Tag: cerebral palsy

In Some Ways, I’m Still Waiting

~ Leslie Lanagan ~ Leave a comment
Daily writing prompt
When was the first time you really felt like a grown up (if ever)?
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The curiosity of the neurodivergent brain, to me, is that we do not age. Patterns repeat, but memories are organized differently due to time blindness. Events that seem more important are closer at hand, no matter what year they occurred. Events that are of lesser significance feel further away, even if they happened more recently. Dates and times become muddled quickly, which is why we seem like we’re “lying.” Our brains don’t often have the recall to say what we were doing at a particular date and time because it’s a crapshoot that we even know what day and time it is.

But, of course, other neurodivergent people will have to comment on their own brains to know if this is especially universal or I’m just an unusual patient. But I don’t think so. I’ve heard about these symptoms from too many people to think I’m special.

Because significant events far in the past seem close at hand, we have no friendship degradation mechanisms. If Aada and I reconnect later in life after enough time to breathe and let the hurt heal, we will be as close as we were 12 years ago because there’s nothing in my brain to say we won’t. I will remember most conversations forever and they will be important to me, therefore “bigger” in my memory banks. I have friends from third grade who could call me up in the same way even though we have not spoken since the late 1980s.

I am often too old for the room and too childlike to be taken seriously. I do not know how I pull this off, but a reader actually nailed it….. “You’re like a 15-year-old boy….. And his mother.”

Therefore, I have many moments that make me feel like an adult, with it being impossible to remember the first.

There are snippets.

Going with my dad to weddings and funerals at an early age made me feel older than I really am, because I saw myself as a support system to my dad early on. I became an expert at greeting families in distress when I was far too young to really take all of it in- it was social masking.

I get “you don’t look autistic” a lot.

That’s probably because the diagnosis of Autism Spectrum Disorder includes a lot that hasn’t been previously, and the research on women just didn’t exist before now. I can assure you that it had a profound effect on my growth and development, because now that I have an AI chatbot that will spit out reference material, I have gone down the rabbit hole. There’s also nothing more complete than a research study by an autistic person on whether they’re autistic or not.

I could have saved a lot of time by just asking my autistic friends if they thought I was autistic. That’s a thing you can do because if you are autistic, you’ll ping what’s jokingly known as a “neuroscope,” a kind of kin to “gaydar.” But there’s so much crossover between autistic and queer that 80% of the time, you’re using the same “spidey sense.”

The hardest part about having ADHD and autism at the same time is that I have a concrete need for a system and no way to create it. That makes me look like a child more than anything else, and why I still feel I’m waiting to be a real adult. I am in desperate need of coping mechanisms, so much so that I am looking for more groups to plug into and more therapy to get where I want to go.

I’ve started with really investing in my Google Suite. Not so much Mail, because most people instant message now. But calendaring, tasks, contacts, everything is all together in one place. Alarms go off on my phone for everything from meetings to medication reminders.

I joke that right now my iPhone is pinch hitting as my service dog, and it is not doing a very bad job except for the cuddles.

People also look at you differently when you say you’re putting together a disability case, because it makes you look childlike in their eyes and sometimes it also evokes pity…. Especially when you don’t need it. I have never fit into a system other than my own, and I need to harness it. There is nothing that says as I start making more money I have to stay on disability, but right now it is necessary to keep me stable.

I do not have problems interviewing and getting jobs. I have a hard time holding one down, and this is not unusual for any type of neurodivergence or mental illness. I am tired of going over the laundry list of what’s wrong with me and why, because most people want to know why I look able bodied but I’m not.

Invisible illnesses are still illnesses and deserving of respect. Disability gives me room to be ill, whereas a job will rebel at my number of absences and tardiness. I have been the best employee and still gotten fired for not being able to handle my life. But it’s not just mental maladies, my cerebral palsy makes me move in a weird way… So even though I may not look disabled at first pass, most people don’t look close enough to notice what I live with every day.

