Everything Has Changed

Life Altering Health Care Experiences in 21st Century USA

Curatorial Statement

I have lived with severe knee damage since I was a teenager. The pain became more debilitating over time, and enduring it shaped my character. For years, I put commas and periods in my life where they didn’t need to be.

Pain is a cruel and brutal teacher. It makes you cautious; it makes you crave predictability. And sometimes it just kills you.

In the fall of 2018, with health insurance available in recent years through the ACA, I was able to get two full knee replacements. Successful surgeries have reshaped my life in ways that are still becoming clear to me.

Now the pain is gone, and I am unlearning habits of a lifetime.

This exhibit was inspired by my gratitude for a changed life, and my hope that we work for a brighter future with universal, accessible, affordable quality health care.

Gretchen Hasse, Curator
September 2019

SVISA

Society of Visually Impaired Sound Artists
Live Music at Opening Reception, September 14, 2019

SVISA is a group of blind and visually impaired sound artists, composers, andthinkers. We are working to strengthen the presence of sonic based art in museums and art education. We encourage other visually impaired artists to work in the medium of sound. As a community we collaborate on projects, discuss the challenges and rewards of being blind artists, and support each other’s creative goals.

Together we have been exposed to “art for the blind” countless times onlyto nd ourselves vacantly running ngers over a topographic representation of theMona Lisa or American Gothic. The standard touch gallery offerings serve more as a vague reference to the classics and provide a dictated museum experience instead of an appreciation of the work.

When given the ability to discover art without a guide’s assistance a blind person can experience the work on his or her own terms. An easy way to provide this experience is through sound-based art.

In our search for more members we have found that there are a very smallnumber of visually impaired sound artists in the world. It is a baf ing discovery. To nd out why sound artists are not prominent in the blind community we areasking these questions:

Is the small number of artists because of a lack of sound represented in art education and museums? Is recording and capturing sound intimidating to someone who cannot see to utilize technology? Is a blind person’s reliance on sound such a routine thing that sound is overlooked as an art form? Is there a bias in the art world towards artists who do not work in a visual medium?

Our Goals

• Introduce visually impaired people to sound artists and composers making art informed by their disability.
• Create an accessible archive of works by established and new artists.
• Support the artists by organizing festivals, performances, exhibits, and distribution of recorded work.
• Inclusion in the design of audio descriptive museum tours.
• Create work speci cally for a visually impaired audience.
• Encourage sighted artists to consider a blind audience when conceptualizing their work.
• Propose sound installations and recorded work to museums and galleries as touch gallery alternatives.
• Experiment with new interactive technology such as virtual and augmented reality. • Host audio production and composition workshops for visually impaired people. • Encourage others to use their inherent listening skills to create sonic art.
• Push to include sound into art education curriculums designed for visually impaired students.

Salvador Campos

salvadorcamposartbrute.com | @salvador.campos.art

I am a self-taught artist. For the past 24 years I have used discarded pieces of plastic, metal and cloth found on the streets of Chicago to create sculptures and assemblages. I aim to stimulate the viewer’s perceptual awareness of the beauty and value in the ordinary and to encourage creative imagination regarding reuse of materials in the hope that they will discard less and recycle more.

In their scarred, bent, broken and crushed condition these pieces tell stories of the city. They represent cycles of life in the city. I work with found objects because they speak to me. Each piece contains not only a unique history but potential for aesthetic function.

I work intuitively, putting objects together in new combinations to enhance their expressive power. At some point in the process the piece I’m working on will tell me what it needs to continue. It is then my quest to find the missing pieces.

As I use recycled materials to create familiar and abstract objects. I strive for that moment of recognition when the viewer not only sees the individual parts but the whole thing at the same time.

I use objects that I find in antique shops, thrift stores, and garage sales, or that I find in the street and in people’s curbside junk piles. Sometimes things come together quickly and other times it takes years, to find that missing piece that ties it all together. I am fascinated by the randomness of it all.

In the pieces for this show, I have tried to convey the pain & frustration that I have experienced with recent medical issues.

Frederick Nitsch

fwnitsch.wix.com | @fwnitsch

These altered, found photographs are part of a larger series titled 'A Cage You Might Have Sprung, Flown Away', which is about aspirations and potential, empathy and regret.  I am living in recovery with bipolar type II disorder for which I have been hospitalized three times, one of which included multiple sessions of electro-convulsive therapy.  Medical imagery, especially imagery in which the patient seems unaware of what is happening to them, is very evocative for me of my time in intensive treatment.  I currently work with a mental health nonprofit as a support and advocate for peers and families of those affected by mental illness.    

