VisionAware

By Maureen A. Duffy, M.S., CVRT

VisionAware is honored that “Doctor OD,” a practicing optometrist, has chosen to tell the story of his own journey through vision loss – and back again – on the VisionAware website. His story first appeared as a four-part series on the VisionAware blog.

He describes the powerful emotions that accompanied his sudden vision loss; his reaction to being a “patient” in a clinical trial; his fear of becoming totally blind; and reflects on the ways his personal experience with vision loss has changed his interactions with his own patients.

Doctor OD’s Story: Sudden Vision Loss

I am an optometrist. I know vision loss and I know why people lose their vision. But feeling what vision loss means is a wholly different story and is something I did not know.

That changed several years ago on a Wednesday morning in November.

Like any other morning, I began the work day seeing patients. But on this one morning, and in an instant, I lost sight in one eye. It was fast. It was so fast that it felt unreal.

Even as I sat in my ophthalmologist’s office later that day, I kept playing each minute over and over in my head, up to the moment I lost my sight. The playback was loud as I searched my mind and my past for any habit or anything I might have done to cause this. It was loud enough that I could not hear my doctor at all.

I was distracted; too distracted, in fact, to be attentive or receptive. Although I was outwardly calm, inwardly I seethed with anger and fear as I debated my vision loss with myself.

I was hoping that my doctor could guess exactly what I was going through without my having to say anything. What I wanted was a “super doc.” Most doctors are, or try to be, and I am glad my doctor was one of them.

It scared me that my vision loss might possibly affect my good eye or make my injured eye even worse. Even if my doctor assured me that this could not, or would not, occur, I knew I could not logically believe that – I could not completely expunge that deep-seated fear.

Finally, I received the diagnosis I feared: acute optic neuritis, secondary to possible multiple sclerosis.

At that moment, what flashed before my eyes were images of losing my material things, my friends, or even my family. As unrealistic as I thought those outcomes were, it was still difficult to control those destructive thoughts.

I prepared for my next ophthalmologist office visit by bringing a close friend. That extra set of eyes and ears helped me immensely. My friend replayed the doctor’s advice and findings and corrected my conclusions, which was extremely helpful.

What I realized from this experience was that my personal fears canceled out any kind of objectivity I could potentially bring to the situation, despite my own professional training.

But vision loss isn’t strictly one trait or the other. It isn’t strictly personal experience and emotion versus objectivity; rather, it is a blend of objectivity and emotion and both are vital to understanding and coping with vision loss.

A Chance for a Clinical Trial Brings Hope and Uncertainty

“You have acute optic neuritis,” my doctor said, “and I don’t know if you’ll get your vision back.” Those words fell heavily on my spirits. They were not comforting, nor were they reassuring.

Until that moment, I had allowed myself to believe it was a diagnosis I could perhaps triumph over. My doctor’s words, however, left me with little hope. I knew that 50% of the time, my good eye would also lose sight.

Thoughts and images raced through my mind. I parsed each of my doctor’s words carefully, hoping for some hidden message of hope or uncertainty. But never were my spirits so low.

As he spoke, I wondered how I would be able to perform daily life activities, such as reading, telling time, or preparing meals, without sight. And all the while, I thought about telling as few people as possible. I imagined that they would not know how to behave around someone who had lost his sight.

“There is,” said my doctor, “a study.” My heart raced. I leaned forward and turned my head to see him with my good eye. “Tell me more,” I said softly.

My doctor told me that a nearby hospital was recruiting patients for a study of acute optic neuritis and that I might qualify. I had to decide quickly. I knew that any kind of treatment had to start within two to three days of the onset of vision loss. Twenty-four hours had already elapsed.

One internal voice battled with another:

“Don’t be stupid and try something that is never going to work. You will be disappointed like so many others that have been diagnosed with your problem.”

But another, louder, voice asked, “What is the harm in trying?”

With great anticipation and anxiety, I finally said, “Yes, I want to be considered.”

Immediately, my friend drove me to the study center. By 2:00 pm, I had entered the hospital as a patient. That morning was like no other ordinary November morning. The next day was Thanksgiving.

The Clinical Trial

It sounded simple enough. Acceptance into a “study,” or clinical trial, was something for me to smile about. Nevertheless, I knew I also faced the chance that I would receive a placebo [i.e., an inactive substance] instead of the real medication. It did not seem fair that seeking advanced care might also expose me to never receiving any medication at all.

