An Emmy for “Life, Interrupted” videos

Suleika Jaouad was part of the winning team for the Life, Interrupted video series.I’ve posted before about the amazing blog–written & video–that Suleika Jaouad has been composing for the last couple of years, “Life, Interrupted”.  This year, the video segments were nominated by the National Academy of Television Arts & Sciences for an Emmy in the News and Documentary category.  This week, the winner was announced & the team that produced the video series won!

Read more here.

The PhotoVoice Exhibit – Japanese Women Talk about the Earthquake, Tsunami & Nuclear Disasters of March 2011

This spring, the Center for Japanese Studies will host an exhibition on the experiences of Japanese women following the tsunami of March 2011.

After the Great East Japan Disasters in March 2011, women in the disaster-affected areas of northern Japan joined an ongoing project called PhotoVoice. These women, diverse in age and other socio-demographic characteristics took photographs of their lives and communities and discussed them in a small group since June 2011. Participants questioned and identified limitations and failures of the current disaster response policies and practices, as well as those concerning nuclear energy.

This special exhibit presents the photographs taken by women from the prefectures of Fukushima, Miyagi and Iwate, along with their “voices” that accompany the photographs (translated into English).

The overall goal of this PhotoVoice project is to strengthen the disaster response policies and practices in Japan (and beyond) by engaging the very women affected by the disasters in the analyses of societal conditions and collective efforts to address them.

The opening reception will be held April 9, 3-4:30, at the International Institute Gallery.  The exhibit will be on display April 9 – May 8, 2013.

Special needs and tornadoes: A Joplin story

From the CDC’s Public Health Matters blog:

It’s been almost two years since a devastating tornado ripped through the town of Joplin, Missouri, and the community continues to rebuild.  Earlier this month, we had the opportunity to visit Joplin to learn more about The Independent Living Center -Joplin (TILC)External Web Site Icon, one of seven programs chosen as a promising example of FEMA’s Whole Community Approach to emergency management.  TILC is a nonprofit organization providing a variety of servicesExternal Web Site Icon and resources to help individuals with disabilities live independently in their own homes.  Some of these services include advocacy and support, in-home care, medical equipment provision, and development of emergency preparedness plans to meet their clients’ special needs.

While in Joplin, we met 29-year-old Shandie Reed Johnson, a past client of TILC and now an employee of TILC working as an administrative assistant.  Her ability to walk is impaired due to a life-long battle with rheumatoid arthritis.  Shandie shares a firsthand account of how the 2011 tornado affected her, the lessons she has learned, and how TILC is helping her heal. . . .

How has the tornado affected your family?

May 22nd  changed our lives forever.  Apparently the first floor of our two-story home had collapsed on top of us, along with parts of other  homes and belongings.  I remember I had an artificial Christmas tree and a large, rolled-up area rug on top of me.  All around me were large boards and parts of the flooring from other houses.  It looked as if a bomb had gone off.  I don’t know how we survived it, but luckily, we did. . . .

My parents ended up renting a small two bedroom house, which is where they live now while they wait on the completion of their new home, which was donated by our church. There is not much room in the rented house, so I do a lot of “couch surfing.”  The home I am in now is not disability-friendly.

In addition to all of that, I now suffer from post-traumatic stress disorder (PTSD).  Hearing a siren will trigger a panic attack.  When I’m triggered, I go into a zombie-like mode and shut down.  The healing process has been ongoing for all of us.

Read the complete story on the CDC’s web site.

 

Life, Interrupted: A Battle With Myself

A new post form the New York Times Well blogger, Suleika Jaouad:

I used to resent the battle metaphors associated with cancer. “Keep fighting,” people would say. “You’re going to win this war,” a friend would write in an e-mail.

I could appreciate the intent behind the word, but I just couldn’t identify. Most of the time, I didn’t feel like battling at all. I was just doing what I needed to do to have a shot at surviving. Many people told me I was brave. But I didn’t feel brave. I was simply following the orders of my doctors.

A battle, to me, suggested some kind of active combat, with weapons and soldiers by my side. But most of my cancer journey has been spent lying in a hospital bed in isolation, feeling alone and defenseless, hoping for the best. Some people like to visualize chemotherapy as a surge of soldiers entering the bloodstream to wage war on the cancer cells. But this never worked for me either.

Read the complete post here.

