A Story of Courage, Grit and Love: Don’t Be Passive–Be Engaged

This could be just Bill’s story but his courage and determination are intertwined with the love and tenacity of his wife Kerri. He would not be alive without their mutual grit.

Bill was a successful banker with a full life. And then little things began happening to him that seemed odd. His face burned and he could not stop constantly hiccupping. It became so bothersome that his doctor finally recommended an MRI. They found a cyst on his brain stem.

They interviewed neurological surgeons. One did seven to eight such surgeries a year. Through a friend they found another neurological surgeon who did seven to eight such surgeries a day.

It was complex surgery. Bill needed it to live. When they asked if the surgery was life threatening, the surgeon said: “Absolutely. You need to get your affairs in order.” But the surgery was a success.

He was in the neurosurgery ward. Bill was in the ICU for a week and in the hospital for another week. He went home thinking all was well.

A month later the symptoms returned. The surgeon could not do a biopsy. The nerves were too entangled. They did another MRI. The cyst had re-filled. Bill faced another surgery to put in a stent to drain the cyst. Within three months Bill’s symptoms returned. Then came another surgery with a longer stent.

Within a month a staph infection developed in the stent and it had to be removed. This was Bill’s fourth operation in 15 months.

Kerri navigated his care from the beginning. She is an attorney and is particular about details. She double checked the neurosurgeon’s appointments and orders. She made sure Bill was getting the right medications at the right time and in the right form. Nothing escaped her attention. She had had her own health care experience and knew the importance of paying attention. When she was given the wrong medications once she refused to take them until they brought the right ones—even though she was labeled a “medication hoarder and a thief.”

Bill almost didn’t survive the surgery on Christmas Eve. He was not expected to live. He was in a sterile room with sterile walls. There was nothing familiar or encouraging. It was a place to die. He had failed every test—could not remember his name, what day it was, who was president. He had no memory. Bill said he knew he was supposed to know the answers but didn’t. Kerri was told they were losing him. She was not ready to let him go.

She joined him in bed and looked at him eyeball to eyeball and told him he was not going to die. He was not done yet.

She brought in a clock, some pictures, a TV, some of his hiking videos. She told him who he was and brought him back. The surgeon asked Kerri put in writing what she had done and she did. Later when they had to return the rooms were filled with clocks, pictures, and other items that gave patients a sense of orientation and something familiar rather than blank sterile walls. She was able to show that it was possible to do this and still have a safe sterile environment.

The surgery saved Bill’s life. The year was 1992.

In 2010 Bill developed new problems. His balance was off. He attributed it to old age. He had a cortisone shot but it made no difference. He thought his doctor was not listening to him. He changed doctors.

He had a urinary tract infection. The urologist and his new neurologist made the diagnosis that he had a rare disease—Multiple System Atrophy. The brain’s signals are not received by many parts of the body. Which is why his bladder didn’t contract and why he had poor balance. MSA is progressive. There are no known treatments or medications. Only five out of 100,000 people are diagnosed with this disorder.

As Bill says, probably 99% of all doctors have never heard of this disorder. The urologist and the neurologist worked in the same clinic and they talked with each other. Kerri said they listened and were good communicators. They gave Kerri and Bill explicit permission to ask questions. There was no limit on the time they could have with the doctors. As Kerri indicated: “They were respectful and warm. But they did not sugar coat anything.”

Bill fell down the basement stairs. He has no memory of the fall. He remembers nothing of the three days in the hospital. He requires a caregiver in addition to Kerri so he can walk and get out of the house. He is taking writing classes. If it were not for Theo, his caregiver, he would not get the exercise and help he needs. They had to move from their home because he could not live with stairs.

Bill now walks at least twice a day for about a half hour. He exercises his brain by using Lumosity and is taking a writing class to work on his story and a memoir for his children He has been taken off one medication that has potentially negative neurological side effects. They are hoping it will improve some of Bill’s cognitive problems.

Kerri and Bill are the first to admit they are extraordinarily lucky—they had extraordinary insurance from Bill’s employer and they have the means to cover things their insurance doesn’t.

But the core message they think people need to know is: Don’t be passive. Don’t just unthinkingly do what a doctor says. Make sure the doctors are listening to you. If you are going to get better find a doctor that believes that you can. Most of all—be actively engaged in your care.

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