Chapter 1 The Orderly
Imagine if reading a book required a contract, a notarized application in triplicate, rejections and appeals and legal representation. It sounds silly, but what’s the difference between reading a book and getting treated for a medical condition? They both offer medicine. They can both benefit our health. Why is one so incredibly complicated, confusing and expensive?
From the very beginning of my work tending families living with ALS, amyotrophic lateral sclerosis, or Lou Gehrig’s Disease, also called motor neuron disease, MND, in Europe, I decided against registrations and paperwork. That was 950 families ago. You come to Compassionate Care ALS and take what you need. I’m not going to burden you with another hoop to jump through, more red tape in a jungle of red, sticky requirements. Not at this lemonade stand. You say you need it and I’ll take your word for it.
I’m not in this to cover my ass and live like a criminal, always on the run from a potential lawsuit. That’s no way to live. A long time ago, the doctor showed up at your house with his black leather medicine bag and tended to you. That’s the model here. It’s an old, familiar way. I know it can make my board of directors uncomfortable. I also know it calms and soothes the families I serve. When they ask about forms to fill out and I say there are none, the looks of astonishment are precious. I wish I had a camera.
I’ve had people literally cry when I tell them to put away the pen, no papers to sign, no system to get into, no approvals to petition for. My approach to this book comes from the same place. If something in these pages serves, by all means help yourself. It is an invitation. If you like an idea presented here, please bring it to your community. I would be honored. You may drink freely at this well. If the water is not to your taste, spit it out.
I sure wish my mother were alive to take a sip along with us. She always worried about me. Oh, I don’t know if Ronnie will find his place in the world. He’s been through so much. Maybe she blamed herself. I don’t.
Without her and all we went through together, I wouldn’t be who I am. I would not be doing the work I do. Had mom and I not been head-to- head on our hospital gurneys, me ten and she thirty-six, her hand reaching out, over her head, to hold mine, mother and child connected as we bled, I would not know what I know. I would not be able to show up for the terminally ill the way I do, in all humility, in all wonder, in all readiness for grace to show up too.
All I try to do is show up—such a basic thing, really. It’s just being there. First and foremost, being there. Being here. Being open to what is, however it is, with no agenda, no need to fix anything, or break anything, or have any answers. If questions are asked, which they inevitably are, respond with patience, tact, and mindfulness. Even if I know, or think I do, don’t speak until a relationship has been established. No statements from me about you or your condition until we’ve had a cup of coffee together. Can we do that for one another? Can our health care providers do that for us? Whew! I don’t know. Sometimes maybe. Not often enough in my experience.
Showing up ought to be so natural and simple, and yet doing so with skill is not as easy as it sounds. It’s one thing to sit in a room with a father, or a mother, an uncle, or sibling who is living with ALS or some other serious illness. Getting to that room is certainly the beginning. You might call it beginners showing up. Just get yourself into that room. It’s a start.
It is quite another matter to show up with an open heart. Yes, it is something different to show up empty, our personal baggage left at the door, with our judgments, opinions, hopes and fears in that bag as well. That’s not so easy. As my teacher, friend, and colleague Scott Eberle says in his important book, The Final Crossing:
“All of me” present to do this work. What might that mean? I am about to enter a sacred place. Once inside, what am I supposed to do? Nothing. At first, do nothing. Just stay close. Listen. Be an empty vessel.
The day I was shot someone showed up for me completely, when I arrived with a bullet through my side, lodged against my spine. It was the black orderly at the hospital. He, a stranger, a mysterious friend, placed his warm, gentle, brown hand right over my heart and said, “I heard about you on the two-way radio. I’ve been waiting for you.” And me not sure if I would live or die, unable to feel or move my legs, and him saying, “You’re going to be okay.” And me believing him and I was. I call him my stranger friend. I never saw him again, yet he saved my life.
That’s showing up.