Jane Heydon, a clinical trials participant with retinitis pigmentosa has written a poem she hopes might help other patients going through similar experiences.
Jane enjoying a beautiful day in Santorini, Greece while on a Mediterranean cruise holiday in 2022
Jane was born with retinitis pigmentosa and was night blind as a child. When she was 17 she was in a netball accident and experienced a detached retina. She discovered she was the first documented world-wide patient to have experienced both retinitis pigmentosa and a detached retina and her treatment team went on to write a paper about her case. She lost a little sight at the time in that eye, but was able to work, travel overseas and continue with her usual activities.
As life went on Jane met her husband and began fostering children as she wanted to avoid passing on retinitis pigmentosa to any of her future children. She explored adoption, but at the time, the conditions on adoption were such that she was asked to prove that she would still be able to see when the children turned 18. This was a very high bar that she couldn’t meet. Instead, Jane and her husband decided to live a life without children.
Over the years, Jane’s eyesight has deteriorated, particularly in the eye that experienced the detached retina when she was 17. Only a little light remains in that eye and she relies on her amazing husband to help her get around after having to stop driving herself many years ago.
Jane is part of a retinitis pigmentosa online support group that she finds very inspiring in terms of people’s strength and resilience in the face of adversity.
“I was on a houseboat when I wrote the poem along with my husband and two other couples, all of whom could see,” Jane said.
“They were all doing their own things like playing games and going on kayaks and I felt isolated and unable to join in.” She wrote the poem on her phone while the others were busy with these activities.
“It wasn’t until I got back home that I realised how much more independent I am when I am in my own environment,” she said. I’ve learnt to appreciate every day and not let the disease stop me. I know that today could be the best day of vision I have remaining and I hope my poem inspires others to keep going and not let their condition stop them,” she said.
With her permission, we are sharing her poem with you here.
Life
Written by Jane Heydon
Afraid yet strong,
she sings her song.
Isolation no stranger,
regrets the real danger.
Fate leads the way,
challenges every day.
Determination the key,
surrender can never be.
Trust is required,
gratitude her guide.
Patience is a blessing,
life re-assessing.
Judgment surrounds,
doubts abound.
Perseverance her friend,
ignorance offends.
Frustration torments,
freedom she laments.
Independence craved,
happiness in waves.
Sorrow visits,
discipline a requisite.
Confusion calls,
acceptance falls.
