30 Years A Pirate

[James Jean, but for the life of me I cannot recall nor locate the name of this piece. It’s one of my top-5 favorite pieces of art, but oddly, I find most of his work disturbing (personal opinion only).]

When my ophthalmic artery stroked to darkness in the Fall of 1986, my vision became a very “before/after” experience. HOWEVER, I didn’t know it at the time; perhaps a better phrasing would be to say I could not articulate the experience until now.

8 months following the initial injury, I was declared healed. Not by any medications or surgeries, because in 1986, there weren’t any options other than to sit still and wait for the hemorrhaging to stop. Literally…sit very, very still. When I could see again, something had definitely changed, but I didn’t know what. Better phrasing? I simply could not remember what I saw before. After all, when I healed, I COULD see. I still needed the same glasses, no stronger, no weaker. Other than a small section in my left eye, I had all of my peripheral vision.

[1986: The one-eyed year. I loved these teal Converse high-tops, which I thought were a washed out green. Now I know why my sister didn’t want a pair.]

My immediate family knew something had changed, but much like me, they could not say how. So, for 30 years, that which was lost remained lost. Technology, while a wonderment, cannot fully analyze the subjective experience of seeing. What we all see is a very personal experience, wherein our brain constructs images based on comparisons to prior knowledge, incorporating billions of bits of information we take in every second. There is a life-changing talk on vision and how it is personal here. Seriously. This talk changed my life.

For 30 years, we’ve known with glasses I have 20/20 vision, and outside of the occasional retinal migraine, I have full peripheral vision. We know my left eye is weak in that I don’t choose to use it, but with both eyes open, any optometrist will tell you I “see”.

But I knew things were somehow dimmer. I know I drive Greg crazy by turning on lights all over the house. I know I’m happier in a house covered in windows. I know color is slightly different to me, but I could never say how. My sister and father who work in interior design both know I see color as variants of the truth, but even they could not articulate it. I know I run into doors which are left partially open.

This change in vision has always bothered me. It’s put me on a 30 year perpetual edge of never understanding why my arteries hemorrhaged and why no eye exam on earth could help me understand what I knew to be true: SOMETHING is DIFFERENT in how I see. The ambiguous anxiety has simply become part of the fabric of who I am.

As I’ve shared, I’m working with a “Soul Song Minister”, Stephanie, as part of my personal care plan to handle the stress of unstable glaucoma (still not stable…still embracing eye appointments…still trying to get pressures improved enough so I can hope for a successful surgical outcome…ever heard of anyone too sick for surgery? I am one exhausted eyeball. I meant…oddball). Stephanie figured out what so, so many have missed: One eye healed in 2 weeks, and the other in 8 months; therefore, I stopped using my left eye, and began a life of using only the right (after all, it actually WORKED), and after 8 months, they un-teamed. I cannot use them at the same time.

I’ve been told by MANY eye doctors, “Lori, use your left eye. You never use your left eye. It works. USE IT!” But no one told me HOW. My body forgot and I could not find the way back. Whenever I try to use my left eye, I find no benefit, I tire, and I get irritable. It’s really no different than being hand dominant. If you’re right-handed, writing all day with your left hand would be frustrating.

As it turns out, we’re built to be hand-dominant. We are NOT built to be eye-dominant.

[When I can’t drive myself to eye appointments, I try to have a sense of humor. My sister is the eternal sport about my eyes. I think my new Glaucoma Specialist is warming up to me. Maybe. My Neuro-Opthamologist never did, but to be fair, I was one.pissed.off.teen when she met me.  And 30 years of me is a lot to take (ask my parents). My Optometrist TOTALLY gets me. He gets to go to heaven after 20 years of Lori. My Retinal Specialist died in a plane crash. BOO. I really liked him. I almost punched my second Retinal Doc, which he did not deserve. No, really. Recovered teen jerk, right here folks.]

