The way society often talks about people with Down Syndrome is infantilizing at best- speaking to them like children and implying that they are angelic and brought to earth as blessings because they are so pure and innocent. To be clear, Billy is a blessing to me, not because he has Down Syndrome, but because he’s Billy.

With just the first few opening bars, Richard transformed, and he came alive. With a crooning voice, dripping in a warm vibrato, I heard Richard belt out a few crystal-clear notes. I handed him my microphone and with all the pizazz of a seasoned jazz singer, he sang the song in its entirety, never missing a single note or lyric.

My attention span was equivalent to the average goldfish or toddler; I could focus on anything for about thirty seconds before instinctively reaching for my phone. I felt addicted (and this is not a word I use lightly). I’d be sitting up at 2AM desperately needing to use the bathroom, telling myself, “Okay, I’ll finish watching this Reel and then I’ll go,” over and over again until hours had passed. I literally could not tear myself away. If you are ignoring your bodily functions in favor of using your phone, you have a problem.

In 2022, I think many of us are beginning to realize social media is a “highlight reel,” and it’s both unhealthy and unrealistic to compare ourselves to others’ lives on these platforms because we’re only seeing the best, most curated parts. For Sickstagram, however, the opposite applies. We are only seeing the sickest people and, for the most part, we are only seeing their worst days.

I thought I needed to chip away at the debris at Roland’s surface, digging miles below the earth to find the diamonds. The more time I spent with him, though, the more I began to discover that the diamonds were just underneath, under a fine layer of dust that could be uncovered with only a gentle breeze. There is one specific moment that, to me, proved that the world within Roland (and perhaps every severe Alzheimer’s patient) was so much more complex than I had ever envisioned.

In the entirety of the month leading up to surgery, I’ve been drowning in anxiety, just absolutely terrified to relive those experiences that were so truly horrific. When I think about this surgery, I can’t breathe. Maybe this is normal, considering I’m about to allow someone to slice into my spine and abdomen and do a lot of pretty wild things in there, but I can’t help but wonder how I might feel if I hadn’t had such bad experiences in the past.

Three years ago, on our very first date, Pepo asked me a question no one had ever asked me before- “Are you still disabled in your dreams?” In retrospect, I suspect he doesn’t even remember asking that question, but it was what made me realize (on hour two of our six-hour-long first date) that he was the one.

Just the thought alone of yet another doctor telling me that I’ve exhausted all their resources and that there’s nothing more they can do for me makes my bones liquify, and I can feel myself choking on that tangible ball of despair that’s forced its way into my throat so many times before.

There is a very particular sadness that emerges from interacting with people with dementia, especially over long periods of time. That comes along with watching a person disappear in tiny, infinitesimally small pieces every day, like a block of marble chipped away by the world’s slowest and cruelest sculptor. You mourn for the person you lost that day, that month, that year- knowing that even still, there will be more to lose.

I am nothing but my exhaustion and pain. All that remains is a hollowed husk, a half-abandoned shell of a person that once was, a soul devoured.