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Hilary's Blog

Hughes

Hughes called me to wish me happy holidays. He has called me every December for 25 years. When I answer, we chat. He asks about my son; we talk about the weather, the ice storm in New York City or the snow in Vermont. I always send a holiday card, something cheerful with barns and cows, and I include a picture of my son.

Hughes and I met sometime in 1991. He was 54 years old at the time, the same age I am now.

That year, I had moved to New York City from Boston when I was accepted into a writer’s workshop led by Ntozake Shange at the 92nd Street Y. I got a job at a drop-in center (called the Independent Support Center (ISC)) next to Grand Central Station housed in St. Agnus church.

St. Agnus church was a place where hundreds of people came to get a meal and line up for the limited number of beds in church basements around the city that were available each night. Anyone who didn’t get a bed at a church, could stay inside at the center, but they couldn’t lay down. There was a NYC zoning ordinance that stipulated no sleeping, so people had to prop themselves up in seated positions and doze as best they could. Staff would walk around waking up people who slumped over.

ISC was a new program specifically for folks experiencing mental health challenges. It was located up two flights of stairs and in the back of the St. Agnus church, away from the crowds. It was cleaner than the main space. It had its own shower and fewer people. We didn’t hang a sign that said “mental health services,” but people knew. When I look back, I think someone had to be very brave to walk in.

Hughes was not from the south, but “southern gentleman” comes to mind with his “ma’ams” and “sirs” and general politeness. He was always neatly dressed and his bags were organized and contained, not like some others who came with garbage bags full of things they dragged from place to place. Hughes read the paper, drank coffee and talked about what was happening in the news.

I am not sure why, but people have always seemed to feel comfortable telling me personal things —hard things—and secrets. At the center, I am happy to listen; it makes me feel useful. At the very least I can sit and hold their pain with them, if only for those moments. Hughes was different. He had an impenetrable wall of silence around him and a polite smile on his face. I suppose different people have different ways of getting through the hell of being on the streets.

One day on my way to work, walking through Grand Central Station, I noticed a figure sitting on bags against a grey brick wall. I was running late and in a hurry and didn’t give it a second thought, at least not a thought more than the dozens and dozens of folks sleeping out on the street I passed every day. I saw the figure again the next day, and again, the next. A regular fixture in the same place, almost always in the same posture. I made a point after a week or so to walk a little out of my way and pass directly in front of him.

Yes, it was Hughes. He didn’t see me, his eyes were closed. His was sitting very tall, very straight, with hands loosely folded in his lap.

It hit me very hard that this was where Hughes was living. That hallway, that wall. That 3 feet by 3 feet space. His bags and his erect posture. Hours and hours, days and days, months and months.

In 1992, I was recruited to work on a pilot project started by Dr. Sam Tsemberis. We rented apartments and invited people labeled “severe and persistently mentally ill” who were living on the streets of New York City to move in. We didn’t require anyone to fill out forms or require that they receive any sort of “treatment.”

Hughes was one of the first tenants. He was particular about where he wanted to live; which neighborhoods were acceptable and which buildings. We showed him apartment after apartment and he turned them all down. I could hear myself screaming in my head, “Oh my god, take the apartment! Take the apartment!” Finally a creative realtor we knew was able to finagle a very nice apartment in a high rise building with an elevator and a reception desk — Hughes loved it and moved in.

Last week I was in New York City and stopped in to visit Hughes. He turned 77 this past summer, and this coming March, he will have been in his apartment 25 years. Hughes pointed out the pieces of furniture he still had from when he moved in: a coffee table, a side table, a dresser. And his new bed from Walmart and new television with a rabbit ear antenna the building maintenance man helped him set up. Birthday decorations his neighbors brought him in July were still hanging on the wall.

We talked about his brother and nephews, the news, our favorite Christmas movies, and his daily walk around the corner for coffee at the nearby Dunkin’ Donuts. When I left, Hughes walked me to the elevator and we hugged goodbye. The elevator opened and was full of his neighbors heading to the lobby. They all waved at Hughes. On the ride down, one of the woman behind me said to another woman, “He is such a nice man.” And another woman (who was deaf) standing to my left signed and made a heart shape with her hands —and everyone in the elevator nodded.


