Sunday, September 24, 2017

Letter to a Personal Assistant

Those who know me are well aware that I rely on the assistance of others to help me with activities of daily living, from using the bathroom to combing my hair and buttoning my shirts. Needing help in so many aspects of life is a mixed blessing. On good days, it has shown me the immense power of looking out for each other. Through caregiving, I have met some of the kindest people I have ever known. On other days, it's beyond frustrating to have to sync your body functions with other people's schedules. To hope that a person you've trusted with the most intimate aspects of your existence doesn't put social plans above your need to take a shower. To hope that such a person doesn't use your need for physical assistance to assert power over you. I don't write about this to ask for your pity or to make you believe my life is a misery. I have a great life, in spite of and because of my disability. I merely want you to consider that it is a gargantuan task to every day put your life in someone else's hands, in the most literal sense. 

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,



  1. Thank you so much for this. Sharing for sure.

  2. This! I just just stumbled across your blog and I found this post to be so honest, so well composed, so accurate in how it speaks to the caregiver dynamic. I should say that I do not experience being cared for firsthand- my partner is quadriplegic though and so I am surrounded by the dynamics every single day. I am a part of the dance, I guess you would say, and so I try to learn the steps so we can all move about together. I reflect a lot about what it would be like if I were the one in his situation- how would I handle all of those intimate moments working so closely with and relying on another? He handles it all with so much grace- it is humbling and it is part of why I love him so much. I would like to think I too would come from a place of grace, but even being on the periphery I can find myself at times feeling frustrated, annoyed, etc. But on the flip side I see and respect the beauty living in a space where you have to let go of some of the control we all think we have in life (but really don't). Anyway, I am babbling. I guess my point is we are all human and we all have a different way of moving about in the world. Just wanted to say I love this post and also, your letter to your caregivers is inspiring. Lastly, I write a little bit about some of this kind of stuff on my blog so feel free to check it out! Thanks!

  3. Love this post. I appreciate your honesty and how you capture your vulnerability as someone who relies on others for their care. I wish more people would be this honest and forthcoming with their needs; not only to the world, but to their caregivers, laying out specifically what you need and why. I am a social worker and I've so often see how people with care needs get treated by the agencies providing the care. They must fit into the organization's convenience, not the other way around. That has to change. I've bookmarked your blog and will keep reading. I've just started blogging again after a 10 year hiatus if you want to check it out (

  4. Special need to be treated equally and be acknowledged for what disability they are, support workers need to be sure that this need is meet to connect and develop a connection for better well being for the clients or individual

  5. Very touching words Kathleen. I appreciate your honesty and I love the way you remain so positive and content. I will do my best to ensure that I provide the best care to anyone I will work with to make a positive impact in their lives.

  6. This is soo touching I felt being there to give you a big hug. We are all one people, in as much that you are not disabled doesn’t mean you should treat them badly. I will love to give you all the love and support, respect and humility to your service

  7. This is soo touching I felt being there to give you a big hug. We are all one people, in as much that you are not disabled doesn’t mean you should treat them badly. I will love to give you all the love and support, respect and humility to your service

  8. Wow this was so inspiring and touching, I had tears in my eyes as I was reading this and felt like I was there and understanding your point of view. Really would like to give you a hug and respect your wishes thank you for sharing