Happy Father’s Day, Part 2: Living with Parkinson’s Disease
The following musings on Father’s Day are by ExCS Group Member and Contributor Chrystal. This is part 2 of 3, part 3 will be shared on Sunday, June 25, 2017.
My dad’s first wife was never ready to be a mom. After she potty trained me (her only child), she left. She has appeared a few times in my life over the last 40+ years, but she has been mostly missing my whole life. My dad and I lived in subsidized housing for years. Then, he met his second wife, who earned a respectable income as a teacher several states away. My dad and I moved. As a child, I felt like she threw away probably all of our possessions except maybe my dad’s typewriter, a lamp his brother had made him, and my dad’s bed. As far as I know, none of my possessions moved with us to this new location. Well, except my favorite stuffed animal, which was later stolen by my bio mom “to remember me by.” (I found it in her possession 10 years later, horribly dirty, ruined and mangled, having been carelessly treated.)
One of the weirdest things I have observed with Christian Science is the control of information. In a future blog, I will talk about severe neck pain I endured as an adult, and how I hid in my house, forbidding anyone to visit me, essentially. It’s a common thing in Christian Science to keep knowledge secret. If you don’t speak out loud what a problem is, then the problem won’t be made more real. So, for god’s sake, keep your mouth shut about anything important. If you tell someone something good, they will naturally feel jealous (what control Christian Scientists think they have over other people’s emotions!), and that makes them break The 10th Commandment, and that will bring “Malicious Animal Magnetism” to your good thing, so it will be destroyed. If you tell them something bad, they will not be able to help you at all, and you have just voiced that a seeming problem might exist, and by breathing words into it, it’s now completely real, and harder to heal.
Listening to Christian Scientists give their Wednesday evening “testimonies,” is quite interesting. They sound quite a lot like this –
“I had the supposed belief of what might have been a cold. [Note: no symptoms.] I prayed to feel God surrounding me. I felt God’s presence open up to me as I read ScienceAndHealthWithKeyToTheScripturesByOurBelovedLeaderMaryBakerEddy. I knew clearly this idea of a cold could never be a part of ME! Because I am God’s Perfect Child, I am made in God’s Pure Reflection. There is no spot where God is not. I knew I was fully healed in that moment. And then, several days later, the symptoms released completely. iAmSoGratefulForChristianScience.”
My dad’s second wife was one of the most controlling people I have ever met. One thing she controls with an iron fist is “information.” If she wanted to tell a secret in front of my dad, she would say it in a secret “language” that he couldn’t understand. It’s similar to Pig Latin, but it’s not Pig Latin. We could teach this stupid language to our friends. It’s supposed to just be a little secret code that kids talk to each other in. It shouldn’t be used to abuse someone by keeping information from them. This is one example of her sense to control. My dad and I could both write upside down, backwards in cursive. Guess what. She couldn’t read it. My dad and I would write little notes about Christmas surprises. Well, she couldn’t read it, so that was banned. But this ban didn’t keep her from using her secret language. She spoke it faster and faster over time, knowing my dad couldn’t understand it if she spoke as fast as she could go. My dad objected when she did this, but she steamrolled over him as if she was more important than he was. Her whole intention to do this sort of thing was to inform her kids of something and have my dad stay completely in the dark on the issue.
My dad’s wife wouldn’t let him use the bathroom in the house to pass a bowel movement. I wish I was exaggerating. I remember my dad running in to whatever place we had just driven to, to go use the bathroom. She said, “you make a mess at home, so you’re not allowed to use the bathroom.” My dad was forbidden to use the bathroom in his own home. Holding toxins in is a horrible thing to subject someone’s body too. Toxins are meant to be released, not held in. (He knew how to clean up the “it’s just matter!” Why not just ask him to clean up after himself?)
It is my feeling that this directly contributed to my dad contracting Early Onset Parkinson’s Disease that probably started in his mid 40s. At first he tried to treat it with only Christian Science.
After a few years of trying Christian Science – in earnest – my dad was getting worse. His wife mentioned to their practitioner, “his thumb is still trembling.” Her less than compassionate response was, “he is still dealing with that?” She was exasperated that HE hadn’t healed it yet. Yeah. That’s because Christian Science doesn’t heal. At all. Let alone the fact that as the Practitioner, it’s HER JOB to heal him. Because if HE could do it, he wouldn’t have called her in the first place!
My dad and his siblings were raised in Christian Science (and left it, thank goodness). Two of his siblings and their spouses called my parents when they learned he was struggling with Parkinson’s and that it was becoming worse and worse.
At this point, he was now realizing his all time worst fear – he was in a Christian Science Nursing home. He needed full time care. The disease he lived with every day, had become rapidly worse, thanks to having no medical intervention at all. My understanding is that with early medication, the disease could have been radically slowed. My dad went from a fully capable person running his own business, traveling, speaking on TV, being in the news a lot, reporting on important topics of the day, to, within 2 years, becoming incapable of brushing his teeth and needing to wear diapers. He couldn’t do anything on his own any more. Parkinson’s Disease completely ruined his life. I wouldn’t wish that on anyone. Especially not my loving, kind, caring dad, creative, incredibly smart and funny dad.
My dad’s siblings and their spouses strong-armed my dad and his wife to make my dad go the medical route. My dad was in his 40s and had young children who needed their dad, not an invalid in a nursing home. So, my dad went the medical route. Being a Christian Science family, this was hidden as best it could for a long long time. Over time, my dad’s body froze again, and the Christian Science Church they were long time members at eventually kicked him out of the two activities he loved to do – being a Sunday School Teacher and being an usher at the door.
Because my dad’s comic book collection had been thrown out decades earlier, and he had been raised by a fear-filled hoarder that had survived the Great Depression, my dad was also somewhat of a packrat. He was able to keep it organized until Parkinson’s hit him, though. You might think that someone living with Parkinson’s Disease would be treated kindly and supportively by their spouse. At least most of the time.
However, at one point, when my dad had been dealing with Parkinson’s for more than 10 years and had rare moments when he could see and move clearly and clean up after himself, his wife said to him: “after you die, we are throwing all of this away!” My dad told her, “that’s a really mean thing to say.” He rarely spoke up to her. He rarely griped about her. He was far too kind. He did sometimes tell me that she was just awful and overly mean. This breaks my heart. He never dreamed of leaving her, and out of some sort of weird obligation, or more likely, “look at me, I am such a good person I won’t leave him and will take care of him,” she never left him either. The next blog post will share how “well” she “took care of him.”
Eventually, my dad’s (second) Christian Science Teacher told him not to come back to Association. He was too “distracting.” My study of The Holy Bible says that Jesus called the woman To him. The woman who was bowing down – he called her TO HIM. He didn’t say, “go away, you’re a distraction.”
And He was teaching in one of the synagogues on the sabbath. And, behold, there was a woman who had a spirit of infirmity eighteen years, and was bowed together, and could in no way lift herself up. And when Jesus saw her, He called her to Him, and said unto her, Woman, thou art loosed from thine infirmity. And He laid His hands on her; and immediately she was made straight, and glorified God.
– Luke 13: 10-13
My dad’s Christian Science Teacher did other horrible things, and one of these days I am sure I will get off my duff and write a letter to the Christian Science Board of Education and tell them what this clod did to my dad personally, and what inappropriate comments I heard him say in a Christian Science lecture all those years ago. I haven’t yet, but one of these days.