Today I was both privileged and honoured to be asked to be a guest speaker at the annual open day for the Irish Society for Crohns & Colitis at The Gibson Hotel in Dublin.
It was requested that I present my most recent work, ‘Portrait of a Patient’, a series of words and visuals that stemmed from my own personal experience of having IBD. Click here to read more about the project which was awarded the Trinity College Provost Fund for the Visual and Performing Arts.
I found myself sitting at the end of a line-up of great speakers ranging in topics such as; genomics (Dr. Anthony Ryan, GMI), novel new therapeutic options (Dr. Sudipto Das, RCSI), IBD medication (Dr. Anthony O’ Connor, TUH), the future of IBD support in Ireland (Bruno Lucas, ISCC), dietetics (Aoife Niland, HSE Midwest) and the moving self-management stories of sufferers who keep fighting to achieve their goals, namely Laura MacNeill (ISCC) and barrister Sheila Reidy (ISCC).
It felt so great to have yet another platform to share my concepts with patients and doctors alike and for them to be so well received.
Below is a transcript of my presentation …
We’ve learned today what IBD means. I’m here today to show you how IBD feels.
My name is Sinead Lawless and I’m an artist. I also have IBD.
My illness has limited me in many ways but in other ways it has pushed me to seek out what I really want in life and to pursue my dreams feverishly.
I keep a sketchbook and I draw regularly. I’m fascinated with anatomy and the human figure. I also love to try to capture emotion and human expression.
I accompany my sketches with my thoughts and feelings at any given moment.
Let me give you a synopsis of my medical history since my diagnosis.
2006 - diagnosed with Ulcerative Colitis
Next few years regular hospitalisations, steroids, infliximab infusions and blood transfusions
2009 - 2010 inclusive - amenorrhea
2009 - sub total colectomy
2010 - pyoderma gangrenosum
Rectal stump still bleeding regularly, no longer responding to steroids or immunosuppressants
2011- peristomal sinus resulted in a hernia which required operation also diagnosed with depression
2012 - diverticulitis and chronic kidney infections
2014 - multiple kidney stones in both kidneys requiring lithotripsy and surgery, long-term antibiotic, urosepsis, antibiotic resistance, further peristomal PG
2016 - completion proctectomy
Relatively good health since
As you can see I had a lot to draw and write about. This was a positive and productive way for me to release emotions and frustrations.
Having spent 14 years working in graphic design, 7 years of that self-employed, illness forced me to take time off.
With the help of my husband I reached for my brushes in 2015, not having painted since school.
I started attending the Schoolhouse for Art in Enniskerry where I was privileged to study with a number of master artists. It was cathartic for me. I felt I was taking control of my life back. That 200 year old beautiful schoolhouse in the heart of wicklow was the perfect place for me to rebuild my strength.
In 2016, I went on to win RTÉ’s ‘Painting the Nation’. Here I am with Pauline McLynn. Yes we had tea!! :)
After that I studied painting over two years at the RHA.
Tea with Mrs. Doyle!!
Portraits and figurative art are my favourite subjects. I think we paint what we seek to understand and the human condition fascinates me.
I would like to now present you with a project that stemmed from my personal experience of being a patient…
When I found myself overwhelmed with illness, and unable to speak about it, I found it easier to write my thoughts and feelings down. I created a sketchbook of words and drawings that was my go to.
The words came first.
They would come to me usually as I lay in a hospital ward at 4am unable to sleep. I would take out my phone and let it flow.
Once I was feeling better I hired a model to pose for me in ways that I felt captured that moment again. I also drew a few self-portraits.
I showed this sketchbook to a colleague of mine who works in Trinity College as a lecturer. He was very moved and encouraged me to apply for the Trinity College Provost Fund for the Visual and Performing Arts.
My application was successful and I was awarded the Provost fund to create 4 pieces from my collection. They were painted on large canvases to be displayed in the Trinity Centre for Health Science in St. James’s Hospital.
Here are the final paintings. Each piece is inspired by words I wrote while hospitalised. I will read these words to you now.
‘Memento Mori’
A piece about death, grief and existentialism
Grey or white what does it matter
Thoughts and feelings on a platter
Myelin sheaths and neural paths
Boney home of forgotten past
Trace the curves, observe the hollows
That once housed knowledge, joy and sorrows
Twisted cavern of whispers and ghosts
Pray for and bury what we recognise most
‘Mortality’
A piece about physical pain
Spasm
Insane
Noise of pain
Tighten
Expand
Gravitational demand
Writhing
Caught
Viscera knot
Thunder
Pop
Make it stop
‘Anxiety’
A piece about panic, fear and isolation
A visceral shudder
Heart punch wave
But outside I stay still
My surface unbroken
Belly gurgling fire
Electricity shoots through me
Tingling toes
I curl them under
Jaw tightens
Eyes grow small
Pulling myself so close together
Gravity increases
Throat is burning
Swallow the lump
Occipital pinch
Ears cloud over
A silent roar
Shatters my ribcage
Punctures my heart
Bones turn to water
Toes uncurl
Jaw slackens
Eyes drown
I fall down
‘Oppression’
A piece about there being no cure
Mouths opening and closing, a quiet deafening hum of nothings and somethings
The unchangeable, the uncontrollable, the solid steel certainty of subjective experience compounded
Uninformed suggestions bubbling up filling my ears and throat like tar consuming
No breath, no choice, drown in the glue
It is my skin now
Trapped in a world where everyone knows everything I remain still questioning, stumbling
Defiantly doubting my false counter conviction
Yearning silence that I might hear the feather of my own knowledge land
But it is blown by the wind of the many wise mouths.
Never landing.
Never sure.
It lives in turbulent perpetual undulation
Trinity Centre for Health Science - St. James’s Hospital
The paintings were well received at the Trinity College Centre for Health Science in James’s Hospital.
They will be on display here until September 2019.
The lecturers intend to use them as a teaching aid to create greater awareness around the position of the patient and chronic illness.
A number of them have asked if they can include the imagery and words in their lectures.
My hope is that the work will help to create greater awareness of invisible illness and chronic conditions. That it may serve as a conversation starter and a tool for empathy and compassion.
Some moments from the events …
