Tag Archives: cerebral palsy

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.”

 

The CP and My A

I know I am the same person I was before I accepted the fact that I had cerebral palsy and there was nothing I could do about it. There’s no cure, only management. It’s the management that drops my heart into my stomach, because how can you manage something that’s so random? Falls happen. Running into stuff happens. The worst part is being clumsy AND having monocular vision, because when I fall because of something that’s out of my field of vision, my reflexes aren’t fast enough to catch me. Yesterday I didn’t see the step down off a sidewalk and fell so hard on my left hip that I saw stars. I thought I had broken something, but I didn’t. I just have a bruise that would make the medical journals and lingering pain from pebbles and asphalt. Nearly breaking my ass was a wonderful way to start my day, just in case you were wondering.

Life is easier when I have a partner or friend to watch out for me. Sometimes they point out things I might miss, sometimes it helps to have someone to hold onto or help me up. My dad is obviously the best at it, because he’s had decades of experience saying, “watch it. There’s a step down.” Sidewalks are evil (especially when the city leaves them jagged because of buckling), as are door frames, particularly the left side. This is because I am right-eye dominant, and the left side is out of my field of vision. My shoulders sometimes ache from running into them. Is it any wonder that I feel the safest in my own room?

I get agoraphobic sometimes because I am not immune to being laughed at when I fall, nor are people graceful about my lazy eyes (they drift one at a time depending on my field of vision- called an alternating isotropia). I think that people will be less likely to laugh the older I get, because the chance I’ve really hurt myself will be higher. Right now, I just look like a goofy teenager who’s always clowning, as if I am taking pratfalls on purpose.

For the record, I am not.

I will be 42 years old on September 10th, but I look a lot younger than I am because I tend to wear boys’ clothes. I like looking crispy and if I shop in the big boys’ section, I have Oxfords and Polos where the shoulders fit perfectly, as well as shorts that don’t come down past my knees. I think it’s hilarious that I am so liberal, and yet most days I look like a tiny Alex P. Keaton (wow, that reference proves I’m the age I say I am……….).

There’s a simple reason I dress the way I do. Most people think it’s because I’m a little bit butch, a little bit femme. Nope. It’s because I still want to look good even though I need comfortable clothes and shoes in which I can really move. I look fantastic in dresses and heels, but it increases the chance that I will fall by at least 75 percent. The last time I wore heels, the muscles in my left leg went slack and I went to the floor in a heap. That was nine years ago. It just helps that I have the boyish charm of a lesbian to make my style pop. My style actually got better when (ironically) I met a straight woman that looks even better in men’s clothes than I do.

When I sent her sister a picture of me, she said “are you channeling your inner ________? I can think of worse people to resemble.” I replied, “it was accidental, but I’ll give you the popped collar for free. Thank you for pointing it out. I appreciate it sooooooo much. Now, every time I get dressed, I ask myself ‘is this too ________?'” It’s okay. I just chalk it up to the fact that my friend is evil and must be stopped. She knows it. It’s a thing. It has provided us with an endless supply of the fun kind of being teased. I like it.

That was six years ago, and I STILL ask myself if my outfit is too ____________.

Sometimes I don’t care. I like having a style icon to look up to when I am having trouble picking out clothes on my own. I ask myself if she would look hot in it, and if the mental picture is on point, I buy it. We have the same body type, so if she looks good in it, I will, too. It’s been nice to have clothes in which I look polished, but don’t impede my movement more than clothes already do.

I won’t lie, though. I miss the way girl clothes make me feel. Or as Dana and I used to joke about them, “my ho clothes.” I never minded going to clubs in short skirts, etc. because if I fell, people would just assume I was drunk and help me up.

In terms of “helping me up,” I absolutely hate the way that cerebral palsy lessens my self-reliance. I can get around alone, and I do. But having a companion, no matter who it is (parent, sibling, partner, friend), makes walking around the city so much easier. I have done a lot of crying over the past few weeks (months?) because it has finally sunk in that I am not going to recover from this. My movement will never be any better than it is right now. It is a bitter, bitter pill to swallow…. and yet another reason why I shy away from dating because I am terrified of becoming reliant on someone, even though it’s something that would help me navigate life so much easier.

My attitude right now reminds me of my sister when she was a toddler. If my parents were helping her to a degree she thought was too much, she would say indignantly and angrily “wanna do it BYMYSELF!” It’s not a question of desire to be completely self-sufficient, but practicality.

My health is a psychological issue I need to work on, because it makes my self-worth plummet. Whether it’s rational or not, it makes me feel like a burden and I’ve felt that way for years. Asking someone to take on CP and Bipolar II is a lot, especially when each one is big enough on its own. In my reading about CP, I learned that it can cause mental health problems, so it’s not impossible that the two conditions are related. The difference is that in terms of keeping things under control, Bipolar II is so much easier. There’s medications for it, many of them. If the medication I’m currently on stops working, I have resources.

Physically, I got nothin.’ By that I mean preventative medication. The only thing I can do right now is take pain meds after I fall. Ibuprofen and arthritis-strength Tylenol™ have been lifesavers. Walking helps to a degree, because my muscles get stronger over time. It is also fraught, though, because the more I walk outside, the more chances there are to trip over things.

The one thing I feel good about is that I’m not a flake. I’m not ditzy. These things don’t happen in a vacuum. There’s a solid reason for it, when previously I thought I was just having dumbass attacks all the time. It has solidified my need to take care of myself mentally and physically.

