Beyond the #PAWECMHAA

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The other day, our heater was on the fritz for about 48 hours. Under normal circumstances, this would not be that big of a deal. You could just throw on an extra sweater or drink some warm tea. You could snuggle up on the couch with your cocker spaniel or a random stranger. Whatever you’re into, I don’t judge.

Or, perhaps— more likely— you’d say to me, “Get a grip, girl. You live in California. The gallon of milk in your refrigerator lives in a colder climate than you do.

When you have a disability like SMA, though, this isn’t so simple. Because many of us are in wheelchairs, our circulation isn’t the best. So, our bodies are often super sensitive to fluctuations in temperature. Putting on more layers of clothing can also become physically cumbersome. Meaning, if I wear that giant Christmas sweater on top of the thick fleece hoodie I bought at GAP, there’s a good chance I won’t be able to move my arms to do pretty much anything. Like grab the phone to call for help. Or, eat a bowl of warm soup. Or, even effectively pick my nose. I would be like the crying little brother in The Christmas Story that flails around in an immovable snowsuit. It wouldn’t be pretty.

So, when my heater went out, I quickly thought, “FUCK, this isn’t going to go well for me.” I immediately messaged the HVAC repair man and he said he’d try to make it out in the next couple of days. Then, I quickly consulted my weather app while I still had enough warmth left in my fingers to operate my iPhone. It said that we were in for a stretch of below-normal temperatures— lows around 34°. I felt my weak little muscles shrivel at the numbers— just as an insecure man’s penis shrivels up in the presence of a confident and capable woman. (I could easily make a reference to Donald Trump at this point. But, I won’t.)

Anyway, I can hear non-California residents guffawing at this forecast. And, before you claim that even hairless kittens can survive that kind of cold, I’m going to tell you that I really don’t care. IT’S STILL COLD!

At that moment, it became a race against the clock— to see how much I could get done before the temperature inside my house dipped too far down. To the Point-At-Which-Elizabette-Can’t-Move-Her-Arms-Anymore. Also known as its scientific acronym, PAWECMHAA. If you are curious, this measure is roughly around 56° Fahrenheit. So, in a whizzing flurry, I dashed around my house doing all the things that I had been procrastinating from doing for a while. I balanced my checkbook, updated my Christmas card list, wrote some emails, and then plucked a few stray hairs from my chin. I was more productive in those few hours than I had been in days.

But, eventually… as the day progressed, the PAWECMHAA was reached.

I pulled out my rechargeable hand warmer and held it in my palms like a fragile premature infant. It was wonderful. I praised it. Cooed at it adoringly. It was a cozy bubble of warm bliss.

However, I quickly discovered that it only worked for about 1.5 hours on one charge.

As the heat faded from my palms, I cursed the cradled device, “This baby is a piece of shit. Argh!

So, I had to come up with a new plan. Drinking tea helps me think, so I had some. And while my hands were cupping the warm mug, I had a thought.

I would get the largest coffee mug in the cabinet and fill it with water. Then, it could be microwaved for two minutes until the water grew super hot. Due to the magical properties of water to retain heat (yay, science!), I could use it like my rechargeable hand warmer. But, it would only take two minutes to rewarm the water— a major plus when dealing with extended PAWECMHAA temperatures.

I started by holding the outside of the cup… then, as the water slightly cooled, I began dipping my fingers inside the water. The plan worked brilliantly.

The next day, as the temperatures continued to dip, my morale grew low. And as I sat in my kitchen dipping my fingers into my giant pumpkin mug of hot water, I had a dramatic realization. I would never survive in a cold climate. Never. In fact, if I had been a member of the Donner Party that attempted to cross the snowy Sierra Nevada Mountains in 1846, I would have been the first one dead. Without question.

And then they would have eaten me.

To be frank, they wouldn’t have even had to wait until I was dead, because once PAWECMHAA was reached, I couldn’t put up much of a fight, anyway.

So, it was in this state that the HVAC repair man, Ricky, soon found me: bundled in a knitted blanket, dipping my fingers in a mug of hot water and muttering about nineteenth-century cannibalism.

It was a good thing he came when he did.

Within an hour, or so, Ricky had located the issue, and got the heater running again. As I heard the whoosh of hot air burst from the vents, I felt a tear of joy on my cold and numb cheek.