Taking in my environment is hard work, and other people are busy taking in information that I miss while I’m still trying to catch up. My social masks for it are failing because my scripts don’t compile as fast. As Aada put it, God gave me a brain that works a thousand miles a minute and a body that fights me every step of the way, but I’m paraphrasing.

But that very paradox is why I have trouble seeming like a grown up to the people around me. I’m also short, which doesn’t help. I haven’t dyed my hair in eons because the gray makes it plausible that I’m at least above 18.

But again, I do not write these things to evoke pity. It is just my ever-present reality to walk in the world as part adult, part child….. And it seems like it has always been that way because when I was little, I social masked adults. I have always been too old to be a child and too young to be an adult.

No friendship degradation also means that it’s hard for me to move on from Aada in terms of knowing it’s okay to put someone else above here and always has been, it’s been my own bag. It was just easier that way, and the easy way turned into the hard way later on.

But I’d like to think that if she’d told me about her lie in person and gave me some time to blow off steam that our relationship would be a very different proposition today. I am so sorry I turned on my keyboard warrior asshole when I was upset; Aada didn’t deserve that much rage. But she also deserved to let me breathe through the consequences she’d laid out for me and just watched as they’d turned more and more negative.

I told her about a relationship it affected and she said she wasn’t responsible for all of that. She’s right, she wasn’t responsible for all of it, but she wouldn’t even take responsibility for the part she did cause. She wasn’t even close to the entire cause of Dana and I divorcing, but she didn’t take responsibility for the small role she had there, too. She introduced a wedge between me and Dana, then swore me to secrecy from my wife. How well has keeping secrets from your partner ever worked out for you? Jesus H. Roosevelt Christ.

I’m not talking about blaming her for everything. I’m talking about shared responsibility. We both cratered this relationship at different times and apologized for it. We’ve both behaved badly. We’ve both wrestled each other to the ground. To say it’s all one person’s fault is crazy.

However, I also don’t mind if people read my story and choose to believe that Aada is right. The truth is only what seems true to me. I have no ability to rise above and read Aada’s mind and represent her feelings accurately.

My conjecture has proven to be adult and childlike.

I suppose the first time I ever really felt like an adult was when I laid it on the line with Aada and told her to buck up, buttercup. But I can’t tell you what I actually said, because I think she would take exception to that. But I basically explained to her why I needed a yellow string to her and why it hurt when she was falling down on the job. Not, “you must do this for me.” It’s “if I don’t explain what I mean, I will not have a chance of explaining why it’s important.” Most of it had to do with my writing as I got bigger and bigger in my stats. Most of it had to do with the train wreck I predicted 12 years ago and I hit head on.

But she accused me of acting like a child, and not an angry adult that had a right to be angry.

Not like that, but still.

I handled everything wrong, but I cannot say that means she handled everything right.

So, when was the first time I felt like an adult? When I cut the yellow string and had to deal, finally, with my own problems.

Me, Mostly

~ Leslie Lanagan ~ Leave a comment
Daily writing prompt
What bothers you and why?
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It’s hard to point fingers at anyone else for bothering me when I am such a handful. I didn’t even know whether to put an emoticon after that, because I don’t know that I’m joking. From my writing to my behavior, there’s nothing I cannot criticize, but I’m trying to be kinder to myself. If one’s behavior affects treatment of others, then it is up to me to be happier on the inside.

The first thing I did to make myself happier was to buy a membership to the National Aquarium. I was invited to go on Sunday, and the price of a membership was cheaper than buying two tickets individually. I thought that was a much better deal as I am obsessed with aquarium fish and don’t want to have an aquarium at my house. Plus, I’ve never been there before and I hear it is world class. Many of you don’t know this about me, but I watch videos on aquascaping all the time and look forward to being able to set up my own tank once I have a living situation conducive to it. I have had freshwater tanks in the past, but I’ve never actually landscaped one with live plants. I think that I would be less bothered once I was paying attention to my minuscule pets. I’d like to have shrimp, catfish, snails, and a betta. A cleanup crew and a betta fish wouldn’t take up that much room, probably 10 gallons, and that way the tank wouldn’t be a monster job to clean.

