Posts tagged Empowerment
One Moment in Time: A Patient’s Story

I want to tell you a story.

It took place during the radiation phase of my breast cancer treatments.

My radiation sessions were scheduled at the same time, every day, for six weeks. Each day I saw the same patients and the same technicians. We were all on a first name basis.  I saw the same hot chocolate-cappuccino-coffee machine, the same cheap plastic bowl of fresh apples, oranges and bananas, the same stack of well-worn out-of-date magazines, the same relatives and friends accompanying their loved ones, and the same zapping of radiation. The one thing that didn’t stay the same was our changing bodies. We were all deteriorating. Not only was my body changing from the radiation but also the deep chemically-induced menopause I was in, was severely affecting my quality of life. If you can imagine how regular menopause affects women who lose their hormones gradually over a period of years, just think how it felt to lose mine in two weeks. I was having extreme hot flashes every ten minutes, twenty-four hours a day, seven days a week, some so harsh they left me faint. Menopause can also create a depressed feeling and I felt that creeping in as well. My doctor told me that losing my hormones so fast due to chemotherapy was doing such a job on my body, it was like driving my car into a brick wall at forty miles an hour. I found his analogy validating because that’s exactly how it felt. Smash! Bang! Boom!

Just to let you know, radiation in itself is actually quite painless. Unfortunately, what happens as time wears on is the skin that’s been radiated gets burned. Sometimes it looks like a fashionable tan, sometimes it looks like a sunburn, and sometimes the skin gets so badly burned, the doctors have no option but to stop the treatments completely. That’s exactly what happened to my friend Lily. Lily and I met in the radiation waiting room while she was being treated for breast cancer. She was of Asian decent, and even though she stumbled with her broken English, and I with my Chinese, we understood each other perfectly. Just like schoolgirls, we saved seats for each other every day. We connected on many levels and as the weeks moved along, we developed a deep love and respect for each other.  One day Lily confided in me that she would no longer be coming for treatment.  She opened up her shirt and I couldn’t believe my eyes. The severity of the burns on her chest was shocking. I didn’t know if Lily’s skin was more sensitive than mine or her level of radiation stronger. What I did know was that Lily’s chest couldn’t tolerate any more and her treatments were stopped permanently. I felt terrible for the hopelessness of her situation and, selfishly, I also felt terrible for myself — I would miss her.  I made several attempts to stay in touch, but sadly Lily and I never saw each other again.

That’s not the story I want to tell you.

Another patient I met while sitting in the waiting room, day after day, was Peter.  He had prostate cancer and we soon became buddies. Peter’s treatments were affecting his hormone levels, similar in ways to mine. He was going through a male menopause of sorts, complete with hot flashes, weight gain, frequent bouts of crying, periods of insomnia, low libido and an overall lack of well-being.  He often shared his emotional and physiological changes with me in great detail because he knew I would understand. Peter and I developed quite a bond, playing pranks on each other regularly. Each afternoon, while waiting for his name to be called, he ate a banana from the fruit bowl.  Peter just loved bananas.   One day, he was late for his treatment and I noticed that there was only one banana left in the bowl.  I didn’t want anyone to grab it, so being the thoughtful prankster that I am, I snatched up that Chiquita and hid it in my pocket.  When Peter finally arrived, he ran over to the fruit bowl but alas — no banana.  His disappointment was palpable.

“What’s wrong Peter?” I asked.  “You look so sad.”

“I wanted a banana but there’s none left,” he answered.

“Awww…that’s too bad.  Well, look down here. Oh my goodness. Is this a banana in my pocket or am I just happy to see ya?”  Quickly I whipped out that banana and Peter’s face lit up. What a sight. To most people, this may have seemed like such a small thing, but those kinds of exchanges amused us to no end and it helped get us through the day.

That’s not the story I want to tell you.

We all had our own routines when it came to our radiation appointments. This was mine: I’d sign in, walk into one of five closet-like changing rooms located within arms reach of the patient’s waiting room, put on one of those terribly revealing hospital gowns and leave my clothes on the hook, praying that no one would steal them.  Of course, I really didn’t have to worry too much about that. Being 5 feet tall, my pants would look like knickers on anyone else. After that, I’d sit in the waiting room, have a cappuccino, chat with a friend, read a gossip magazine to get up-to-date with the really important issues in life, and wait for my name to be called. When I’d hear ‘Marla Lukofsky’ over the speaker, I’d be escorted into a cold room with a large radiation machine and would hoist myself up onto an even colder metal table. Then I’d slide the hospital gown down to my waist, lie there and watch the huge high-tech contraption move across the ceiling until its projected grid pattern aligned itself with the tattoos on my chest. The machine would then zoom in close, and the technician-of-the-day would run out of the room as fast as he or she could, and hide behind a five-inch-thick Plexiglas-sealed container. That got me to thinking, ‘Hey, if it’s that dangerous for them, then what am I still doing in here?’

