I often wonder what it must be like to be you.
What must it be like to be stared at or whispered about or pointed at in public, or again to be treated like a curiosity or as somehow not relevant…and yet to ease the anxiety of those around you by responding with only a sweet smile?
What must it be like to be left unchanged for too long even when you voice your discomfort, or again to be ignored in a group because too much is going on and you languish in front of a video, or to be the one person in the room that a newcomer doesn’t say hello to upon entering…and yet never to hold a grudge?
What must it be like to depend on others to dress you and move you from your bed to your chair, and to brush your teeth and wash your face, and to puree your lunch and feed it to you on a spoon…and yet to teach those of us who offer you our service modesty and humility and patience?
What must it be like to have no way to articulate frustration or pain, hunger or exhaustion, satisfaction or gratitude…and yet to express yourself in a language of clicks and sounds and smiles that fills me even as a writer with a joy I can never get from traditional words?
What must it be like to endure more surgeries in a few years than most people do in a lifetime, to suffer seizures that take over your mind and body and leave you beyond your own control, to undergo breathing treatments from the nebulizer and get medicines injected through your feeding tube all day and have your every breath and heartbeat monitored all night…and yet through it all to exhibit a perseverance that few marathon runners can match?
What must it be like to have such low muscle tone that you’ll never walk and will always be (as a kindly doctor told us early on) a good sitter; that you can grasp little, lift less and manipulate least of all; that you struggle to swallow textured pureed foods…and yet to exhibit a kind of strength that goes far beyond the physical?
What must it be like to have even those of us who adore you most underestimate you because your unmet needs are simple or surprising…and yet to offer only unconditional love?
What must it be like to inspire many with the smallest gesture, to instill devotion without asking for it, to encourage generosity through your presence, to teach perspective in times of difficulty…and yet to take no pride or claim no credit?
What must it be like to be viewed as imperfect and take no offense…even though you’ve achieved a perfection we can’t appreciate in this world?
What must it be like? One can but wonder.