Tuesday, April 19, 2011

Op Ed: Balancing Budgets and Values

Around March 29, simultaneous articles in the JTA, The Forward, and The New York Jewish Week, were published that all basically told the same story: Marla Gilson, a Jewish professional with whom I have worked, was fired from her job while she was undergoing treatment for leukemia, because she was sick and would not be able to work for several months as she headed toward a bone marrow transplant.

I was shocked by the injustices enumerated in these articles. Then, shock turned into a lot of conflicting, messy feelings. I couldn't fall asleep that night and stayed up cleaning my apartment, organizing books and dvds, and doing basically anything to distract myself from the overwhelming feelings of sympathy, anxiety, and disappointment I was having. Because reading those articles was as if someone had taken some of my worst fears and anxieties and written them down. As someone in such a similar position, getting ready to work in the Jewish community for what I hope will be a long lifetime and having just worked on some personnel issues for the organization I serve on its board of directors, it hit close to home in every possible way, and I felt sick over the situation.

At some point in the middle of the night, I sat down to try to do some writing to sort out the surging emotions and thoughts. The next morning, I called the author of the JTA piece to explain the depth of my connection to this story, and told him that I'd like to write an opinion piece on the issue. He graciously helped me figure out what that might look like, and on April 10, the JTA published the following op-ed:

Op-Ed: Balancing budgets and values

WASHINGTON (JTA) -- The egregious treatment of Marla Gilson by her employers, the Association of Jewish Aging Services, in the wake of her cancer diagnosis struck some deeply personal notes with me. I am a colleague of Marla's; a Jewish communal professional; a board member of a Jewish organization; and a person with cancer facing a bone marrow transplant and extended medical leave from my job in the coming months.

Through my nearly five years in and out of treatment, my employers -- first the Religious Action Center of Reform Judaism and now the National Council of Jewish Women -- have been shining examples of Jewish organizations guided by progressive and Jewish values. Both organizations have chosen to exercise the values they espouse: supporting me through a difficult experience without wavering in their commitment to their own missions.

These commitments have manifested in my supervisors working closely with me to maximize the times in which I am able to work the long and full hours of a Washington lobbyist, and accommodating with grace those times when my schedule requires more flexibility. These reasonable accommodations have allowed me to continue to do the meaningful and effective work that advances the organizational mission. Working to advance causes that I believe in, on behalf of organizations that inspire me, motivates me to fight through my illness and ensures that I can continue to earn the livelihood and benefits upon which my life depends.

My experience also has given me a great deal to consider as a person serving on the board of directors of a Jewish organization. With Passover approaching, too many stories -- those published in major community papers and those shared over coffee or lunch with colleagues -- remind me that we in the Jewish community sometimes are each other’s Pharaohs. To honor the freedom for which our ancestors struggled, those of us in a position of power over the livelihoods of others must be radically just. I try to be mindful of the core principles that should inform how we, tasked with the sacred responsibility of governance and direction of Jewish communal organizations, must act.

We are instructed by the prophet Isaiah to be an "or l'goyim," a light unto the nations. To me, this is a call to both individuals and our community to model the highest ideals in the ethical treatment of our fellow human beings and our world. We have to make our employment standards even higher than those established by our country's civil rights laws. We must protect workers when they become ill, regardless of whether Jewish communal institutions are required to adhere to, or are exempted from, those laws.

We must reject the false dichotomy that argues that an organization can either treat its employees with dignity and compensate them appropriately, or it can thrive financially and otherwise. Indeed, the former is required to accomplish the latter. Jewish organizations must strive to be better than the dangerous race-to-the-bottom-line workplace practices of too many Jewish and non-Jewish employers, private and public, that the current political climate has yielded and the current economic climate has excused.

In my work at the Religious Action Center of Reform Judaism and the National Council of Jewish Women, I have learned that there is power in organizing, in advocating and in asserting Jewish values. Those values should shape our communal institutions, guide their missions and define their employment practices.

Let us be thankful for the many wonderful employers in our community who show us that it is possible to balance our budgets and our values.

(Elissa Froman is a senior legislative associate at the National Council of Jewish Women in Washington.)

