‘I had a stroke and didn’t know – now my sight will never recover’

I’ll never forget these words – “You’ve had a stroke, Carole”. I asked without hesitation how that could be.

We all know what a stroke is supposed to look like, right? The sudden inability to speak. The uncontrollable gagging, choking, or slurring words. The drooping eye or mouth. The loss of muscle control on one side of the body. These are the familiar warning signs. We rush to the emergency room.

I had none of those signs or symptoms.

It all started with a fairly routine eye examination. A follow-up to my cataract surgery. I was not expecting anything unusual.

I had noticed over the past few months a distinct change in my peripheral vision. When I walked, I did not seem to have the normal view. It was much narrower and blurry. My balance was off. Driving had become difficult. Turns were challenging since I did not see the corners clearly. Although I had never been very good at parallel parking, it was suddenly near impossible for me.

I thought I’d be up for yet another new prescription. It seemed as if every few months I was off to the optician. My bedside drawer had become an eyewear outlet! The cost… I could have taken a cruise! Another annoying part of getting older.

The eye examination was quite standard. Everything about it felt so normal.

My doctor, someone I trust completely, entered the room and told me everything seemed fine. She asked if I had noticed any changes in my vision. I told her about the peripheral problem. She listened intently, rolling her chair in front of me. She told me to look straight ahead and then held up her fingers on either side of my face, asking how many I saw. Then pointed a light pen. She frowned.

“I need you to come back in no more than four days. I want you to take a ‘field of vision’ test. It’s important. Four days… No more. I think you may have had a stroke, Carole,” she said gently.

I wasn’t sure if I heard her correctly. I caught my breath. How could I have a stroke and not know?

“It’s not unusual. Older patients often attribute sudden serious changes in their sight to getting older. They wait until their next scheduled exam. Like you did.”

I was numb. It was too much to take in.

“We’ll talk about it more after the test. Make the appointment. Go home. Limit your driving. Whatever steps prove necessary, we will deal with them.”

Three days later I took the test. Another simple one. This time, I faced the screen as lights of different intensities flashed on all sides of me. I held a clicker and had to hit it each time I saw a flash. I knew I was in trouble before the test was over.

I only had to wait a few minutes before the doctor entered the room. She pushed aside the examination table and pulled a chair close to me. “I have the test results. Let’s take a look”. Four sheets of paper that would change my life.

There was, of course, a lot of technical jargon and numbers I did not understand, but the final page made everything clear. It was a photo of my brain. The top left side was covered in black. The right as well, but less extensively.

“What you see here, Carole, is the damage that has been done to your eyes by the stroke. One or more blood vessels that support your sight have ruptured. The damage to your left eye is significantly more than to the right, but both have been impacted. This is why your peripheral vision is lost”. We were both silent.

What do I do now? I could barely get the words out.

“You need to contact your primary care physician immediately. Your neurologist as well. I will make sure all the paperwork is forwarded to them. They will have it tomorrow. Don’t wait. This needs your full attention”. More silence. “I’m sorry, Carole”.

I walked out the door and headed to my car. Nothing seemed to have changed. Yet everything had changed.

The ensuing few weeks have been a whirlwind of activity. More medical procedures than I’ve had in my entire life; so many blood tests, EKGs, a sonogram of my carotid artery, transthoracic echo, brain MRIs. Some of them were frightening. I wanted to learn as much as possible about a cerebrovascular accident, a CVA as they call it. I knew it as a stroke. I asked lots of questions.

People were moving quickly to get me from one test to another. The preparation of a patient profile and now a patient plan. All the while, incredible kindness and patience demonstrated by everyone I saw; administrative people, technicians, assistants, nurses and doctors. I am blessed and grateful. I have excellent care from people I trust. They are honest with me. Sometimes it is hard to listen. I want the diagnosis to be different. I go into denial occasionally, but they push me forward.

Now begins the post-stroke hard work. Physical therapy with a specialist in traumatic brain injuries. They will work to retrain my brain to utilise undamaged parts, habituating it to what has been lost. My sight is not recoverable, but a comfort level with my new limitations is possible. No guarantee though. They will also work on my balance, which has been impacted. I have bouts of disabling dizziness.

Medication has been prescribed. The side effects have been severe, so we try new ones.

I will have to learn to deal with other issues for which there is no solution. Loss of short-term memory and difficulty focusing, which should lessen but not disappear, as time goes by. Anxiety, depression and exhaustion. My job is to manage them.

Why am I sharing all of this? Because I learned something important you might not know. My doctor said it best: “Your eyes are not just the window to your soul (poetically speaking). They are the keys to your health – especially as we grow older! Strokes, diabetes, and other serious medical conditions can be detected by an eye examination”.

If you notice a significant, sudden change in your sight, do not wait! Get your eyes checked immediately and have regularly scheduled exams. I learned the importance of this the hard way, but you don’t have to.

How often do you get your eyes checked? Were you aware that you could have a stroke and not know about it?

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