2018: The Year in Review

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The year 2018 was a year of contrasts— both here at home, and the world over. Amazing heights of joy and emotion were seen— followed by lows of discord and weirdness. You don’t have to look far to see these contrasts in action. For example, after much international pressure, in June, Saudi Arabia finally granted women the right to drive a car. Unfortunately, any ‘brownie points’ this move earned the Saudi government were quickly squashed four months later when they murdered a Washington Post journalist. While the Saudis have denied this, everyone knows that they are lying. Just like everyone knows that the one person that denies farting at the dinner table is always the one that did it.

Here in Patterson, we are not immune to the odd dichotomy seen in 2018, either. Both our amazing PHS varsity and junior varsity softball teams won conference titles with undefeated regular seasons. This is badass. Unfortunately, it was also announced this year that we are getting yet another pizza establishment in Patterson— to go along with the 95 places that we already have. So, while the girls’ championships bring much joy to our hearts, the advent of more refined carbohydrates isn’t good news for our colons.

In the international sphere, though, 2018 was a very successful year for dictatorships. Kim Jong-un burst onto the stage with meetings with Donald Trump and also by crossing the border into South Korea— where he quickly discovered that Dennis Rodman is far less famous than he thought.

China’s leader, Xi Jinping, strengthened his control over the nation by getting term limits abolished so that he can serve as “President for Life”— a position that comes with a really good dental plan. Forbes Magazine ranked Xi Jinping as 2018’s most powerful person in the world, a position previous held by Vladimir Putin.

Speaking of Putin, in March, he was reelected to a fourth term as Tsar— err, I mean President of Russia. In this hotly contested race, his only competitor was a Muppet.

In the world of sports, 2018 saw the Winter Olympics held in the mountains of PyeongChang, South Korea. It featured many dangerous and icy sports that no one understands. Norway won all the metals because most of their athletes descend from the Abominable Snowman. Meanwhile, back in the United States, disgruntled NFL football fans decided that ‘having principles’ meant they would set their own shoes on fire.

In further national news, the Dow Jones Industrial Average, often used as a measure of the strength of the US economy, bounced around this year, from awesome highs, to terrible lows as 2018 drew to a close. This pattern oddly matched the demand for romaine lettuce and the popularity of Rosanne Barr. I don’t think these things are related, though.

Finally, in digital news, the most popular video game of the year was Fortnite. I suppose it’s better than the Pokémon Go craze of a few years ago. At least no one’s falling off cliffs or getting hit by cars while playing the game. But, Fortnite still has its shortcomings. Thousands of addicted kids are secretly gaming in the classroom on smartphones that they aren’t even supposed to have in school. And if that wasn’t enough, it’s also teaching an entire generation how to incorrectly spell the word ‘fortnight.’ This might be the most upsetting problem of all.

So, I’d like to take this opportunity to remind everyone that the word ‘fortnight’ is actually what you call a two-week period of time. Let’s say your child gets in trouble at school for punching a teacher in the face that’s trying to take away their smartphone. An apt punishment for this behavior would be deactivating their Fortnite account for at least a fortnight.

Lastly, I dearly hope that 2019 brings a little more stability for all of us— and a little less uncertainty. And if we’ve got to eat so much pizza in Patterson, for the sake of our colons, I sure hope we can have some romaine lettuce to go along with it.

After all, 2019 is less than a fortnight away…

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Quarantines, Clipboards & Spinraza #8

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I’ve made it no secret that I am abhorrently afraid of cold & flu season. When you have SMA and your respiratory system is total shit, even a simple cold can turn nasty. You know the way a mother’s ear may alert to the sound of a crying child? My ears instead perk to the sound of a cough, a sneeze, and the tiniest sniffle. I can even detect the slightest change in the tenor of a person’s voice that may indicate secret congestion. I don’t mean to brag (okay, maybe I do), but I am the Sherlock Holmes of Cootie-Detectors. I’m so damn good at it that I may know you are getting sick before you do.

When I was scheduled for my 8th dose of Spinraza, I knew that I was entering a dangerous portion of the cootie-season. The post-Thanksgiving/pre-Christmas cornucopia of Microbial Abundance. So, I knew that this year I was going to have to employ every germ-avoiding tactic in my arsenal so that I could receive my Spinraza treatment on-schedule and unimpeded.

