This year is going to go down in the history of my life as just one of those strange years. Like 1981, or 1988, or 2004 which all were life changing years.
The first six months was pretty much all health stuff. Trying to survive the transplant, then doing all the stuff I was supposed to do to monitor it. Nik was here, we were just on autopilot going from appointment to appointment, hospitalization to hospitalization. My dad died in there as well so there were some visits and stuff but it was mostly a blur. When Nik left, I did need to take a few weeks to learn how to take care of myself. I was cooking and cleaning and taking the dog out and the trash out for the first time in over a year or two. I had to build up an endurance for those things and then that got easier.
Then I’ve been hanging out here with nothing much to do but go to infusion every 28 days and the lab every 28 days in between those, a couple of appointments here and there. I still spend a lot of time exercising and trying to improve my stamina and strength. I still work on my guide dog. I still do a lot of admin work for the fam and some for the biz. I pay college fees, enroll Avery in school and talk to his advisors, make sure everyone has their vaccination appointments, etc. I still go over some clients with Nik and we exchange ideas about how to mitigate their challenges and advocate for some of their issues.
But mostly, I have loved the quiet. Like, LOVED it. I go entire days without wearing my hearing aids. I go entire days without dealing with anyone else’s shit except my own family, who I generally talk to daily at least for a bit. I feel like I haven’t sat with myself, with time to think and just be in the quiet in years. Decades. Mostly because I haven’t.
I have gone out with some friends and family here and I have thoroughly enjoyed that. If they come knocking, I haven’t told them no, but I haven’t really reached out either. For no real reason except: It’s nice and peaceful here! I have only rarely been bored or lonely. Most of the time, I’m completely satisfied sitting here with my dog, reading or listening to podcasts while I cook or do yoga or fold laundry. If I was going to stay here forever, I’d have to snap out of this at some point and go do something. But since I know this time is finite, I’ve sort of given myself permission to chill and enjoy it.
Lately I’ve gone down a Mormon rabbit hole. It started when my son Avery wanted to go to Crescent and visit the cemetery there and I was reminded of my Jehovah’s Witness grandparents but also my Mormon ancestors. My Great Great Great Grandfather was a pioneer Mormon named David Wilding, who traveled from England with Brigham Young in the 1830s to Nauvoo, the area where Joseph Smith was trying to settle but then was killed and the Mormon’s expelled. They traveled across Iowa in the winter and came to this Council Bluffs/ Omaha area where they camped in what they called Winter Quarters before in shifts, they traveled on to Salt Lake City. David Wilding also traveled on, but returned after a falling out with Brigham Young over who was the appropriate prophet to follow Joseph Smith. .Wilding and many others felt it should have been Smith’s son. Brigham Young thought it should have been Brigham Young. So David Wilding and many others who either came back or stayed in this area started wards of the Reorganized Latter Day Saints Church (Now called Community of Christ Church.) Crescent, Iowa’s only church was started by David Wilding and many others in that area. Many of which are my ancestors. My ancestors were apostates.
It’s interesting that Joseph Smith Wilding, David’s son and my Great Great Grandfather, is buried just a few meters away from my grandparents, who became devoted Jehovah’s Witnesses. The apostates and the devoted, both who let religion split up their families.
In David Wilding’s case, his older children traveled to Salt Lake City as older teens or adults and became prominent, respected members of the LDS church. David came back to Winter Quarters with the younger kids, of which Joseph Smith Wilding who was the first child born in the U.S. in Nauvoo, was one. Those kids became RLDS and the family was split.
The story goes with my father’s family, of which there was 7 children, that my grandfather struggled with alcoholism and my grandmother was struggling to feed all the children. She made a decision to give the younger children up to the Christian orphanage in town and keep the two oldest girls. When she was getting them ready to go, two JW missionaries came knocking on her door. And they saved her. The church helped her with food and needed items for the kids, and helped get her husband into the church and deal with his drinking. Eventually, he became an elder and minister of the Kingdom Hall in Council Bluffs. The JWs saved them, but also helped to sever the family as well later on.
It also is probably the number one thing that turned me atheist.
