“Blood’s thicker than water, and when one’s
in trouble best to seek out a relative’s open arms.”
They brought her to me because she was getting weaker. Over the years, her family had noticed that it was harder for her to care for her puppy. Trimming the edges of the family’s lawn, her favorite pastime, was now an impossibility. She had developed pronounced weakness of her arms, and her sister had noticed that her shoulder muscles were shriveling. A neurosurgeon had operated on her neck. She felt that she had only gotten worse since her surgery. Her doctor thought that maybe she had a form of arthritis.
She was born in rural Missouri. She developed seizures in early childhood. Maybe because access to adequate care was difficult to obtain. maybe because she had severe disease, it took a while to bring her epilepsy under control. I am guessing that there may have been particularly prolonged seizures or severe falls that may have damaged her ability to learn and remember things. Although she remained strong and able to care for her needs, she depended on her mother through adolescence, and she was given a disability rating.
Once her mother died, her sister took over. When her sister married, her husband agreed to bring her along. They purchased a trailer that was parked in the back yard, so that she could have some privacy. For years she woke up, took care of her puppy’s needs, and tried to help out by trimming the lawn and performing odd chores. Once the lawn was trimmed, her sister came over to help her with her activities of daily living.
Two years before I met her, her sister had a stroke. No problem: her sister’s husband became the caregiver for both. He did well until everyone noticed my patient’s decline.
She was around five feet tall. A thick mop of partially tended to black hair fell on her forehead in several places. Clean; articulate to a surprising extent, although she had a mild stutter and it took her a while to get her points across. She was clearly anxious and concerned. She knew that if this decline continued her independence would vanish. Her sister had a lot of trouble expressing herself, but it was obvious that she shared her sibling’s anxiety.
Within a few minutes I could tell that we were not dealing with arthritis. Frequent, involuntary movements, much like spasms, of her trunk and upper extremities. Marked weakness. Severe atrophy of the muscles surrounding her shoulder blades. I shared the concern of this particularly tight family unit.
I don’t think that you have arthritis. I think that there is something wrong with your muscles, like an adult form of muscular dystrophy. Maybe there is something wrong with the spinal cord. I am not sure; we need more tests.
There were some questions; a pause; more questions. That unique combination of relief that they may have finally arrived at a diagnosis, and panic at what the diagnosis may turn out to be. More questions, then another pause. Suddenly she burst into tears.
“I don’t want to be in a wheelchair.”
Now it’s out. The elephant in the room; what was clearly in everyone’s mind but what no one wanted to even contemplate. Once we were talking about it I could see a hint of relief in her sister’s eyes.
It is always better to know. No matter how bad or serious or complicated the diagnosis, you are always better off knowing what you have to deal with.
Her sister tried to say that she agreed, but she could only nod. Her husband agreed with me. One thing was made perfectly clear. We are all in this together. For the duration. No matter what. We are family. This is what families do.
There are signs of poverty all over that county. The jobs left long ago. The educational system did not keep up with the changing times. The politicians found it easier to scare these souls about terrorism, and gun control, and gay marriage, while they did nothing to bring jobs and good schools back.
It seems to me that this neglect is purposeful; that people in power (from both sides) have targeted these neighborhoods and condemned them to struggle for eternity. Their needs will never be met. An uninformed populace will not notice the corruption and incompetence.
When I was active in practice, many days I came home and I wanted to hit my head against the wall, because it all seemed so hopeless and I could do so little.
Then I saw those families. Three and four and five people to an exam room, and a few others waiting outside. All of them making it clear to each other that they are there for the long haul. This is what made me want to go back.
This is what families do.