PERSONAL STORIES

My Story 

My first day of retirement was February 1, 2024. I woke at about the same time as ever, 5:00 am and lazed around until about 7. I had a leisurely breakfast and was looking forward to hearing my cello teacher in a recital at a private residence in the Oakland hills. It was a fundraiser to raise money for musical instruments for the schools and was organized by a women’s club. We were treated to coffee, tea and a variety of sweets afterwards along with great conversation.  

I stood in the foyer when I came home thinking about the delightful first day of a new chapter in life, but something was not quite right. For the previous few days, I had a sensation as if my eyelid was drooping. I would look in the mirror and would not see any sign of drooping. I was experiencing the feeling again, so I looked in the mirror in the foyer and saw nothing wrong with my face or my eyes, yet I sensed something was not right. Instinctively I placed my right hand over my right eye. All seemed well as for vision in my left. I then placed my left hand over my left eye.  Uh oh. what the hell? What’s going on? I could see from ceiling to floor with my right eye! Could I see from the ceiling to floor with my left eye? It had seemed fine. I again covered my right eye and alarmingly I could only see from eyebrow height to floor. What had happened? What was happening? I repeated the process of eye covering to assess what was going on. I went to the bathroom vanity mirror and would close one eye then the other. I would put my hand in salute position against my left brow, close my right eye, and move it forward until I could see it. No vision above the horizon line. My peripheral vision seemed ok. I was confused. Was this a retina issue? I felt no pain or other discomfort. Was I lucky that maybe I caught it in time whatever it was? Perhaps it was just a partial tear? 

I Googled “torn retina.” The first thing I saw in the results was an alert that if you have any pain related to your eyes or any questionable feelings to seek medical help immediately! Since it was early evening, I decided to go to the emergency room. Fortunately, it was a slow night, and I was seen quickly. My blood pressure was a bit high but that was to be expected in the emergency room. Other vitals were taken, basic visual testing done, questions asked. I was told they were getting the MRI set up for me. The results were immediate, and the doctor came to my room and informed me that I hadn’t had a stroke or anything of immediate concern healthwise. It didn’t appear to be a retina issue but there was an abnormality, an apparent sign of swelling behind my eye. He felt I was ok to be discharged but made an appointment with an Ophthalmologist for the morning.   

Tests performed by the Ophthalmologist showed that I had what is called Non-arteritic Anterior Ischemic Optic Neuropathy or NAION event. Blood stopped feeding the optic nerve causing unknown damage resulting in vision loss to the upper right quadrant of my left eye. He said it was like a lightning strike and that there was nothing I could have done to cause it. It was the result of an “architectural issue. My “disc-to-cup” ratio was smaller than normal. In other words, the little opening that the blood supply passed through was smaller than normal and either a clot caused an eye stroke, or inflammation pinched the blood flowing through the disc. He said nerve damage was irreversible but to remain optimistic. To be sure of his diagnosis he referred me to a retina specialist three days later. The retina doctor concurred with the Ophthalmologist, and her testing showed more reduction in vision to include the upper half of my vision in the left eye. We would have to wait for the swelling to go down to get an idea what damage may have taken place.  

A follow up appointment was made 4 weeks away. During that time I lost all sight in the left eye. The doctors had said there was no treatment but a controversial steroid, Prednisone. I think the controversy related to the possible side effects. It was an aggressive treatment for 15 days and it did what it was supposed to do, relieve swelling. With the swelling down some field vision returned along with a little better acuity. Succeeding follow-ups showed further improvement and some progress could continue for months up to a year.  

Four months after the onset I have probably seen the last of sizeable improvement but will remain optimistic. 

Like others, I experienced shock and disbelief. I had to cancel travel and classes and basically put life on hold until I could get a grip on what happened and what the next steps would be. It turns out that a family member shared that he had lost vision in his right eye from a NAION ten years ago. He never mentioned it to us. He does pretty much everything he has ever done and that it took him about a year to adapt. Very promising for the future and it relieved a lot of fear and anxiety. 

I’ve done lots of research. Joined an email NAION group and saw many posts from newbies sharing their fears and anxieties over something that many health care providers know little to nothing about. I also noticed in my research the lack of a website that addressed emotional trauma or offered much in the way of coping skills and practical tips on living with vision loss.

