Awake

By Nicole Ferraro January 2012

I blinked my eyes open. Early morning sunlight sneaked through the blinds on my window, casting a glow on the mess on my floor. Sitting up, I saw my bedroom in complete disarray. There were ripped Hefty bags and stuffed animals spanning twenty-four years strewn across my rug. My room looked like the scene of a barnyard massacre. Looking under my covers, I discovered I was clutching a giant pastel-blue stuffed bunny I’d received as an Easter gift when I was twelve. I could only assume I had spent hours in frantic search of this toy, tearing through our storage areas until I located it. I didn’t remember doing any of that, couldn’t remember the evening at all. But I never could when I was on Ambien. Groggy and confused, I tossed my comforter to the side and started to clean up the mess.

Insomnia had been a part of who I was for most of my life. As an adolescent growing up in Whitestone, Queens, I spent countless nights in my twin bed in the attic staring up at the ceiling, or watching the time on the cable box, waiting for morning. I tried distracting my mind, [...] continue the story

The Talking Treatment

Joshua Kors is an investigative reporter for The Nation, where he covers health issues. He is the winner of the National Magazine Award, George Polk Award, IRE Award, the National Press Club’s Hume Award, the Mental Health Media Award and many others. His reporting on health issues has been featured on PBS, CNN and the BBC. He also collaborated with ABC News’ Bob Woodruff on “World News Tonight” and “Nightline” investigations, part of a series on health issues in the military, which won the Peabody Award.

He has written extensively about his own epilepsy. The following article was completed in May 2003, as his master’s thesis for the Columbia School of Journalism. This version has been updated to include reporting on his epilepsy experience in the 8 years since its original publication to October 2011. ♦ ♦ ♦ May 2003 The Talking Treatment Looking at a New Approach to Epilepsy  By Joshua Kors

Even today I have a hard time talking about my epilepsy.

Though it’s been 11 years since my first seizure, five years since I last saw the inside of an ambulance, I still feel my stomach constrict when the topic comes up.

There are reasons, I suppose. In a sheltered life lived in the suburbs, epilepsy [...] continue the story

When A Doctor Becomes A Patient

By Dr. Jennifer Kelly February 12, 2012

I was jogging one day while on a business trip in LA and collapsed during the run. Within hours, I was at the hospital at UCLA Medical Center on a gurney headed for a CT scan of my abdominal cavity. I remember telling the ER physicians that I was a doctor and recommending my own course of action. As my advice to the ER doctors went largely ignored, I realized, at that moment, that being a doctor myself really didn’t matter.

I wasn’t a doctor anymore. I was a patient.

That was almost a year ago. At the time, I recalled that The Archives of Internal Medicine had published a much-discussed study that revealed doctors might recommend different treatments for their patients than they would for themselves. They were far more likely to prescribe for patients a potentially life-saving treatment with severe side effects than they were to pick that treatment for themselves. Yes, doctors were much more willing to risk their patients’ lives than their own; they were much more willing to gamble with their patients’ lives than their own.

Understandably, people are worried that these findings mean doctors know something they’re not telling [...] continue the story

Back on the floor

Feb 19, 2011

An amazing and heart warming story of hope in Haiti. Watch George, a 28 year old dancer, as he regains his life after he was severly injured in the earthquake and following a long rehabilitation process in Israel and Haiti.

Kay’s Story

It’s been almost a year since my friend Kay and I had our car accident. We were only two years out of college and had just finished work. Both of our families lived far away so we were “it” for each other. We carpooled often, and that day was her turn to drive. It could have just as easily been me behind the wheel. The light turned green, and we started to cross the intersection. A driver was texting on his phone, ran the red light, and smashed into our car. I have no memory of what happened after that.

People tell me that Kay and I were pinned in the car, and that it took a while for the paramedics to get us to the ER. Kay was in critical condition with a severe head injury, her heart stopped several times, and they had to perform CPR on her.  We both hadgone into a coma.

Although I eventually woke up, Kay suffered severe brain damage. For days, doctors did everything they could to keep her alive – breathing machines, stomach tubes, and all the other “extraordinary measures.”  When her family finally arrived and found her advance medical directives days later, they [...] continue the story

What does “palliative care” feel like?

It’s hard to imagine what a palliative care environment is like unless your family has experienced a loved one dying in one.

Almost eleven years ago, my 89 year old mother was dying of lung cancer. Fortunately, the almost five-year course of the disease had left her mostly symptom- and pain-free. But, about a month before she died, my mom suffered a nasty fall. After a day or so of hospital tests her (very wise) physician told us, “the disease has spread to her brain; there’s nothing more we can do. I suggest we transfer her to hospice.”

Startling, but not unexpected, news.

We talked with my mother about the transfer. She was calm and knew it was for the best.

I don’t remember what I was expecting when we accompanied my mother to the hospice facility, but it certainly wasn’t the kind of vibrant atmosphere we found there.

