at age twelve and perilously pregnant at eighteen, surviving surgeries and violent accidents: Sometimes you can’t believe Bee Lavender is still alive; sometimes you think nothing could kill her. Lessons in Taxidermy is Lavender’s fierce and expressive search for truth and an elusive sense of safety. This autobiographical tale is stark and resolved, but strangely euphoric, tying together moments and memories into a frantic, delicate, and often transcendently funny account of anguish and confusion, pain and poverty, isolation and illusion. While staying conscious of the particulars of her circumstances, Lavender frames her life in the context of history, traveling, landscape, and freak show culture. Lessons in Taxidermy is apocryphal, troubling, cathartic, and important.

We interviewed Bee about her experiences to ask her what parents can do to help their children who are going through a medical crisis.

Children who have been seriously ill go to a place where they are absolutely alone and where their parents can’t follow. How can parents support their children as they face these very scary challenges?

The first and fundamental principle is simple: always tell the truth. No matter how difficult, unwieldy, or frightening, it is better by far to acknowledge what is actually happening. Yes, this is hard – especially if you are talking about painful and messy procedures, serious permanent disabilities, or the possibility of death. But even the youngest children have the capacity to understand what is happening, and developing a framework will help them cope with the process. Saying “this will hurt” is always better than pretending otherwise. Saying “we don’t know what will happen” is always better than promising a miracle that might not come.

Truth doesn’t hurt. Surgeries hurt.

In your book, you write about your ability to separate your body from your mind in an effort to deal with the pain of your cancer. Have you been able to come back to your physical self? Do you have thoughts about how parents can help their children retain that sense of self?

It is fair to say that sustained and routine trauma is not a desirable formative experience. In my particular case, I learned to compartmentalise. Pain and pleasure go in separate boxes, learning and love happen on their own. It took several years before I could even let the food on my plate touch, let alone the emotions or whatever you want to call the stuff boiling around in your brain and chest. I had to take small and incremental steps toward normal behaviour – the ability to think, yearn, fail, all at once, losing control, letting life happen, feeling it.

I still lack certain forms of empathy. I grasp that there are no hierarchies of suffering, yet I am dismissive of pain in myself and others. When my friends (or children) complain about something they find deeply important, I often catch myself thinking they should go get some real problems. Though at least I have learned to think it instead of saying it out loud.

There is no tidy way to help a kid in similar circumstances. There are side-effects to surviving.

How has being a writer helped you process your experience? Do you think parents should help their children journal (either via writing or pictures)?

From my earliest years I remember thinking that words were my friends, and putting them in a certain order to convey stories was a tremendous distraction from all manner of mayhem. From about age five or so I wrote fiction, and the activity was hugely entertaining and a much needed distraction. Other children might have a different set of needs, but I think that the desire for escape is valid and necessary.

Distraction, even obsession, can be better than therapy, when your life is organised around medical treatments. By the time I was eighteen years old I had several hundred surgical scars on my body and I would have rather stabbed myself in the eye than talk about my illness: dreary, boring, obnoxious illness! Cancer, cancer, cancer, ugh. Give me a movie, a concert, a new album to listen to, book to read…. art, literature, and politics offered solace and a way forward. For other people it might be sports, video games, knitting, whatever, just something external, something to think about other than the failures of the body.

I didn’t keep journals as a child, and never wrote directly about my illness until I was about 29. I don’t think it would have helped *me*, except to keep track of dates for later publication. In fact, I don’t think documenting the experience would have been especially healthy, because doing so would have been another way of assigning a privileged meaning. I think the most empowering thing is to learn to say “the disability is part of me, but it does not define me.”

Did you feel you had to protect your parents from your fears? Is there something they could have done to relieve some of that burden?

Yes, I wanted to protect them, and the need to do so was both explicit (I was told not to cry) and implied (being brave made it easier for everyone to play their part). I agreed with these values at the time and I still do. Life was seriously difficult for me, but my parents were there too. They had to watch me suffer, but they also had to deal with the administrative details, and pay the bills. Even now, with children of my own, I simply cannot imagine the anguish they were forced to endure. I was stoic, but my parents were heroic.

Decades later and thousands of miles away, my first thought when I have a medical appointment is how to prevent my mother worrying about me, or knowing at all. If I had one magical wish it would be to take away the pain that she suffered raising a sick kid. Both of my parents did their absolute best in a terrible situation, and asking for more – for niceties of behaviour or etiquette – is foolhardy at best.

The only way our collective burden could have been relieved was simple, and structural. My health insurance came from my mother’s job. The money to pay what the insurance didn’t cover came from the overtime both parents worked. I was literally alone, because they both had to work desperately hard – just to keep me alive.

The only thing that could have relieved our collective burden would have been universal health insurance. I believe that every citizen of a wealthy nation should have access to basic medical care. I moved to England six years ago because of the National Health Service, and I have no plans to move back home until health care reform is a reality instead of a promise. I do not want any of my loved ones to sacrifice their dreams to my illness.

Finally, medical issues force children to give up control of their bodies and their physical privacy in lots of ways. Do you have any thoughts about how parents can protect their children or give them some measure of autonomy given the reality of their medical needs?

In a purely practical sense this is an unobtainable goal. Whether you are talking about a crisis medical situation or long-term maintenance of a disability, you just can’t expect much privacy. Your body is being inspected for a reason, and the people looking are generally doing their best to help.

However, I do think there are limits. Speaking as someone with an “interesting” and rare disorder, there have been countless times when an examination seemed to be more for the prurient interest of staff than any clinical reason. Sometimes I have no choice but to cooperate, especially when using teaching hospitals. But I always make an effort to achieve at least a symbolic level of privacy.

This can be as simple as insisting on a curtain around the examination table, or an introduction to the people poking my flesh.

But privacy is more than just showing skin. It is about control, autonomy, narrative. The best thing that my parents did was allow me to own my story – to decide when and how to talk about the disease. Or not.

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