Posts Tagged ‘changes’

The Body-Biography Connection

04.14.2013

Who are we? What makes our lives what they are?

These are some of the essential questions of our humanity.

Some answers to this question place a lot of emphasis on free will and merit, that our lives are largely the result of our deliberate action and inherited talent. Other answers emphasize the social forces that come into play, like poverty and access to education, that shape our life chances.

I had been heavily steeped in these sort of debates, but these conversations did little to prepare me for cancer.

When we fall ill, there is no escaping the profound connection between our bodies and our biographies. Social scientists Anselm Strauss and Jennifer Corbin illustrated this body-biography connection in different illness scenarios:

body-biography

The dashed line represent an individual’s unfolding life story and the solid line represents the body’s path, both over time. The top diagram shows a chronic illness situation, with the body having its ups and downs, the biography dipping sometimes and holding steady others. The second diagram shows sudden catastrophic illness, with both the body and biography taking a drastic, irrecoverable dive. The last shows an acute illness and recovery, with the body and biography in sync.

I have been thinking of what the picture of my body-biography would look like. I think I would need to have different color lines for the different subplots in my biography; some aspects of my life have recovered better than others. It’s that very disconnect that can make day-to-day life uncomfortable: my external body looks recovered (well, with my clothes on anyway), but my energy and psyche are not back to their baseline.

This past week, my feeling of returning to my old biographical path got a boost.

As many of you know, I am a professor. One of the great parts of my job is that I get to have a sabbatical now and again. I haven’t yet had one in my career, and had really looked forward to taking my family abroad for some stretch of time. Travel has always been a great learning experience for me, and I was excited to share that with my children.

Things have fallen into place: my sabbatical request was granted, the visiting scholar fellowship came through, and we are off to Israel for a couple of months next Fall. There is still a lot to be worked out, but what a delightful disruption this will be.

It has me hopeful that, someday, my biography will feel like it’s mine again, like I am authoring the story and not simply having to maintain a sense of myself in the face of the loss of illness. This is a big first step.

 

 

Tags: , , , , , , , , ,
Posted in Survivorship | 1 Comment »

Lance Armstrong, Susan Komen, and Me

01.20.2013

I have had variations on the following conversation ever since I finished treatment:

convo

 

I know this does not make me popular. I know some of you reading this find me coarse and unnecessarily harsh.

But you how no idea how much pressure there is to be inspiring after cancer.

Perhaps if my initiation into CancerLand had not involved losing somebody dear to me, I may have taken up this mantle and done my best to own the Heroic Survivor story.

But I came in to my diagnosis with the rawness of losing my brother, lending me a take no prisoners attitude against cancer.

I always wanted to know the goriest details. I had no romance for this experience. My oncologist marveled about me early on in my treatment, “You have no denial mechanism.”

So what does all this have to do with two of the most famous cancer patients of our day, Lance Armstrong and Susan Komen?

Like my brother, Susan Komen died at a young age. Her sister Nancy Brinker famously promised™ to help put an end to breast cancer.

I empathize greatly with the young Nancy. I know firsthand the impotence we feel as we watch somebody we love die. I understand the appeal that her organization holds, particularly for those left behind who want to do something in the wake of so much helplessness.

In becoming a legend, Susan Komen ceased to be a full person. Instead she became a symbol for her sister’s wish. Who knows what Susie was really like, since her persona has been carefully crafted by her surviving sister. (Twitter is haunted by a ghost who begs to differ with Nancy’s account of her love of pink and shopping).

Whatever the truth once was, Susan Komen has become the Noble Patient who gave her sister’s life Greater Purpose.

Then there is Lance Armstrong. Like Susan Komen, he was diagnosed with cancer at a young age. Like Susan Komen, he faced Stage 4 cancer. He not only managed to achieve remission, he became a paragon of health, winning the Tour de France an astonishing seven times.

Lance Armstrong became a legend. He beat the unbeatable, the Ultimate Survivor, becoming an inspiration to many who donned yellow bracelets and hoped to be half as lucky as he.

Many of these same people felt betrayed this past week as Lance finally admitted to doping to bolster his performance.

I was not among them.

Personally, I had long seen the limitation in his story as an exemplar: testicular cancer is one of the few cancers that is reversible at Stage 4. But details like that don’t matter in hagiography.

So while I am grateful to Livestrong for drawing attention to survivorship as a phase of cancer with its own needs for medical attention and social support, I am not heartbroken to learn that Lance’s feet are made of clay.

Lance’s legend, like sweet Susie’s, has put undue burden on plain folks like myself whose path to recovery is neither straightforward, triumphant, or full of Hallmark Channel Movie inspiration. (My friend Xeni wryly calls the saccharine survivor genre “cancer porn.”)

Lance, it turns out, is all too real. I am sure Susie was too. Lord knows her sister Nancy is.

So, Well-Meaning People, this is the answer to your question:

My life was rich before cancer took my brother from everyone who loved him.

I had gratitude before I had to go through almost two years of devastating treatments from which I am still experiencing side-effects, social, emotional, financial, and physical.

Am I humbled by my friends’ love for me? Absolutely.

Have I redoubled my commitments to be there for others in their time of need? Undoubtedly.

But, really, Well-Meaning People. This is just a deepening of what already existed for me.

If cancer were eradicated tomorrow, life would still provide plenty of adversity to remind us about what counts.

 

Tags: , , , , , , , , , , , ,
Posted in Survivorship | 19 Comments »

Mortality Acting Out

11.11.2012

What do Walter White and General Patraeus have in common?

Aside from being white American men of a certain age, maybe not much.

But they do both have a cancer diagnosis.

Does this explain the General’s recent revelation that, after a 38 year marriage and while holding a position vulnerable to blackmail, he has been carrying on an affair, perhaps even with two women at once?