And, after a short while, the thermostat climbed beyond the PAWECMHAA. I said a prayer of thanks.

I would not be on the menu tonight.

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The Woman Behind The Lens

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We pass these photographs every day. In our phones, on a wall, or in a frame on a dusty dining room table. We may glance at them, but how often do we really see them? Time moves like a camera’s flash, careening forward leaving scant seconds to notice the life inside those images. The love, beauty and perfection. The souls that we adore. And in that moment, we chide ourselves for our inattention… for neglecting to appreciate the living art of these memories. These people. These gifts.

All given so humbly by the woman behind the lens.

The woman never sought praise or recognition. But, merely to create something real. Heartfelt. And genuine. Something that, truthfully, held a striking resemblance to her own spirit. To capture a snapshot in time and bring out its love. Its humor. Its joy. She was a storyteller in her soul, and our lives were her inspiration. And each story she told was a testament of her own sincerity.

All so openly shared by the woman behind the lens.

The woman saw in us what we didn’t even see in ourselves. A possibility. A strength. A hope. In her work, we saw these traits reflected back to us. In ways that we didn’t expect. And, somehow, because of that, we became that person she saw. The better person. The stronger person. The happier person.

All because of the woman behind the lens.

Yet, the woman knew that we’re busy, that we’d gather her work into a drawer, onto a holiday card, or post it on our social media pages… and maybe we’d forget. But, just as she knew that we’d quickly move on, she also knew that one day we’d pause. We’d take another look that would fill our hearts once more. And we’d remember.

All thanks to the woman behind the lens.

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photo copyright: Rachel Azevedo, 2018.

Adventures in Physical Therapy

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Given that I’ve had a disability my entire life, you’d think that I’d be fully-immersed in all medical-related things. But, that’s just not true. For example, despite my love for WebMD and Wikipedia, I’m not familiar with every pharmaceutical brand on the market. I don’t know the best medication for type 2 diabetes or psoriatic arthritis. But, from the commercials that I’ve seen on television, each of the available medications have potential side effects that include temporary blindness, liver damage, suicidal thoughts and/or heart failure. It’s an uplifting assortment of options.

Anyway, while I do know a lot about stuff related to Spinal Muscular Atrophy (SMA), there’s a lot of other things that I don’t know. Stuff that, as an outsider, you’d think would be an everyday part of my life.

Like physical therapy.

This statement might come as a bit of a surprise. You might be thinking, “You mean the crippled girl doesn’t go to physical therapy every day? What a slacker! How does she expect to get better if she doesn’t do that??”

Here’s the thing: until I began Spinraza treatments last year, the expectation that I could maintain or improve my strength was pretty much a non-starter. An impossibility. A don’t-even-dream-about-it kind of thing. You know, like thinking that Kanye West will ever not be super weird?

This isn’t to say my physical therapists in the 1980s didn’t try their damndest to make this not be so. Defying the laws and biology of SMA, my childhood therapist pushed and shoved me into standing boxes to straighten my curving back. They placed heavy, painful weights on my legs and hips to try to reverse my irreversible muscle contractures. They tried to push my body into doing things that it just simply couldn’t do. They weren’t intending to be cruel, but their understanding of SMA at this time just wasn’t very advanced. They pushed more than they should have. They expected more from me than I could physically deliver. They were doing what they thought was best, though. But, these good intentions didn’t mean that this period of my life still wasn’t an utter hell on earth.

My confidence took a beating at this time, as well. It was hard not to feel that way when my inability to continue to participate in these physical therapy sessions was seen as a result of my laziness– and not the natural progression of my disability. The fault was with my motivation and my drive. Not the fact that it was an excruciating torment to endure… with no progress to show for it. In fact, the opposite happened. I progressed anyway. As all of us with SMA have done. It’s biology. Not laziness.

It’s perhaps not surprising that I eventually became withdrawn during these physical therapy sessions… and then increasingly uncooperative. Finally, it got to the point where during designated therapy time, I would hide in corners of the elementary school so the therapist couldn’t find me.

It was the biggest act of rebellion I had ever pursued up until that point. And it was also a moment in my life when I felt the most unheard.

Those gut-clenching moments remain with me to this day. I’ll always be that anxious little girl in the school physical therapy room, even though it was over twenty years ago.