I am not atheist in that I know there is no God or higher power. I am a puny human, and like an amoeba has no concept of me, I’m sure there are all kinds of things in the universe that I have no concept of. I am an atheist of the God in the Bible, however. I love science and don’t really believe in the God of the gaps, although I am sure there are fundamentally amazing and unknowable things in the universe. Although I would love to live long enough to know more and more and more till all gaps are filled, I know I won’t. Nor will human kind. And I am OK with the not knowing. I don’t need to fill gaps with stories. The gaps are interesting enough on their own.
I believe my mom and dad believed in God in a sort of nondenominational way. When they first got married, my mom tried to take classes with the JWs. We had “The New World Translations of the Holy Scriptures” in our home with little tabs and notes in it where my mom had studied it. But since my dad wasn’t putting in any effort (He had had enough church, more than we ever had, he always said), my mom stopped making t he effort. My dad never officially left the JWs, he just kind of faded out. It was kind of don’t ask/ don’t tell. On Christmas, we didn’t put lights up or talk about celebrating, although we did. Once when my grandmother dropped by, my mom and dad talked to her in the driveway for a while and didn’t invite her in because our house was decorated on the inside for Christmas. We did not receive presents from them on birthdays or anything. So, it wasn’t like they didn’t know we weren’t JW, but it sort of went unspoken.
My mom started taking my sister and I to the First Congregational Church in Council Bluffs. (Now United Church of Christ.) I remember feeling fairly neutral about it. In Sunday school, we cut and pasted a lot of pictures of Jesus on pages of a book. The boy who sat across from me was always drawing the cars from Starsky and Hutch or Dukes of Hazard and never did anything. Nothing happened to him so I kind of half-assed it, too. I remember doing something where we made a golden ruler, a literal ruler covered in shiny gold stickers. It wasn’t until years later that I came to understand what the Golden Rule was. Most of church went right over my head. Mostly, I was mad because I was too young to do the stuff my sister got to do, like be in the choir or be in the Christmas nativity or in the big kids room. By the time I was old enough, we had stopped going.
My mom stopped because the minister had pissed her off by making her feel bad about our imperfect attendance. I think she felt some of the people there were snobby, too. My dad never went to church, and I did have a Sunday school teacher that constantly asked where my dad was. I did stay long enough to be a third grader that got my own Bible, though.
Meanwhile, in the JW world…the world was going to end. In October of 1975, to be exact, the Watchtower had predicted that the world would end. My parents talked about this, in mostly incredulous terms, about how one of my aunts was selling her house and getting ready for the end times. I never understood this. What does having a house matter, or cash, or a bank account in the end times? Still, the notion of the world possibly ending freaked me out at five years old. Even though my mom told me it wasn’t going to happen, even the notion of the possibility frightened me. I did not know much about keeping track of the months, then. But when 1976 rolled in and everyone started talking about the Bicentennial, I breathed a sigh of relief.
My grandmother had stepped up her efforts to save us, though. And she convinced my mother to let her pick us up from our babysitter’s house and spend the afternoon at her house. She gave my sister and I our own JW “Book of Bible Stories” and would read from this children’s bible. She told us we should read it at home, too. And so I did.
That book freaked me the fuck out. Holy shit. A mean snake lies to Eve so she gets punished forever by God. Then God likes her good son, who killed this cute little lamb for him, but not her bad son who gave up some wheat? Lot’s Wife Looks Back and turns into a pillar of salt as she simply looks in sadness on her burning home? God plays with Job like a cat plays with a mouse before deciding to let it go? Stephen is Stoned? Abraham has to kill his son? I can vividly remember the pictures, done in that same colorful style that you still see in Watchtower and Awake! Pamphlets that the JWs leave on your doorstep. I remember pictures of the people drowning in agony in Noah’s flood. I remember not quite getting why Jesus was nailed to the stake (JWs put him on a stake with his hands over his head, not a cross.) Every story was written in this tone where look what this asshole did, YOU wouldn’t do something like that so God will come after you and KILL you, right? But then Jesus, we suddenly feel sorry for. He was the one who was nice? Right? Why didn’t God save him? God, to me, seemed like kind of an asshole. Jesus was nice, but look what it did for him? God didn’t save him and he is his son. The whole concept of Jesus dying for our sins went right over my head.