Brett Taylor

bretttaylorprints.com | @_bretttaylor_

Erecting portraits integrating anatomy, architecture, and Crip Theory (the relationship between disabilities and queerness and the actualization of the self) I construct a connective dialogue marrying facets of my identity. Works are realized through a myriad of processes including print, collage, drawing and installation. Works question how hetero-normative barriers exacerbate the phenomena of “othering”.

As a disabled queer individual, I would perform to t these normalizing constructs, closeting my disability and sexuality. During my developmental years, I was confined to a wheelchair due to bone cancer located in my right leg. To appear able bodied, I would force myself to use crutches to complete daily tasks. Similarly, growing up in a small conservative town in the Deep South, I would perform more ”masculine” to pass as a straight individual. My interdisciplinary work explores personal acceptance, while advocating for inclusive, accessible space.

The mutant portraits and collaged abstractions illustrate the physical and mental struggle that ensues when queering the self against the built environment. The collage materials are mined from literature published prior to the Americans with Disabilities Act of 1990 and are reconstructed from the wreckage to fit personal paradigms resulting in unique self-portraits. The blue monochromatic color scheme references the international symbol of access observed in the handicapped sign. The reconfiguration of these restrictive structural buildings into figural works promotes the reclamation of traditionally developed spaces by a disabled queer individual, fostering my own reclamation of accustomed gridded societal conventions.

Mason Pott

masonpott.com | @masonpottart

I seek an understanding of how individuals remember. Every experience is imprinted as a memory. These memories can shift in character over time. Traumatic events may no longer define every waking moment of one’s life. Simple and insignificant moments may morph into complex, powerful events.

My artwork emanates from a traumatic health crisis in 2016 where I was held in a medical quarantine at Northwestern Hospital for six weeks, underwent seven surgeries, was treated with chemotherapy, and was on a feeding tube for 3 months. This unique experience forced me to evaluate my priorities and gave me a wealth of thought-provoking material to use in my artistic practice.

Perry Danis

@perry.danis

I have dealt with severe depression and other mental illnesses for most of my life. I was first diagnosed around 8 years old and have seen numerous psychiatrists and therapists over the last 20+ years. I’ve tried many different types of therapy and been on countless medictions. I did anything that held any promise of relief, yet nothing seemed to really help. I struggled with a lot of feelings of guilt and self- blame. After all, how could all of these therapies and medications that help other people not work for me? Maybe I can’t get better because I don’t really want to. Maybe I’m not trying hard enough.

Finally in 2017 my psychiatrist ordered a genetic test for me. The results of the test showed that my serotonin transporters and receptors are defective. All the SSRIs I had been taking over the years would never have worked. Seeing proof that there is a real, physical problem with my brain was extremely validating. Although there isn’t a way to fix my serotonin transporters and receptors, the test results gave me a list of medications that have a better chance of being effective for me and helped me to find some acceptance.

Failures in Me is about my experience trying to find an effective antidepressant and battling with my insurance company to even have the opportunity to access some of them. In order to be given more expensive, name brand medications, my insurance company first required me to try the less expensive drugs in the same class and “fail” them. You have to swallow these “failures,” these drugs that won’t work, knowing they will get broken down and absorbed in your body and become a part of you. I’ve swallowed thousands and thousands of failures.

Anxious Organs and Heartstrings are about the physical sensations of anxiety and the way that mental pain can express itself in physical discomfort. Whether it be knots in the stomach, heartburn, a lump in the back of the throat, dry mouth, or chest pains, anxiety can cause you to have sensation in parts of your body that you normally can’t feel.

 Central Power/ Fogged Up Thoughts was inspired by brain fog, a symptom that often accompanies depression and ADHD that makes it difficult to remember things, focus, and concentrate. The lights inside the piece represent thoughts, ideas and memories that are difficult to access or see through the obscuring fog. The light also represents the electricity that the brain produces, enough to actually power a light bulb. Through all the difficulties I experience with my brain, it’s still miraculous that a 3 lb blob of fatty tissue can power the body and control countless complex processes that allow humans to function.

