I answered the phone and waited for the recorded greeting to finish, as I watched the data message pop up on the screen, “Can you get me in today?”
“I just saw you day before yesterday. Are you sure you want to come in again so soon?” I asked, never wanting to take advantage of clients.
“Yes. Please? 12:30 p.m.?” the next message read, after a slight pause.
“Sure. See you then,” I finished, and began setting the table up for my 11:00 appointment.
By 12:20, I had the massage room set the way he liked it-- a soft brew of lavender, oregano and orange essential oils puffing from the diffuser, Lyle Lovett on the Kindle, ready to repeat, if need be. The heat in the room was an overly-warm 78 degrees for him, with a fan on, ready to blow cool air in my direction without hitting him.
As he came up to the door, I was completely jarred. His regular caregiver was not with him, replaced instead by an early 20-something gal who did not look happy to be here, nor with him. Nor was he smiling, something, which even on his worst of days he always had in abundance.
I opened the outside door with my usual flourish reserved only for him and said, “Well, Dear Sir, isn’t THIS an honor? Twice in less than 72 hours I get the pleasure of your fine company.”
Many months ago, when I first met him, this would have been the point where his own shaky hand would have taken mine, and drawn it to his face for a kiss. As has become our custom over the past couple months, I took the initiative, and brushed his cheek with the palm of my hand, as his own hand sat gnarled and largely paralyzed in his lap.
Almost as an act of mercy for my insatiable curiosity, he asked the new caregiver to take the stairs. She stared blankly at him, as she wasn’t familiar at all with the noises that came out of him, “Ack und sutaah.”
I looked at her as patiently as I could and repeated, “He’s saying he’d like you to take the stairs.”
She rolled her eyes and trotted up the stairway, as I pushed the button to the elevator.
Immediately, I asked, “Where’s the usual?”
“Acka at shuuuuun,” he said. I confirmed back to him that he was indicating she was on vacation.
I asked him if he was doing alright, and for the first time ever in the time I’ve known him, he said, “NO.”
I didn’t quite know what to make of that, as this guy has been one of the most inspirational people I’ve ever met. No matter how bad his ALS was affecting him, he always was positive, with a bright word or outlook about whatever his situation was, and the steadfastness that any moment he had to think, speak, and LIVE, was a good one.
We two joined back up with the caregiver and strode down the hall to the studio.
I watched with some relief as he rolled into the room and his face began to relax a bit upon smelling the essential oils.
I looked over at the caregiver, who was completely absorbed in her iPhone. “You’re more than welcome to go wait in the room at the end of the hall if you’d like… you can even take the Beat Box and hook up some tunes if you want,” I said, handing her Dr. Dre and guiding her down the hall.
I saw a second wave of relief come over his face as I positioned his chair, and arranged bolsters around him so I could begin massaging his hands and arms.
“See ah baaaa e-en-eeeh-eh.”
I had to think for a second and process that. “Bad energy?” I replied, to which he nodded, but more in a circle than the customary up-and-down motion we all know as affirmation.
He gave me a lopsided smile and banged his right arm against his chair, which was the salvo for the little secret game we would play sometimes while I would massage him.
It was hard for me to believe that he had just been in here with me two days ago, as his muscles were hard, gnarled, and shaking more spastically than normal. I bumped my left arm against his right, and then tapped his knee with my middle finger—my move in our game.
I asked him when his regular caregiver was returning. No matter what day of the week I said, he just shook his head back and forth. I laughed and so did he. I didn’t pursue the conversation, having gotten caught up in both our miming game, and in massaging his ravaged limbs.
I worked on him for half an hour, gently attempting to loosen his limbs. I stood up and strode over to the towel cabinet to grab a couple hot, moist towels to put on his arms for a few minutes. In the few seconds it took to do that, he made a groaning noise, and his head flopped against the headrest on his chair. As I was coming around the chair to begin the towel therapy, I was chiding him, “Now, I thought I told you that head banging wasn’t a fair move in the game, Dude.”
Just as I was looking at him head-on, he vomited, and to the extent his broken body would permit, he went limp.
I grabbed my phone and called 911. I hollered for the caregiver down the hall as I pulled him out of his chair and on to the rug on the studio floor, attempting to get him into the safety position, to keep his airways as clear as possible. I advised 911 of what I was doing, and then had to go down the hall and invite the caregiver to come back with me. She went utterly white when she saw the situation.
“Do you have his medical papers?” I asked her.
I encountered another blank look, layered with the response, “Uh… what papers?”
I explained to her that normally there are emergency response papers with all kinds of medical information in the back pocket of his chair, pointing to the empty pocket. She just shrugged, and I turned away so that I could compose myself and get rid of the “You had ONE job,” look that was trying to take over my face.
