LIFE: My brother Paul Christopher Martin Lehndorff passed away on Sunday, September 6th. There is so much about his story that I wish were different; things that I wish I could have changed or helped him in some way early in his life. But that’s the way it is.
Paul was under hospice care at Minerva, a nursing home in Columbus, Ohio when he passed away. He kept getting one infection after another. He would fight off one infection at a hospital. But, sepsis would resume when he was back at the nursing home — usually once every three months. Considering all the suffering his body had gone through, he was one tough cookie.
Paul had epilepsy, but it is more complicated. For our part, we really didn’t know he was epileptic until he was in college. That was when he had his first grand mal seizure. We just thought he was a fairly happy but odd kid. Not quite as fast or smart as other kids. My father was a physician, my mom was a nurse and my aunt was a children’s psychologist. You would think someone would have figured it out. But we missed the signs.
He would look spaced out and totally miss what you were telling him. Or he would lose track of what he was saying (those could have been smaller seizures). But then he could remember incredible little facts about this or that and was almost obsessive about dates and ages. He was awkward and clumsy. But he learned amazing tricks on his bicycle – standing up on the seat and stuff like that. And he loved to show off really complicated piano pieces. When he was little he used to play Supercalifragilisticexpialidocious as fast as he could.
He was considered “slow.” My mom had to help him with all of his homework through grade school. But, he managed to get into Boston University. And he graduated from Atlantic Union College, with a music education degree.
For a Lehndorff, he was pretty good at math and memorizing. He could remember facts and map routes like a computer – before there were computers. Later I wondered if he was somewhere on the Asperger’s /Autism Spectrum. He had unusual gifts that got overwhelmed by his deficits. Sometimes he would come out with some awkward, but very funny stuff. I can’t even repeat some of it. I am not sure he knew what it meant to keep a secret. We learned not to gossip in front of him. Once he determined that Santa didn’t exist he wanted to spread the word. He was unfiltered.
Epilepsy by itself should not have been a big deal.
Unfortunately, Paul never got traditional modern medical treatment once he got married or at least for 14 years. He and his wife, Kathleen believed in natural remedies. She developed a distrust for modern medicine. Paul adopted whatever her beliefs were. To her, it was sorcery and medicine just covered things up. She is a good, kind person who went through a lot in her own life. Kathy and I have always gotten along well with her. But she was and is developing some psychological issues with anxiety and paranoia. Who knows how or when it started, or who planted the seeds of fear. She believes in various conspiracy theories and imagines there are people (Catholics) who want to harm or kill her. The mixture of extreme religion and mental health is a bad brew. A few of her treatments for Paul’s epilepsy were loosely inspired by her beliefs. But the bulk of it was self-diagnosis and things she would hear; or read in pamphlets. “I’ve done research, you know.” That included a guy named Russell Blaylock. They never had a computer. As far as I know, they rarely used public libraries. So, it was a mixture of common sense nutrition… and medicine-show cure-alls.
They were Seventh Day Adventists (SDA). Adventists were vegetarians before it was cool to be vegetarian. Adventist hospitals are decent and I received care at one in Denver: I was bitten by one of our basset hounds (don’t ask!). But as time went on Kathleen started making up her own religion. The SDA church was too liberal. She dressed the family as if they were Mennonites. She and her daughters wore long gowns to cover themselves and bonnets. Some of the herbs, extracts, tinctures and supplements Kathleen gave Paul were strong and had their own side-effects like Valerian, Tryptophan, and Black Cohosh. He never saw a real doctor until there was a crisis. She believed many of Paul’s problems were caused by mercury poisoning from his fillings and had all of his fillings removed by a dentist.
We gave up. Paul was an adult, after all. It was up to Paul to help himself.
As time went by the seizures got worse, Paul could no longer drive or work and his cognitive abilities were declining. He lost the ability to make decisions for himself. His incredible memory was gone. They traveled from state to state trying to sell bibles and books for homeschooling to Amish and Mennonite families. When the book company stopped advancing them books to sell and Kathleen started selling posters with bible verses on them.
We lost track of how many places Paul and Kathleen had moved to with their two daughters, Sarah, and Azalea. Kathleen home-schooled them; but, car-schooling is more accurate. Or if they had some money they would rent a camper or dead Winnebago with no electricity or plumbing. Azalea had counted 26 moves in 11 states, but that was the running total a few years ago. The excuse for not settling down was always that they needed to find new people to sell their books. Kathleen was starting to imagine other “people” were trying to sabotage her business.
Once Sarah and Azalea got to be teens, they rebelled and applied to an Adventist high school in Upstate New York. They got Paul to sign the permission forms for them but kept it a secret from Kathleen. They started at the school and loved finally getting to be teenagers. They listened to pop and country music (Shania Twain) for the first time and had new friends. The school was supportive and they both worked off their tuition and fees. Kathleen disapproved that it wasn’t strict enough. She came to the school and took them to where she and Paul were living in rural Tennessee.
But they ran away to get an education. They did an early version of crowd-sourcing to get funds and took a bus back to school. (As a side note, I should point out that despite their difficult home life, Sarah, and Azalea turned out to be great adults. Sarah is an airplane and helicopter mechanic and in the Army Reserves and Azalea is in medical school in Canada and has been instrumental in helping to build schools for girls in Afghanistan.