Micah Dillman

micahdillman.com

The objects produced in this series are a response to my research on the ways in which queer communities have to provide for one another. This is especially relevant in terms of mental and physical health care due to the frequent failures of the medical system to provide the fullness of care necessary. For instance, donation websites acting as a surrogate for lack of health insurance coverage overall, especially in terms of gender affirming procedures. This lack of access also results in interpersonal relationships being forced to function as therapy and general care giving. These sewn works depict an imagined reality where queer communities are able to be entirely self sustaining organisms and no longer are forced to rely on health care systems which often exclude their needs.

Sara Peak Convery

@sarah.peak.convery

Five days before my 50th birthday I was diagnosed with lymphoma. During and after my treatment, I created artwork using images of my bald head and body to process and convey the experience.

Sara Sinuk

I’ve been managing gut-health and trauma related issues for over fifteen years. And after exploring western, eastern, holistic, you-name-it medicine, I’ve come to learn that only by accepting my body how it is now, and paying close attention to its signals — its wisdom, is when I start to feel “better” or whole again. Instead of chasing the latest cure-all trend, I’m living with my body and responding to its specific needs, so it can do the same for me.

This piece portrays the non-binary aspects of wellness and unwellness. We are all always sick and we are all always well — in the in-between. Focusing on health as an objective blurs the value of its constant duality and robs you of present happiness. Wellness is a state of mind as much as a state of being.

Chuck McNally

@chuckmcnally

I came into the ER, complaining about abdominal pain, because I didn’t have insurance. I suspect they thought I was looking for pain medication. I remember the doctor telling me I had a kidney stone and would need a follow up appointment with a urologist, but since I didn’t have insurance, I needed to develop a taste for cranberry juice. Thinking my pain was from a kidney stone and not having insurance, I treated the pain with over the counter pain medication, and cranberry juice.

Eventually the pain was so bad I couldn’t move my right leg, and finally went back to the ER (this was years later, because of that bad experience).This time I was told I had terminal cancer, and that what they had thought was a kidney stone was the start of a tumor, which over the years had metastasized and spread through my body. It’s in my pancreas, my liver, my lymphatic system, my bones, esophagus and brain. I was given six weeks to live. Somehow, almost seven years later I’m still here. Along the way, I‘ve been documenting my appointments and treatments at Dana-Farber Cancer Institute with photos, videos, drawings, paintings, and animation, as my way to cope and not become overwhelmed by it all.

_____________________

Curator’s Note 2019 : Chuck began undergoing brain radiation the first week of September, 2019.
Curator’s Note 2022: Chuck passed away on April 28, 2022, at the age of 62. You can read his obituary here.

Patrick Wilkins

partcik-wilkins.com | @patrickmartinwilkins

My pieces are about the pitfalls of not having health care and the lengths that people (myself included) have gone to avoid medical bills. Homo sapiens is about seeing coworkers cut themselves badly and asking me to seek out work materials (rags and super glue) so they wouldn’t have to fill out an incident report. Teeth Dreams is about missing expensive dentist appointments and dreaming of teeth.

Megan Keating

I suffer from Major Depressive Disorder (M.D.D), Anxiety, and PTSD (Post Traumatic Stress Disorder). An endless war rages inside my head, a war fought between conflicting voices, each battling to be heard.

“You’re such a burden. Your family would be better off with you dead.”

“Are you even going to be able to pull off this final project you’re doing? What if your computer crashes? What if you fail? What if everyone’s work is better than yours?”

“Are you safe? It’s dark out. Did you lock your doors? Is someone going to attack you again?”

“You’re pathetic.” “You’re worthless.” “You’re fat.”

The litany goes on and on. Some days I am able to quiet my voices and push them into the background. On other days, they force themselves into the foreground and cause havoc in my mind. This image is a visualization of these three mental disorders and of the voices battling in my mind each day.

It was July 10th, two days before the lung cancer spread up your spinal cord and into your brain. The hospice nurse had just come by. She let us know you had a maximum of two weeks to live. I had been taking care of you for about a month now, seeing you through your good days and your bad days. I had just helped you out of bed and in to the kitchen so that you could smoke a cigarette and scratch off your lotto tickets. You sat with your forehead pressed against your arms as you struggled to draw breath. I sat next to you, glancing over the day’s mail, when I heard you whisper something I couldn’t quite make out.

“What was that?” I asked.

You lifted your head and said, “I thought you went home today.”

I was little confused. I paused for a moment, then realized you must have thought that I was your daughter, Erin, who had just left. I smiled and said “Well, Erin went home for the day. But I’m here to hang out with you. I live upstairs, so it’s not much of a hassle.”