So, it is with the baggage of those memories that I’ve recently reentered the world of physical therapy. My revolutionary Spinraza treatments have led to some small improvements in my strength and stamina. Which, given the progressiveness of SMA, is fucking awesome.

As I’ve written here before, I’ve been doing some informal exercises at home since beginning treatment. And it’s been very helpful. But, my Stanford medical team advised me that it was time to take it up a notch. So, I was referred to a local physical therapist to develop a custom exercise plan.

Yesterday was my very first consultation. I’m not gonna pretend that I wasn’t nervous. That I wasn’t worried that the physical therapist was going to push me too far beyond my ability because he didn’t have an understanding of SMA (like my old therapist all those years ago). Or, that I wasn’t dreading the whole experience… the way Trump dreads a wind tunnel.

So, what did I do? I did what any self-respecting Type A person like myself would do. I obsessively prepared for my appointment by typing up an information sheet for the therapist about me, about SMA, and why I was there in the first place. I also harassed the receptionist with warning calls that I would perhaps be a high-maintenance patient. Not like the everyday car accident victims and torn rotator cuff patients that they saw everyday. I would be a whole bundle of crippleness. The person that, when presented with a new patient form, would circle the ENTIRE BODY as an indicator of where I’m having trouble.

I’m sure my neuroses were quite evident in my voice on the phone. And I’m certain that this left an impression on the poor receptionist because when I rolled into the office, she instantly called me by my first name— despite the fact we had never met.

I filled out more medical history forms. And I had to resist adding smart-ass remarks in the margins. How could I not answer the question “How long have you had this issue?” with a sarcastic reference to the Reagan Administration?

I only have so much willpower, after all.

When the physical therapist, John, came over a few minutes later, though, he was remarkably calm. And, despite my fears, he didn’t look like a deer in the headlights when faced with probably the most disabled patient he had ever encountered.

I wasn’t a truck driver with a case of whiplash. I was a whole-lotta-weird with muscles that behaved in ways you wouldn’t expect. (Come to think of it, also kinda like Kanye West.)

John quickly admitted that he had never encountered SMA before. (Most medical professionals actually haven’t– this is not unusual.) But, that fact didn’t stop a gleam of excitement from entering behind his eyes. I recognized the same look in his gaze that I would get back in 1990 when I got a brand new set of Legos. The look that Ina Garten still gets when you flop a freshly-caught, raw sea bass on her kitchen table.

The look that says: “Oh, boy! This is way more fun than a hip replacement!”

I’m happy to report that he asked all the right questions… he was engaged and interested. And incredibly collaborative. It was just the experience that I had been hoping it would be.

I was being heard.

And, for that, I was so very grateful.

For the time being, I’ll be heading to physical therapy once a week, so stay tuned for more updates on my progress. I can’t believe I’m saying this, but I’m strangely looking forward to it!

I do wish there was a way that I could have told that to my ten-year-old self, though. That the experience didn’t have to be the way I endured it… and that it could have been much, much better.

Maybe then I wouldn’t have had a reason to hide.

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How To Be Rocky Balboa

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Since I’ve begun my Spinraza journey, I undergo periodic assessments that measure my muscle and respiratory function. These assessments are quite exhaustive and make even the SATs look easy— you know, like one of those “personality quizzes” that you find online? The ones that tell you whether your personality resembles a baked potato or a goat cheese flatbread?

Anyway, these assessments can be brutal. Every tiniest movement and tiniest muscle is measured. And then measured again. This thoroughness isn’t just meant to drive a person loony (which it can), it’s for scientific purposes. Mainly to see how this crazy-expensive treatment is actually working.

I’ve seen measurable improvements since beginning treatment, that’s indisputable. This is amazing given the progressive nature of Spinal Muscular Atrophy. After all, merely slowing or halting progression is also a substantial goal. So, seeing an improvement is a bonus.

But, with the need for these assessments comes a unintended side effect for the patient— stress, worry and anxiety. When you’ve fought long and hard to receive the drug (while many wait all around the world to have access to it), you’re terribly frightened of having it taken away. There’s an unspoken need to prove yourself during these assessments. To prove that you are worth this expensive treatment. To prove that all of us with SMA are worth it. That’s a lot of pressure. Especially to a person like me that is already competitive. A person like me that breaks out into hives if they aren’t scoring in the 90th percentile.

