Stories of the Massachusetts General Hospital (2025)

10/06/2024

"As a child, each time I worried about small things or fidgeted when I was nervous, I was told, 'You’re acting just like your avo.' I began to internalize this, attributing my actions to personality qualities that I must have learned from my very nervous immigrant grandmother. Where others saw gentle waves, my grandmother imagined destructive tides.

These 'personality' traits evolved as I got older, worsening drastically after years of enduring trauma at home. It wasn’t until I was practically an adult that I realized that my 'personality' was severely debilitating me. I was avoiding situations that triggered anxiety, dealing with physical symptoms such as muscle tension and headaches, spiraling out of control each night as I tried to sleep, and struggling with evolving feelings of sadness and loss of interest. When I tried to reach out for help on several occasions, I was told that there can’t possibly be anything wrong with me because I was successful and keeping up with responsibilities. Indeed, on the outside, my presentation seemed flawless. But the truth was I was drowning, and no one else wanted to see it.

I was 19 years old when I was finally diagnosed with severe anxiety and mild depression. With treatment, I slowly began to cope and then flourish. I discovered my true personality and passions. There are many things that I’ve learned that I wish the younger version of me had known. While I can’t change my past, I use these experiences to improve my future and partially fuel my career aspirations.

Now I strive to make a difference and to combat stigma. One life preserver at a time."

Storyteller: Caylin Faria
Photographer: Rony Dieuseul
Editor:

07/06/2024

“Ever since I can remember, I’ve had a knot in my chest. A late-night phone call, a sudden change in plans, or a simple task would trigger a hot flash, rising heart rate, sweaty palms, stiff shoulders, and the inevitable feeling of a knot in my chest. Sometimes, the feelings would go away in a minute; other times, they stayed for days. I couldn’t quite understand what was wrong with me. I didn’t have the language or tools to share what was happening to me with my family.

When I was 19, I felt like I had hit a breaking point. I woke up one morning and couldn’t bear the pain of the knot, which on this day was accompanied by nausea, tingling in my hands and feet, and lightheadedness. I was sure I was going to die. I rushed to the hospital and told them: I think I’m having a heart attack. Test after test revealed there was no heart attack or anything close to it. A doctor whom I hadn’t seen before that day introduced herself as a psychiatrist. She explained that I was most likely having an anxiety attack—not a heart attack. She asked me if I had experienced this before and if I had ever thought about going to a psychiatrist.

On the advice of my partner, I finally set up an appointment with a psychiatrist, where I received the diagnosis that I’m still working on managing to this day: generalized anxiety disorder. Receiving this diagnosis was like finding the missing piece of a puzzle for me. It explained the constant stress and fear and, most importantly, it put a name to that knot in my chest that I’ve been carrying since I was a child.

Now, at 25, I'm still working on untying that knot but I’m fortunate enough to have the tools, resources, and a village of support that help me keep going even when this diagnosis feels like it may get the best of me.”

Storyteller: Maria Villalona
Photographer: Rony Dieuseul
Editor: Kathy May Tran

07/06/2024

“A couple of months after I started taking Prozac, I took three years off my age.

‘You lie about your age?’ said someone I was seeing a year or so later, when (in the interest of full disclosure) I told him what I’d done. ‘Seriously?’

Well, yes. In my defense, I’ll say I did this with the full support of my therapist, who was the closest thing I had to a spiritual guide. Nor was the number of years I chose to delete an arbitrary one. No, it was derived from a careful calculation of the time I had lost in my life from being depressed.

Here’s how it was: I was on the fast track to getting tenure as a college professor when my depression got so bad I had to check myself into a mental institution. I continued to teach my classes so no one would know, but I couldn’t do the research needed to get tenure.

But then I started Prozac, and for the first time was free from mental torment. I was able to get things done. I had a glimpse of what life could have been like without this illness. And I felt cheated out of all the years that I’d lost.

If I could give myself back those years, I thought, I wouldn’t feel ashamed about not being where I felt I should be in my life.