After all, death is supposed to be solemn and foreboding.

But not here. Here, families were sitting in a spacious greatroom, watching TV, playing games and laughing. There were kids around. The staff was upbeat and engaging.

We were shown to my mother’s room and encouraged to visit any time, day or night. A staff nurse reassured us [...] continue the story

Cancer Can’t LOVE Like This

Cancer Survivor: Daniel Stolfi Diagnosis: Non-Hodgkin’s lymphoma Date of Treatment – March 2008-March 2010 Relation: Girlfriend

I don’t know how to put this. Long story short – I found out Daniel was sick a month into his treatment. I was devastated. It took me days to call him and then I finally manned up to it. Once we talked, our relationship blossomed over time. Dan and I know each other from theatre school (2002). Daniel’s illness shook our group of friends from University greatly. All were incredibly supportive and loving, but there was something inside my heart that wanted to be by his side. To this day, I have no idea what it was, but now he’s my love and I’m so blessed to have him – everyday.

I spent two years being a part of something very scary, sad and painful. It was hard to watch someone be so sick. I felt helpless and unsure of what to do at times. I questioned his illness, I cried a lot, I was frustrated, and I wanted answers. It brings tears to my eyes to remember how hard it was to know that I couldn’t really do anything to take the pain away.

 

Then, I finally realized [...] continue the story

How Patrick Swayze died: Why we should care

By Barron H. Lerner, MD

When I finished my book on famous patients, the most common question I received was “Are the stories of sick celebrities really relevant to other patients?” My answer was that yes, with some caveats, these experiences are well-worth knowing.

The same can be said for the story of Patrick Swayze’s terminal pancreatic cancer, which has now been told by his widow, actress Lisa Niemi Swayze, in a new book, “Worth Fighting For: Love, Loss and Moving Forward.” Patrick Swayze, a dancer and actor best known for his roles in the films “Dirty Dancing” and “Ghost,” was diagnosed in January 2008 and died of the disease in September 2009 at the age of 57. He was originally told he would live only a few months.

First, the caveats. Like most celebrities, Swayze had the means, as his wife says, to “think outside the box.” He enrolled in a clinical trial at Stanford University, traveling regularly to Palo Alto from Los Angeles for experimental chemotherapy. Swayze also was a VIP patient, getting first-class attention from top doctors and hospital staffs. Most patients experience greater hurdles.

Nor should pancreatic cancer patients who read “Worth Fighting For” assume that they, like Swayze, can [...] continue the story

ArtAids Foundation present You Are Not Alone

The Fundació Joan Miró, the Museo de Arte Contemporànea, Vigo (MARCO) and the ArtAids Foundation present You Are Not Alone, an exhibition curated by Hilde Teerlinck, director of FRAC Nord-Pas de Calais/Dunkerque and Irene Aristizábal. The exhibition has the support and involves the collaboration of Mr Han Nefkens and is sponsored by Fundació Banc Sabadell.

You are not alone was intended to prompt reflection on the discrimination and stigmatisation to which, even today, AIDS sufferers are subject. Although medical advances have increased the expectancy and quality of life of sufferers, at least in the developed world, this progress has not been reflected in a reduction in the social rejection they experience.

In You are not alone, 14 artists from around the world helped to fight stigmatisation by reappraising the causes, consequences and current context of Aids as well as the ways of fighting it.

The ArtAids Foundation had produced works specifically designed for the exhibition by nine internationally acclaimed artists whose work does not generally approach the subject of Aids. The selected artists were: Deimantas Narkevicius (Lithuania), Latifa Echakhck (Morocco), Danh Vo (Denmark/Vietnam), Christodoulos Panayiotou (Cyprus), Lorena Zilleruelo (Chile), Lucy & Jorge Orta (UK and Argentina), Antoni Miralda (Spain) and Elmgreen & Dragset [...] continue the story

Sleep – Is It Overrated or Am I Just Stubborn?

By Soania Mathur

Well here I am, 3:40 AM, up and out of the warmth of my bed – yet again. It’s been years of sleep issues of every sort. Sometimes it’s initial insomnia where I’ve spent countless hours staring into the darkness, reading into every shadow, tossing and turning, trying to find a comfortable position, trying not to wake my husband, trying not to look at the clock which seems to mock my difficulty. Other nights I do fall asleep, either because I haven’t truly slept in literally days or because I’ve given in and actually taken yet another pill, this one designed to make me sleep for a few precious hours. I don’t often do this, mostly due to my own stubbornness, the desire to will my body to do what it’s supposed to do without the need for something outside of me to do the job. This obstinate stand usually frustrates my husband and my oldest daughter whose plea “Mama, what’s one more pill especially if it helps?” makes complete logical sense. Yet to me that one little pill (or the three it takes now) represents yet another way this disease has taken away my ability to control [...] continue the story