My outstanding medical team has attempted to calm these fears and anxieties. They’ve told me to not put pressure on myself. But, I know that the data from assessments, like mine, are being compiled into a study that will be used to potentially help (or hinder) adults with SMA around the world in their fight for treatment. So, I know it does matter. Despite how much they may try to allay my anxieties.

Recently, I headed to Stanford for another assessment. Like a prizefighter, I had been prepping for weeks beforehand. There were a few tasks that I had been unable to perform in my prior assessments that I was determined to master this time around. Mainly, tearing a folded piece of paper and opening a small plastic container with a snug lid.

The looming nature of those tasks were swimming around in my mind in the waiting room as I nibbled on my turkey sandwich.

Please let me tear that fucking piece of paper. I’m gonna be so pissed if I can’t do it.

What if I get performance anxiety? There’s no Viagra for paper-tearing.

Ugh, what if I can’t open that container, either?? Dude, if that happens I’m gonna run over the damn thing with my wheelchair. Just see if I won’t.

This internal dialogue continued in my mind until, thankfully, the physical therapist came to take me for my first assessment. In the PT room, all the assorted gizmos were laid out on a table. At the sight of the tiny weights, containers and charts, my heart started to beat faster— making me exceedingly glad that I had taken a tiny Xanax thirty minutes before (in between bites of my aforementioned turkey sandwich).

But, before the therapist could give the first instruction, I blurted out: “I’m really nervous about this. I even took a Xanax a few minutes ago. I’ve been practicing opening a container and tearing a folded piece of paper at home. I really, really want points for those tasks.

The therapist arched an amused eyebrow, “Oh, I definitely remember how you feel about getting points.

During my last assessment, I nearly held her hostage until she allowed me one more chance to earn the one point I was determined to get. It wasn’t my proudest moment. There might have even been tears (not sure if they were hers or mine, though). It’s a good thing she has a good sense of humor. Otherwise, I think I would have seemed pathetic.

It’s going to be fine. You really shouldn’t worry—”

I interrupted her, “I brought with me a stack of paper that I’ve already torn at home as evidence that I can actually do it. It’s in my backpack if you’d like to see it.

Laughter pulled at the corner of her mouth, “Uhm… yeah…” She paused and looked at me as if she was suddenly REALLY glad that I did take that Xanax, after all. “I’ll just pretend you didn’t say that.

Are you sure? I mean, I can totally show you—”

No, no. Let’s just not.

And so, the assessment began. My range of motion was checked. I was asked to squeeze and poke various technical devices— each measuring the strength in various muscles of my arms and hands. I was asked to lift coins and weights of various sizes. I was asked to pull a rabbit out of a hat. (Okay, I might have made that last one up.)

Things were going really smoothly when she grabbed the dreaded plastic container. “Okay, now it’s time for this,” she waved it in front of me as if the motion could magically stop the sweat from collecting in my palms.

I grabbed it. Yanked. Pulled. Strained.

And nothing happened. I began to panic—the litany of anxiety returning to pound into my head like the clanging of a 1950s typewriter.

Sensing my emotions, the therapist took the container and set it on the table in front of me, “How about we come back to that?

She then folded a piece of paper and handed it to me to tear in half. My attention was still so focused on the plastic container that I had the paper torn halfway down the middle before I realized that I had actually done it.

My heart raced in joy as I finished tearing the paper. Then, I slammed the two halves down on the table like Rocky Balboa.

Ha!” My cry was loud and victorious. Sylvester Stallone could kiss my butt. (Actually… Eww, no. Maybe not. He’s old and he’s taken way too many steroids over the years.)

Feeling more confident, I demanded, “Give me that container back so I can try again!

And you know what?

Nothing fucking happened.

I still couldn’t open it. My mood plummeted as I watched the physical therapist write a “0” on the assessment for the task of opening the container.

My inner soul cried, “NOOOOOOOOO!”

I hadn’t been this upset since the original DuckTales animated series was cancelled back in 1990. I was despondent. Even though I had torn the paper, it wasn’t enough. I wanted that container. I needed that container.