“Are you ready, Marla?” the voice on the intercom would ask.

“Yes, I am.”

 “Okay, then. You can keep breathing, but DON’T MOVE.”

Talk about a contradiction. Then the radiation machine would let out a disturbing sound that alternated between a high-pitched squealing noise and a machine gun popping. In a minute or two it would be all over, only to be repeated several more times on other areas of my chest. Sounds pretty simple doesn’t it. They’d do their job by zapping me and I’d do mine by lying still and taking in the rays.

Each day was becoming harder than the next. I started to feel like I had nothing important to do.  In order to bring in some money and keep myself somewhat active and stimulated, I got myself a part-time job at the only place that would hire me, Tusquellas’ Fresh Fish Market. Can you imagine feeling nauseous and choosing to work in a FRESH FISH MARKET?  What was I thinking?  Talk about upsetting aromas!!! On the plus side, when I went into a huge hot flash, I’d just leave the customer in the middle of their order and jump into the walk-in freezer at the back to cool off.  Sometimes I’d come out with icicles hanging off my hair. I’m not kidding.

Every day like clockwork, while my spirits were plummeting, I’d leave work and go to my radiation sessions. The technicians would always ask me, “How are ya doing, Marla,” before we’d get started and no matter what I’d answer, they’d never say much back except for the expected platitudes.  I hate platitudes. On a regular basis I would challenge them.  “Don’t be so guarded with me or any of the other patients. We’re not going to hurt you, you know!”  I guess I made an impact because when I received my Certificate of Completion from the Comprehensive Cancer Center, there was a hand-written inscription on it saying, ‘Don’t be so guarded! All the best! Andrew and Judy.

That’s not the story I want to tell you either.

One day, while sitting on the cold slab in the radiation chamber, Andrew, my technician-du-jour, asked me how I was doing. Maybe he was expecting me to say the usual ‘I’m fine thanks and you?’ but I didn’t — not that day.

“To be quite honest Andrew, I’m awful. I work in a fish market, I smell like Tilapia, and I feel like I don’t have a purpose in my life anymore.” Then I started to cry and cry and kept crying as if I was making up for all the days that I hadn’t let myself cry. Andrew handed me a Kleenex and gently said,

“Marla, I think you do have a purpose. Maybe you just can’t see it right now.”

“What are you talking about Andrew? All I do is come in here every day stinking of fish, get zapped, glow in the dark and go home. Nothing more than that.”

"Well, I’ll tell you what I see, Marla. The other day we had a new patient. Remember? She came in with her husband, the one with the blue scarf on her head.  Well, as you know, we have to take a Polaroid picture of each new patient for our records, so that we can make sure we’re giving the right radiation to the right person.  Anyway, you and Peter were sitting together, chatting away as per usual.  Then we came into the waiting room to take that woman’s picture, but she refused to let us and started to cry.

‘No, you can’t take my picture. I’m ugly. I look terrible and I feel terrible, and I don’t want anyone to see me like this. No! You can’t take my picture.’

We explained to her that we couldn’t start her treatments until we had the Polaroid, regulations, you know.  Her husband tried to change her mind and another technician tried too, but she wouldn’t budge.  So, we left the room to re-think our strategy while she sat there still crying.  Then I saw you, Marla. You walked over to her, knelt down right in front of her, put your hands on her knees and said, ‘Hi, my name’s Marla. I couldn’t help but hear what you said about the picture, and the way you look.  I really understand some of what you feel — not all of it, because I’m not you, but I have to tell you something. Underneath my scarf, I look just like you.’

