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Unlikely serenity

"The greatest wealth is contentment with a little."
-Unknown

I did not want to go to work today. More than usual, I did not want to go to work today. I had been up late doing paperwork, asleep as soon as horizontal, then awake again, barely, in about 3 seconds, a warm cat under my arm, the alarm on my cell phone reading 5:06am, dreading the day. On her way to work, my wife dropped me off at the office. Lately, I just haven't been able to make myself get on the bike. My routine is, I first go look at my route for the day, scheduled the previous afternoon by office administrators. Then I grab my charts, all 40-80lbs of them, and head off to a quiet conference room to meditate for 10 or 15 minutes. This morning, staying awake as I breathed in and out with the aim of emptying my head was a challenge. I use a technique that I learned in a Shambhala meditation center, keeping my eyes open, focusing on a spot a few feet in front of me, concentrating on the breath. All I wanted to do was put my head down on the table and drift off. If I can stop the chatter in my brain for three breaths in a row, that's a huge success. When I'm through, I start making my way through the charts, filling out what I can before the day begins, reviewing what happened during the last visit, anticipating the next. Today, among 13 others, I would be seeing John Mayberry. John is a tough case.

John has been in bed for years. After a car accident left him paraplegic, he has spent nearly all of his time in a room the size of a walk in closet. The room is in what was probably once a storage space in the basement of an Englewood 3-flat.. There are no windows. The air is close. Only one person at a time can be in there with him. His bed takes up about 80% of the space. There is a small shelving unit at his feet with a 12" TV atop. His toes fall outward. He lies there in his underwear and a half buttoned shirt, with an ashtray somewhere within reach. A short, twisting corridor leads to a kitchen even smaller than the bedroom that barely holds a table and two chairs. Whenever I visit, either his daughter or his son wait for me by the stove as I talk to John about how he is doing. Today, I notice that urine collection bag has a little blood in it. The visiting nurse who comes once a week had just changed his catheter so the blood isn't terribly surprising and will probably clear up in another day or two. I look at his left knee which we have X rayed here in his room since the last visit. It is less swollen and not painful, though he says that a spot on the leg below the knee has been bothering him a bit, but only when he has to turn to be washed, or to have bedclothes changed. The X ray showed only arthritis, but I had also shot films of his lumbar spine, and these bones had a ragged appearance. Though it has never been demonstrated definitively, I am sure that John has metastatic prostate cancer. His PSA, the chemical produced in quantity by cancer cells, is sky-high. Years ago, when the elevated PSA was first noticed, he had not one but two biopsies but both had been negative. Over the last six months, the flesh has melted off of him. He is visibly weaker, has developed an early bedsore over his hip, and now this bone pain. Without a positive biopsy, I have been unable to get urology to start treatment for the cancer, though this treatment would have been temporizing at best. John is dying of a cruel disease. However, given a touch of dementia, his mind is not able to hold onto this reality. And despite this heavy, very limited existence, his outlook is surprising.

John is seemingly one of the most content patients I work with. Whenever asked, he always feels fine. He smiles and says he is happy, he has no interest in moving anywhere else. Even when I paint too rosy a picture of a supportive care facility where he could socialize with other residents and tool around in a powerchair. coming and going as he pleased, he claims to have no interest in being anywhere else. He enjoys the meals his family makes him and he likes watching TV. In all the time I have been coming, I have never seen him angry or despondent or scared. In fact, the time I think he seemed most unhappy was when I visited him in the hospital, in a room much cleaner, brighter, airier, and larger than the one to which he is accustomed. In a way, he strikes me as an creature who has grown used to his tiny cage. "Institutionalized" is the word coined in the Shawshank Redemption for people who have become dependent upon their prison cells. I want to take him away from this place and see him living in a building with nurses, bathrooms, showers, where he could peer out his window and see birds. But is this fair? John has taken the situation given him and made peace with it. According to his children, even before his injury, and long before he moved underground, he was content; his outlook uncomplicated. And yet, finding him accepting of a situation that I find unimaginable, I want to believe him damaged. I find it far more believable that in telling me he prefers this place, he is actually expressing his fear of the unknown. Perhaps in this alternative environment that I offer him, his children will never come visit. It will be clean and the walls will lie more than three feet away, but no one will listen to him. They will tell him what he wants rather than asking. Behind his smile, he is terrified. This is what makes the most sense to me. And if I could take you to this place that he lives, maybe this would be what makes sense to you. And if I am wrong, and he is content rather than paralyzed by the thought of change, is there anything that I can learn from him? Or is this just the way he is and has always been, while I am how I am and have always been and will ever be?