On the last two pages, Jesus comes down on a white horse with an army of horses behind him. There is an ugly battle. On the next page, a beautiful but sort of stepford-y white, blond, blue-eyed boy and girl sit in a lovely garden along side a lamb, a peaceful lion, and a baby deer. It was beautiful. and it was creepy as hell. I couldn’t see any blind people in that world. My grandfather would come to tell me that if I had a proposed lens transplant that was up for discussion in an upcoming eye surgery would mark me with the devil’s mark. Then he gave me a dollar. Hmmmm. I ended up not having the lens implant for medical reasons. But now I have a kidney transplant so we’ll see how devilish I will end up. Between that and going to the Kingdom Hall to watch 16 year old family members vow to obey their new creepy JW husbands.* I was out. Religion is too weird. (*To be fair, I never really got to know said husbands. They were very young, too. This is just my preteen interpretation of weddings where women had to vow to obey their head of household.)
At church Sunday school, when some kids tried to explain to me that Jesus died for my sins, I was just confused. “What sins?” Not that I was a perfect kid. But my concept of sins was like murder or stealing, and I hadn’t done anything like that. And I also didn’t get why God making someone die 2000 years ago had anything to do with me. God was an asshole. It just seemed like more of his M.O.
In sixth grade, my friend Mardra got to sing on a local children’s religious TV show. I was very jealous. I didn’t give a rats ass that it was a religious show, I just wanted to sing on TV. She asked me if I knew any hymns. I knew Jesus Loves Me and Found a Peanut. That was it. Not good enough, said Mardra. You don’t know anything about Jesus or God. You don’t go to church. You can’t sing on the show.
Still, I was coming upon adolescence and was rethinking everything. I decided to investigate religion on my own. It was partly from Mardra telling me I didn’t know anything about religion and part from reading “Are you there, God? It’s me, Margaret.” That book was a mirror of my life. We had just moved like Margaret’s family. All my friends and I did was talk about boys, bras and who would get their period first. My parents were religiously a little screwy, and so we were nothing. And my dad even had a bad lawn chore accident like Margaret’s dad. It made sense that I would take on the same type of religious exploration that she did.
So I started reading the Bible. In my bathroom. In secret. My family would think this is very weird. I started at Genesis and maybe read 2-3 chapters a day. I couldn’t stay in the bathroom too long. I don’t think I got past psalms, like I never made it to the New Testament at that time (I eventually read the whole thing in later years.) But reading it made me think the whole thing was bananas. It told one story then told another that contradicted the first. It had all of these nutty rules that no one followed. It had sometimes some pretty language, but it still made God out to be kind of a narcissistic asshole. I started to see how, like the 80s pop song lyrics my friends and I could totally make mean anything we wanted them to mean, that is what people did with excerpts from the Bible. It wasn’t anything that I found in it that was helpful or that I could really hang on to or believe in with a good conscience.
I also started asking kids at school about their religious and church experiences. There were a lot of Catholics, some Mormons, and a mix of Protestant religions. I also started learning and paying more attention to world history in regards to religious wars. It seemed to me that religion did not make people any better, it made them meaner and less moral. Kids who I talked to would get into arguments about religious differences between Catholics and Lutherans which to me were so minute and stupid, split hair level stuff that it caused animosity for no reason. I vividly remember listening to two girls in high school get into a heated argument about whether it was okay to speak in tongues. Does God really care about this? Does he care if we dance around and sing “Hungry Like the Wolf” or dance around, arms over our heads and sing words I don’t understand? What is really the difference? Does he really care if the Millard North Mustangs win their football game? Maybe there is some kid with cancer who he might need to hear more about but you are jacking up the frequencies with prayers about Midwest United States varsity football.
Meanwhile, my family had reconnected with my dad’s sister who had left the JWs and become Catholic. They were completely excluded from all family events. In fact, I did not know I even had these cousins until I was around 12. They became the family on my dad’s side that we became closest to. But it was very hard seeing them, say, excluded from my grandmother’s funeral in very harsh ways. I became VERY anti religious.
I mellowed out about religion as an adult over the years. I dabbled in a church here or there. I took a Bible history class at the University of Kansas which I found really interesting. It did more to solidify my atheism, even though it was taught by a cool catholic nun. I learned so much about all the politics and dealings about how the Bible actually came to be the Bible. You can’t learn all that and really think it’s inspired or written by God. I give that nun credit though, for her scholarly honesty. I think that is when I finished reading the whole Bible. I thought Jesus’s teachings were somewhat aspirational and mostly a decent code to live by, along with a bunch of others. I taught a course on Islam in the UU church. I had to learn everything as I taught it and I was able to visit a mosque. Islam seemed about as useful as Christianity to me. Same patriarchy, different day. I remember thinking that Islam had a problem with scale and that no one did the math when they decided on the Hajj. (Or predicted population growth.) and now the Hajj is becoming a huge problem and very dangerous. It’s the same as my thoughts on Mormonism and polygamy. That math just does not work unless you kill off 80% of the men.