Why ashamed? Well, if depression is a weakness, which is how many people see it, then it’s shameful to be depressed. And if you don’t perform well, that’s shameful too. In my case, I felt horribly ashamed that I had failed as an academic and, at the age of 34, was unemployed and looking for contract work as a writer.

Taking off those three years did cause some difficulty. It’s like any lie – easy to start, hard to maintain. You have to remember who knows which reality.

There was also the problem of having a brother who used to be two years younger and now had to be a year older.

But mostly, I managed. And the strangest thing? I felt better about myself. Because I really had lost those years. I was happy to erase them.

Time lost, time well forgotten.”

Storyteller: Roberta Tovey
Photographer: Rony Dieuseul
Editor: Kathy May Tran

26/03/2024

CALL FOR SUBMISSIONS! "Stories of the MGH: In My Head, In My Words"
The next Stories of the Massachusetts General Hospital is coming up, and we want your stories! This miniseries is for mental health awareness and is in collaboration with the Inclusion Campaign and Dauten Center. Submit your story at bit.ly/storiesofthemgh-submissions. It should be true, personal, and 2000 characters Stories!

07/03/2024

Part 2: “The following years, we looked for mentorship and leadership opportunities for Tyler in more diverse spaces. We supported his passion for sports and cheered him on during tournaments across the state. He participated in the Joselin Diabetic Summer camp as a patient and as a peer counselor. It made us happy when in high school the Metropolitan Council for Educational Opportunity program organically allowed him the opportunity to build a group of kids who have become lifelong friends.

I was a more anxious mother to Tyler than to my biological son. As Tyler grew bigger, I warned him about assumptions that people would make because of the color of his skin and his braided hairstyle. One time, a neighbor called the police when she saw a “Black man” with a gun running in her backyard. Tyler was taking part in the traditional high school senior Mortal Combat Challenge, and the police called me to tell me to pick him up at the station. I was thankful that he was safe, but it should not have happened. The officers who had apprehended him realized that he was a big but harmless adolescent carrying a water gun. My husband’s parenting style was also different for Tyler. He pushed him hard to find summer jobs. He wanted him to learn self-reliance early to overcome future setbacks that our society would impose.

Parents often question their abilities to raise their children. No one gets training in how to do it, let alone how to do it for a child with special needs and of a different race. Did we raise Tyler with a balanced perspective on life? Or did we behave based on stereotypes about people of color? Tyler is now a 28-year-old man with a job, stable relationship, and a 2-month-old son—our first grandchild. Family and friends often tell us that we save him. I respond that, despite our shortcomings, Tyler did ok for himself. It is we who benefited from being his parents. Tyler challenged our beliefs, uncovered our blind spots, and made us better human beings.”

Storyteller: Giusy Romano-Clarke giusyromano62
Photographer: Rony Dieuseul
Editor:

23/02/2024

“Welcome to black photographer journey!

Growing up as a teenager in the 90s wasn’t always too great because of the way society labeled certain groups of people. Even though my parents tried to shield my siblings and me from how cruel the world could be, they couldn’t be everywhere with us. I dealt with name-calling and even things thrown at me while I was minding my own business. But I refused to let those people dim my light.

Instead, I shined brighter. I loved being in front of the camera—showing off my million-dollar smile, clowning around, flaunting my dance moves. I loved being behind the camera, too, like a teenage paparazzi. I had a Kodak disposable or film camera everywhere I went—hangouts with friends, basement parties, school trips, amusement parks, cookouts, end-of-year gatherings. What I was doing was capturing priceless memories, and I didn’t even know it.

As I got older, I continued taking photos as a hobby. My skill and passion increased as time went on. All I wanted was to be behind the camera, making and capturing memories.

Once I had my son, it was a wrap! He had his own personal, on-call father-paparazzi! He is a true blessing, an up-and-coming superstar, and I capture every memory in my photos. I thought I couldn’t be more obsessed with taking pictures, but now my son has new competition from his little sister. She is cute, funny, and loves to be in front of the camera—just like her dad when he was young and just like her brother.

