To See the Stars

The challenges are relentless. But it’s not in my nature to ask “Why me?”

I’ve always known that I didn’t have a special pass from the Fate Department. No “get out of jail free” card. No winning raffle ticket. I have, however, wondered just who, and in what lifetime or universe, I made so angry that I have to go through all this.

But I never believed I would reach this point. And while we are working (still, always) to manage outcomes, there is no guarantee that anything positive will occur.

The one good thing, as I said in a previous post, is that the back of my eye, where all this began, is still stable. The retina shows no signs of new inflammation, damage, or debris. There is still swelling, scars, and things floating around, just none of it is new.

There is a cataract in my left eye that is growing slowly but making itself heard. And so I had an appointment on Monday of this past week with Dr. Afshan Nanji, the doctor charged with getting my sight back as much as possible right now. A cornea specialist, she is Princeton and Johns Hopkins trained. She was like a more relaxed Dr. Lin, just as knowledgeable and clear, but not as intense. My friend, Kat, came with me, and I was grateful for her help and companionship as the appointment stretched past three hours.

While Kat and I did not come away with all the answers, we came away with many, and the beginning of what I believe will be a great relationship with Dr. Nanji.

And so we began with the usual topographic pictures of my eye. Did the usual eye exam … the Snellen chart, the “Which is better? One? Or two? One? Two?”

I could tell things were not going well. Kat kept looking kindly at me as I struggled to decipher the letters. Then there was the “glare” test, where the tech shined a light into my left eye to replicate the effect of the sun’s glare or the brightness of oncoming headlights.

“Tell me the letters you see.”

Once that light hit my eye, however, the letters, hell, the whole world disappeared. The bright light was painful, the reality was frightening, and I suddenly felt very small.

When Dr. Nanji came in, we started with my long list of symptoms from the past two years. (Every time I say that or think about the number of times I have made my way up to the top of Marquam Hill to Casey Eye Istitute, I am shocked.)

She was clear about what this cataract surgery could likely (or at least would be intended to) improve. Acuity is one of them. Another goal is to decrease my light sensitivity (photophobia) enough that it will render retinal surgery unnecessary. We want to keep sharp things and lasers away from my retina.

We discussed the surgery in depth. Because I cannot take corticosteroids (prednisone) that help fight inflammation and infection, I must have an injection in my eye prior to surgery. Thsi is as icky as it sounds. Of course, a shot can also increase the risk of infection.

I would also have to have injections of anesthetic in and around my eye, and I would have to look at a bright light for not a short amount of time.

Which led to the question of “How do you do with general anesthesia?”

I looked Dr. Nanji right in the eye and said blandly, “I vomit. A lot.’

OHSU did not believe me with the second and most difficult surgery after the fall. They did believe me when I was back for the third operation in July of 2017. They threw every anti-emitic at me and it worked. Dr. Nanji assured me that she would replicate everything they did.

Then came the elephant in the room. My corrected vision last week at Dr. Lin’s office was 20/100. She said there was no real physiological / retinal cause for the decrease in such a short time. And, since we had talked DMV rules in the past, that was the discussion.

Two eye exams and an average corrected vision of 20/90, and Dr. Nanji was kind but blunt.

“You cannot drive.”

I explained the rules to Kat … That 20/20 to 20-40 was unrestricted, everything is fine; 20/50-20/70 was restricted; 20/80 and worse was a no.

“You know, we did everything right. Everything we were told to do. I had my eye removed within the three week window. Did not even try to save it after we got home to the States. And then in late summer of 2017, the symptoms began.”

One in 3.5 million.

“This was not part of the plan.” Kat and I said in unison, not even looking at each other.

I know that we are working hard to make this situation temporary, but it’s so difficult to face. I live in Damascus, east of Portland, north of Oregon City. No one I know is out here. All of my Parkinson’s exercise classes are in Tigard (boxing and dancing/drumming) or the west side of Lake Oswego (tai chi). I can ask Jared to drive me on a couple days of the week, but my great fear of being a burden (which used to make some people laugh because by virtue of who I am, I’m kind of a burden) would come true in about a day and a half.

Kat was so kind as we left the office that afternoon, saying that we would get things sorted out. That I wasn’t alone. I love her for that. I am trying to be strong. I know people have had to face so much more than I. So I will do what I always do and tell myself with a smile on my face if not in my heart,

“Suck it up, Buttercup. You have work to do.”