Tag Archives: hypotonia

ProChristianation

I have so much to do today that is banal, therefore I am sitting at my desk hoping to come up with something brilliant instead. Maybe if I have a creative flash, it will make taking care of the small stuff easier. I try to go from least desirable to most, because if I start with the thing I want to do most, the rest of my to-do list goes into “I can do it tomorrow” status, which generally runs ad infinitum amen.

I need to do some stuff around the house, and I also need to go to the pharmacy and grocery store. I should have thought ahead on this one and used the pharmacy at the grocery store from the beginning, but luckily, CVS and Giant are practically next door to each other. It takes about two minutes to walk between them if I’m feeling lazy, 45 seconds if I’m booking it…. usually dependent on how much I have to carry from one store to the other. I feel like taking this break to write is justified, because I don’t like to go anywhere without my phone, watch, and headphones completely charged. It helps me to be in crowds if everyone feels further away, so I’m usually listening to music or a podcast.

I never leave my watch at home because I have cerebral palsy and monocular vision. If my monocular vision is guilty, I have missed a step down (sometimes a step up) or a crack in the sidewalk. If it’s the CP, I have taken a spill a propos of nothing. My watch has fall detection, and if I don’t move in a certain amount of time, alerts 911. I’ve never needed it, but I am genuinely afraid of hitting my head, because in 90% of cases, the falls happen so fast I don’t have time to react. I’ve only had three falls in the last five years that have resulted in bruising or bleeding, but that’s enough, especially since I ripped my favorite pants at the knee…. khakis that would have looked horrible with patching even if I could have gotten all the blood out. No, wait. I have ripped two pairs of pants at $50 a pop. In one case, I thought I broke my hip. Luckily, I did not. The bone ached for days as I recovered, though.

While I was in more pain than worrying about my pants, I am reminded of an old Ryan Darlington story. He wrecked his bike and walked it back home because he was scraped up, road rash, bleeding, all the things. His dad took one look at him and, completely deadpan, said “geez…. is the bike okay? There’s nothing like the love of a parent for a child.

It helps to have a friend to help me watch out for that stuff, but mostly I just tumble ass over teakettle because I won’t say anything up front. I need to get to a place where it just is, and doesn’t make me feel embarrassed. It’s difficult, though, especially with new people in my life. If I fall once in front of them, it’s just an accident. Three or four times? Not so much.

What helped me the most was meeting Tracy Walder (link is to my question at her Q&A after her book talk- The Unexpected Spywe had a conversation when she signed my book), and learning that even with all she’s accomplished professionally, she still has her own body issues and doesn’t talk about it, either. Her hypotonia didn’t develop into CP, so our cases are different, but our internal monologues are the same.

I didn’t mean to put her on the spot, but I’d read a few pages of the book while I was waiting for her, and she mentions it, so I thought it was fair game.

I kicked myself later that I didn’t take her aside privately, because I think talking about it to an audience might have made her uncomfortable. I hope I was able to diffuse it by saying I had it, too, so she wouldn’t feel alone…. or maybe it was that I didn’t want to feel alone. Either way, it worked out.

I’d never met anyone with hypotonia before, so one of the best moments of my life was learning that there’s another person in the world that has the same feelings I do. I am sure there are plenty more, but neither of us know them. In fact, she says that she doesn’t think she’s ever met anyone outside her family that has it.

She gave me such a gift by opening up, because it raised my self-esteem when I realized that it was okay to feel how I feel, and just to let them come and go. Perhaps in the future I will feel more comfortable getting out of the house because of it. I tend to hole up (quarantine or not), because the layout of the house is familiar and safe. I purposely put off going to the grocery store and pharmacy until social interaction is needed to maintain isolation, because I don’t have to guess whether I’ll trip. I don’t have to guess that I’ll run into something. I don’t have to guess whether or not my shoulder will bang on a door frame unless it’s doubly wide. I just know.

It makes meeting people doubly hard, but during the quarantine, I did have one woman reach out to me that I managed to piss off in one day flat. That’s a record. However, I wasn’t upset about it because it was a conversation I knew was going to be way more trouble than it was worth. She grew up non-denominational/Pentecostal and still trying to live out her faith in that vein, which made me cringe because that framework is designed to keep people inside the fear of going to hell when they die………. and she can try until Jesus comes to fit in as a queer fundamentalist, but people will still talk behind her back if not directly to her face.

She spoke fluent “Christianese,” which is a language that I hear so much that I can understand it, but I won’t engage. People who take the Bible literally and those of us who take the Bible seriously are so different that there’s really no mesh. You will never catch me using the phrases “looking for a Godly marriage” or “raising kids in His word.” What pissed her off was me saying “I hear those words a lot, but I have no idea what they actually mean.”

Having spent a lot of time in the Bible Belt, I know to keep my views to myself (she was originally from Beaumont, TX). For that crowd, the resurrection is more important than anything Jesus ever did while he was alive…. and I do not enjoy the “sticky, sticky blood” interpretation.