And Marla, you took off your red bandana and exposed your bald head to that woman, a total stranger.  Then you said, ‘You see?  I look just like you. And you know what else? I think you’re beautiful, and trust me, I know a beautiful woman when I see one and you…are beautiful.  I wish I had your looks. I let them take my picture and I’m nowhere near as beautiful as you. Now, if you don’t let them take your picture, then you won’t be able to start your radiation and the sooner you start it, the sooner it’ll be all over and you’ll start feeling better again.’ Well, Marla, the woman sat there for a minute, thought about what you said and blurted out, ‘OK… I’ll let you take my picture.’  As soon as she said that, we scrambled back in, snapped the shot, and got her into the radiation room.  Her husband was grateful and so were we. And now you come in here and tell me that you don’t have a purpose?  Well, all I can say is that what you did for that woman was a wonderful thing. You helped her get through a difficult time. What’s more important than that? I saw you take that banana for Peter and make him laugh. I saw you get that hot chocolate for Cheryl and get her to open up to you. Even though you feel terrible right now, you have to remind yourself that you help people…in more ways than you realize and, in my books, that’s having a purpose — a very important purpose.”

I was shocked by what Andrew had told me. I was more shocked by his total recall.

“How the hell did you know about that Andrew?” I asked. “Do you have hidden cameras everywhere?”

“Actually, yes, we do, in every room, with intercom systems. We watch and listen to everything that goes on around here.”

“Geez…if I knew that, I would’ve put on some lipstick.”

After Andrew left the room, I sat there absorbing all that he had said. He made me feel better.  He gave me a new perspective on things. You see…he took the time for me, to point out that I took the time for someone else.  It was only one moment out of our lives, one moment in time, but it gave so much and sometimes that’s all it takes to help each other get through to the next day and the day after that. Sometimes, it’s just that simple.

That’s the story I want to tell you.

Previously published in the International Journal of User-Driven Healthcare and Cell2Soul.

Marla Lukofsky is a Canadian/American veteran stand-up comedian, writer, breast cancer survivor and keynote speaker. Her voice can be heard as Good Luck Bear on The Carebear Cartoon TV series. Her writings have been published in various medical journals in North America including Cell2Soul: The Journal of Humane Medicine and the Medical Humanities, The International Journal of User-Driven Healthcare (IJUDH) as well as The Online Journal of Community and Person-Centered Dermatology (OJCPCD). Ms. Lukofsky shares her unique journey with cancer and life in the highly acclaimed show ‘I’m Still Here…and so is my Hair!’ to audiences across the Globe. She has also written her memoir by the same title.  Marla’s belief is that if she can touch even one person and have them feel they are not alone, then she has succeeded.

www.marlalukofsky.com

mmlukofsky7@aol.com

http://en.wikipedia.org/wiki/Marla_Lukofsky

Behind Locked Doors
behindlockeddoors-2.jpg

When people look at my poster, their most frequent response is, “Wow! How can I get my own records? I have always wanted to have mine!” I tell them, “Just do it! And be persistent. Even if the contents turn out to be upsetting, I doubt you will ever be sorry.”

This is the story behind how I finally received mine and what I did with them.

I had been wishing to get my hospital records for a very long time. I felt deeply that they belonged to me as they were words written about me during a hellish three-year period in my adolescence. I was certain that they would be filled with outrageous statements, and I desperately wanted to read and respond to them someday.

I was finally released from the last hospital in 1963, and it wasn't until 1978 that I began my search in earnest. During the intervening years, I had been finishing college, marrying, and raising four young children. Although I managed to keep all of those hospital experiences safely compartmentalized away so I could raise my children with warmth and kindness, believe me, the retrieval of my records was never far from the surface.

In early 1978, shortly after meeting my fantastic fellow comrades (Judi Chamberlin, Dan Fisher and David Oaks), I was inspired to start by politely writing to the directors of each of the four different hospitals where I had been locked up: Baldpate Hospital in MA, The Menninger Clinic in KS, Massachusetts Mental Health Center in MA, and Westborough State Hospital in MA. Weeks went by, and I heard nothing. I wrote again. I waited. Again, I got no response. I even considered flying to Topeka, Kansas, to storm that psychiatric barricade and demand my records in person.

Since I was then a single parent with four young children and dwindling finances, I calmed myself and talked it all over with my trusted and dear therapist, Lee. He had saved my life back in 1963 when, by chance, I first met him the night before I was sent to Westborough. He was a young resident and the only person during those three years who had looked me in the eye and smiled and was genuinely kind. He gave me hope. He told me there was nothing the matter with me that had not been caused by the abuses in the hospitals: combined insulin/ECT without anesthesia, seclusion, restraints, molestation, masses of Thorazine, etc.