I learned the eye-dominance fact the hard way, and in ways I simply do not discuss. When I’m in conversation, my head always tilts to the right. Over time, not taking in information has resulted in some weird physical attributes: I can stare directly at a kickball rolling towards me slowly, attempt to kick it, and MISS. I cannot play pool. I pull the cue back, I push it forward, and I miss the ball almost every time. AS I’M STARING RIGHT AT IT. I’ve grown to hate gyms and sports of all kinds, which has exacted a toll. My left foot drops when I’m walking, something I’ve said out loud exactly one time. It doesn’t happen often, but it started so long ago, I realized it wasn’t a brain tumor, so I just let it be. However, I trip when I run, which has caused me to fall off more than one treadmill. About a year ago, my left hand started to curl tightly when I sleep so I now sleep with it flattened under my head. And there are the things my family knows that we do not discuss: Driving long distances has become too exhausting. In 14 years of marriage, I’ve driven our car to Greg’s hometown (10 hours) only once. It was quite a wake up call to a woman who once covered this country alone in her car. I rarely drive at night, and I never drive at night in the rain. But even worse than driving is that I’ve stopped reading books. With un-teamed vision, my eyes are tired just getting through a normal day, let alone adding the stress of reading a book.

[I was in rehearsals to star in Neil Simon’s “Barefoot in the Park” when I lost my vision. This was taken on my return to rehearsals, but I could only see out of my right eye. As you can see, my head is already tilting. During that year I had a habit of holding onto things with my left hand, as a way of feeling safer about what I could not see. It was like, “You thing there! You…WALL! STAY.”]

And now I know why: By not taking in information, the left side of me is just…going to sleep. So use the left eye! Simple, right? Nope…I can’t use JUST that eye. I have to learn to use both of them together. Visual therapy is a pretty new sport, and Sara successfully did it for over a year. IT WAS AWFUL. I would not choose it for myself, except that I got a glimpse of what I lost a few weeks ago.

Most of my work with Stephanie has been the work of remembering. Remembering who I was “before”, and how I saw. For just a few days, we captured it. It was…unreal. She got my eyes to team, and I suddenly, in that moment, KNEW EXACTLY WHAT I LOST.

I realized I had simply stopped taking in as much information as I had before. Use one eye, get half the info…makes sense. My sister always says, “Lori, you see exactly what you choose to see, but you don’t see everything. I don’t know how you do it, but you filter with your eyes.” In the hours after learning how to use my eyes together, I understood the filter: I take in information as still shots, and my brain turns them into moving pictures. This happens at lightening speed, but I do not take in moving images. I know for certain I do not, because in the hours after I used both eyes, I could barely drive my car. TOO MUCH INFORMATION was flying at me to filter and operate a car. It felt like someone hit a play button.

Let me clarify, I am a very good driver. I CAN see. But I drive slowly. Most of my friends and family say they feel very safe in my car, but they wonder if they’ll ever get to their destination. 2 speeding tickets in almost 30 years of driving; I thought I was just conscientious. In truth, I must slow it down as I take it in. I haven’t been in an accident since 1999, but it’s probably not a coincidence that at the angle and speed that car flew through the red light, I never saw it. I now know it was the perfect storm. I do a better job of scanning with my eyes when I drive now!

So, to summarize what I could now write a book about: I can see what you see, but I make the picture with half of the information. It means I subconsciously leave some things out. I can see what you see when I sit still and really stare at something, but by and large, I go through life making many assumptions. If I must see it, I use as much as I can. If it’s optional, I simple filter it out. Until I trip over it.

[After trying on wedding dresses ALL day, I finally found “the one”. My Mother asked, “Of the countless dresses your tried on today, why this one?” I had no idea. My sister piped up, “Because she can SEE this one. It has sparkles all over it, including all the way down the train. These white dresses are meaningless to Lori. They are just…all…white to her.” Add in a sparkle tiara (which I loved as much as that dress) and sparkle necklace, and I was SET you’all.]

In the moments after I received “the full story” I took a walk down a unremarkable hallway. Doors which had been a red-brown were now full magenta. I could see the stain on the ceiling in the exact second I saw the walls. Everything in my periphery was equal and somehow…large. Round. My world went from flat to…full. It was COOL.

But tiring. And in a few days, my eyes resorted right back to their comfortable 50%. 50% is easier. It’s boring, but peaceful compared to your bright world. In your world, the Dunkin’ Donuts sign isn’t just hot pink. It’s HOT pink. I had no idea that sign screams at you with all that pink and orange. The pretty blue gray house at the end of my neighborhood is actually a robin’s egg blue. In your world, I wear way too much makeup and my glittery earrings are gigantic. In my world there is only one kind of hot pink, I like gray-blue, and I love my makeup and my sparkly earrings.

