Co-written by lead artist Elizabeth Jameson and co-creator Catherine Monahon
On silence, public spaces, and the potential for art
Introduction by Catherine Monahon, my studio assistant:
There are implicit rules we learn from a young age. For instance, in certain public spaces silence is expected. We are shushed in elevators, trains, and lines. As we grow older, the silence settles and becomes our new norm. We don’t usually strike up conversations with strangers; we do not have the emotional bandwidth, interest, or time. Oftentimes I wonder during my commute to work if anyone else on the train is depressed like me. Homesick like me. Confused about relationships, anxious about work, angry about the news… everyone looks at their phones or out the window, and most of us conform to the silence.
The waiting room of an MS clinic may be one of these spaces — a somewhat public space, full of people, where silence rules. But there is a catch. Here, in a confined space for undetermined amounts of time, wait people of all walks of life with something in common. Here are elders, young people, people of all genders and orientations, various spiritual beliefs, black, brown, white, people with different types of MS, different abilities, and different stages of progression – all united by a diagnosis. United by a diagnosis, but perhaps not by emotion or circumstance.
Within this particular silence, there are a vast array of stories waiting to be told. I believe that when people share stories it is like sharing seeds; enriching our lives, diversifying the environment, and growing something together. If we can break the silence of the waiting room these stories will germinate, creating connections between people and generating resilience as they blossom with the help of art and technology.
And on that note, I turn it back to lead artist, Elizabeth Jameson:
The Baby Chicks Waiting Room Incident of November 2015
In my first blog post, I told the story of my experience exactly one year ago in an MS waiting room. This blog was born in part due to my anger and loneliness in facing a disease which leaves me without the use of my arms and legs. My anger was not because of the disease; my anger was because while I was in that waiting room, I felt diminished. It was not just the silence, but also the video of baby animals that had been left on repeat and the fact that there was no space made to connect with others, no acknowledgment of the invisible emotional life of the waiting room.
I sense a desperate need of every person for something more, something like a sense of community. We are all in it together, sitting in this MS waiting room and experiencing what it means to be human; facing a disease that has no rhyme or reason, and life goes on. But how in the world do we deal with it?
One Year Later
Fast forward a year, to November 2016. I visited the very same waiting room, and I was disheartened again. Barely anything had changed. The only change was the video, which had been amended to include impressionistic imagery and nature scenes in addition to the baby animal sequence. The images were on a continuous loop that was so quick, you couldn’t even take the time to try and engage with the content. After seeing that video, I decided to I want to put my talent and attention to the needs of people who are like me., alone in the journey of chronic progressive disease.
Breaking the silence
During my wait, I surveyed the room, scoping out body language to see if other patients were actually looking at me or even noticing me (I’m hard to miss in my wheelchair). The silence in the waiting room is so pervasive that patients and their loved ones don’t even speak. Medical assistants shuffle through periodically, taking vital signs and introductory information before the patients see their doctors. There are no reading materials except for MS specific literature. I did not see anyone look up at the video I had been triggered by. One woman was on her phone, the others waiting in silence. No one had brought anything to read.
I did not know how to approach people: do some want to talk? Do some appreciate the silence? I took the plunge, despite the fact that it is pretty awkward being in a wheelchair and having my assistant driving me to each person directly.
I’d like to talk about three of the people who I gathered the nerve to approach.
First, an older woman across the room from me who smiled at me. I started out by asking when her appointment was, and if she had MS. She said that she was here for a consultation, because she was originally diagnosed with a nonspecific demyelinating disease. She was referred to the clinic by her primary care physician for a second opinion. She opened up to me, and was more than willing to share. We spoke briefly and then she left for her appointment.
The next person was a young gentleman, possibly in his late twenties, with his hands gently folded on his lap and his eyes half closed: he appeared to be meditating. I asked whether I could talk to him. I apologized for interrupting and asked him if he was meditating; he said he was. He proceeded to thank me profusely for noticing. I told him I had just started to explore meditation. We then spoke about what types of meditation he practices, and the new type of meditation that I am starting to practice. Then I took a big leap, and asked him how he is dealing with his MS. He told me he had progressive MS, and that he was trying to get used to his new life in a wheelchair. He thought that living with MS was hard – at times manageable and at other times, too much. He was very approachable, in fact, he was anxious to talk. I asked him, if we had the ability to record his story, would he be willing to participate? He said he would love it.
My third interaction was with a young woman nearby. We talked about MS, how we were dealing with it. We talked about family, pain, and medication. Everything seemed to flow so easily. Our conversation was warm and friendly – we exchanged information and agreed to talk again soon.
These brief interactions affirmed my belief that there is an untapped potential for connection in the waiting room.
The future of Waiting Rooms
I have always felt that it was lost time, a space where communication could happen. Now I want to start conversations with every single person waiting. I envision a waiting room culture where everyone feels acknowledged, and where patients and family members can talk about the struggles of living with illness together. My wish is that we all can learn from one another and feel more connected as a community.
The design of my most recent project was inspired in part by my experiences at Stanford Medicine X 2016. At the conference, it was a privilege to speak at length with Upali Nanda, an architect and designer who invites people to think about waiting rooms in a new way. She specializes in health care design and she encouraged me to work with her in envisioning clinical waiting rooms.
In addition to inspiration from my conversations with Upali, I also was inspired by an interactive space the folks at Medicine X created for attendees to share what they were thankful for, what they need help with, and what they can offer help with. People participated by writing their answers on large cards and displaying them. I utilize the idea of prompts on cards in my current project.
Last weekend, I had the opportunity to test my ideas for interactive art in waiting rooms during an event put on by the MS Society. I was delighted to see people excited about the project, participating with enthusiasm.
#FacingMS: an interactive installation using art and design to connect people
The following photographs depict my vision for interactive artwork that could truly “flip the wait.” Let’s transform the walls and the silence of the waiting room with installations like #FacingMS!
We had participants write a selected quote from their interviews directly on the artwork.
“The fear of the disease is the fear of the unknown. You could wake up and something else won’t work right.” – Will
“I do worry about the day I’m in a wheelchair. Walking doesn’t define me, but I feel bad for my partner, Paul.” – Mark
“I do not want to live smaller as a result of my diagnosis.” – Jessica
“You want to love your life, but you also can hate your life. It’s impossible not to feel overwhelmed.” – Elizabeth
“MS fatigue can feel like a wall coming down.” – Elsa
Three cards for three questions. “I am here today because…” “What do you want the world to know about MS?” and a blue #FacingMS card that has various unique, personal questions. In conjunction with our amazing experience at Medicine X (yet another inspiring experience from the conference) listening to Yoko K. Sen’s performance of Sound Will, we asked “What music would convey your experience with MS?”
Listen a song that embodies how MS can feel, through sound, for one person who attended the event.