After meeting with Lee from time to time over the years, in 1978, after my failed letter-writing campaign, we planned a new record-seeking strategy. He wrote to all four hospital directors. It was difficult for me to give the power over to him, but he seemed to be my last, best hope. In 1975, he had become the Commissioner of Mental Health in MA so he clearly had the power, which I was sadly lacking, and he generously used it to help me. Because of his status and powerful stationery, he heard back from everyone except Baldpate. Some of them were only a few pages of summaries, which was annoying, but when he received them he gave them to me.

Finally, during the spring of 1978, since Baldpate had ignored him, Lee made an appointment for us to drive out there.  He told them he wanted us to read the records together, and, since he had been the commissioner, I am sure they felt forced to let us come. I had been talking for months about wanting to steal my records so, on the drive out, I showed Lee that I had brought a briefcase and explained that I had every intention of stealing the pages. I wasn't sure how I would manage it, but I knew I could figure it out once there.

I still remember the day as if it were yesterday. It was a bright blue, sunny day, the trees and flowers were in full bloom, and I was feeling full of hope and confidence. When we arrived at this desolate location in the country an hour outside of Boston, it was a time-travel experience for me. I had not been there since 1961, and the big red "farmhouse" still remained, looming over the grounds. We were ushered into a small office, far from the desolate cinder-block unit where I had been subjected to the combined insulin/ECT. There were two chairs and a little table between us where the thick folder with my records sat—my huge and seemingly glowing hidden treasure! We were at first left alone together to read them, and we decided that I should start reading and then pass each page to Lee. Soon, however, every few minutes an official would nervously interrupt us by opening the door and asking if we wanted more coffee. The records were filled with atrocious, labeling and demeaning words about me, even more disgusting than I had ever anticipated. And, with growing intensity, I wanted to steal every single page from that house of horrors and report the atrocities all over the world.

Finally, after more than two hours of reading, Lee and I had a conversation about how hard they were making it for me to actually commit my theft. He said he wanted to go to the bathroom and told me to feel completely free to do whatever I wished with the papers while he was out of the room. What an advocate he was! But, at that moment I was overcome by his genuine generosity and kindness and fully aware that he might get into serious trouble if I were to steal the entire record. I simply didn't feel I could put him at risk, so when he returned from the bathroom I explained that I had slipped every other page into my briefcase. I paid special attention to picking the most egregious ones, making sure to leave enough bulk so they would not notice, and they didn’t.  We drove back to Boston. I was elated, and Lee was the good sport and true advocate that he had been for so long.

I spent many hours and weeks and months reading the pages over and over, trying to make sense of every notation, every diagnosis. Finally, I bought a box, decorated it with flowered paper, arranged the pages neatly inside, and tied it up with a pale blue satin ribbon.  I kept it on the top shelf of my bedroom closet, where it stayed for years—until October 11, 1991!

That was the date that Anita Hill was called to testify before the Senate Judiciary Committee in reference to the appointment of Clarence Thomas to the Supreme Court. She claimed he had made unwelcome sexually provocative comments to her when they worked together at the Department of Education and the EEOC.  I believed her! Anita was treated dismissively and poorly by the senators, and her treatment put me into high action. I went to my closet, took down my hospital records and proceeded to go through every single page with a fine-tooth comb. The next day, I took the pages and copied them all several times. I then cut out the pertinent, disgusting and demeaning comments and assembled them all on a huge poster board, which I had laid out on my bed.  I designed it using the typed comments, photos from my childhood, and several small sections from op-ed stories I had written which had been published in newspapers.  It took several days of moving the pieces around until I felt completely satisfied. I then shopped around and found a great radical union press, which was willing to print 1,000 copies, way back before digital. The folks at Red Sun Press in Jamaica Plain, MA, were wonderful! I felt respected, they took my poster seriously, and I was thrilled!

I then began showing, selling and giving it away at conferences.  A dear and close fellow comrade bought the first twenty copies in a true gesture of solidarity and generosity.  It was finally registered with the U.S. Copyright Office on April 25, 2007.  I mailed one to The Museum of Modern Art in New York City as someone had once told me that they keep all art which is given to them. I sent a letter of explanation, asking them to consider having a show of art by people who had been locked up in mental institutions, and they acknowledged receiving it.  A framed copy hangs in the history exhibit at SAMHSA.  I gave one to my internal medicine doctor who just recently told me that it hangs on the back of her office door. She is now a dean at Harvard Medical School so perhaps it is having a positive influence on future doctors there. Two years ago, I had three large fabric, plastic-laminated copies made for using at marches and demonstrations. One of them now hangs in the office of Digital Eyes Film.