You looked straight into my eyes. “Who are you?” you yelled.

I could not answer. I just watched you put your head back onto your arms, trying to hold back my tears. My therapist once told me that I should “Take pictures of you like this, so that when I miss you, I can look back and remember how much you had changed.” I knew this was something I never wanted to relive, or even remember. But I picked up my camera and shot.

My grandfather, George Smolinski, passed away peacefully a few days later on July 17th, 2019. He was surrounded by loved ones as he drew his last breath. The photographs I present in this show are in his honor.

This image was taken during a particularly dark episode of depression. I was trying to finish a final project for my photo class, but I was so consumed by anxiety and depression that I felt like I was losing hold of myself. I felt suicidal. I had lost faith in my artistic abilities. I felt myself withdrawing from the world and everyone around me. This image is a physical representation of this feeling. When I fall into a depressive episode, my mental illness can consume my entire being. I feel like I am being dragged into the dark. I reach my hands out to whoever might notice me struggling, praying someone can help pull me back before I lose myself to the void.

I took this photograph while in midst of a major depressive episode. It represents how depression inhibits my ability to reach out to others for help. When I am in a dark place, I feel like screaming at the top of my lungs to tell anyone who will hear that I am drowning, that I am struggling to breathe, that I need help. But it is as if depression physically grabs me by my throat and chokes me so that I cannot speak. I am trapped in my own head, unable to speak or to reach out to those I love for help. People sometimes say, after a loved one has committed suicide, that they should have “reached out”. Most people do not realize how difficult this is when someone is struggling to stay alive. This photo is in memory of those who lost their lives to depression because the illness inhibited their ability to reach out for help.

For those with mental illness, it is extremely hard to medicate. For most people it takes months, even years to find a medicine that works and improves your symptoms. For me it was almost 10 years of scripts that never worked for me. This is a representation of that struggle.

Rachel Wallis

Tanuja Jagernauth

rachelawallis.com | @radicalquilter | tanujadevi.com

Nine years ago a friend stopped short in front of me on a bike ride and my life changed forever. I put my foot down wrong, managing to tear my ankle open, ripping through ligaments and damaging nerves. The Injury I sustained limited my mobility and left me with chronic pain that affected not only my physical abilities and my mental health, but also permanently altered the course of my career, and my activism.

A crucial part of my healing process, and the work of understanding the scope of my new life and my new body, were the years of acupuncture treatment I received from Tanuja Jagernauth. Our time together not only tamed my nerve pain, which resisted every other treatment I tried, but gave me space to mourn the loss of my previous life and identity, and begin to build a new one.

Tanuja believes that the process of healing is a collaboration between practitioner and client, and we submit a small wall quilt representing the relationship, growth and healing we engaged in together. The quilt is a self portrait of my body, with the energy meridians and nodes of traditional Chinese medicine represented through hand quilting and embroidery.

Hamsen Peeler

@hammyjam | HammyJamShop

These works from January to September 2019 illustrate my own journey from being severely affected by Ulcerative Colitis yet undiagnosed, to my life post-diagnosis.

In order to gain a diagnosis, I underwent more medical tests than I could keep track of as well as a week-long hospitalization. My life now seems to be split into before and after those events, and my work deals with the accompanying turbulent physical feelings and emotions. These works show the delicate balancing act between medicine and body, of both trust and mistrust I’ve felt towards my own body as well as the doctors and medical advice that feel I have no choice but to trust, and the exhaustion that comes as a bonus. I’ve chosen to show in my work that my body and health are in a constant state of flux and there are some things that medical systems can’t fix, but might be able to hold it together.

Zoë Sapienza

zoesapienza.com

This collection of work came together after a second, surprise open heart surgery in the fall of 2018. I’ve had congenital heart disease all my life, with my first go at surgery being at only six days old. As I got older I nearly forgot about my disease, aside from yearly check ups that were kind of fun because I got ultrasound jelly on my chest. However, in early 2018 I was told I’d need to have a procedure to replace my pulmonary valve. Fast forward to September and the simple procedure failed, so I had to get my chest cracked open a month later. This is where this work comes to play.

After my surgery my voice was essentially gone. And not just for two days from being intubated. I sounded like I had laryngitis. Some nerve had been nicked that led to my vocal cords which resulted in my voice essentially disappearing.