I sat down on the floor next to him, softly rubbing his back as I started looking for a phone number for my next client. Settling for a social media message, I contacted her and apologized for rescheduling her appointment. At this point, given the lack of medical information with him, and the lack of experience his caregiver seemed to have, I felt obligated to follow along to the hospital. As he was loaded up with EMS, I made a quick copy of his intake form in my office and headed to the hospital, all the while dialing the two emergency names I had listed for him.
One number was disconnected. The other was his mother. “Hello, my name is Susanne, I am your son’s massage therapist. He just had a seizure in my studio, and he is being transported to the hospital right now.”
“Is this his new caregiver?” came the very cold and short voice on the other end of the line.
“No, I said, repeating, “I am his massage therapist. He just had a seizure.”
“Well, we aren’t paying the bills on his caregiver any more, so I don’t know how to help you.”
What?
“Ma’am, your son is in pretty serious condition. I’m trying to let you know that he is on his way to the hospital in Redding.”
“Well, since he’s not willing to do what it takes to follow my wishes, there’s not much I can be expected to do. He’s on his own now.” Click, went the phone.
At the hospital, I did the hospital-y things I know how to do: advise doctors of what I knew of his condition, inform them of the strange-ass conversation I had with the mom, provide my intake sheet with a list of conditions and medications.
I was asked multiple times about his advanced directive, and had to just keep repeating that I knew there was one, and that he has chosen DNR options, as he does not want to live on a ventilator, but that I did not have a copy of them.
Ultimately, I was able to send the new caregiver back to his house to find it.
In the meantime, my client came back to consciousness. I went to the hallway and hollered for a nurse, realizing that there was no way to tell how long he might remain conscious, and able to provide any confirming information they might need. For half an hour, the nurse asked questions, and I sort of worked as interpreter to help the nurse understand what my client was saying.
He knew his name.
He knew his age (29)
He knew he was in Redding, in the hospital, and with me.
He hadn’t been feeling well since the night before.
His original caregiver had been let go by his mother, replaced by someone he was able to procure through social services. He and his mother had gotten in a fight because she wanted him to change his advanced directive to include ventilator and other life support. This disagreement led her to end all financial assistance she had been providing him.
I was sincerely grateful that just as the tears began falling from my eyes over this revelation, the new caregiver returned with additional paperwork, so I had reason to get up, turn away from the bed and wipe my eyes, while fishing through the papers for the nurse.
At that point, a new set of nurses and support staff came and moved him to a ‘comfort care’ room. Low-end oxygen and pain meds for him; juice, soda, cookies and fruit for me. This much of the drill I totally know.
Back when he was doing better, and could speak more clearly, we used to tell each other jokes while I was massaging him. “You’re the most intelligent woman I know, and you also have the most sophomoric sense of humor ever. I like that about you.”
This would of course make me smile and tell him, “You need a better class of friends, Dude.”
But, if nothing else, my sense of humor was a good distraction. I moved his bed so that he could better see people walking by in the hallway, and we played a classic game of Rating Butts. He claimed he had never played. After a few rounds, I told him I didn’t believe him, since he had seemed to get the hang of it so fast.
At one point, I got a little teary, and I shared with him how much he had meant to me, and how much he inspired me, sometimes on days when I just wasn’t feeling like life was going my way. “Sa-aya a-ahoot auhua,” he said.
He thought the same about me. That was just a real “whoa” moment.
“Sss-s-s-iiin”
I looked at him like he was totally crazy. Sing? “Really? You think MY singing is going to make you better?”
The nod, and groaning, “eeeeaaaaa” made me giggle.
“I’m going to assume I’ll be working out of the Lyle Lovett song book, yeah?”
So, for an hour, I sang every Lyle Lovett song I knew, which thanks to him, is a lot.
If I Had a Boat.
Cowboy Up.
Fat Babies.
This Old Porch.
I’ve Been to Memphis.
In My Own Mind. I totally choked and lost it on this one. The last line, “Out here where you can breathe…” just did me in.
This client is the second person in six months I have sat with in the hospital and literally watched suffocate.
I held his hand, and prayed with him. I told him he was totally in charge of sending me a sign that he’d made it to the other side.
He struggled a while to breathe. I kept moving him to find the most optimal way to keep him comfortable, but as time wore on, those positions slipped away, just as he did this afternoon.
I can’t help but wonder if his insistence at coming in to see me today wasn’t mostly about ensuring he had a friend with him to see him on to the other side. I’m sure it’s one of those questions that will slip away unanswered in time, I’m just grateful I had the chance today to ruin perfectly good Lyle Lovett songs for him and keep him comfortable while he made his way out of this world’s gate.
Cheers to you, DB, and Godspeed.
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