One of the members said it would be great if someone could make a website. It so happens that part of my post-retirement plan to augment retirement income was to get into website maintenance. The classes I dropped were in website development. This NAION Life website is a silver lining to the lemons thrown my way.  

Onward and upward! 

Michael B. 

April 2024 

Update September 2024 

I didn’t notice a change in balance initially because I had pulled back on activities. The first I became aware of it was a few weeks after onset I was out to dinner with a friend. The imbalance was noticeable in the restaurant when I got up from the table to leave. It was short lived, like a mild vertigo event. We went to an evening outdoor festival and that’s where I really began to notice. Out and about where there were people and curbs and uneven surfaces and lots of different sounds and other distractions. I don’t hear well out of my left ear and went to walk around the other side of my friend and found I was making a larger arc around than necessary and I thought I should stop and hold on to something. I slowed down and the feeling subsided. I didn’t want to alarm my friend and didn’t say anything.

I believe it was a combination of having to split my awareness in so many different ways. and account for so many different distractions, uneven surfaces, people coming and going from every direction, night light, shadows, a myriad of sounds from every angle all the while trying to listen and be present with my friend. It was not pleasant. My other senses got into the action as well. Apparently, they naturally wake up and begin to come to the aid of an injured sense, in this case vision loss. This is all new stuff to my brain and all its functions and it’s like it takes the other parts some time to adjust and work together.

This kind of thing would repeat several times over the coming couple of months.

The good news is that it has subsided greatly withing a couple months.

I believe that when one comes up to a life challenge that it is best to work with it until the mind, body and spirit come to an understanding. I would not shy away from getting out in public and practice mindfulness. That is, having a little talk with myself, a little meditation if you will, and acknowledge and accept that I need help from all my senses. It might sound odd but it really helped. Another take on sense and sesnsibility.

“A word of encouragement, 2 years ago I had an eye stroke losing vision in my right eye.

Needless to say depth perception has been awful. I’ve practiced throwing and catching with grandkids and today I won an egg toss at a family reunion with a brother in law as a partner.

And to boot we cracked the egg after we won to see if it was hard boiled or not. It was a real egg!! Keep trying to move forward folks! It’s all there really is anyhow. Who would have thought I’d win in a million years?”

I lost mine at 49 in a freak “trip and fall” accident.

The biggest adjustment was the first year. It’s now been almost 9 years for me.

Here’s some notes I wrote about adjusting to it.

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The first year of being monocular

The first year is a lot of learning to adjust to the new normal. Take it as a challenge to actively train for the new normal. Be patient with yourself and do a lot of practice to help develop the hand eye coordination. I was also very wobbly when I’d walk. I’d be walking straight and sometimes loose my balance a bit. It’s been 6 years for me now and it’s gotten better – but still occasionally wobbly.

Pour things by looking down into what you’re pouring into, or resting the thing you’re pouring from on the lip of what you’re pouring into.

Bounce a tennis ball against the wall and catch it. Or bounce it in a V pattern by throwing it down at the floor between your feet from one hand and then catch it with the other hand, and back and forth.

Play ping pong (this one was really good for me, both for coordination and mentally). Bonus – EVERYONE looks goofy when chasing a bouncing ping pong ball.

I also played frisbee with the family. (Playing catch with a softball and a softball glove is also good – you might need to work up to it)

We also did a lot of walking and hiking. Sometimes on the hikes I’ll use trekking poles just to help with balance.

To help me retrain knowing where my right side was, as I’d walk down a long hallway at work, I’d lightly touch my pinkie finger against the wall, or tap the table top or counter as I’d walk by.

For any activities that run late and into evening, try to carry a flashlight. We were up on a hike my first year and as the sun went down and all of a sudden I couldn’t tell any depth at all. Everything just flattened out visually. It was really scary coming down that one. It’s gotten much better with practice and preparation.

With practice, it seems to me that I kind of use more muscle memory for some things than just trusting what I think I’m seeing.

I’m a little late for Friday favourites but yesterday I practiced rappelling off a building. I’m 55 years young and my 4 year anniversary of my injury is coming up Aug 1st. People don’t have a filter and sometimes say stupid things. It makes me fired up when anyone even suggests I have a disability. I believe everyone has different abilities and have never once felt I have a “handicap.” My prosthetic isn’t sitting properly and my ocularist says it will be another year till I can get another redone as my face is still healing after losing the orbital floor as well as the eye. So I ordered a bunch of cool patches and carry on carrying on.