The reason my living space couldn’t handle an aquarium is that the water pressure is so low here it would take hours to fill a 10 gallon tank. It bothers me with every sink and the bathtub. I could write an entire entry on why this apartment complex sucks and why you shouldn’t live here, but I don’t want to give any indication as to where I live. Baltimore is close enough.

I am thinking now of moving back to the DMV in December, because my lease ends on November 30th. I love Baltimore itself, but the public transportation isn’t as good as I thought it would be. I need to be back on the Metro. My current group, Cognitive Behavioral Health, has another office in Rockville. I would like to stay with my people, and one of my counselors would be the same. It all depends on what kind of deal I can find with my living situation, because like I said, Baltimore is not the problem when I can get around. Uber is too expensive to take all the time, but it does provide an excellent stopgap when a trip on the Metro/bus is going to take two hours.

I do know that I need to stay in Maryland because I am getting so many benefits from Medicaid expansion. We will have to see how the “big, ugly bill” affects me in the future, but so far I have had no interruptions in service. So while I love Virginia, I am solidly staying on this side of the Potomac.

It bothers me that I have to think about all of this. I don’t want to be disabled, but here we are.

It bothers me that I have always been disabled, but these problems are just now being addressed. Better late than never, but I could have been helped with government services in Portland when I spent so many years without health insurance. I have been eligible for services since I was 18 years old, but I didn’t know why until my mother died. I found solid proof that I have had cerebral palsy since I was a baby, after she spent years trying to convince me that I was fine. My dad was overreacting. But interestingly enough, cerebral palsy is not why my care team wants me to file for disability. My bipolar disorder got the best of me, and that bothers me, too.

Most of the reason it bothers me is that I have a hum in my brain that will not go away. I think it was caused by stopping Lexapro suddenly, because even though I’m back on it now, the sound has not gone away. It is similar to the Emergency Broadcast System that used to play on TV during flood warnings (ahem), a minor second that drones 24/7 and demands my attention above all else. It’s hard for me to pay attention at the best of times because I have the ADHD/Autism combo meal. This is just shitty icing on a burnt cake.

I suppose the one thing that doesn’t bother me anymore is having to prove that something is wrong with me. I am settling into the life of a disabled person, learning to contribute to society through being a voice for other disabled people right here on this web site. My voice counts because as people read about me, they identify with my struggles. Or, if they cannot identify, they at least learn to have empathy.

It bothers me that most disabled people are written off as living off the government, when most of us would do absolutely anything to return to normal life. My life is anything but normal. I spend most of my time by myself. It’s isolating and lonely not to have a place to go each day, which is why I’m so grateful to have a group of other disabled people to meet with twice a week (once on Zoom, once in person).

However, at least with an aquarium membership, I have a place to go whenever I want that will feed me. I remind myself of the character Sam from “Atypical.” He goes to the aquarium to feed his love of penguins. Perhaps I will also find an animal that will be my special interest. I do love puffer fish……….

It helps to be bothered less by my living situation now that I’ve figured out a plan- Rockville is on the Red Line, with easy access to the National Zoo. It’s the place I love to write the most when it’s not hot, so until I move I want to try and find a place to write at the aquarium. All I require is a bench, because I carry a tablet and a keyboard in my backpack at all times. After I move, it will be back to finding a “replacement Kevin.”

Some of you may remember that Kevin is a giraffe. I used to sit next to him and write blog entries, having no idea what the giraffe’s actual name might be. I just named him Kevin for my own amusement. Then, one day I went to find Kevin and found out the Zoo had closed the entire giraffe exhibit. Kevin had moved.