Losing my voice was the downfall of who I was. I’m an actor and I sing at my day job. How was I supposed to do the thing I love without my voice? I was recovering from having my chest split open, could barely do anything for myself, and now my voice was gone. I’d go out with friends and they’d tell me to bang on the table when I wanted to say something because everyone would have to get quiet. I started writing down everything anyone said to me about my voice in a note on my phone. Friends, family, strangers, I wrote it all down. This was the inspiration for Tea and Honey. I was bombarded with these words multiple times a day and it knocked me lower than I thought I could go.

February 14th, 2019 I had a routine appointment with my ENT since speech therapy wasn’t working. He told me I’d probably need surgery to get my voice 80% back. I left that appointment and sobbed on the bus. That night, my partner at the time asked if I wanted to eat a pot brownie. Why not I thought. Well I woke up the next morning and my voice was back. After 3 and a half months, my voice was back.

How was that possible? I ate a brownie a week for the next few weeks and finally my voice was 100% back. My dad says I sounds a little different. Maybe I do, but I can scream and sing and laugh again.

This collection was created to shed awareness on invisible reasons behind health issues. Everyone assumed I had a cold. Most people didn’t bother to ask, and if they knew the reason, empathy was rare. My physical body was shot, as noted by the photos, and mentally I was drowning and felt incredibly lonely and isolated, as evident by the journal entries shared. The final photo, New Pink Line, represents my journey with accepting my new scar. I’ve always had one, but this one looks different than the old one. I’m so thankful for my surgeon, but he didn’t listen when I said I didn’t want the old one to disappear if he could help it. I woke up and he said, “I got rid of your other one for you so it’d look better”.

My hope with this selection of works is to make people think about how they speak to others in the world. I hope you leave with a greater understanding of empathy and willingness to ask and listen.

Journal Entry #1

Two weeks post surgery. Typed for clarity. Spelling is corrected, punctuation is not. Originally handwritten in a personal journal.

November 6, 2018

I love Fall. The colored leaves littered all over the ground. But as I walk at a slowed pace looking over the golden world that surrounds me, I feel like the damp yellow leaf beneath my feet. Lost, walked on.

My friends come to bring dinners and all I hear them say is “well you should get some rest”. I pretend to not hear the truth of this statement because all I want is to talk. Share, feel like my life exists outside of this bedroom, the pills, and the straw-adorned cups.

Once they walk out the front door and on with their lives, I’m still stuck. It feels as if they do their good deed, but then want to run away from the sick as quickly as possible. I know, “Get some rest” is code for “I want to leave this hospital like space and return to my life of goals, friends, and voices that can actually make sound.” All the normal things.

Because not knowing when your voice will return is scary. Needing help to tie your shoes and reach for a plate is exhausting. Not hearing my own laugh makes me feel like I’ve lost a part of myself - like I’m not whole, like I’m not who I was or who I want to be anymore.

My chest will heal by January, but when can I act again? Scream a monologue? When can I go audition and feel like I’m putting the best out there? My voice is my job. I worked so hard to be able to sing after being told I can’t. Will I have to start all over? I try to push these thoughts far way with little luck. For now I’ll have to stick to reading to my best friends while snuggled in bed surrounded by Tylenol and heating pads. And maybe that’s not so bad.

Journal Entry #2

Two weeks post surgery. Typed for clarity. Spelling is corrected, punctuation is not. Originally handwritten in a personal journal.

November 7th, 2018

I feel like such a child. I have to sit in the back seat, I can't go swimming or take a bath until my hole is closed. Philip likes to joke but I just feel sad. It's like the ability to smile has been taken away from me. He said he enjoyed the last two weeks, but I didn't. Pain and inability to dress yourself does not warrant fun times - even when spent together ... of course only doing approved activities which frustrates me.

And now you have to luxury to leave this mess, go do whatever you please, have friends to laugh with without a time stamp of 20 minutes so you can rest. You can stay out late, go see shows, and be yourself.

And I feel stuck to fester in the stew of home. Feeling needed and productive no longer exist in my vocabulary, yet those things bring joy to me. Being stuck with my laptop and pencils have me feeling useless, unhappy. I'm struggling to bring joy in things I once did. How long will this last? I'm trying so hard.

I want to laugh and speak and smile but instead I'm jealous, numb, and alone, waking myself from tears and breathy moans in my sleep.