The assessment was over. As the physical therapist walked away briefly, I glanced once more time at that damn piece of plastic. With my sorrow, I felt all the muscles in my body relax.

I was defeated. With a sigh, I absently grabbed the container. And, before I knew it, I had removed the lid.

My mouth dropped open in shock. I had done it.

But, the physical therapist was on the other side of the large therapy room. She didn’t see me do it. It was like scoring a perfect 10. Only not at the Olympics where it truly mattered.

I sputtered, “OH MY GOD, GET OVER HERE NOW! LOOK AT THIS!”

When the therapist returned, I quickly did it again. I was suddenly a Ziploc Plastic Container Opening Machine.

I’m going to get points for this, right? Right?” I knew I sounded frantic, but I didn’t really care.

She chuckled, “Yes, you will.”

I wasn’t fully satisfied. Not after all I had put myself through. “While I’m not saying that I don’t trust you, I’d really like to see you write it down. Right here in front of my face where I can see you do it.

If it will make you feel better?

Oh, it will. I promise you.

She grabbed her pen and changed the “0” to a “1.” It was the most beautiful number I had ever seen.

Ha!” My cry was loud and victorious.

Maybe Rocky could kiss my ass, after all.

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Febreze, Special Sauce & Spinal Injection #7

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I had my 7th dose of Spinraza this week. You’d think I’d be a pro at this by now— but, unfortunately, receiving a complex lumbar puncture isn’t something you can train for… unlike a marathon or a really competitive game of backgammon. I actually don’t even know how to play backgammon, but it sounds like something that sophisticated people would do. Like playing bridge. Or committing white collar crimes.

Anyway, when you have a wonky and complex anatomy like mine, each injection is its own story. Its own event. A prior injection can’t, in any way, predict the outcome of the next. Just because one injection was easy, that doesn’t mean that the next can’t be a fucking disaster. I’m sure if you’re the parent of a toddler you will completely understand this concept. After all, while your child may behave on one trip to Target, that doesn’t mean that the next time he won’t pull an entire display of Febreze on top of his head.

As I shared on this blog previously, my last injection was a challenge. So, I went into this treatment with open eyes, and the reasonable expectation that there could be copious tears at some point in the day. (Just hopefully not the doctor’s.)

Anyway, the drive to Palo Alto was decidedly uneventful— the sky shifting from Central Valley smoke and haze, to a Bay Area overcast. But, as we got off the bridge and arrived to the Neuroscience Center, the morning sun opened up and a cool, slightly crisp (dare I say, even fall-like?!?) air met my skin. If you know me, you’d know how much I love the autumn. So, I tried not to let this omen get my hopes up for how the day would turn out. I told myself, “Elizabette, calm down. There’s still plenty of time for you to be the kid with the Febreze on their head.

While waiting for the procedure, a research associate came and asked me if they could save the spinal fluid they collect from me for scientific purposes. I clearly like science, so I signed the paper and said YES. After all, it’s not like I am going to take my spinal fluid home and put it in a jar by my bed. That would be creepy. Besides, I have no room for it on my nightstand, anyway. That’s where I keep all my photos of George Clooney.

By this point, I really started to have to pee. As I have to hydrate a lot in the days before the injection, my bladder was holding a crap ton of urine. When I say that, I’m actually not kidding. Lucky for me, I think I was given the bladder of a much larger primate. Like a gorilla. Or Tom Hanks from A League of Their Own. You know that scene in the movie where he takes a drunken piss in the locker room urinal? And his pee goes on for over a minute? Yeah, I can totally do that.

Anyway, I was secretly hoping that the research associate would hurry up and go away so that I could get to the point of the morning where I got to use the restroom. If she didn’t skedaddle when she did, I would have probably signed away my own pancreas just to get her to leave. I think I could have found a way to make due without it.

Thankfully, it didn’t come to that, so I was able to go empty my mega-bladder in fairly short order before being taken back to the procedure room. After I was laid on the table, on my left side, the doctors began taking measurements on my back— to try to locate the ONE open spot in my spine. The only part that isn’t obstructed by the two scoliosis rods nestled along my vertebrae. They fired quick x-rays to line up their needle approach.

Watching the big fluoroscopy machine as it swiveled and swung around me, gathering images, and listening to the doctors strategize on their game plan, I started to feel a rumble in my stomach. Even though it was only 10am, lunch was beginning to sound really good to me.

