Out of necessity, I must invite others into places and spaces you thought were sacred. Every trip to the toilet. Every early morning when my hair is a mess and my retainer is still stuck to the roof of my mouth. Every time I take a shower, even on days when I might like to let the water run, sing badly, and be alone with my thoughts. Sometimes, as I let the water wash over me, I do have a moment of solitude in which my body is nobody's introduction to the health professions. Nobody's "are you done yet?" or "are you sure you want it that way?" But when that moment passes, there's reality, and someone to instruct to scrub between my toes. What I'm describing is why so many people fear old age and disability. The idea of entrusting the processes of our bodies to someone else seems like it lacks dignity. But here's the thing. It doesn't have to.
There is tremendous dignity in caregiving done right, in recognizing that all people need each other. As much as I would love a "carefree pee," unassisted and unaccompanied sometimes, in those moments of dignity I feel lucky to understand the beautiful gift of interdependence and to speak frankly, not squeamishly about the human truths of what it takes to keep a body and spirit in motion. That said, it is one of my personal missions to help others understand the enormous responsibility of caregiving and to ensure that everyone knows what it feels like to be assisted without having to feel anxiety, or guilt or to fear being perceived as a burden to others. These are emotions I struggle with from time to time, as I'm sure all who rely on caregivers do. But when someone cares for me respectfully and on my terms, I feel so much peace. It's like the whole world says "I got you."
That said, I want to share the letter I normally distribute to my staff of personal assistants (PAs). Maybe you're in caregiving. Maybe you're not right now, but you will be. Maybe you never will be. But no matter who you are, I hope this letter will make you think and perhaps say to another person, "in whatever way you need me, I got you."
Dear Personal Assistant,
I like my shoelaces double knotted and my hair parted to the side. If you’re putting on my jacket, it is best to start with my left hand, which in all its gnarled glory possesses a certain omnipresence in photos like that relative who creeps in the background every time there’s a camera around. Buckle my feet in tightly or I will unintentionally kick you. These are some of the things I would tell you if you were assisting me. These are some of the ways that my disability colors every aspect of my life. I was born with it, it has shaped my being, and I would not trade it for the world. This is me and I have faith in my design. However, that does not mean it always feels fair or easy to need help with so many things. To those who can care for themselves, it is natural to take these things for granted. I do not expect you to understand fully what it feels like to live with a disability. But I’m asking you to listen, so perhaps we can better see through one another’s eyes. There are days when I feel like my life is a shift. The constant devotion of my old pal palsy has forced me to become a psychic; my carefully planned schedule means I can probably tell you when I’m taking a shower, not just tonight, but for the next three weeks. At least once a day I have a skit like moment when I think, “What do you mean, plans at 2:00? Everyone knows that I pee at 2:00!” As much as I love having an intimate affair with my pager, it can be an incredibly vulnerable feeling to know that the pager is my only connection to a set of hands to pull me out of bed. What I am getting at, I suppose, is that you have accepted an incredibly responsible job. I thank you from the bottom of my heart for taking it, but this being said, remember that your presence, and your absence, for the matter, affect my whole world. This job may be more tiring, more challenging, more physically and emotionally demanding than any other job you will ever take. Sometimes it will mean putting off plans. But I ask you to be gentle with me, and to realize that I too have many things to juggle. Sometimes while I juggle, I look upward toward a higher being and think, “Juggling?! Seriously? You only gave me one hand that works!” Coordinating my care in addition to the regular tasks of life is exhausting, and I know that taking care of me is no cake job. But I can laugh at almost anything, I love to sing in the shower, and I tell good stories. I do my best to give you something in return for your time and I hope that this can be a situation of interdependence rather than just one about “helping” me. It does not always feel fair or easy to need help with so many things, but when you assist me with patience, humor, and commitment, it fills me with peace and makes juggling seem possible. My favorite color is orange. I love the smell of rain. The things that I can do on my own; those moments when I’m rolling solo on a sunny morning are intensely freeing and beautiful. I am someone’s child, someone’s sister, someone’s best friend. I am human. These are some of the things I would tell you if you wanted to see my person and not just my “needs”. Since you’re going to be tying the laces each morning, every so often I ask that you put yourself in my shoes.
Always in peace,