In 2012, Kathleen brought Paul to a chiropractor with acute back pain. He had fallen in a bathroom and hurt his back. His immune system was already compromised. The chiropractor sent them to a local hospital in Ohio. They staff told her that Paul had a serious infection, and he had to go to Ohio State Medical Center right away. Kathleen refused to allow them to give him pain medications.She checked him out of the hospital. She was going to bring him to a “back specialist” she claimed she knew. She moved him into a camper trailer she rented. It had no heat or electricity.
At that point, Azalea and my sister Barbara decided to get guardianship of Paul and went to Ohio. Azalea would spend part of the day helping her parents and getting them stuff. She kept it a secret that Barbara was there. She said she was staying with a friend. After several attempts to get help Azalea and Barbara found a country lawyer to intervene on his behalf and a judge gave Barbara emergency temporary custody. They drove with sheriffs 45 minutes to where the trailer was. Azalea went in first to keep Kathleen from locking the door. Then the sheriffs and Barbara came in. Kathleen was angry and said Paul would die if he was given medicine. He was checked into a hospital in Hillsboro for observation. Later he was transferred to Ohio State where they tried to stop the infection and rebuild his spine. When they first checked him in he was suffering from malnutrition (lack of protein) on top of everything else. The court hearing was a tense family affair. Barbara was given permanent guardianship and was able to get him on disability and Medicaid in Ohio. That was amazing in itself because Paul was essentially homeless. He wasn’t legally a resident of Ohio, or anyplace else for that matter. The lawyer that helped Paul did it pro-Bono.
The last trip Kathy and I took together was out to Columbus to see him in May of 2012. He was in an isolation room at Ohio State Medical Center. We had to get into white infection suits and masks to see him. He was never conscious when we visited. It was very tough on Kathy. With her Huntington’s she was literally exhausted. We all attended a “family meeting” with his doctors. The wanted to know what Paul would have wanted. Did he have a living will? Had he expressed anything about being kept alive artificially? It was tense, but we all survived. Kathleen was afraid we were going to have Paul “put down” for convenience. She wanted the hospital to continue with her “Mercury detoxing”. Despite her hatred for medical sorcery and government, Kathleen wanted everything done to keep him alive. She believed God would provide a miracle.
The hospital was able to quiet the infection and do the surgeries on his back. They replaced a whole section of his spine. There wasn’t much hope that he would walk again. He had to wear a halo for a while. He was moved to a rehab facility and later to Minerva, a nursing home. They did attempt to build up his strength and tried to teach him to walk and use a wheelchair but because he was on Medicaid the physical therapy was stopped when he didn’t show progress. The hard part was that none of us lived in Ohio, or even close. So, visits by Barbara from Reno, Azalea from Canada and Sarah from Phoenix were very expensive trips. Kathleen was allowed to visit for short periods. There were a few occasions when she tried to interfere with his health care. One time she visited Paul with a “friend she had met”. That person turned out to be a state social worker that she had called to investigate the care Paul was getting at Minerva. Needless to say, the nursing home passed with flying colors. Another time she thought an aide was being too friendly or flirty with Paul. The nursing home gave Barbara a secret code to use when we wanted to talk to Paul or get information.
We were hoping Kathleen would spend more time with Paul. But she said, “I can’t live in Ohio because it is too dangerous there.” She would just start driving back and forth around the country. She was convinced that people wanted to kill her. Or that my family had called social services on her for mistreating Paul. Or the new world order and the secret societies were out there working with the Jesuit Infiltrators. The Pope is the antichrist. The end of days was coming. I wish I were making this stuff up. Make sure you wear your tin-foil hat if you read these links.
Kathleen calls often to see how Kathy is doing; and that she is praying for us. I always have a nice talk with her. I just wish I could help her. When I think of how much therapy and meds have helped me I know she could feel better.
I reassure her that we admire her resilience and her resourcefulness. A few weeks ago she called, upset that Paul had a “social worker.” She thought they were investigating her because of Paul. I joke that it was crazy and it had nothing to do with her. I said, “Kathy has at least three social workers! They make sure Kathy has anything she needs to be comfortable. They help get equipment and supplies. They are there to help Paul. She said she didn’t realize that is what social workers do.
In her condition, she has no empathy and is focused inward on herself. She honestly believes she knows more than everyone else and wants to help everybody. She sleeps in her car at truck stops, where she can take a shower. There is a small network of people who send her money for gas and feed into some of her ideas like Mercury. We never knew where she was half the time. Azalea and Sarah buy her cell phones, but she throws them away because “They can track her.” It was, and is sad. We are worried about her safety, now. For a few weeks, she was living in Holland, Massachusetts about 30 minutes from us. She was getting paid to help an old friend that were very sick. I invited her to visit Kathy. The next call I received she was halfway across the country.
Meanwhile, Paul was alone in the nursing home but he was getting good care. If it hadn’t been for the guardianship and intervention he would have died in 2012. I just wish we could have done something sooner. We certainly talked about it. And Azalea tried to get him checked out. But at least Kathleen, Sarah, and Azalea were with him toward the end. They had a little memorial service for him this weekend organized by the nursing home. Kathleen is going with Sarah to Phoenix but for how long who knows.
Rest in Peace, Paul. He would have been 60 in December.
Note: This post is based on my memories about Paul’s story. That is probably a good thing. After I was pretty well finished I located all the emails and journals written by Barbara and Azalea while they were in the midst of legal and family battles for his care and custody. It was truly a roller coaster much like Kathy’s story. There were peaks of optimism followed by angry battles. I have left out most of those details. I may also have a few details mixed up and the order of things is still confusing. I may have stepped on some family toes. It is what it was. And it will be what it was, for that matter.