In the end, this poster has given me a great deal of satisfaction. I feel it is my personal megaphone from the top of the Empire State Building, shouting out to the world: THIS IS WHAT HAPPENED TO ME and THIS MUST STOP!!!

Dorothy Dundas was institutionalized for three years as an adolescent in the 1960s and was labeled a “schizophrenic” and forced to undergo 40 combined insulin coma/electroshock “treatments.” She experienced and witnessed many atrocities. She believes that luck, determination, her own anger and one compassionate advocate were her best friends on the road to her ultimate survival and freedom. Through a number of op-ed pieces in The Boston Globe, Miami Herald and Detroit Free Press, she has voiced her opposition to abusive psychiatric practices. This poster, Behind Locked Doors, which she created from her hospital records, has been  used in training programs. Dorothy lives in the Boston area where she has raised four wonderful children. She has recently retired from The Crystal Lake Express - her own safe, friendly and reliable car service in which she was the sole driver for 30 years. Dorothy is also a blogger on Mad in America: Finding Resilience and Hope in the Face of Despair.

A Voice for the Vulnerable

Elaine Scarry, Harvard English professor and advocate for narrative medicine, said: “To have great pain is to have certainty; to hear that another person has pain is to have doubt.”

We can never truly know what someone else’s pain feels like, or truly understand another’s experience with illness or injury.  But we are mistaken if we think that this gives us reason not to try.

As two sophomore Nursing majors and Medical Humanities minors at Boston College, we feel a personal responsibility to give voice to stories of pain—including the suffering associated with physical, emotional, and mental illness and stress we have heard from our peers. We also feel called to elicit and validate the stories of pain which haven’t yet been told. Many suffer silently every day on campus, and our hope is to provide space for these people to share their stories and thus feel less isolated.

“Underheard HSC” (@underheard_hsc), the Instagram account we’ve launched, is dedicated to sharing anonymous short health stories and art pieces by and from college students. It aims to make stories of illness, disability, and loss in college more accessible to the students facing these challenges, to encourage those who aren’t naturally inclined to write about their experiences to share their stories, and to help those who haven’t experienced such challenges to join in conversations about health and illness with those around them.

In college, there is great stigma around diseases or injuries that are considered unusual in our age group. We are expected to be young, strong, and resilient to whatever comes our way. This presumption of healthiness makes it challenging for those who undergo debilitating illnesses to express themselves. When these experiences are under-discussed, it leads to misunderstandings about the reality of being sick, and about how to best respond to and care for those around us who are experiencing these challenges. For this reason, we are particularly interested in reaching college students through our work as interns at Health Story Collaborative.

Our hope is that Underheard HSC becomes a space where young people feel less alone in their pain and comfortable enough to submit quotes or short stories about their own health.

Each of us has or will deal with health challenges in our lifetime. It’s time to start talking about it.  By taking the time to listen to and express care for the stories of our peers, we will not only be showing them kindness, but we will also begin to make space for a kind of storytelling which can lead to emotional healing. Our greatest ambition is to inspire better communication and deeper human connection. We hope that this platform welcomes students to share and serves to validate and honor every health story.

Supporting unique projects and starting new conversations can sometimes be scary, but the barriers to discussing the difficulties of illness which we have comfortably hidden behind until now are the very reason we must take a leap and open our minds to the infinite stories of illness and pain existing around us.  Please join us in taking a small but important step in showing our peers that we care: follow @underheard_hsc on Instagram.

For questions or to submit a story, please email Evelyn and Heena at hscinterns@gmail.com.

Heena Nissaraly is a sophomore at Boston College majoring in Nursing and minoring in Medical Humanities. She aims to become an empathic nurse specialized in anesthesia or hospice care, and hopes to eventually improve healthcare in Madagascar.

Evelyn Caty is a sophomore at Boston College majoring in Nursing and minoring in Medical Humanities.  She discovered for herself the utter inexpressibility of pain when she suffered from undiagnosed back pain for many years, and she hopes to use this knowledge to encourage her peers struggling with health challenges to begin healing through the telling of their own stories. She, too, hopes to use her passion for the medical humanities and for storytelling to become a compassionate and effective nurse.