Art from the heart – International Heart Spasms Alliance

Closely packed beads (arranged in a rainbow pattern, starting from red at the top) fill a simple heart shape against a white background. Hand-written around the edge of the heart are the following words: survivor, funny, awesome, independent, hilarious, creative, strong, caring, selfless, talented, amazing, kind.
Rainbow heart by S. Hilton, shared with permission from IHSA.

The International Heart Spasms Alliance (IHSA) is a patient-founded website with a mission to “educate, inform and enlighten” patients and clinicians about the family of heart conditions defined by ongoing chest pain without permanent narrowing of the coronary blood vessels. These conditions include (but are not limited to) coronary vasospasm and microvascular angina and have the reputation of being notoriously difficult to diagnose, with inconsistency of symptoms across presenting patients. Diagnosis, therefore, can be a slow process and finding the right treatment is not a one-size-fits-all approach. Four patient advocates (from as far afield as USA, Australia and the UK) discovered one another through their similar Facebook support groups and decided to join forces and pool resources to create one dedicated online space, designed in such a way that patients (experts by experience) and clinicians (experts by training) could collaborate in an equal partnership – sharing up-to-date information, supporting research and placing patients firmly at the centre of their own treatment plans in order to achieve the best possible quality of life via a holistic approach.

UK-based IHSA founder Sarah Brown contacted me recently to let me know about the IHSA’s website. Sarah (finding time in her busy schedule as a volunteer patient advocate for various organisations, including the British Heart Foundation and the National Institute of Cardiovascular Outcomes Research) has previously contributed to Heart Haiku zine, writing about her experience of living with coronary vasospastic angina. This piece by Sarah features in the issue 4 of the zine: Symptoms.

“Here comes my heartache

Spasms are labour in my heart

No baby in the end

The pain comes and goes

The air squished out of my lungs

My heart starved of blood

The pain grows and grows

It’s deeper longer stronger

Cutting through my chest

My bra feels too tight

I cannot think speak or move

Then the pain has gone”

Sarah Brown, 2020

Sarah shared her poem with the other IHSA members who, already convinced of the importance of creativity and artistic expression, decided to launch their own Creative Corner – a space for patients to share poetry and artworks inspired by or commenting on their experience of living with coronary vasospasm and microvascular angina. As well as posting work of their own, the IHSA members reached out to Facebook contacts from the heart-spasm community and began building a collection of written and visual artworks.

I was THRILLED to learn that the Heart Haiku zine had played a part in helping to spawn another creative space for people to share their experiences of living with a heart condition (I really do believe creative output is a hugely helpful way to process and consider these often difficult experiences) but was even more thrilled when I followed the link and saw the wonderful work that had been posted already.

R.A. Smoller’s incredibly beautiful painting of dying irises in a vase is accompanied by the following powerful explanation of the piece’s creation:

When I was in the hospital with my first heart attack, a friend brought me these beautiful irises. Every day I would look the irises from my hospital bed and wonder, “How long would they last?” I tried not to direct that question inward, but the temptation was right in front of me. Whether rightly or wrongly so, I had already drawn imaginary parallel life-spans between the irises and me. I took the flowers home and slowly, they began to fade but they didn’t die, they wouldn’t die. It seemed to me that they kept fighting to live and they were still so beautiful. I decided to paint them, to freeze a moment in time for the living flowers and for me. In that moment, in that painting, we weren’t glorious, but we were alive, and we were still beautiful.

From Dying Irises, by R.A. Smoller. See the full piece (and the painting it describes) at

A painting. In front of a dark grey background/sky, a woman painted in white and grey lies on the ground in a foetal position. A broken heart lies on the ground beside her, bleeding into a cardiac tracing and rainbow outline, apparently feeding the two bright oversized flowers in the centre of the image. Between these flowers, a woman (shown from behind and with long flame coloured hair and a green dress) rises upwards with her hands held aloft. Dotted lines, reminiscent of light or energy, travel up her body and are emitted from her fingertips, forming spiral patterns of white and yellow against the dark grey sky.
‘Pain Uplifted’ by Annette Pompa, shared with permission from IHSA.

Sarah explained to me that this piece, titled ‘Pain Uplifted’ and created by one of the association’s four founders, is particularly important to the group as they all relate strongly to the image’s depiction of rising up from the pain they all experience. They asked Annette Pompa (the piece’s creator) to consider sharing this work on the IHSA website and she wrote the following words to accompany the image, describing the concurrent potential benefits of creative output to both artist and audience:

Creative outlets are a way to gain insight to whatever is happening in life. It can be cathartic and good for the spirit. […] I am more than a dysfunction. I am more than the physical. Through expression by word or visual art, it alleviates the pressure of ongoing pain. Difficult moments, days and spans of time can be brought into perspective. It can be healing. Focusing on all that is alive in my heart and mind make for less desperate days. If any other person can relate to the image and help them heal a little, it is even more heartening to me. 

From: ‘Pain Uplifted’ by Annette Pompa, published on IHSA’s Creative Corner

I’m always excited to hear about heart-related creative output so do get in touch to let me know if you discover (or create!) any. And if you have a condition like coronary vasospasm or microvascular angina and fancy creating a piece of your own, I know the International Heart Spasm Alliance would love to consider it for inclusion on their site – just visit their Creative Corner to find out how to submit your work.

This month the blog has a focus on all things Friends & Family, tying in with the theme of the zine. I love the way the patient founders of IHSA, from across the globe, have come together via the common ground of their heart conditions, forging friendship and creativity as well as a place to find support and information online. Have you made new friends because of a shared heart condition? What are your thoughts on online friends? If you fancy sharing your thoughts on this (or any other) aspect of Friends & Family, perhaps you would consider contributing a haiku to this month’s zine? Full details available here.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s