My children shine bright like me. They make capturing memories easy. As a black photographer, I capture their smiles just like I capture the smiles of other people around me, like the storytellers of ‘Stories of the Mass General Hospital.’ I can make anyone smile. Keep smiling. If you do, I’ll capture your smile, too.”

Storyteller and photographer: Rony Dieuseul
Editor: Kathy May Tran

20/02/2024

“When the time came for me to go to college, educators in my life encouraged me to write about my trauma – my experiences, my pain – to showcase how those struggles had shaped me into someone resilient and intelligent enough to secure a spot at a prestigious institution. Even then, I remember that not sitting well with me. So, I opted to go in a different direction.

My college essay stands as a crowning achievement, not solely for securing admission, but for empowering me to narrate my story authentically. Sure, I delved into hardships, what I lacked, my yearnings, and who it made me – everything my teachers told me to write about. But I made the connection that, despite having experienced these hardships, my journey mirrored most Disney movies. Despite not always having felt like a fairytale, in a way, it still was one, and most importantly, it was mine.

College unfolded as an immensely transformative and positive experience, sparking a determination to ensure subsequent students shared a similar journey. So, for 3 of my 4 college years, I served as a Resident Assistant for first-year students, dedicating myself to leveling the playing field, particularly for those who resembled me. One of my most significant achievements then, which I continue in my work now, is reminding people who look like me that there are more stories to tell than just the ones of pain and trauma. It's not a denial of what we've been through, but rather the radical act of sharing more stories, allowing ourselves to be seen in multiple ways and challenging a restrictive narrative.

Yes, my trauma led me here. Yes, it's an inextricable part of my story. But it is not the sum of all my parts. And there’s just so much power in that.”

Storyteller: Patrice Charlot
Photographer: Rony Dieuseul
Editor: Kathy May Tran

03/01/2024

The next miniseries is approaching: "Stories of the MGH: Portraits of Black Identity" in February 2024! This is the call for submissions: WHAT'S YOUR STORY? If you work, study, or volunteer at the MGH, share your story with us to commemorate Black History Month. Stories should be personal and true as remembered. They can be funny, happy, sad, thoughtful, or anything between. Answer the Stories of the MGH call for submissions at bit.ly/storiesofthemgh-submissions.

The Stories of the MGH series is in collaboration with the MGH Belonging & Engagement office and MGH Inclusion Campaign.

17/11/2023

“I have been a volunteer at MGH since 1997. One year later, I had the opportunity to work at the MGH General Store. When I became an employee at MGH, I was so happy. It was a way for me to take care of myself without the help of the Social Security Income program for people with disabilities.

My disability was being born with one leg shorter than the other. In Vietnam, I was not able to walk upright. Thankfully, I came to the USA for a better life on July 26, 1991.

Working at the MGH General Store was the first time I got experience in customer service in the USA. I learned a lot from my managers and coworkers about how to make people happy when they come in and out of the store.

I work at the store now, and I still keep volunteering at MGH, too, because I love to see patients smile! I bring them books, magazines, and puzzles to them while they’re admitted to the hospital. I hope they feel a little better—like they are relaxing at home!

I am grateful for the opportunity to live and work in America, independently, and help other people.”

Storyteller: Annie Pham
Photographer: Rony Dieuseul
Editor: Jacqueline Nolan & Kathy May Tran

05/11/2023

Part 2/2: “However, when my own daughter was diagnosed with autism, I was scared. Even though I myself live with a disability and had compassion for teaching disabled students, the prospect of parenting a child with this disability was unfamiliar territory. My wife and I were quickly thrown into a world of various therapies, preschool individualized education programs, and, fortunately, a supportive network of other parents facing similar challenges. We are grateful that our daughter receives care at the MGH Lurie Center for Autism, and we are impressed with the caliber of research conducted by these experts.