But again, the question on my mind is always “how do you take care of a problem you can’t see? It’s hard enough with problems you can.” I haven’t been idle about looking for help, though. I feel like it would be beneficial to get into group therapy for people who have the same disorder. I am sure that I will find one, but what I’ve found so far is for the parents of kids with juvenile cases and learning to navigate the school system, their home lives, their adjustment to not having a kid that’s completely normal, etc. No wonder my mother wanted to pretend I was.

There is no such thing as competitive suffering, but there are two sides to that coin. The first is being grateful that I do not need crutches or a walker to get around, and that my case is as mild as it is. The second is being able to accept the fact that though others are suffering more, that doesn’t mean I don’t.

I mean, I nearly broke my ass.

The Year of Acceptance

I went to the pub earlier and stuffed myself with brunch. I got everyone sitting at the bar addicted to Crosswords With Friends™ as I gobbled up banana custard French toast, eggs, Irish bacon, coffee, and orange juice. I was pleased with myself because I just showed up and sat down, and by the end I was specifically invited back every weekend by “the brunch club.”

The way I got into the conversation is that they were having an argument over something and I asked the woman next to me what it was all about. They were arguing over the capital of Canada…. whether it was Montreal or Toronto (pregnant sigh). I said, “it’s Ottawa.” The woman next to me said, “I like how you said that without missing a beat.” I told her that I was 100% certain I was right unless they’d moved it in the last few years.

I had my Slumdog Millionaire moment of hearing the question and video of Meagan and me  in the beer store buying a two four of Alexander Keith’s popping up because who can paint a living room without beer?

I was not invited to Ottawa just to paint Meagan’s living room. I was invited for Thanksgiving, and like the wingnut I am, didn’t look up the date for Canadian Thanksgiving because I thought I knew it.

I didn’t.

CDN Thanksgiving revolves. Who knew?

It ended up being a better trip that way, though, because I got Meag, her then-wife Deah, and her daughter to myself instead of having to share them with all their other friends and relatives.

When Meag and I were actually together, I thought seriously for a few months about immigrating to Canada, but I didn’t really get the concept of what an enormous change it would be until over a decade after we broke up, because believe it or not, I never made it there while we were dating…. and not because we only knew each other online. We were high school sweethearts and when Meagan graduated from high school, she went back to her home country while her parents stayed in Texas.

Seeing Canada for real was learning how European it is compared to the United States, and while I picked up the English dialect quickly having heard Meagan use Canadian slang “my whole life,” there was still a feeling of dissonance.

After a few days, though, I could totally see myself living there. Ottawa felt strikingly similar to DC and Portland, Oregon…. or rather, if the two cities got together and had a baby.

When I was looking for a change of scenery in 2015, Ottawa would have been a good choice for me if it hadn’t meant immigration and losing my US Citizenship (I would have wanted to be able to vote). Ultimately, I made the right choice. I’ve been in love with DC since I was eight. I feel the magic of Washington like most people feel the romance of Paris- it vibrates inside me.

Things happen here that would never happen anywhere else. For instance, I got to hear Jonna Mendez, former Chief of Disguise at CIA, talk about her latest (and her husband Tony‘s last) book. That was on 31 May, and this weekend I finally found a way to send her the blog entry I wrote after I came home that night. She told me it was wonderful and Tony would have loved it as well. It was a huge moment in my life, as it is for all authors when their favorite authors pay them a compliment.

Ok, I am being tame. It was hug from Jesus level awesome and my skin is still buzzing. I feel so good about it that my energy could jump start a car battery.

If I could, I would bottle that feeling and use it as hair product.

Being so high on a compliment is tempered by my anger at unfixable situations.

On September 10, I will be 42 years old. I will always remember 41 as The Year of Acceptance™ (pregnant sigh).

Because of medical malpractice in the delivery room, I have cerebral palsy. It’s a mild case, and my parents never agreed on how much to tell me about what happened. My mother didn’t want me to know anything at all, to pretend that my mental and physical health were just like everyone else’s. My dad was always on the side of truth, but as soon as he would start talking about it, my mother would either A) disagree loudly II) change the subject.

My mother always said that my dad’s memory was wrong or that he was just making a big deal out of nothing.

My sister found the report in which I was diagnosed, and for the first time, I saw my pediatric neurologist’s impressions of me. I was a little over a year old, and presented like I was only six months. I didn’t have the physical reactions of someone my age, and my muscles couldn’t support me. I have never caught up to my peers.

So basically I’ve just been living life thinking that I was perfectly able-bodied, to not so great results. I’ve done a lot of research, and CP doesn’t get worse as you age. It is what it is. However, its implications are bigger. For instance, I don’t fall more than I did when I was younger, but I do fall harder. And with monocular vision, it doesn’t matter how careful I think I’m being. There’s always something I’m not going to see and either I run into it or it runs into me. I spend a lot of time accidentally apologizing to inanimate objects.

Some of my muscles are way more developed than others, so while doing one physical thing I may look completely normal, and then during a different activity, you can immediately tell I’m struggling.

This year was about accepting why as fact. I stopped beating myself up that I wasn’t faster in the kitchen. I was never built for it in the first place.

You don’t come to acceptance of something as big as CP in one moment or even in one day. It’s too big, too complicated. It took me a long time to stop beating myself up that there was no such thing as being born with floppy muscles and being miraculously cured of it while still being more of a klutz than all of my friends put together.

It’s also confusing because my symptoms are so mild, because it’s taken a long time to figure out where I excel and where I, in a word, don’t. It’s a long haul from thinking that you can do anything you want to taking your physical limitations seriously…. that they aren’t a series of unfortunate events but consecutive verses to the same song.

I’m just trying to figure out where I excel so that I stop beating myself up. It’s not that I got a bad hand, I’ve just been playing blackjack while the rest of the world plays poker.

At the very least, I know the capital of Canada.