I do not generally engage in the gossipy side of news, but when I found out that, beyond the scandalous headlines, Patraeus is facing a cancer diagnosis, I could not help but wonder if the two were related.

Since my brother’s diagnosis over 7 years ago, I have witnessed and experienced firsthand numerous instances of what I have come to call Mortality Acting Out. As I explained on twitter this morning:

Since becoming a patient myself, I have used my anthropological skills to explore CancerWorld and document instances of Mortality Acting Out. I have heard stories about sudden affairs after longterm monogamy, increased promiscuity, quitting stable jobs, breaking off friendships, and reckless spending. It’s like a midlife crisis on steroids.

Do you have a story to share? You can add it in the comments section or email me at babe[at]chemobabe[dot]com. I will write a follow up post on this topic in the coming weeks.

Tags: , , , , ,
Posted in End of Life, Survivorship | 1 Comment »

Not Normal

09.30.2012

Institutions in this world inadvertently carve out an imagined life of the people they serve. It’s like the negative space in a painting or photograph: what isn’t there can communicate as loudly as what actually is there.

In my non-blogging life, I am an educator. I started my career as a public high school teacher. I quickly saw how events like Back-to-School Night assumed parents had lives that permitted a couple of free hours on a weekday evening, with the transportation, childcare, and schedule that would allow for this to make sense.

I am used to institutions and society making false assumptions about me. Some of my very early awkward moments involved being in the grocery store and having well-meaning adults ask me what Santa was going to bring me for Christmas. (I am Jewish and have never celebrated Christmas.)

This is not an indictment of society. We have to have some baseline assumptions about how the world works in order to function. To do otherwise can be paralyzing as you try to account for every circumstance. When you are a part of a group that represents less than 2% of the population, your experience may not factor in for many folks.

I find myself in a new invisible minority as I am dealing with recovery, one whose reality is not part of the imagined world of many institutions I encounter.

To play on the tagline of my blog, I often feel like hell, but I don’t usually look like it.

It is hard for people to imagine the careful strategizing that goes into allocating my very finite, very uncertain time and energy. I have anywhere from 8 to 12 good hours a day, and in that, I must attend to my health, my family, my job, and hopefully, some of my important relationships.

It’s the usual working parent juggling act, only performed on a tightrope.

As a result, I have learned to say no to things. I have become extremely discriminating about commitments, making sure they serve important goals before agreeing to them.

My work folks mostly seem to understand. My family mostly seems to understand.

The place I have had the hardest time is in parent communities.

Even before I was done with treatment, I was approached by a PTA president asking me to volunteer for something. I responded quite directly (perhaps curtly — I don’t remember — thank you, chemobrain), explaining that this would not be possible right now and most likely not for some time.

The requests do not end, and for the most part, I have gotten over the guilt of having to beg off.

But then today, I ended up in a parent meeting that was really not a good use of my time. I had originally intended to forgo it –– it was a 3 hour meeting –– but had been told directly about its importance. So I skipped my Sunday morning exercise, planned to delay my errands, and made room in my calendar to attend, not entirely certain how everything else was going to get done.

As the content of the meeting and its irrelevance to me became apparent, I felt myself fuming. I tried hard to talk myself down: They have no idea of the energy calculus that goes into every choice. This might actually have a lot of good if you had the time and energy for it.

The best I could do initially to contain the belligerence burbling inside of me was to avoid eye contact, look at my phone, and just kind of shut down. I quickly realized that whatever good this conversation had to offer would be lost on me.

At the most convenient moment, I made my exit.

On the way out, I caught up with one of the organizers. I tried hard to be a mature grown up, but all my buttons about recovery and struggling to keep up, let alone add in a 3 hour parent meeting, had been pushed hard.

With perhaps a little too much desperation, I explained my situation. I explained that my schedule is a zero sum game, that there are no extra hours to be squeezed out of a day by sacrificing sleep. The time I have is the time I have, and its often less than I think. I explained that, in the future, I need to get a full agenda so I can come for the most relevant parts.

I am not upset at the organizers. They did not mean to put me out, and were only kind and compassionate once I explained my limitations. I am not upset at the other parents. I am coming to believe that, no matter how empathetic people are, our imperfect humanity limits our ability to fully imagine other people’s circumstances. In the end, this organization assumes families have healthy parents whose Sunday mornings are free.

And, as of now, that is not my case.

 

Tags: , , , , , , , , , ,
Posted in Survivorship | 10 Comments »

Rethinking Who Shall Live and Who Shall Die

09.24.2012

The full version of this post is available on the Jewish parenting website, kveller.com. Click through to read the whole thing.

In 2006, my 35-year-old stepbrother was diagnosed with advanced metastatic prostate cancer. Jeremy faced his disease with tremendous grace and humor.

He died less than two years later.

His death was devastating for me. Although we had different biological parents, we became brother and sister when we were both just 2 years old. Only three months separated us, and some of my fondest childhood memories involve our make believe games and mischief together.

 

 

When Jer was hospitalized leading up to his diagnosis, I went to see him. For a few months prior to that, we had argued about something trivial. I wanted to tell him how silly the whole thing was and ask his forgiveness. Tearfully, I apologized.

With my arms around him, my voice shaking, I said, “I just need you to know this. I am me because you are you.”

“Me too,” he said, and gave me a squeeze.

This moment was bookended by another heart-to-heart exchange that happened right before he died. This time, Jeremy, frail and in pain, initiated the conversation.

He spoke slowly. “I want you to know what you have meant to me. When I think of you, I think of comfort, acceptance, and love.”

My grief was great when he died.

Read the rest here…

Tags: , , , , , ,
Posted in End of Life, Survivorship | 3 Comments »