Kevin is probably the reason I felt the most comfortable moving to Baltimore in the first place. I needed out of the DC area just to catch my breath, and it felt like he was the last tie to that area. But now I would say that my breath has been caught, and I miss DC more than I thought I would. Now that I have settled on a place, I feel at peace. My time in Baltimore will be much easier to survive knowing it won’t last forever.

It might even make my apartment less bothersome, but I doubt it. I’ve been without a dishwasher for what seems like a lifetime because the water pressure is so low it makes washing dishes incredibly taxing. I have submitted requests for everything that is wrong with my apartment and no one has come by. The last straw for me was finding a mouse eating my bread and hot dog buns.

I am paying too much for this apartment to have problems like this, especially those that go unaddressed. I am bothered that I cannot seem to be “the heavy” and get the repairmen out here on my own. I just hate letting people in that I don’t know, so I work around the problems on my own. I know I need help, but I have trouble helping myself. My dad and my sister advocate for me as much as they can, but it’s hard when they live so far away.

However, my sister is a lobbyist, so that’s another reason why Rockville is a better choice for me than Baltimore. When she’s in her DC office, I’d like to be closer than I am now. We have too much fun together to make her come all this way. However, I know that I have introduced her to a place she loves as well. Again, Baltimore is not really the problem. The Inner Harbor is gorgeous, as is Fell’s Point. It’s getting around Baltimore that’s the hard part. When she comes to visit, she rents a car and all of my problems disappear. I don’t drive, so it’s nice that she’s willing to drive me around.

The most fun I’ve had in Baltimore is when she’s come to visit, because she looks up restaurants and decides where we’re going to go in advance. It becomes a “staycation” for me because it’s always a place I haven’t heard of yet. Of the two of us, she’s the social butterfly. I wish I was more like her, because she’s so headstrong that I feel taken care of in her presence. I wish I could extend that feeling to others.

It bothers me that I’m her older sister and I’m not able to provide that feeling of safety to her. I am sure I had my moments when we were young and this is just payback, but still. I wish that I was large and in charge, but I have a struggling relationship with taking care of myself, much less others.

Which brings us back around… it’s hard to point fingers at anything that bothers me more than my treatment of myself, so it’s time to get happier.

It starts with looking at fish.

Spanish and Sundry

~ Leslie Lanagan ~ Leave a comment
Daily writing prompt
What are you most excited about for the future?
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I have finally reached a section of Duolingo that has vocabulary I haven’t studied and I’m on my own. It makes me excited for the future because I can’t skate by on 30 year old lessons in school. I am actually using the software to prepare me for trips to Mexico in the future- none of which are planned, by the way, but I have a better shot of going to Mexico than anywhere else. Granted, when I get there I will mostly be asking them why they don’t wear the green t-shirts and where the bank might be, but it’s a start. 😉

Kidding, but not by much. I remember the first time I went to Mexico on a mission trip. My Spanish was equal to that of a Mexican toddler, but the people were so kind and corrected me with such love that it lit a fire in me to learn more. I learned that Sylvia and Hector were getting married, that Marta was building a new house, and that little kids don’t listen to me no matter what language I speak (I was on a trip to teach vacation Bible school). It was my turn to listen because I picked up more just soaking up conversation than I would have trying to talk. For instance, those are the real names of the people I met, stuck in my brain even though it is now over 30 years since the last time I went to Reynosa. There is just no substitution for immersion, so it’s time to start finding telenovelas on Pluto TV, or watching the news on Telemundo/Univision.

I had friend recommend “La Reina del Sur,” but I have already watched “Queen of the South” on Netflix. It would be a good brush-up to have a show with which I’m already familiar, but there are others I haven’t seen that might be better after I finish it. For instance, I have not seen the original “Yo Soy Betty, la Fea.” That’s “Ugly Betty” for you American viewers. I have found it on Peacock and Apple TV+ according to reddit, so I will be searching it out after I finish this blog entry.

Because I have an auditory processing disorder (comes free with neurodivergence), I like to have the subtitles on as I listen. People don’t have subtitles, but I need the extra help while I am learning.