[Editor’s note: In order to receive approval from the U.S. Food and Drug Administration (FDA), a new drug or treatment must be proven to be both safe and effective by undergoing a rigorous series of controlled unbiased studies. To prevent bias, neither the patient nor the examiners can know which patients receive the actual treatment and which are the untreated (or “control”) subjects.

These are called “double blind” or “double masked” studies and usually produce the most reliable results. The medication is coded and patients are placed at random into either the treatment or control group. When the study is concluded, the code is revealed and it is then possible to determine who received the actual drug or treatment, and who received the inactive substance, or placebo.]

On the morning of the first clinical trial meeting, I arrived an hour early, eager to do whatever was required of me. However, I was not prepared to read and fill out a 25-page questionnaire and complete a 15-minute interview with the nurse prior to the meeting.

And I learned that even though the doctor said I qualified, it didn’t mean that the study coordinator necessarily agreed that I qualified. What it meant was that I should be ready to tell my story once again.

I thought my first appointment would never end. After eight hours straight and more than two dozen tests, I was finally down to the last one: a magnetic resonance imaging test, or MRI. [Note: The MRI uses a magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body.] I actually slept through fifteen minutes of the MRI session. Luckily, I did not need to repeat it, because the MRI truly tested my patience.

I also learned that technicians do not talk to patients all that much. Although the technicians were courteous, I felt that each test was a pass or fail:

Did I do it well enough?

Would I have had a different result if I paid closer attention?

I had two fears throughout this initial session: A wrong answer might mean that I would not further qualify, or, more frightening, my condition might turn out to be even worse than I originally thought.

Thankfully, I qualified for the clinical trial, but I did not know whether I would be placed into the treatment group or receive a placebo.

The study protocol called for 60-80 mg. daily of oral prednisone for six days. I suspected that I was in the treatment group because I was familiar with the taste of prednisone, but my study status was never revealed to me.

During the first six months (and 60 eye appointments!) of the clinical trial, I became a familiar face at the study center. Each visit was 1-2 hours long, during which I received a dilated eye examination, a refraction, and measurement of my visual fields, along with retinal photographs and tests for color vision and contrast sensitivity.

During each visit, I listened carefully to discern whether I had a finding that might have changed from an earlier visit. Although the doctors and technicians were always courteous, it did not diminish my fear about whether I had done “the right thing.”

The Aftermath: Restored Vision – and a Better Practitioner

The clinical trial lasted for five years. As it progressed, the vision in my affected eye began to return…slowly. My dense 30-degree central scotoma [i.e., “blind spot”] began to shrink.

Instead of a very large central black/blank spot, it became an ever-shrinking gray one. I was elated, but also cautious because an inner voice kept telling me that this improvement might be temporary. I wavered continually between hope and despair.

Ten years after the conclusion of my clinical trial, the visual acuity in my affected eye has stabilized to 20/40. [Editor’s note: For an explanation of visual acuity numbers and terminology, see Low Vision and Legal Blindness Terms and Descriptions.] I still have a grayish “blind spot,” but it is now located in a part of my visual field that does not interfere with my central vision.

My mind races back to that initial moment of sight loss as if it happened just yesterday. Every word then is as real to me as if it was spoken just moments ago.

As a patient and as a male, I believe I sometimes swayed too far toward appearing stoic and calm. Beneath the surface, however, I smoldered in anger because I believed that I didn’t “deserve” my vision loss.

I also learned that belief in a higher spirit, whether it be religion or otherwise, can be helpful when coping with a dramatic human event. And as an optometrist, I now believe that no hope is ever too remote.

All I wanted from my doctor was kindness, not indifference; attention, not distraction. And most importantly, I did not want to be dismissed as unimportant.

I smile often now because I know I “dodged a bullet.” I realize that I was extremely fortunate to get most of my vision back. I am thankful that I can practice my profession as well as I did before my vision loss. In many ways, I believe I am a much better practitioner than before.

I will pause an extra minute to stand or sit squarely in front of each patient, eye-level to eye-level. I will look into each person’s eyes to search for any hint of disappointment, anger, or futility. I always speak more softly now. The tone of my doctor’s voice mattered very much to me, and I think it matters to my patients.

I’ve also learned that receiving information about vision rehabilitation services is critical when a patient is facing vision loss. It doesn’t take much effort from the eye doctor, either. Simply learn about the agencies and organizations in your area that provide low vision therapy (LVT), vision rehabilitation therapy (VRT), and orientation and mobility therapy (O&M), and provide your patient with this contact information.

My story is one of disclosure. Doctors of all kinds are prone to as many illnesses and disabilities as are their patients.

Some doctors can transform from their personal experiences. I did.