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In the fall of the prior year, 1994, we’d gone to Europe. I’d never been and Shane wanted to return, both as a likely last-hurrah and to share it with me. While he’d had a few minor health incidents in the months leading up to our trip, as well as a decline in t-cells, he was still relatively healthy. But our 5 week journey to France and Italy took an increasing toll on him as each day progressed.
By the time we got to Rome, from which we’d depart, it was physically apparent how taxing the trip had been–you could see the strain on his face. All of the walking and stairs had been too much, and those last few days he would journey out from our hotel only once each day, to quickly take in a sight, sometimes just from a taxi cab window, and then we’d return back to the hotel again.
Too weak to go out for meals, I’d bring him takeout — he was craving McDonald’s — nd I became inordinately familiar with their location near the Spanish Steps.
Upon our return to the states, his health began to quickly spiral downward. He began having mobility issues. Walking down a straight corridor, he would suddenly veer to the right or left, or stumble. Driving, he would either abruptly stop short, or too far into a crosswalk. It soon began to affect his speech, as his words became muddled.
His eventual diagnosis was Progressive Multifocal Leukoencephalopathy (PML), which essentially is a lesion which grows on the brain and increasingly affects the motor skills.
Article continues belowIn just a few months, he went from a vibrant young man, filled with exuberance about life and excitement about our upcoming trip, to a bedridden, shrunken figure, rarely leaving our bed.
While we had hoped to keep Shane at home and comfortable, his body and organs began to fail him, leading to his hospital admittance.
In just two short weeks, he lost the ability to speak, as well as the ability to blink to signify “yes” or “no,” and even to squeeze my finger. He was fully alert inside, with all of the knowledge and emotions he’d always had, but he was completely unable to communicate any of it.
Each night, after his mother had returned to our apartment and all visitors were gone, I would crawl up alongside him in bed. I would talk to him about my love for him, share the news of the day, and remind him of all the wonderful things we’d experienced together.
I talked often of Italy and France… Of the countless kitties of the Pitti Palace. Of the jasmine-like scented grapes we ate in Saint-RÈmy-de-Provence. And of our last night ever of sex, in Rome, when it became clear the end would soon come.