September 5, 2017: Prism Lenses

With the long holiday weekend behind us and doctors’ offices reopening, Matt and I launched our next mission: glasses for his double vision. As a reminder, we’d told Duke that Matt’s double vision was worsening and failing to respond to the increased steroid they’d prescribed. Duke suggested, on the Thursday before Labor Day weekend, that Matt look into glasses. That day, we scrambled to make an appointment with a local ophthalmologist.

The appointment with the local ophthalmologist was scheduled for Tuesday, September 5th. Matt’s mom drove and accompanied Matt because I’d previously planned play dates for G and H to reconnect with their friends before school, and I felt guilty canceling at the last minute. (That playdate is one G still talks about.) As I’ve said so many times, not lucky medically, but so lucky to be surrounded by people willing to step in.

Matt texted me throughout the appointment, letting me know when he was called in from the waiting room, texting me pictures of himself wearing the frames he’d picked out, and then calling to let me know he’d need another appointment with a prism specialist because the ophthalmologist could only do so much. We needed a specialist to attach prism lenses to the glasses. In a text to a friend, I described the special lenses as a piece of plastic that goes over the lens and works like a reverse kaleidoscope.

The mission was not without a time limit. Matt was scheduled to leave for an annual work conference the next week. We both agreed he should have the glasses by then to help him navigate the airport and function at his best at the conference.

At 5:09 p.m., Matt texted me this panic-inducing message: P.S. I’m blind.

I remember the way my heart dropped into my toes as I read the message, the way I tried to keep the anxiety from showing on my face as I helped G and H pack their first day of school bags for the next day. Things with Matt had a tendency to change fast—sometimes within the space of heartbeat—and it wasn’t outside the realm of possibility that his vision might have deteriorated even more in the hours we’d been apart. I responded: Is that an official diagnosis??? Worse than double vision????? (The extra question marks were obviously necessary to convey the urgency of the question.)

The struggle I was facing was this: Matt’s processing abilities had already started to falter—the forgotten hotel reservation, the confused MRI appointment, mixing up words—and I was beginning to worry that perhaps he wasn’t describing the trouble with his vision accurately. I was beginning to worry that when he complained he couldn’t see the television or read a text message, he wasn’t being bothered by double vision, but something else.

Matt answered: Honestly, I can’t see. I don’t know what you just wrote.

At this point the text messages for the day end and I assume I called him.

I’m relying heavily on the text messages to tell the story of today and the story of the next few days. My memory of the lengths we ran and how fast we raced those lengths to obtain glasses to correct Matt’s double vision is completely tangled. What happened when and why is a mystery I will uncover for myself as I write the story.

What I do remember is that one year ago today, our battle was against the double vision. There was no question in my mind and Matt’s mind that the Gamma Knife radiation would work to shrink the tumor in the right parietal lobe, and the poliovirus would work to shrink the tumor in the left parietal lobe while giving Matt’s immune system the strength it needed to fight back any future recurrences, to destroy whatever part of the tumor was troubling Matt’s vision. Duke remained nothing but positive.

The theme of the story of this year is found in the story of today, in the fact that we could focus on the small fire, on finding a temporary solution to the double vision, on ophthalmologists and frames and prism lenses, because we were so wholly full of hope, so steadfastly sure, that the main fire was under control.

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