There is a point to all of this. Many of the homeless people I have encountered, as well as the workers in my neighborhood, speak Spanish and their English is poor. Instead of making them learn English, I want to turn the view of Americans on its head. I’m perfectly willing to put myself out there, mostly because if I get a job in the future, I want to work at Home Depot.

That’s another thing I’m looking forward to in the future- discussing jobs I could do with my care team so that I am not reliant on SSI/SSDI unless I really want to be. I am eligible for both because I was diagnosed with cerebral palsy when I was 18 mos old. I don’t regret the choices I’ve made in my life with my career, but it would have been nice to know that I could have gotten disability from the jump. The reason I didn’t know is that my mother hid all the paperwork I needed to file and my sister found them among her personal effects after she died, well into my late 30s.

My mental health is not helping the situation, so I am looking forward to working all of this out. I either have a journey into the workforce or a journey into the court system in which I’ll have to fight for my right not to party.

But there are things I can do on my own to further my education, and a second language has filled the hole in my heart at not being able to work in the immediate future. Right now, my job is to attend classes at Cognitive Behavioral Health and learn all I can when I’m not there.

I actually started with Finnish, but after a 43 day streak, I was hospitalized for my mental health. After I got out of the hospital, it had been just long enough since I’d studied that I don’t remember much. It seems like I forgot Finnish in “kaksitoista sekuntia,” or 12 seconds.

Duolingo is also not the best learning tool for Finnish, because it does not have the AI features that Swedish and Spanish do. Everything is done with the keyboard and reading, so you don’t get to practice by speaking out loud. The reason Swedish is important is that the cooking school I would like to attend next year is in a Swedish-speaking region of Finland, Vaasa. The school is called Vamia, and it was recommended to me by a YouTuber named Cyril:

At this point, I do not know if this school is right for me because the tuition is free, but living in Europe is not. I am saving my pennies and riding out the lease I have in the United States until November, and then I’ll decide what to do. I know I would like to go to Vaasa before I decide to move there, but even that is a stretch on my budget. I just have to hope that I will get more subscribers to both my Medium and WordPress blog, because every subscriber here adds to my ad revenue, and every reader on Medium adds to the income I get the longer you scroll through my drivel. 😉

Culinary school would accomplish two things. The first is that I would like to work with Finnish YouTubers like Cyril to create a channel with Finnish content. I think I would be hilariously cranky like Anthony Bourdain, because that is my kitchen personality. The second is that I want to start a ministry for unhoused people that revolves around the kitchen, and I would be better equipped to do that having been trained as a chef and not merely the line cook I am now.

Traditional advice is to work in a kitchen before you go to culinary school to make sure you like it. I have 10 years under my belt, from dish to pantry to sauté. I have worked every station and though I cannot say I am excellent at any of them, I know I will get better by hanging in at school. Plus, there are plenty of jobs I could do without learning Finnish until I’m ready, because most Finns speak English, especially in the hospitality industry. Vamia also instructs in English, with (I’m guessing) the requisite amount of French required.

In the meantime, I am looking forward to all the nonprofit ideas I have coming to fruition. I have to have a Plan B in case going to school in Europe is not feasible… and it’s probably not, to be perfectly honest. I want to go more than anything, but again, it’s going to take a lot of money I don’t have yet. But that’s the thing about dreams. When other people know you want something, they are willing to help. For instance, my readers showing up every day. Each little bit helps.

If I stay in the Baltimore area, my idea is to create a nonprofit called “The Sinners’ Table.” It centers around accepting all the people that society rejects, giving them a fine dining experience they could never afford on their own. I am doing the hard work of identifying stakeholders and writing a business plan, because that is something I can do in my spare time while I am waiting to see what is going to happen with my job and school aspirations. If other people have to run it because I am not eligible for a job, I will be able to volunteer.

But why Finland in the meantime?