Thinking about food is one of my favorite things to do. In fact, I daresay I like it even more than pumpkin spice lattes and making jokes about Donald Trump. And that should say a lot since I like those things VERY much.

It shouldn’t come as a surprise that, at this point, my mind began to wander. So consumed by the thought of food, I didn’t notice the giant needle slide into my spine and the sting of the lidocaine that numbed the passage. Instead, I imagined the In N Out Burger that I suddenly wanted to eat. And the stack of smothered “animal style” fries that I would get along the side. Over the scent of hospital antiseptic, I could taste that damn special sauce that I love so much.

It wasn’t long before I started drooling on the sterile pillow. I wish I could say that I made this last bit up, but I didn’t. I literally left a puddle on the light blue fabric. It was kind of gross.

Anyway, so distracted by my thoughts, I gave a jolt when the needle penetrated into my spinal canal and a zing of cold sensation flew down my right hip. Immediately afterward, the attending doctor proudly announced, “Here it is” as my spinal fluid dribbled out of the needle— evidence of the procedure’s success. They collected some fluid (for their aforementioned research purposes) and then injected in the Spinraza.

Seconds later, the procedure was done and the needle was out. Dazed by the speed with which it had all happened and still in a haze of pickles and grilled onions, I asked, “Wait, how long have I been here??

The nurse laughed, “Only about 20 minutes. This is a record time!

I was thrilled. I was definitely NOT going to be the kid with Febreze on their head this time. My stomach grumbled loudly, again, sensing that lunchtime was suddenly going to be a whole lot sooner than usual.

They helped me off the procedure table, and as they wheeled my bed back to my room, the nurse asked, “So, what are you going to do with the rest of your day?

It was the question I had been waiting to answer.

I’m going to In N Out!

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The World’s Slowest Confetti-Maker

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Tearing a folded piece of paper is not something that most people put much thought into. In fact, folks probably do it all the time without thinking of the physical effort that such a motion takes. Especially if it’s thick computer paper— the fancy kind that you can only buy at an office store. The tangible, professional-grade that big banks, mega-corporations and white-collar criminals use right before fucking over a bunch of middle-class homeowners. Or stealing the identities of poor old people that don’t know that Windows isn’t just something that you cover with drapes.

For those of us with SMA, tearing a folded piece of paper may actually be hard… if not impossible. Prior to beginning my Spinraza treatments, it was a task that I had not been able to do in a very long time. Not even the thinner type of paper that you buy at the dollar store. The kind they sell next to the cheap neon highlighters that smell like meth.

But, this ability is tested during the very-important PT assessments that measure my progress with Spinraza. While it seems an odd thing to test, it’s actually a good measure of hand strength and changes in grip. I’ve had two assessments so far, and I could not complete this particular task on either try— which royally pissed me off. As I’ve demonstrated before, I’m not the kind of person that does well with failure. If there’s an exam, I had better get an A. And if I don’t, I will not be happy about it and I will work myself into a damn tizzy to score better the next time. If you know me at all, you’ll understand that this is not an exaggeration. In fact, you’ve probably also worried that at some point I’m going to give myself an ulcer.

Next month, I will undergo another full PT assessment, which means that I will be confronted with that piece of paper. And, I really don’t want to fail that task once again. I don’t want to be a sad loser like the Mets or Hillary Clinton. So, yesterday, I began to practice this task. Fiendishly. Surprisingly, after about seven minutes, I achieved victory. I tore that damned piece of paper in half. And then, about twelve minutes later, I did it again. I was so happy that it didn’t seem to matter that I was sweating through my Secret Powder Fresh deodorant.

Today, in the time it took to watch two episodes of Comedians in Cars Getting Coffee, I tore a piece of paper FIVE FUCKING TIMES. If you don’t believe me, here’s a picture of the paper:

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If you’re wondering how long it actually took me in real-time (not Netflix-time), it was about 30 minutes. So, roughly six minutes per tear in the paper. Although, I did two of the tears in less than 30 seconds— which, interestingly enough, is the same duration of President Trump’s attention-span.

I’ve got several more weeks to prepare for my next assessment, so wish me luck. Maybe, if I keep at it, I will no longer be the world’s slowest confetti-maker.