I want to run, do a cartwheel, or at least feel like my chest will hold together when I breathe. Doctor says numbness in the chest is a new normal maybe. I don't want a new normal. I want to sing my babies to sleep again, I want to do a monologue and feel strong on that stage. I just want to hear myself laugh.

I don't feel like myself so connecting with others seems fake. My friends tell me that it's not forever. But it's now and you're not listening. Now is important too. I feel like Philip is a friend, not a partner and I want everything to feel close to him again. I wake him early with my alarm for meds and hear him groan with annoyance as he rolls over away from me. Sometimes it's too much for him so he escapes to his room at 3am. If only I could escape too. But I'm again left alone. I don't blame him, I'm just unhappy and I know he needs time. I just wish I could have a break too. A break from pain. A break from loneliness, from papers, meds, phone calls, copays, wires, bandaids, sweatpants, heating pads, wristbands, doctor tables, closed doors, tears.

I just want to be happy again.

Journal Entry #3

Five weeks post surgery. Typed for clarity. Spelling is corrected, punctuation is not. Originally handwritten in a personal journal.

November 29th, 2018

If I had known I would lose my voice I would've used it more. Sung at the top of my lungs and not cared who heard me. Screamed everyday just because. Never taken my sounds for granted. Laughed everyday just to hear myself. Forced my way on stage so people hear what I have to say. So I can feel what it's like to perform again.

I don't want this to define me, but I'm constantly reminded with every word, with every opinion I decide not to share. With every ignored sentence. With every "are you sick?" comment all day long. I miss singing in the grocery aisles as I find my favorite cereal. I just want my life back.

All my jobs, all my dreams and passions need my voice. Acting has been stripped from me without my consent. I can't sing to my babies anymore.

Who am I without my voice?

Having a group brunch is a challenge, background music has to be turned down when I enter the room, no matter where I go, people don't understand. I feel like who I am has been ripped out from under me.

I share my story so people can learn. Be empathetic. To say it's embarrassing to watch [me tell people] makes me fee like I don't matter. Like there's no worth in sharing. Like I should hide my struggles. No. I will never ask for pity. That's not what I want. But I do want people to know. To understand. To stop looking at me like I'm sick. And l"m allowed to be upset and angry and lost. My life has been flipped. Be angry with me.

Michael Gallagher

MichaelFrancisArt.com | @MichaelFrancisArt

There are certain times in life when something so very small can present you with a massive challenge. It’s different for different people, but it certainly isn’t rare. This piece is part of my response to something the size of a walnut that completely took me over for an entire year and left me forever changed.

The six months or so that I spent in the act of creation for this work was simultaneously a creative process and (unbeknownst to me at the time) a psychological processing. Making the mold and casting these over-sized walnuts in plaster had an unexpected impact all its own. The sense of connection and re-connection to all facets of my world is one that I’m grateful to have and totally giddy to be experiencing.

I look back now at that damn walnut and I feel pure gratitude. I know that when I say it left me forever changed, I’m right. It did. And it was a change for the better.

___________

Michael’s journey through a diagnosis of prostate cancer at an early age included having to navigate a healthcare system that that rarely seems to put the patient first. Much of the emotional ramifications had to be put on a back burner to research health insurance, in and out of network providers, deductibles, and the diagnosis itself. The prostate is routinely described as a “gland the size of a walnut” and the process of making walnuts transformed from therapy for profound sadness into symbols of resounding triumph. 52 walnuts represent the age at time of diagnosis and the number of weeks that cancer dominated his mindset, which it no longer does.

Stephanie Sinuk

As a Labor and Delivery nurse, I am subject to the full range of emotions available in life nearly every working day. I have seen births and deaths of babies, women at their most unstable, families at their most vulnerable. The experience described was, while not a death, somehow the saddest delivery I have ever been a part of. It shed light on the incessant, arduous battle to provide adequate care for people with mental health disorders, both acutely and in the long term. My hope in sharing is for a call to action, for others as it has been for myself.

Help Less | 2019

We couldn’t fix you.
We had no plan and it wrecked you.
We let it get bad to only get worse,
Your screams narrated the story.
We failed you and then left you
In pools of our defeat
Shaped like your spilled blood,
Clotted thick like the problems you keep.
We couldn’t clean up the mess,
Then we took the only good of it from you –
An angel clean of all of it.

When you awoke we fed you,
With lies
And pretended he didn’t exist.

