I have mixed feelings about Whole Foods. A co-founder and former CEO, John Mackey, put corporate weight behind opposition to health care reform and unions. On the other hand, there are worse places to work, and they do what they do very well. And my schedule strands me in a wireless desert in Cranston with Whole Foods the nearest oasis.
So I’m hunched at a table eating out of a biodegradable box when I realize I’m being cruised by a guy in an electric wheelchair. Our heads are at about the same level. He’s younger than me, well dressed, his speech is slurred and his eyes a little unfocused.
“Can I ask you something?” he says.
I really want to concentrate on my food, but okay.
He goes into a rambling joke about the president, and the vice president, that I figure out is intended to be a shot at Barack Obama’s right to hold the office.
Some people might have been impressed with the man’s condition, which I guess is MS. But I’m a nurse. So I cut the guy zero slack.
“I find that offensive,” I told him.
“Well, he wants to raise our taxes and give away all our money,” he said.
I looked him right in the eye and told him I knew that the only way he could get through the day is with the help of a lot of good people. He conceded that was true. “Don’t they deserve a living wage?” I asked.
He asked how much they should get. “What’s fair,” I said. He nodded, as if he was seeing the faces of the home health aides who must be a part of his daily life.
“I know how hard you have to work to get through the day,” I said.
“Me, and my wife,” he said.
He took it all in good humor, he was smiling as he left.
There’s a good expression for the human condition –’temporarily abled’. I don’t know what misfortune robbed that man of his power, maybe some immune system misfire, or car accident. I do know that it could just as easily be me. We don’t know what the next moment might bring.
We can recognize our interdependence, and build a safety net that anyone of us might need some day. Or we can blame the poor and cry about taxes and pretend that the home health aid lacks ‘individual responsibility’ when her labor is so poorly paid that she has to use food stamps to feed her family.
A level playing field doesn’t just happen, anymore than a baseball field maintains itself. Building on solid ground, taxing fairly and investing in education, infrastructure, health care and other aspects of the public good is the American way. If we settle for a gated community as our model, subversion will come in through the servant’s entrance. No one gets through life without the help of other people.
American Journal of Nursing doesn’t give it away for free, so I can’t re-print chunks of ‘Patient’s Perspective: Hard Lessons from a Long Hospital Stay’. Michael Ogg, author and subject, along with co-author Lisa I.Lezzoni describe the sequence of events that put Mr.Ogg in the hospital where he got first-rate high tech medical treatment, almost undone by lack of nursing staff to care for him as he recovered.
Michael Ogg has a form of multiple sclerosis that leaves him almost completely immobile. A badly placed cushion on his wheelchair, and lack of attention to his complaints of pain led to a pressure sore so deep it required surgery. As Ms. Lezzoni says, “it shouldn’t have happened.”
Michael Ogg has posted online an unsparing and harrowing journal of the challenges of depending on total care.
Before she leaves, around 7:45[am], Nelita [home health aid] sometimes helps me get breakfast or does other chores, like laundry or taking out the garbage. After she leaves, I’m alone.
No other personal care assistant comes until Serge arrives at 9:28 p.m. Of course, they could: It’s only a question of money. But I can’t afford more care, so I must make do. Sometimes, when my right arm is too weak to lift a cup or grab a snack bar, I must wait for Serge to arrive to have water or food. I’d be safer with some care during the day, but if something goes seriously wrong, I can count on my personal care assistant agency to provide emergency help.
In a recent week, I had two experiences that underscore these concerns. I’d just heated my dinner—chicken curry with a nice, steaming hot sauce—and was moving the bowl from the stove top to my lap tray. I dropped it. The sauce doused my left hand. Because of spasticity, I can’t move my left arm or hand, and the steaming sauce began scalding my flesh. I couldn’t put my hand under the cold water in my sink. I tried using my right hand to direct the faucet hose onto my left hand, but I succeeded only in soaking my clothes and wheelchair.
I called 911 with my cell phone, and the police arrived right away, followed by emergency medical technicians (EMTs). I’ve registered as disabled with local emergency services and given them the digital lock combination for my front door. The EMTs immediately applied an ice pack, stopping the burning, and my left hand appeared relatively unscathed. There was no blistering, and the ice pack eased the pain, so I declined their offer to take me to the hospital. Because I was soaked and the kitchen a mess, I dialed the agency’s number. I reached the on-call supervisor, and Serge arrived within thirty minutes and cleaned me up.
A few days later, I positioned my wheelchair seat in maximum tilt, about 45 degrees, which I do periodically to take weight off my buttocks and to prevent pressure ulcers. Coming out of tilt, my wheelchair lost its power. It was dead. Unmovable. With my cell phone, which I always have with me, I called the wheelchair vendor. It doesn’t have emergency service, and all it could offer was to send a technician to my home as soon as possible.
I was completely stuck, staring at the ceiling. My laptop computer was a frustrating three inches from my fingertips, and I’d forgotten to place a book in my wheelchair’s pouch. Food and water might as well have been miles away. After two hours of sitting, stranded, I called the agency to see if they could send someone over.
The whole of Michael Ogg’s blog post is here–it’s intense and difficult reading.
A person who is paralyzed requires skilled, vigilant care to prevent the kind of injury Mr.Ogg endured. As in other situations, prevention saves suffering and money. Staffing cuts and benefit cuts put the most vulnerable people in jeopardy. By sharing his experience, Michael Ogg exposes the consequences of understaffing and speaks for many who have been voiceless.