Rickets?

My job brings me into a lot of strange houses. This one has to be one of the strangest. What I knew going in was that the patient was self-pay, that is he did not have Medicare, the only form of insurance that The Company accepts. And he was having trouble coming up with enough of a cash payment to make the administrators think it was worth their while to send a physician out. Glancing at his chart, I saw that the patient had what the doctor who saw him before me termed "familial rickets." That is, two of his daughters have rickets as well.

You don't hear too much about rickets anymore. In fact the word itself seems antique. It comes from an Old English word 'wrickken,' meaning to twist because the legs of those with rickets bow inward. Their bones are soft and prone to fractures and their teeth fail to mineralize properly. The most common form of the disease is due to a lack of the active form of vitamin D, either because of deficiencies in the diet or lack of sunlight or both; for a while it was quite common but now we have all but eradicated in this country. But there is another form of the disease that is very rare and inherited. The mutation causing the disease resides on the X chromosome, meaning that fathers give it to their daughters. I reviewed all of this during a lit search on my iPhone as we drove out to see our patient.

There was no heavy ornately barred security door found on most of the nearby homes. In fact there was no storm door at all. There was no doorbell. When we knocked, a boy of about 11 with a challenging expression and no shirt answered. We asked for Henry and he led us through a dingy, sparsely furnished living room, past another slightly older shirtless boy, and into a back bedroom. Our patient was a man of 46, obese, short in stature, with bowed legs, also shirtless, lying on a dirty mattress. He invited us in.

Self pay patients are unusual. And because no one from The Company had visited him in over a year, I figured he had a specific reason for wanting to see us, so I asked him straight out. He gave a direct answer. He was due in court on Monday for a child support hearing and needed a physician's note stating that he was bed-bound and unable to attend. Apparently, as he had grown heavier, he developed back pain, and now in addition to being unable to walk he could no longer tolerate sitting except for short periods. He had not even tried to sit up for the last 8 months. Despite this, he was a fairly cheerful fellow, well-spoken, happily conversant. He seemed to understand how bizarre all of this was. When a third shirtless boy came in asking to use the computer, he breezily said not now, Darnell. The kid kept at it so Henry put an end to the pleading with: "Leave! Goodbye." though his the tone of his dismissal was somehow affectionate, familiar. I almost cracked up.

In order to examine Henry's back, my medical assistant and I had to physically roll him onto his side, not an easy task for a man shaped like a Weeble. Henry walked us through it, so to speak. Apparently, whenever he needs to leave the bed, which isn't often, he calls a couple of larger sons to help pick him up. I had some stationary with me and wrote him a letter on the spot. I could easily testify to his rather lump-like status, and I felt for him. But what I wanted to ask, but avoided doing because we had just met, is what's with all these kids? He has eight! This man who had been on SSI for over 30 years, who had never walked, who was poor as a church mouse, just kept on making babies. And most disturbing, not one but two of his daughters inherited his crippling disease, an outcome that should have been entirely predictable. I can believe that he was never properly educated about his disease. I can even buy this despite the fact that his sister, who also has rickets, passed the disease on to one of her sons. But what I find nearly impossible to fathom is that he never considered slowing down on the baby-making after his first daughter developed the same crippling condition. And while not all of his children live with him, as demonstrated by the child-support suit, both of his daughters do live in his small house. I would imagine this is a way to consolidate SSI checks, about $650/month each, to the point that they can support a household.

Despite what I may think of his choices, the man needed better medical care than he was getting. At this point, though there is probably not a lot to be done about his major diagnosis, he also had untreated hypertension. And if I could help apply for Medicare, which he should be eligible for, we could probably get him a bed with a trapeze set-up that allows him to sit up, along with physical therapy that may help address his back pain. Until we can put all of this in place, I told him that I would come back for free in about a month to check on his blood pressure and see how he was doing.