A girl can dream…

Hitler, Nazis and Strudels — Oh My!

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As I’ve said on this blog, and… really, to anyone in my real life that will listen, I love history. It really doesn’t matter the era or the type, I adore it all. I love learning about it… reading about it… I even love swimming in it until my fingers get all wrinkled.

Although, in the interest of full disclosure, I doubt anyone would watch me swim in anything, even history. Given my pasty skin and weak body, I’d be that one albino seal who can’t swim and gets rejected by their mother to flail on the beach and get eaten by a polar bear.

World War II is a particular favorite of mine, not because I have any affinity for genocide or dictators with mustaches, but because it’s an era in history that was so wide in scope that it affected nearly everyone on the planet— in some way or another. Even Switzerland, which had promised to stay neutral during the conflict, still managed to get ahead by selling Saint Bernards, lots of holey cheese, and hoarding money in their banks that everyone liked to pretend hadn’t been stolen from the Jews.

My own family was affected by WWII, also. My father was born in a remote, mountainous village in the Basque region of southern France during the Nazi Occupation. While my poor grandmother was pushing my dad out of her vagina, there were German soldiers literally downstairs in her kitchen. I suppose it was important for them to determine if the people scurrying in and out of the house were spies… or just old ladies with clean towels and hot water.

As much as I like true stories, sometimes I read alternative WWII history books and novels because it freaks me out. Just imagining a world where the Nazis won the war is enough to give me a giant case of the heebie-jeebies. After all, if Adolf Hitler had achieved his aim, folks like me wouldn’t even exist.

Many people don’t know this part of WWII history, but the earliest victims of Hitler’s genocide were the disabled. By 1933, the Nazis mandated the forced sterilization of all disabled persons— whom they considered “life unworthy of life” and “useless eaters.” This plan made perfect sense to the German people, yet, it didn’t seem to matter that their own leader looked like a penis with a comb-over.

This policy helped to set the stage for the beginning of 1939, when the Nazis began to murder… oh, excuse me, they called it “euthanize”… all the disabled babies, children and adults in their budding empire. Doctors, nurses and other medical staff were required to report all their disabled patients to the government. The younger at diagnosis, the better. It’s more effective to hone your death tactics on victims that can’t fight back or wipe their own ass.

Once Nazi officials received a report of a disabled person, they’d send staff to the home. Using glowing descriptions of their caring facilities, they’d coerce the families into sending their disabled loved ones to their special hospitals for treatment.

I imagine these conversations sounded something like this:

“Hello, Mr. Schneider. We’ve got a brand new medicine that we’d like your son to try. It’s amazing… transformative.”

“Really? What is it?”

“It’s sort of a gas… an… an inhaler, if you will. It’s called Zyklon-B. It’s like… penicillin… only better.”

“Oh, wow. How much will it cost? I— I don’t have much money.”

“Don’t worry, Mr. Schneider. It’s totally free.”

“Thank you so much.”

“Oh, don’t thank me… You can thank the Führer for this generosity. By the way, does your son like strudel?”

Then, after some time had gone by, they’d send the family a letter notifying them of the death of their child or relative. Sometimes it would include a box of cremated remains since the Nazis loved dispersing ashes even more than the Catholic Church on Ash Wednesday.

These letters to the families always included a fictitious, yet, somewhat believable, cause-of-death. Like pneumonia… or fever… or choked on a cherry strudel.

To be honest, choking on a cherry strudel sounds like something that I would totally do. Yes, I love baked goods that much. So, unfortunately, my family would have probably believed it if a Nazi doctor had told them that’s how I met my maker.

Their scheme worked remarkably well for years. While some families grew suspicious, on the whole, most people believed what they were told. And the Nazis were outstanding propagandists. They had laid the groundwork for years ahead of time— making it known that these undesirables were better off dead, anyway. This made it less likely that anyone would go seeking answers.

As you can imagine, I am thankful, everyday, that Hitler’s grand-plan eventually fell apart. Not only for myself, but also for my grandmother that had to contend with German soldiers worried about the contents of her uterus.

But, while the man, himself, may be dead, Hitler’s philosophies do still live on. May they never rise up again, though. Because, if they do, I might need some cherry strudel.

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