But religious people seemed to me to be just like everyone else. Some used their religion for good. To comfort themselves and others. To give themselves strength and community. To reach out and have inspiration to be their best selves. This doesn’t bother me. I am fine with religious people who use their religion for good.
Others, just like in the outside world, use their religion as justification to hate, oppress, and vilify others. They use it in violence and in selfish power. This completely grosses me out. and I think as a world civilization, we need to really look at boundaries on this type of religion and religious zealousness. I don’t think religions should get tax exempt status. I do think there should be a strict separation between church and state. I think religions should not be protected from laws like basic civil rights laws. But I also believe that people are free to believe and worship as they want, as long as it doesn’t curtail other’s rights.
On a personal level, I don’t mind religious people of the first variety. During my kidney transplant, many people said they would pray for me and I appreciate that. I understand where it comes from. But I do appreciate being asked first. Like most blind and disabled people, I’ve had strangers on the street pray for me to get my vision back and that gets irritating. It would be like someone coming up to you and praying for you to be less fat or less ugly. I’m fine the way I am, thanks. When people ask me to pray for them, I actually do. It might not be the type of prayer they were thinking of, but I do commit myself to thinking of them, saying a few words on their behalf, committing my intention to them and that all good things will come to them. Putting some positivity there in the universe.
When I worked for 2.5 years as a child life volunteer in pediatric oncology, I was surrounded by praying and prayer requests. And I did whatever made those families feel better because that was my job. And many of the patients sadly died. I started informally kind of taking data. Which kids died compared to which kids were surrounded by the most prayers and telephone trees of prayer and clergy visits , etc. You can probably guess that the results were random. The kids who died had the harder to treat kinds of cancer, mostly. Or had gotten very weak on chemo and had that kind of complication. I would never tell a family whose child has cancer how to pray or not about their child’s illness. I have no issues with praying for kids with cancer if asked. But personally, I found actual solace in the fact that it was random. The randomness gave me comfort. It seems so much better to me to think that we (the doctors, nurses, family, friends, everyone) tried our very best with what we know as puny humans to save this child and randomly, sometimes it doesn’t work out. It’s terribly sad. But not as sad as hundreds of people praying for a child to live and God decides to not intervene. God’s ways are not that mysterious. It’s just a gap in our science knowledge. We can work our hardest to narrow the gap. Bad things happen to good people. Sometimes there is just no good reason for it. That is less unsettling than an all knowing God being begged by grieving people to help and he doesn’t.
A friend of mine recently lost her husband very suddenly. It’s really sad and I feel very bad for her. But she is doing this thing where she is trying to figure out why God is punishing her by taking him away. I know it is just part of her grief processes and she just needs to go through it. But I just want to say, “Oh, honey. Nothing. You did nothing wrong. This isn’t about God taking him away. It just really, really sucks. You don’t deserve this. No one does.” I hate that religion does this to people. Her husband’s death was a sudden cardiac event and it’s just sucky and random. That, to me, is better than “ I tried to be a good person. I prayed and prayed to god and he took my husband anyway.”
I think this quote is credited to Christopher Reeve, but I’m unsure if that is correct. He apparently said, “If I do good, I feel good. If I do bad. I feel bad. That is my religion.” That pretty much sums me up. I can see cultural and literal value in studying scripture and religion. But it is certainly not worth the break up of a family or fighting a war over.
I have faced mortality and lost a lot of young people in my life. People ask me if I’m afraid of death. Maybe a little, I mean. Not even death, I’m afraid of leaving stuff undone for my kids or my husband and them grieving and things like that. But I’m ok not knowing what happens after you die. Probably nothing. You make some fertile soil and feed the earth and the cycle continues. But if there is something else, I guess I’ll find out. But I don’t need eternity. And I’m not going to live my life for it. I’m fine with trying my best to be in the now. That’s all we have.
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