I know that publishing this piece is unlikely to help Marla's situation, but it did help me. Writing it was a very cathartic experience, particularly mid-radiation, when ones voice is taken away in so many ways. I wanted to share it with all of you, as I continue to explore the meta-theme of work/life/cancer balance, here on SWHAW.

Saturday, April 9, 2011

Shades of Grey

I didn't have a blog when I did my first round of radiation. It was the summer of 2007, on the heels of my first round of chemotherapy, and that combination of treatment at GW succeeded in getting the cancer into a remission for a year. But it was also a terrible, and I dare say traumatic, experience. If I'd had a blog then, I might have been too raw to post anything about it - the early parts of the process felt so violating.

The first appointment to prepare for radiation is a grueling experience. I don't know that my experience was typical, but here is a brief summation of how it went. In order to ensure the precise positioning of the radiation beams, you must lay perfectly still for a painfully long amount of time on the machine while techs you've only just met literally poke and prod you, shifting you into the correct position. They then mark your body with permanent marker, drawing huge Xs, and outlining the radiation fields, until your body looks like a treasure map. In the center of the Xs, they put a drop of ink, then needle in a small, permanent tattoo, marking the spot where the laser must align. To cap off this already highly invasive and painful experience, they start snapping digital photos of your now bleeding, inked, Sharpied - and perhaps I neglected to mention - naked, body for their records, lest they need to know how to position you in the future. All of this while you are not allowed to move.

The first time that I had to have this initial appointment, no one walked me through the process and there was no forewarning before the tattooing. I ran out of the room sobbing, into the small and very comforting arms of my friend Gwen who was waiting outside the room.

Following this appointment, I had four weeks of daily 8:30 am radiation treatments in which they administered a high volume of grey to my chest and neck where there was still active cancer at the time. My appointments, followed by full days of work, were tough and exhausting - to say nothing of moving apartments and applying for and getting a new job during that month as well - but nothing rivaled the difficulty of that initial, terrible appointment.

It's an experience that has stuck with me: an unfortunately memorable low-point in the larger cancer experience. In the interim, I have thought often about how I might have felt empowered with a little more information and self-advocacy - especially about the tattooing process, a particular sticking point (pun intended) for me.

So recently, when my doctor decided that a course of radiation was the next step in my treatment plan before the bone marrow transplant, I reluctantly resigned myself to repeating the whole process, one which, in the interim 3+ years had become both a survival point-of-pride and had calcified into a small bit of trauma that has stayed with me.

When I went in for my consult with the radiation oncologist at Georgetown, I knew what questions to ask and what requests to make to try to improve upon the process for me. I asked for an alternative to tattooing, explaining my cultural and familial sensitivities. The staff could not have been more accommodating, immediately bringing the right person into the room, who presented the possibility of an alternative: Sharpied dots covered by a tegaderm, in lieu of permanent tattoos, which would guide the radiation beams. They walked me through the full process and answered all of my many questions. I was an ideal patient self-advocate. I felt empowered to make the choice about the tattoos and felt that I knew what to expect.

I again brought a supportive friend with me for that initial poking, prodding, using-my-body-as-a-sketch-pad, tattooing, photographing, appointment. I spoke up, met the techs in advance, and made the game-time decision to proceed with new tattoos for the three radiation fields (for an ultimate total of lucky 13), realizing that the challenge of maintaining the tegaderm for a full month and the potential toxicity of the radiation beam going through the plastic, outweighed the anxiety about having new tattoos. In short, the medical techs, doctors and nurses did everything right. I did everything right.

But the appointment was as miserable an experience as one almost four years prior, and ended the same way: with me bawling in the changing room with a friend.

In reflecting on this, I think that my take-away from the experience is that there are elements of treatment that are just black and white. They are painful and hard, and outside of my control. There's no happy twist to put on it, no way to make the medical procedure itself feel any better.

But I can still try to insert the shades of gray by mining the meaning and inspiration that comes from such a low point. I can try to insert the shades of gray by finding something to strengthen me and develop my character, during these next four weeks of daily treatments. I'll keep you posted on what I find.