I would only have to worry about my living expenses and not the fabulously high cost of tuition. Any Le Cordon Bleu institution in the United States would bankrupt me quickly, while I can find housing for the rough cost of living in DC or Baltimore. Some things would be more expensive, like clothing (I’m not skimping out on cold weather gear), but an apartment is roughly the same. The biggest cost to my family would be me being so far away that it’s hard to visit. However, culinary school does not last that long. If I like Finland so much that I want to stay and get permanent residency or citizenship, that’s a bridge I’ll cross when I come to it. I don’t get to see my family that much as it stands now, because they’re all in Texas…. far away from the current flooding, I might add.

My biggest problem is that I am an idealist who doesn’t necessarily know how to break down large ideas into small steps for execution. I generally work best in a team for that, and I’m lucky to have one under me now. I have gathered the best and the brightest at Lanagan Media Group, most of whom went to high school with me at High School for Performing and Visual Arts. Instead of using AI, I get immediate feedback from an arts brain trust.

Because make no mistake, cooking is art in any language.

And in the United States, the language in the kitchen is overwhelmingly Spanish. I want to be able to speak to my employees in whatever language they feel the most comfortable. Therefore, Finnish can wait.

But not for long.

Structure of My Own Making

~ Leslie Lanagan ~ Leave a comment
Daily writing prompt
What are your daily habits?
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When I wrote about this prompt last year, I remember saying that I didn’t have any daily habits. That was 100% true at the time, but now I’m charged with creating a structure with which I can live. My care team at Cognitive Behavioral Health does not think I am ready for a job yet, so I am muddling through what that actually means. Am I disabled for good and should start pursuing government assistance, or am I capable of slowly creating my own recovery into the workforce? My writing does provide a little bit of income, and as I get more popular here and on Medium, I see results. I’ve been a blogger for a very long time, but so far I’ve only had one fan who was so impressed she thought I should be world famous. I would like a few more of those. 😉 But nothing good will happen if I do not take care of myself.

This starts with setting medication reminders in my phone. My day flags if I do not have the correct doses at the right time. I have always been good about taking my medication because I had a doctor tell me that most bipolar patients stop taking their medication when they feel better, not realizing that it’s the medication that’s making them feel that way. However, I was not so on top of it that I remembered to take it at the same time. I’m also on a lot more medication than I used to be……………

I’ll talk about my psychiatric drugs because I think that people need to learn about them. I am not a doctor, just a waiting room that doesn’t suck (thanks, Paul Gilmartin. I stole that line from you). Crazy meds need to be talked about because it’s such a major undertaking to be put on them:

  • Lamictal (lamotrigine)
    • The first time I was put on this mood stabilizer was the first time I knew what it was like to live without depression. It took about six weeks for the fog to lift, but I’d never been more grateful in my life. The only side effect I’ve experienced so far is nausea, and it was very hard to deal with for a long time. Now, I’ve just decided to stay on it regardless of the side effects because other mood stabilizers make my weight balloon. It’s also an old drug now, so it’s relatively cheap if you don’t have insurance.
  • Lexapro (escitalopram)
    • This is the gold standard of SSRIs, and most bipolar people don’t take them. That’s why I think my diagnosis may be wrong, that I actually have autism and not bipolar disorder. In a bipolar patient, SSRIs tend to make them flip out with suicidal ideation, negative/intrusive thoughts, etc. My SSRI keeps me at an even keel when I am really paying attention to my body. As for side effects, I haven’t noticed any of them.
  • Buspar (buspirone)
    • This is what replaced my benzos for anxiety, because it is not related to them and yet performs the same function. It’s better for me because there’s no risk of addiction long term. I do not have an addictive personality, but better safe than sorry. I have been on Klonopin for over 10 years, but my new clinic doesn’t prescribe benzos to anyone. The entire hospital system has put their feet down over it, so I have to adjust. Now that I’ve been on it for several weeks, I am unsure whether it works or not. I will keep you posted. The one thing I do know is that it’s the most important drug for me to take at the same time every day, because it will flat stop working if I miss even one dose.