Life, Interrupted: Medical Bills, Insurance and Uncertainty

This week, Suleika Jaouad describes her and her family’s experience with health insurance during her cancer treatment.

And no matter how closely I keep track of the bills, there are always surprises and unexpected charges. During a six-week hospitalization for intensive chemotherapy, teams of doctors trickled in and out of my hospital room every few hours: my primary oncologists, the palliative care unit, gastroenterologists, X-ray technicians, infectious disease specialists and on and on. Most of the time I was too tired, too nauseated or too looped on pain medicine to remember who was who or what they were doing in my room. But my insurance company kept track. Even though my hospitalization was covered, many of the doctors who visited me were not part of my health plan, which meant that for every time they set foot in my room I would receive a steep out-of-pocket bill. After all, what was I going to do: tell the doctor prescribing my anti-nausea medication to skip my room because he happened to be out of network?

Read the complete post here at the New York Times.

Life, Interrupted: Finding My Cancer Style

In Suleika Jaouad’s newest post, she discusses her reaction to losing her hair and how that led to other changes in how she presents herself to the world.

One year ago, almost to the day, I asked my hairdresser to cut off 16 inches of my hair. It was a pre-emptive strike. A few days later I would be admitted to the oncology unit at Mount Sinai Hospital in Manhattan to undergo chemotherapy to treat leukemia. Everyone knows that chemo takes your hair. I wanted to take control of what I could before the poison did its damage. But I left the hair salon in tears, my braids in a plastic bag.

When I was given a cancer diagnosis at the age of 22, sitting in a doctor’s office less than a mile from my childhood home, I remember watching my dad burying his face in his hands. My mom rubbed my back with her open palm. The room fell silent for 30 seconds, or maybe it was three minutes. Then I managed to blurt out two questions: Was I going to make it through this? My doctor told me that my leukemia was “high risk.” I would need to begin treatment immediately. The second thing I asked was whether I was going to lose my hair.

As I tried to prepare for my first round of chemo, I scoured the Internet, read the pamphlets my doctor had given me and paged through the cancer books that friends and relatives had dropped off at the house. I was still catching up on the basic details of my disease, its treatment and its prognosis. I had no idea how to prepare for the havoc it would wreak on my appearance — the part of the cancer experience that the world can see.

To read the complete post, click here.

Life, Interrupted: Hope Is My New Address

From the New York Times Well blog, an update from Suleika Jaouad:

I opened my eyes to find doctors peering over my hospital bed. They had some welcome news.

I had for a month been living in isolation in the bone marrow transplant unit of Memorial Sloan-Kettering Cancer Center, my only option after my diagnosis with acute myeloid leukemia last year. Now, the doctors cautioned me that while my immune system was still very weak, my brother Adam’s healthy cells were beginning to engraft in my bone marrow. I was showing signs of progress: I had transitioned from my feeding tube to solid food, I was able to walk around — slowly — without assistance, my blood counts were going in the right direction, and I no longer needed to be connected continuously to an IV machine.

It was “graduation” day. The doctors were sending me to the Hope Lodge, a halfway house sponsored by the American Cancer Society, in Midtown Manhattan. I would live there for the next three months, cared for by my boyfriend, Seamus McKiernan, who is again helping me write this column as I regain my strength.

To read the rest of the post and to watch the video, click here.

Finding a Match, and a Mission: Helping Blacks Survive Cancer

From the New York Times:

A month after his 2009 graduation from Yale Law School, Seun Adebiyi learned he had not one but two lethal blood cancers and began an odyssey to find a bone-marrow donor. Mr. Adebiyi, 28, who came to this country from Nigeria as a child, made appeals through Yale, on radio stations, in a YouTube video and even on a trip to Nigeria to ask law students to volunteer.

But finally, his doctor called, saying that a Nigerian woman in this country had donated her baby’s umbilical cord blood to a “cord-blood bank” and that the stem cells in it were a close enough match. After his own marrow — the source of his cancers — was wiped out, those cells were infused into him at Memorial Sloan Kettering Cancer Center. He has been in remission since.

Now he is trying to repay that debt, with an effort that experts say may save the lives of both Nigerians and black Americans. In February, he helped start Nigeria’s national bone-marrow registry, the first in Africa outside South Africa. He is now raising money to start a cord-blood bank there.

To read the complete story, click here.