He was born of madness and pain.
You went sane and kissed his face
With the purest of love
All the women in the room had ever seen.
We were weeping while watching

You exude this pure love
For a baby you won’t get to know,
And him, lying on your chest
With the purest of innocence
That’s reserved for just what he is,
And surely undeserving
Of the life that must be coming for him.

I can’t remember his face now,
But your screams will never leave me.

What is this world where
Good women go mad at the age of twenty four
And can’t be saved,
Babies can’t stay with their mothers –
They’re handed over to The System
That can’t get it right or do
Any better.

I make my living working
For this system that’s overloaded,
Too busy treading water,
And putting bandaids on wounds that tunnel to icebergs.
A system that prides itself on helping,
But so often, so devastatingly
Instead hurts.

I remember you both in every
Good birth I’m a part of.
I send you good love
Wherever you are, apart.

Jennifer Hochgesang

Mimi Wallman

Unliving | 2019

Unliving is a glimpse into the disintegrated life of someone with disabling health issues. The day to day grind and the work it takes to be constantly ill and on top of multiple medications, doctor appointments, procedures and hospital visits. It is a small look into healthcare’s repeated failure in chronic illness and pain at a hospital level. At the lack of empathy, the never-ending fight to prove a silent chronic illness to new doctors and nurses and the disorientation one feels from being over medicated but yet not medicated correctly. It shows all the thousand little cuts in a day, from the nausea to the pain, from the handfuls of pills to the invasive procedures — there is no getting better. This is it. This is living with chronic illness and pain. And, finally, Unliving reveals how joy, humor and one’s love for others is how one survives.

Carole McCurdy

carolemccurdy.com

BENEATH | 2019

My movement-based performance piece, BENEATH, is inspired by the land sickness I experience with the rare neurological illness Mal de Debarquement Syndrome (MdDS), which causes a constant rocking sensation of motion and imbalance. The piece makes use of projected optokinetic stripes from a software file provided by my doctor as part of an experimental treatment. The treatment didn’t cure me, but it offered a strong aesthetic stimulus. I’m now in remission since mid-September 2017, but aware that MdDS patients have a high rate of recurrence, usually triggered by air or water travel. I take benzodiazepines if I have to get on a flight, and so far that has been working to prevent recurrence.

Jessica Fenlon

Neurostatic | 2019

An expressive piece related to my journey through catastrophic health experience. Voronoi noise calculations shape the static in ways that align with my inward images of the nervous system’s structure, and its sparks.

This expresses my experience of the consequences of both losing the 6th cervical vertebrae to the cancer, and the metal implants in my neck to support my spinal cord and vertebral spinal column, on my whole body nervous system below the neck.

I call it the ‘numb static suit’ that has fiery zinging sparks. My neurosurgeon tells me this is normal, and may last for up to a year as my neck heals.

Sid Yiddish

DP-A Sound Text Punk Opera | 2008

Photo by David Rinker

My body of work is comprised of an experimental human instrument of four different components: sound, philosophy, humor and composition. I encourage people to connect with their hidden, shy side and let it all hang out with a bit of sparkle and shine.

In difficult and painful situations, I often apply the above four elements to help bring forth a positive outlook, with a good life lesson. The performance itself deals with myself coming to terms with my own depression and anxiety, and how I deal with, what has effectively become a life long struggle since being diagnosed in 2000. I feel that my mental illness has been a burden of pain in itself. I wrote this performance piece, in hopes that others would not be afraid of their own consciously painful diagnoses and the invisible stigmas often attached with depression, anxiety and other mental illnesses.

Additionally, this is the American premiere of “DP.” It first premiered in Aarhus, Demark in spring, 2009 Freakshow Adventure Tour of Eastern Denmark, by Sid Yiddish And Clean Boys.

kinnari Vora
Ishti Dance

ishti.dance | @kinnarivora | @ishtidance

Anatarabhava - Existence in Intervals | 2019

This work explores humanity’s relationship to death. Inspired by the Bardo philosophy - the state of intermediate existence between lives on earth in Tibetan Buddhism, her family’s traditions and rituals, and contrasted by the fear, denialand chaos related to death in modern society of United States, she shares herexperience through the medium of traditional Indian and contemporary dance and performance art.

“Let us deprive death of its strangeness, let us frequent it, let us get used to it; let us have nothing more common in mind than death....we so not know where death awaits us so let us wait for it everywhere. A man who has learned how to die has unlearned how to be a slave.”

-The Tibetan Book of Living and Dying by Sogyal Rinpoche