One of the hardest 'compliments' that we have faced as her parents is, 'She's so smart. She doesn't seem autistic.' The autism researcher, author, and advocate Stephen Shore once 'If you've met one person with autism, you've met one person with autism.' Parenting a child with a hidden disability gives me a daily reminder that you never know what challenges a person is facing.

In my 25+ years at MGH in the Materials Management division, I have been in a 'behind the scenes' role, where my responsibilities impact patient care, such as maintaining the supplies to keep a clinic open or finding the CD containing a patient's exam results for a doctor to make a diagnosis. I have had the opportunity to meet diverse people throughout the hospital community, including support staff, renowned doctors, distinguished researchers, and patients. In these encounters, I have realized that we're all human and that disability touches everyone in different ways. Across all of my daily interactions, I always try to remember that disabilities are sometimes hidden and you never know what someone is dealing with, and that a small amount of kindness can go a long way towards acceptance.”

Storyteller: Jason McNutt
Photographer: Rony Dieuseul
Editor: Kathy May Tran

05/11/2023

Part 1/2: “As a city kid growing up in kind of a tough neighborhood, I learned early to cover up my own challenges with a tough exterior. When I started school in the 1980s, most people didn't understand the range of disabilities that exist. If a child struggled with development or learning, it was common to give them a negative label and less opportunity to grow. My first-grade teacher told my parents I was 'stupid.' Even though I wasn’t learning to read or write, the school continued to advance me through each grade with that negative label.

Although I struggled in school, I was fortunate that my father got me interested in martial arts. It was an area where I really excelled. My parents recognized that I was an entirely different child in martial arts classes and at home, compared to at school and how the school described me.

Ultimately, at the age of 12, through testing at Boston Children's Hospital, we discovered that I had dyslexia. That moment was a turning point for me because I was able to access instruction and accommodations that met my needs at the Landmark School, and to gain the tools that I needed to continue to succeed in life. I have continued to be involved in martial arts in various ways throughout my adult life, including teaching students in Boston community centers and teaching other people with disabilities. In my classes, I have always strived to see each person as a unique individual with potential.”

Storyteller: Jason McNutt
Photographer: Rony Dieuseul
Editor: Kathy May Tran

25/10/2023

"My identity lies at a complex intersection: I am a disabled woman from Iran. Each of these groups has been historically marginalized. Throughout my life, I struggled to navigate a world that was often inaccessible and ableist. In doing so, however, I discovered a fierce inner strength and resilience that allowed me not only to survive but also to thrive.

The emergence of the Islamic Republic in Iran in 1979 further complicated these challenges. Growing up in Iran, I often felt isolated and misunderstood. In Iran, women are forced to adhere to strict dress codes and face limitations on their freedoms, while disabled individuals struggle to access basic services and accommodations. Someone like me would have limited opportunities in education, work, and political participation. The societal and legal discrimination would have made it difficult for me to achieve my potential and live life on my own terms.

Instead, today, I am a strong woman who is also an active disability advocate. My complex identity provides a unique, nuanced perspective that is often overlooked in discussions of disability and social justice.

The work of disability advocacy can take many forms, from advocating for individual accommodations and accessibility to fighting for broader societal and political changes that will benefit the wider community. One of the most challenging aspects is dealing with ableism. This form of discrimination, rooted in stereotypes and misconceptions, can take many forms, from inaccessible physical spaces to harmful social attitudes that perpetuate the idea that disabled individuals are not capable or deserving of the same opportunities as non-disabled people.

As a disability advocate, I am a powerful force for change, working to change the norms and attitudes that contribute to ableism and discrimination. I contribute to a space where disabled individuals are seen, heard, and valued. I help create a more inclusive and equitable world for all.”

Storyteller: Zary Amirhosseini
Photographer: MGH Photo
Editor: Kathy May Tran

Stories of the Massachusetts General Hospital

10/06/2024

07/06/2024

07/06/2024

26/03/2024

07/03/2024

23/02/2024

20/02/2024

03/01/2024

17/11/2023

05/11/2023

05/11/2023

25/10/2023

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