Thus, about 10 days before my injection, I announced to EVERYONE THAT I KNEW that I was going into quarantine. Literally everyone. Even the mailman knew that he had better not sneeze on my Christmas cards.

I became a certifiable hermit. I turned down invitations to holiday gatherings. I avoided crowds and eating food that wasn’t prepared at home. I threw away all my romaine lettuce.

The more isolated I became, the more I felt myself turning into one of those wingnuts that sits in their house and angrily begins to believe conspiracy theories that they read on the internet. That the Moon Landing was a hoax… that Barack Obama was born in Kenya… that Donald Trump’s hair is actually grown on his head.

The bitterness became real. And the further I got into my self-imposed exile, the more my anxiety grew about someone breaching my quarantine and infecting me. I knew that if that happened, I was truly inches away from turning into the actual Unabomber. Like I would send a bomb to that person’s house and curse their familial line for 46 generations.

As my procedure day approached, I became more and more tense. Xanax wasn’t quite covering the heights of my nervousness. My left hand began to twitch. Hallmark Christmas movies even stopped having their sedative effect on me.

I simply COULD. NOT. GET. SICK.

It was a horrendous amount of pressure. It consumed me. So, when the magical day arrived, and I woke up at 3:00am feeling okay, I nearly cried with relief.

And then I remembered that my reward was having a five-inch needle poked into my spine.

Strangely, this thought didn’t scare me as much as getting sick did. I think that speaks volumes to the depths of my emotional neuroses… and how bad Hallmark Christmas movies really are.

By the time I arrived to the Neuroscience Center, I was actually calmer than I had been in days. After being settled in my room before the procedure, the resident doctor performing the ‘needle poke’ came to introduce himself. As it’s a teaching hospital, there are different teams of doctors— one resident & one attending. You never know who you will have until the day of the procedure. It’s like playing roulette… but with your spinal canal.

Right away, I had a good feeling about the new doctor. He seemed competent and excited— which jived with my mood of the day. I also sensed his competitive nature when he asked:

So… uhh…how long did it take them to do this procedure last time?

While this may seem an innocent question, as a competitive person, myself, I instantly recognized the subtext to his question. What he really meant was the following:

“I want to do this better and faster than last time. I will win this game.”

And, I must say, the guy did deliver. He had the needle in my back so quickly, that I didn’t have time to begin daydreaming about lunch (my favorite way to pass the time). The whole procedure was done in thirty minutes.

As he removed the giant needle, the panicked mania of the past days all seemed worth it to have Spinraza floating in my cerebral spinal fluid like magic minions. But, as exciting as it was, I was ready to go home. To get the hell out of there. I was spent. It had been a tough week trying to not turn into a domestic terrorist.

Just as I was about to get ready to leave, though, a research fellow came into the room with a clipboard. He cheerfully asked, “I’ve got a few questions for you.

A little voice in my head whimpered, “Oh, fuck.”

A clipboard is never a good sign. If there are enough papers to warrant a clipboard to hold them, that’s too many papers.

I gazed longingly at my wheelchair and wished I was sitting in it instead of the hospital bed. It would be so much easier to zoom away from this man and his clipboard. But, then my conscience reared up and decided that I needed to be the scientifically-responsible person and submit to the questions.

This was a big mistake.

The questions went on. And on. And on.

He asked me questions that I had already answered on previous appointments. Questions that should have already been in their records.

I began to resent his perky face and his clipboard. And his inability to read my medical records. My mind began to race— does anyone take the time to read anything anymore?? Do they??

The minutes ticked by. Finally, he said, “Well, I think that’s it.

I sighed with relief and gazed at the clock. His survey had literally taken longer than my entire procedure.

Paper rustled on the clipboard, “Oh, wait, I’m missing a page!”

If I could have physically banged my head on the wall in that moment, I would have done so.

Just a second…

He located the paper and rattled off a few more questions. I would totally tell you what the questions were but, honestly, I wasn’t even listening by this point. He was like the teacher in Charlie Brown— all sounds, but no actual words.

When he finally went away, my nurse came back in, “My goodness, I thought that was never going to end.

I burst out, “I know, right??? Holy crap.

She clapped her hands together, “Let’s get you out of here, shall we?

Yes, please. I’ve got some Hallmark Christmas movies to watch.

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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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