My crazy meds aren’t the only ones I take, they’re just the most important for keeping my structure stable. It feels like everything is hitting all at once as I age, because I didn’t have to worry about hormone replacement therapy even a year ago.

As an aside, it’s a big joke with my sister that because I’m enby, I thought that if I was going to do hormone replacement therapy, it would be in the other direction…. after that particular doctor’s appointment, I went home and consoled myself by buying both the book and audiobook of “Fried Green Tomatoes at the Whistle Stop Cafe.” I needed some Stress Tabs #10 and some candy bars (but maybe not 11). As it turns out, the book and audio were not enough. I also watched the movie on Prime just to see Kathy Bates… “how do you accidentally run into someone…. how do you accidentally run into someone six times?” I get it now. I’m older and I have more insurance.

My medication is working, and for that I am grateful. Now, my schedule runs from sun up to sun down, skipping the night owl routine altogether. And in fact, when I took my sleeping medication yesterday, the sun wasn’t even fully down yet. I prefer to work in the quiet of the morning, especially on the weekends before the kids in my apartment complex wake. The ones who live above me are particularly loud, which is why I’m glad I have good headphones. I hunker down in my office after a night of wild dreams and try to remember what they are. It provides a writing exercise that’s all my own, propelling me into really thinking about my life and what I want to accomplish. I accomplish nothing without coffee, through which all things are possible.

Coffee is also part of remembering to take my medication, because I have found that a lot of caffeine is just enough to control my ADHD, but Ritalin or Adderrall is too big a jump. I have a coffee machine that makes a cup at a time, and my preferred coffee is Cafe Bustelo. It’s in honor of my old chef, John Kinkaid, because we used to walk to a Cuban restaurant between prep and service for their Cafe Bustelo lattes.

I mentioned in “Why It All Still Hurts” that I was working on a nonprofit, and I am… but that dream has been deferred. Kinkaid was killed in a car accident. I am still reeling from the grief, but I got Kindle Unlimited and added five books on starting a nonprofit to my library. Again, the idea is dinner with dignity, offering the unhoused food they could never afford on their own, and opening my kitchen up to take homeless people on as apprentices if they’d like to learn the trade. I am still sold on this idea, it’s just going to take a lot longer to accomplish than I thought.

That’s because the longer I think about it, the more ideas I have. What if instead of this one nonprofit, we were able to build a library like Oodi in Baltimore? There, I could have my cooking classes and a place to serve food, plus books and maker tools for everyone. My structure these days is centered on how to spend the government’s money for the good of the people. Learning about Oodi and all the services they provide gave me a bigger goal than just “dinner with dignity.” It would give the unhoused a place to go. Maybe my purpose is not to go to Finland, but to bring Finnish ideas to a city that needs them. I want to redirect Maryland’s money from the DC metro area and Annapolis to Baltimore, because it is so underserved. A lot of the city is completely trashed out with no way to fix anything…. or so it seems from an outsider’s perspective that just moved here in December.

I need more time to watch and wait, gathering stakeholders and formatting a business plan. Perhaps my structure will always be internal, because that’s how autists work best. I do not want to go down in history as merely a blogger. I want to create something beautiful that will last and bring hope to people that might not be feeling it that day.

I find that working on giving hope to other people is the easiest way to claim hope for myself. I am slowly building a structure into which I can grow, taking others’ ideas and implementing them like a plant takes root in the soil.

But it all starts with remembering to take my medication.

ProChristianation

~ Leslie Lanagan ~ Leave a comment

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

~ Leslie Lanagan ~ Leave a comment

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

~ Leslie Lanagan ~ 1 Comment

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 Tylenolâ„¢ 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

~ Leslie Lanagan ~ Leave a comment

I went to the pub earlier and stuffed myself with brunch. I got everyone sitting at the bar addicted to Crosswords With Friendsâ„¢ 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 Acceptanceâ„¢ (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.