Alex

I am no stranger to death. My grandparents and both my parents have passed. Some of my friends’ parents have died, and a very close friend of mine lost her young son. In addition, through the years working with individuals with long histories of living on the streets, I have also experienced the loss of more people than I can count, many of whom, if not for their service providers, would have died alone and unremembered.

For me, someone dying opens doors to emotions that are uncomfortable and hard to hold: deep sadness, loss, emptiness, anger, regret… At times overwhelming and raw. At times numb and flat. And there are also great waves of love and gratitude. Love and gratitude for having spent time and for knowing the deceased, and love and gratitude for the friends and family that gather in mourning and remembrance of the loved one who has passed.

A few weeks ago, a young man I know, Alex, took his own life. The typical emotions came up, but there were also other feelings: guilt, why’s, and what if’s. Deaths brought on by cancer, or heart conditions, or old age, or even tragic accidents, feel out of the scope of my control. And while I intellectually know someone killing themselves is also out of the scope of my control, I do not feel that in my heart. I suppose guilt and questioning myself and our society for not being more or different, is a part of the grief process. But I don’t want it to be just that. I want us to do better as a society.

There is literally an epidemic of people taking their own lives in our country. Every three days in Vermont, someone kills themselves. I do not claim to know all the answers, but I do know some things. Today, however, I am not going to write about society and best practices. Today I am going to write about Alex.

I first met Alex five years ago when he applied to be a support person for my son Joshua who has significant challenges due to his autism diagnosis. Alex loved my son, and I believe my son loved Alex.

Alex was the best combination of intelligence, humor, goofiness, heart, caring for folks that were struggling, and trying to make the world a better place. He also had a “can do” attitude and willingness to try things that were a little unconventional.

It was these qualities that gave my son the opportunity to live independently in the community when he was faced with the possibility of having to live in adult foster care. Alex was part of a team that supported my son, against all conventional wisdom, to live in his own apartment. And for that, I am forever grateful. My son has been successfully living in his own apartment for almost five years. Alex was a big part of making that possibility a reality.

Not long after Alex started working with Josh, Alex reached out to me because he was looking for an internship opportunity to fulfill a requirement as part of his studies at UVM and he was very interested in Pathways Vermont. While Alex started out as an intern on our Housing First team, he quickly became an employee. Alex was deeply committed to the work we do. He had an sweet and sincere ability to connect with, and care for, not only the people we serve, but also his fellow colleagues.

This ache I have in my heart will fuel me to continue to advocate for more programs like the ones at Pathways Vermont that Alex championed. Programs that value love, respect, connection, and creating community. And I know I will continue to see Alex and his spirit everyday. I will see him in the continued successes of my son’s independent living. I will see him in the community of loving support at Pathways Vermont.


Equitable Access

My son Josh, who has autism, is a huge Stowe Gondola fan. Not riding them— watching them. Which he can do literally for hours. Recently we were up at Stowe and Josh was doing his thing, gleefully (and loudly) watching the Gondolas, while I was sitting in my car reading— when an official-looking Stowe person with “Stowe Resort” on his shirt and a fancy name tag— came up to my car.  He said he was the Stowe Gondola Manager and asked if I was with the young man watching the Gondolas. My immediate thought was “Uh oh— here it comes— the ‘you need to purchase a ticket to be here’ or ‘your son is bothering customers” comment. I quickly introduced myself and he pulled a box from behind his back: a miniature Stowe Gondola model. He handed it to me and said it was for my son because the staff had noticed how much Josh like watching the Gondola, and how often he comes to visit.

It was so sweet and unexpected. I was speechless.

If you are a parent of a child with autism, you can possibly relate to how extraordinary a moment like this is. If you live in the world with some sort of difference, in the way you look, or act, or think— in a way that “normal” society finds occasion to mock, bully, judge, discriminate or violate your rights because of fear and prejudice— you might also relate to how an ordinary act of kindness can feel extraordinary.