Also, nothing in the Bible to literalists is a story from an ancient civilization trying to understand the world around them, but absolute truth- as if God sat down and wrote it all in pen. Don’t even mention to them that stories of Jesus were oral traditions not written down until 90 years after his death. No one had an eyewitness account, but literalists skip over that, as well, and will fight you in a way that you’ll always lose, because they go pretty quickly into righteousness- they follow Jesus and they have no idea what the hell you’re doing. They’re Christians, and you’re faking it…. as if no time has passed and thousands of years of exegesis and criticism are fake as well. My alarm bell went off when she said she went to Bible College. Here’s what I mean by alarm bell, taken from Wikipedia:

Many were established as a reaction against established theological colleges and seminaries, which conservatives believed were becoming increasingly liberal and undermining traditional Christian teachings, such as Biblical inerrancy [emphasis mine].

There’s a big difference between Bible College and say, getting into the divinity schools at Yale, Harvard, Princeton, Emory, etc…. this is because the error is that seminaries were getting too liberal. It’s that the more they pieced history together, they could no longer support the idea that every single sentence in the Bible is a hundred percent factually accurate and needs no translation from then to now.

I am sure that my treatise on “inerrancy” could have been an entry all on its own, but everything ties together in terms of getting over myself and meeting new people, and knowing within a conversation or two whether it’s a relationship I’d like to continue. I know I’ll keep tripping and falling, but I’d like to know whether I’m going to land in the right hands.

For me, that person could be a different (non-literalist) denomination, a different religion altogether, or agnostic/atheist as long as they respect that I’m not going to change.

My beliefs about the Bible can be summed up in one sentence. I believe that all 66 books are stories that are all true, and some of them actually happened.

Redacted

The bassoon solo from The Bourne Identity main theme is ringing in my ears. People ask me all the time why I’m so interested in intel. Well, if you’ve been reading for a long time, you already know. For those just joining us, I had a great uncle in the DIA who died when I was very small. The mystery of how has stayed with me since I first heard the story. The public one is a helicopter crash, but I don’t know if the public and private match……… It is possible that his identity died, but he didn’t. The only reason I think that is that his personal effects weren’t sent until over a decade later. I’ve also always loved Bond (well, all intel) movies, and a huge part of it is the music.

So to me, it’s no wonder that I ended up being fascinated by spies, but I don’t have any interest in being one myself……… which is good, because I don’t think I’d make a great one. I’d be excellent at interrogation, especially if I had language skills equal to English in Russian and Arabic…….. crap at nearly everything else. I would probably make it a life goal to drive my IT guys crazy, but I’d have everyone’s back. Well, except for the part where I’m 5’2 and 125 and the added bonus of when in a war zone, a terrible shot. I mean, truly exceptional at being bad. I have even less desire to be a desk jockey at Langley. Oh, and even though I take medication for it so it’s not generally an issue, I’m Bipolar II and I don’t think The Agency would take kindly to it.

So here we are.

I go to The International Spy Museum and collect signed books like baseball cards….. and as I told my friend Jaime,IMG_0025 “since it’s clandestine, you never get their rookie year.” The last lecture/book signing I went to was The Unexpected Spy, by Tracy Walder. I was particularly interested for two reasons:

  • The book is about to become a TV show, called The Sorority Girl Who Saved Your Life produced by Ellen Pompeo of Grey’s Anatomy. Why they couldn’t call it “The Unexpected Spy” is beyond me, because the name is ridiculous. But still.
  • We were both born with “floppy baby syndrome,” which was the precursor to my CP diagnosis. It is fundamental to who we both are. She said in her talk that she takes spills all the time. It made me feel much better about myself, because I’ve never seen a movie spy that moved like me in any way. But a real spy does.

The reason it’s redacted on the autograph page is that I asked her to do it. The Publications Review Board at The Agency blacked out a lot of her manuscript, and the style choice to leave it all in was pretty badass.

She took it seriously and wrote the comment, then scratched out one word. Then, she decided it wasn’t black enough and went over it with a Sharpie. I was laughing so hard I was crying when she handed it to me and said, “there. Now no one knows WHAT I told you to do to the world.” And then she laughed, and at that moment, she was the most beautiful, kind person in the world to me. Literally awesome.

Which only made me more angry at her treatment by the FBI, but I won’t get into it because it’s a large part of the book.

If there are any people who hire spies reading this web site, she also said in the Q&A that she might be approachable after January (who could possibly tell why?). For now, she is doing the work of angels- teaching high school. For the record, it wasn’t me who asked the question.

She had said during the lecture that she wished she had spoken up more at the FBI, possibly taken them to court. I told her that I had a comment and a question. She nodded and I said, “I’m a writer, too, and I know that while you may regret what happened at Hoover, you are more powerful than you can possibly imagine. You’ve taken ‘I’m telling’ to an international level.'” I then asked her about hypotonia- what limitations she had, how she overcame them, etc. She said that I would be surprised, that being in the CIA wasn’t as physical as she thought. That didn’t come in until the FBI, and even then, it was at Quantico where it really mattered.

And then we shared a look between us that was so intimate I will never forget it. Just the complete understanding of someone who knows what it’s like to be the other one.

Because there are no pictures and I don’t think anyone in the room noticed (and maybe I’m projecting and wrong [I don’t think I am]), in years to come I will smile to myself and say, “that’s redacted.”