But I trip on things left on the floor. And honestly, I do LIKE the bright, round, moving world I visited. It was spectacular. I read a book! I decided to go back.

I’ve started the long process of visual training. The exercises are HARD, and they make me bunchy inside. I can use my eyes together for about 5 seconds before one takes over. I feel the sides of my body battling with each other. I don’t want to discuss the insomnia this is causing. I am tired in a really weird, restless way. I do have the girls to keep my spirits bright. In a moment of wasteful pity, Kelly left me a sticky note which read: “Although it’s been tough, there have been many moments of hystericalness in my timeline of being…well? A pirate.”

[I LOVE this old, worn picture from the applause after the play. At this point, I had a sliver of eyesight out of the top of my left eye, and I was full of hope for a full recovery. I was dating the now best-selling author on my right (my first boyfriend…I thought I was a movie star), and the young man to my left is a lifelong friend. He is now a world-renowned Hospitalist, doing amazing research out of Mayo. By my expression, you can tell I’m staring right at my Grandmother, who stood up and yelled my name.]

NOW…you might think I am sad to have lost 30 years. Actually, quite the opposite. My 30 years as a one-eyed pirate came with gifts. You know the saying if you lose one sense, you will gain it in another? That is quite true. I use a thermometer when I cook, but I can smell temperature. I can smell EVERYTHING, which is why our litter boxes are in the garage. My Mother calls me the bloodhound. The joy I feel when I smell herbs and lemons and nuts and…I can’t describe it.

This is a gift. I may not have developed my love of cooking without this gift. That’s some priceless stuff, my friends.

In seeing the world differently…well…I see the world differently. I see people differently. I take in information about people differently. Things which stand out to some perhaps don’t register with me. I hear more and see less. That’s not to say I’m a superb listener (wish I were!), but I know my friends sense a non-judgemental love in my presence. I would pick up on you having a bad day before having a bad hair day 100% of the time. I see people’s spirit by taking in their posture and their tone, and a billion other pieces of info based on things I feel, not see.

This is a gift. I would not wish to change this facet of myself for all the eyesight in the world.

I’ve been forced to accept there are some things I cannot change, and in the big picture, I’m not in charge. Herein has been my life’s challenge: accepting I am not in control of my vision in a larger sense. Because I left 50% of what I saw in the hands of God 30 years ago, I am kinder. I was not kind as a child. I am more apt to ask questions I would not have before. If you think I’m a know it all now, you should have met me at 14. My life has to be about more than aesthetics and speedy living. I simply have no choice.

And when you see it in the long view, God gave me THIRTY YEARS to figure this all out. And he gave me good VISION in that time. That’s more patience and grace than I deserve.

This is all a gift so profound in its impact, I would never choose a life that had taken a different course.

[I don’t love sparkly things LESS. I love them MORE! Mom gave me this for my birthday. A brooch only a half-vision pirate could love. In my world, this matches EVERYTHING.]

So what’s next? I don’t know. Remember, I’m not in charge here. I can use both eyes for about 5 seconds at a time, and sporadically they team a couple of times per day. However, I’m now taking eye drops I’m technically allergic too (again, in an attempt to increase my odds of a successful surgery), and it’s making for some long days. I’m trying to stick with my exercises, but honestly, they piss me off. They’re supposed to. Physical therapy causes things to grow that weren’t there before, and it’s hard. Ask athletes, stroke victims, and kids with learning disabilities. It’s irritating to MAKE your body GROW. Good news: I gave up beer in a vain hope ANYTHING would help. So if my eyes are growing, my waistline is not.

And truth be told, I might do all of these things and still lose my vision. That is not my story to write. I know I’m OK in the part I am writing. I’m treasuring the gorgeous nearness of God I feel all day, every day. I no longer hyperventilate at the Eye Institute. I love this act of remembering the good stuff from 30 years ago. I love how my life no longer feels fragmented, and questions which have tormented me for decades are now answered.

A pirate’s life or not, I’m really OK. I lead a blessed life, a perspective some only get when they see the whole picture; the good and the bad. I am one of those people.

Wisdom does not come easily, or without some serious sweat-equity.

Wisdom Comes Suddenly.