And there is this mad clash of gratitude and pain. Gratitude for the ordinary act of kindness, and pain for all the other times simple, everyday activities can be challenging and even heartbreaking— often having to do with equitable access. Equitable access to schools, playgrounds, housing, bathrooms, jobs, healthcare, community… and so much more.

I feel enormously lucky to be leading the team at Pathways Vermont because we believe in equitable access for every single person we meet. For our staff, clients, board, and community. It is our heartbeat.

We believe that no matter what challenges you are facing, or no matter how you live in the world that may not currently be readily understood or accepted by others, you deserve equal access. At Pathways, we advocate for the rights of people to live without stigma and discrimination and we promote civil rights, community integration, health care, affordable housing and employment for all.

There is still more work to be done, but I also believe strides are being made every day. And the miniature Gondola in my son’s apartment is just one small reminder.


Connection

Do you remember your first best friend? Your feels-like-your-long-lost-twin best friend? The one that loved the same books, laughed at the same jokes, had the same crushes that you did?

Mine was in the 7th grade. Her name was Ulrike Enders and she was German.

At the time both our families were stationed in Algeria and we both went to the International School of Algiers.

Ulrike and I were inseparable. We sat next to each other in every class, spent recess together, and slept over at each others’ houses. Together we fell in love with Elton John, ABBA and the Bay City Rollers. When Ulrike’s family went to Germany on holiday, I went with them.

Ulrike’s mom, Mrs. Enders, was warm and friendly. I have a very distinct memory of her taking Ulrike and I shopping and Mrs. Enders helping me pick out my first two-piece bathing suit.

In the foreign service, families move every couple of years. So in due time, the Enders packed up and left for their new post in Cameroon. Shortly after that, my family left Algeria too, to spend a year in Montana.

Ulrike and I wrote long letters, often, to each other. Back then there was no internet and we wouldn’t even consider an overseas phone call due to high costs. One day I received a letter from Ulrike about her mom, Mrs. Enders. There had been a freak fire in their house and Mrs. Enders had died.

The news was devastating and completely surreal to me. I felt disconnected, sad and very alone — Cameroon felt a million miles away.

Ulrike and I kept writing on and off for a few years, but our correspondence eventually petered out.

40 plus years go by, and Ulrike and I find each other and connect on Facebook.

Ulrike was at an Elton John concert recently in Frankfurt and she took a video of the now 70 year old Elton John singing Bennie and the Jets and sent it to me.

She also sent me a copy of a letter she received when her mother died. A letter she has kept for over 40 years, because it was important to her. It was a letter to Ulrike from my mother, that I didn’t know she had written. My mother, who passed away from cancer, almost 10 years ago. So it was a very strange voice from the past for me.

Here is the letter my mom wrote Ulrike:

Wednesday Febraruy 4, 1976

 

Dear Ulrike,

 

Hilary received your letter (about your mother) yesterday.

 

I was exactly your age when my own mother died. Everyone was very kind to me. Yet, as no one was feeling what I was feeling, no one really understood….I began writing after many months, about my feelings. This helped me. Still, after the numbness had gone, things were painful. Often I was mixed up and did not understand the reason for anything. I am telling you these things about myself because I so vividly remember my aloneness and hope my few words will help to widen your courage, and help you to feel so not alone.

 

Love, Mrs. Melton

Across cultures, across ages, even across time — there are so many ways in which connection is possible and important. As it was for me, Ulrike and our moms.

At Pathways Vermont, one of our core values is connection. We believe in exploring our shared human experiences. In happy times, or in the midst of the most challenging situations, we look for the thread of joy, hope, or even pain, that link us together.

Our programs are built on the value of discovering the meaningful ways we cross paths with each other. Whether you are accessing our 7-day-a-week Support Line, moving into our Soteria House, volunteering at our Community Center kitchen, meeting our intake coordinator inside an institutional setting, or signing a lease on a new apartment: we want to connect and begin to build a community of support together. In my mother’s words, we hope to “widen your courage, and help you feel so not alone.”