September 7, 2017: Every Eye Doctor

One year ago today, Matt and I returned to the deadline-driven task of obtaining prism lenses to correct his double vision before he left for a work conference on Saturday. Two days prior, he’d seen an ophthalmologist who’d suggested special lenses that worked like reverse kaleidoscopes and referred Matt to a (somewhat) local specialist to either create the lens or create a plastic attachment to regular lenses. Matt told me he had an 8:30 a.m. appointment with the specialist.

After G and H boarded the school bus and it disappeared around the corner, Matt and I climbed into the car to drive to the specialist’s office. When we arrived, the receptionist informed us that there was no appointment scheduled for Matt. In fact, they’d never heard Matt’s name before and the doctor we thought we were seeing was on vacation until next week. We scrambled to figure out what had happened: was the mistake ours or theirs?

And then Matt’s phone rang. The ophthalmologist he’d visited two days prior was calling to ask whether Matt was on his way to the 8:30 follow-up appointment he’d made with them.

I remember how stunned I was by the doctor’s phone call and how angry I was at myself—for being stunned and for not questioning, or at least confirming, Matt’s appointment. Hadn’t I learned my lesson in North Carolina about assuming appointments and reservations?

The truth was I hadn’t and I wouldn’t—not for many more weeks, possibly months. Trusting Matt, believing that he was wholly in charge and wholly in his right state of mind, was second nature, was an exercise in habit, but also hope. Matt’s struggles in North Carolina had been more than a week prior. Since then he’d had Gamma Knife and Avastin and it was easy to tell myself things were better, even though the reality in front of me suggested otherwise (and I’ll expand on that idea more in tomorrow’s post).

After Matt’s follow up, I dropped him off at work and went home. I spent the day on the phone, discussing Matt’s steroid dose with the radiation oncologist, coordinating Matt’s next MRI with Duke—we settled on an October 4th MRI at Columbia, happy to avoid another plane flight to North Carolina,— and Googling prism specialists. Between Matt’s mother, Matt’s eye doctor, and me, we called every eye doctor in New Jersey and it became increasingly likely that Matt would have to delay his work trip until at least Monday afternoon.

Then, a friend of a friend of a family friend’s son who worked two hours away in a children’s eye clinic agreed to fit Matt in before his first appointment the next day. We breathed a sigh of relief. Assuming no surprises, Matt would have his glasses by the end of the next day.

Matt could have left for his work trip late, arriving Monday instead of Saturday. Likely, he could have skipped this work trip altogether. But the idea of missing even the first few days of this particular corporate event upset Matt. There was no question that he loved his job and would do anything for it, but I think, maybe, to Matt, missing any part of this work trip would have been an admission that he wasn’t ready to make. We (Matt’s parents and I) weren’t ready to make that admission, either. And more than that, we didn’t want to see Matt sacrifice anything in his life because of Glioblastoma. Or, maybe more accurately, we didn’t want to see him sacrifice anything more than he already had.

As I’ve said so many times in the past, the cruelty of this disease is the way it strips you of your life, of your loves and dreams and passions, before it strips you of your breath.

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