UK essay writing services

A personal note from Julia Spencer, Speaker & Author

“Why am I passionate about sharing my story?”

I have retinitis pigmentosa (RP), an incurable, untreatable genetic eye disease. As my vision loss progressed, I fought to remain independent and overcome the many challenges of being blind in a sighted world. (Think crossing busy streets, handling kitchen knives, and falling down stairs!)

Unfortunately, I had to cope with the overwhelming emotional and physical challenges without a doctor’s guidance, support, or compassion. To ensure others don’t endure a similar experience, I have vowed to speak up and inform medical students, doctors, and other healthcare professionals.

My first opportunity to speak up …

I was invited to participate in a lecture for medical students at the Warren Alpert Medical School at Brown University. I was to follow Dr. Michael Migliori and speak about living with an incurable, genetic eye disease and to share my perspective on the doctor-patient relationship. Dr. Migliori spoke first to explain RP to the students. He had read my book, and he shared his fervent belief that a doctor takes an oath to care for the whole patient.

I was astounded to hear him talk about treating the “whole person”!

Now it was my turn to speak. My heart was pumping as I got up, because the talk I had prepared contradicted his philosophy. As I stood there, straining to look into the students’ eyes, I told them I was speechless. Why? Because, from my experience, it is not the doctor’s responsibility to take care of a patient with an incurable disease. That’s what I had been led to believe.

I put down my notes and told them my story.

I explained that my medical care had been less than compassionate. I shared my fears, anxieties, and frustrations. I revealed how my fight to cope and adapt could have been easier with compassion from my doctors. In fact, one ophthalmologist brusquely declared I was like a dying patient seeking help, adding, “There’s nothing I can do for you.”

Devastating words. I felt humiliated, angry, and shell-shocked. I felt lost and alone. But I maintained the fight within. I knew I had the ability and drive to overcome those words, but they hurt and left a lasting impression.

But I persevered, and with the help of my family, friends, guide dog Irene, and a new doctor I overcame the many challenges that lay ahead of me.

  • I mastered many new skills – I had Irene to guide me across busy streets, and up and down curbs and stairways. The Commission for the Blind taught me kitchen skills and how to maneuver in my own home without getting hurt.
  •  There will always be new challenges – But I will always find a ways to overcome these challenges.
  • I learned how to ask for help – I consider myself fiercely independent. Ironically, I had to learn how to ask for help in order to maintain that independence.

Loss of any kind can immobilize us. But I believe we all have an essence deep within us that will prevail over all obstacles. 

Michael Migliori, MD, FACS., Chief, Div. Ophthalmology, RI Hospital. Ami Cuneo, Brown University Medical Student.

Michael Migliori, MD, FACS., Chief, Div. Ophthalmology, RI Hospital with Ami Cuneo, Brown University Medical Student.

Meeting Planner: Hear Julia’s story.
Call her today. Book her today!