You are free of your body.
Your “CP” (cerebral palsy) is over. You spoke of CP as though it were one entity and that your CP was pretty much like everyone else’s CP. It wasn’t. Your CP was much worse than most. CP results from lack of oxygen to the brain just before birth. It can affect any part of the body. It is like an electrical short circuit. Imagine a big house with electric fixtures in every room and closet. A small short circuit might knock out only a small closet. In your case, it was as though one of the main electric lines to the house was shorted out. Your CP affected everything from the neck down. You were never able to walk or feed yourself or eliminate waste or roll over in bed without a lot of assistance.
How did you live to age 58 and still live by yourself? You outlived your life expectancy by decades.
When your mother was alive, she took care of you. Whenever the two of you visited my office, you would have both of us laughing. One of your goals was to be a stand-up comic. That was a joke because standing was never an option for you.
When your mother died about 10 years ago, I thought that you would move to a nursing home for good because that was the only place equipped to handle your physical needs. But you made it to Sheedy Park where you had your own apartment. Home health aides would come by the day to feed you, wash you, roll you over and help you get into the wheelchair. You would then take the wheelchair downtown and schmooze and sleep.
Every day was an adventure for you.
Once I ran into you at the top of a hill at Stage Fort Park. You were alone in your wheelchair and about to release the brake and take off down the hill. “Is that safe?” I asked.
“We’ll see,” you replied, and off you went.
You often took the train to Boston … by yourself. People were kind to you and wanted to help … except for those that didn’t. You were robbed and roughed up more than once. You never complained. There were tirades against the injustice of your situation. You weren’t complaining. You were outraged.
Once after a heated discussion with a pharmacist, you wedged your wheelchair between the doors of Walgreen’s and refused to move. The police were called to get you out.
You burned a lot of bridges. Your outbursts at aides and nurses and doctors’ staffs caused a lot of agencies and doctors to refuse to deal with you. When I left private medical practice in 2000, there followed a 20-year effort to find you a health care provider who did not take umbrage at your style. No amount of reasoning could convince people that you were really harmless.
Health care providers often were targets of your blistering rants. Somewhere along the line, someone labelled you a drunk and a drug seeker. And then the “opioid crisis” came along, and doctors decided that all narcotics were verboten. It was decided and written down that you were a substance abuser. The logistics of your buying and using either drugs or alcohol to any significant degree were prohibitive. You were physically unable to lift a glass to your lips never mind the complicated procedures of acquiring and using drugs. If you did come into possession of drugs, they were more likely to be stolen from you than ingested by you.
But you became one of those people to whom any mind-altering substance must be denied. We could go home and have a martini, but you were not allowed to have your cough syrup with codeine that was the only thing that helped your wracking cough, that, when it came on, was brutal. You took the ambulance to the emergency department when things got really bad.
A few years ago you were put in a nursing home in Peabody where you stayed for three years. They knew you were normal mentally, other than your explosive, unreasonable temper; yet you were not allowed go to the mall across the street. “Too dangerous. We’re liable,” they said. You were locked in. After about a year, arrangements finally came through to move you to a nursing home in Gloucester, so you could go outside and be in Gloucester. You refused to move. “I’m not going to no nursing home,” you said.
You kept saying that MassHealth was going to equip your apartment at Sheedy Park with voice-activated controls and around-the-clock attendants and that you planned to go back to your apartment. We doubted it would happen. And then it did! All of a sudden you were back in Sheedy Park with modern adaptations that allowed you to open the door with your voice and do other things that slightly eased the situation. And the home health aides came. They emptied your bags, fed you, cleaned you up, talked, and sometimes took you for walks. It wasn’t 24/7, but it was enough.
Things were different. You knew that death was not far off despite your frequent joking that the good die young, so you were probably going to live for a long time. The medical system wasn’t done yet.
Despite your official DNR/DNI (“do not resuscitate, do not intubate”) document, you were resuscitated and intubated last month and spent two weeks in the hospital where intensive care unit (ICU) doctors shook their heads and hoped that the breathing tube could be safely removed long enough for you to be transferred out of the ICU. It was, and you were. You eventually went back to Sheedy Park where soon thereafter you were found pulseless and unconscious. The frightened home health aide dialed 911, so the EMTs “worked on you” again.
You finally made it out. You beat the CP. You are free of the body that was your lifelong prison.
Goodbye, sweet Joe, my No. 1 patient.
Dr. Cynthia Bjorlie is program director of Adult Foster Care of the North Shore.