Assessments, Zombies & The Cost of a Life

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Every few months, as part of my Spinraza journey, I go to Stanford Neuroscience for a full day of physical and respiratory assessment tests to measure my progress— and my overall health. These tests are important for research purposes and to learn more about Spinal Muscular Atrophy and how it may respond to these revolutionary new treatments, like Spinraza. I’m fortunate to have an outstanding medical team at Stanford and they are really “writing the book” on SMA treatment protocols for adults. In the past, there wasn’t much that could be done to help the underlining medical cause of SMA, but science is currently progressing more than I’d ever thought I’d witness in my lifetime. So, it’s an exciting time to have an obscure condition that’s caused by a few fucked-up genes.

People finally seem to have the know-how to address the complicated science behind it. And it’s not theoretical. It’s not science fiction. It’s real— unlike many of the things that we spend so much time worrying about these days. Fake things. Like a zombie apocalypse… Alien abductions… Donald Trump’s tan.

Despite all of these advancements in science, and my excitement to be a part of it all, this doesn’t mean that I don’t get tired of being a cog in the large medical machine. That I don’t secretly (or not so secretly) dread these periodic assessments I must endure. Because I do. I dread it a great deal. Just like I dread how my ass will feel when I’ve eaten too many tacos.

As I’ve shared on this blog, I always get stressed and anxious before these tests. Even though I know much of this pressure is self-inflicted, there’s still the very-real fact that my results, compiled with the results of others, will impact the ability of other SMA adults in this country, and around the world, to have continued access to Spinraza, and future treatments that are coming down the pipeline.

I worry about that. A lot. Because I know that as a result of the high cost of these “orphan drugs,” payers and insurance companies are looking for any reason to limit who gets access to the treatments. Even though the pool of those of us with SMA is already so small, they’d still like to make that tiny pool even smaller. When scientific advancement meets economics, economics wins every time.

Insurance and pharmaceutical companies are already in negotiations about the next batch of SMA treatments and their potential costs. They are calculating the cost of an SMA life. The value of an SMA life. They are using terms in their reports like “quality-adjusted-life-year.” And “value-to-healthcare-systems.” And “how-to-keep-saying-these-mercenary-things-without-sounding-like-assholes.

Access to these treatments is being evaluated on cost, not on who may benefit. Not on the value of the life itself. The looming pressure of this is very real. And, it cuts to the very heart of one central question: What is a disabled life worth—like mine?

Because, in most common societal measures, a disabled life is not worth as much as an able-bodied one. Society reinforces this view every day. And it has for many, many years. It’s been done in subtle ways. Like government policies, lack of community inclusion and accessibility, and in forms of everyday discrimination (which is called ableism). Unfortunately, some of these reminders are actually not-so-subtle.

In fact, sometimes, they slap you in the face.

It wasn’t long after I began writing about my Spinraza journey on this blog, that I received a comment from an anonymous reader. This gentleman lashed out at me for having the audacity and selfishness to think that my life was worth the cost of my treatment. That, because I’m disabled, my life isn’t worth it. That my contributions aren’t worth the added cost.

His ramblings took a nonsensical turn as the message progressed, so I was able to dismiss it and not internalize it as others may have done. But, his overt message spoke to the “unspoken” belief that many have about disability. He said the thing that many may believe, but don’t have the guts to say. After all, this idea is deeply woven in society. It’s why ableism is one of the most common, yet least talked about, forms of discrimination.

All of these thoughts weigh on me with each assessment that I endure. Each weight that I lift. Each paper that I tear. And each measurement that is taken.

In those moments, it suddenly becomes the time for me to “prove my worth.”

My Stanford team has kindly attempted to dissuade me from these anxieties before my assessments. They’ve urged me to not put this pressure on myself. Part of me completely agrees with them. It’s ridiculous to carry such a burden. Just like it’s ridiculous to believe it’s possible to die in a zombie apocalypse.

Yet, despite these assurances, given the society we live in, with its “quality-adjusted life years” being used to measure the cost of my life, and all the outside forces attempting to devalue lives like mine, how could I feel any differently?

It’s really hard not to do so. But, damn it, anyway, I have to try to shed that burden. To push it off my back. Dismiss it. You know, the way a dictator ignores human rights laws? (I’ll let you decide which dictator I’m talking about. There are so many to chose from.)

So, it was with all this in mind, that I rolled into the Neuroscience building yesterday. It was dark and dreary outside, and as the rain threatened to fall, I felt some of the wind come out of my sails. I would just do the best I could. And that’s it. I just needed to keep reminding myself of that.

Four hours later, I was feeling exhausted and ready to head home. I was spent. I had been measured, and then measured again. I was able to lift a small weight and move it in a way I hadn’t been able to do before. I couldn’t tear the paper, though, because unfortunately it was done near the end of the assessment when I had begun to tire. Normally, this would have really annoyed me, but I managed to contain myself. I listened to that new voice in the back of my head that said, “Drop the burden, girl. Just do your best.”

And so I did.

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Further Adventures in Physical Therapy

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A few months ago, I reentered the world of physical therapy after a 20+ year hiatus. Sure, I’ve had the occasional physical therapy assessment during the course of my Spinraza treatments for my Spinal Muscular Atrophy the last couple years. But, nothing on a regular basis since childhood. Over twenty years ago. I know this hiatus was long. Like really long. The kind of hiatus you usually only find in the careers of really famous people. Like Barbra Streisand. Or Betty White. Or, Roseanne Barr before she dumped her career in the toilet again.

I admit, of course, that I brought a lot of emotional baggage with me to my return to physical therapy. I had a lot of painful ghosts in my closet that I didn’t enjoy examining again. (Just as I don’t like remembering all the baggy printed sweatshirts I wore in 1993.) But, I suppose that despite all of that, the important thing is that I returned to physical therapy in the first place. Even if it took a long time. (There’s no forgiving those ugly sweatshirts, though.)

Since the autumn, I’ve been going to sessions with a local PT once a week. Given my eccentric crippliness, I’ve been an academic challenge for my physical therapist, Robbie. Spinal Muscular Atrophy is not a run-of-the-mill knee replacement. Or a case of whiplash. Or a strained shoulder. It’s an all-over-the-body kind of weirdness. It’s like trying to teach music to a kid that can only reach 12 of the 88 keys on the piano. Coming up with a song to play under that kind of limitation takes some skill and imagination. It goes without saying that Mozart definitely won’t be in my repertoire. But, I’d settle for a little… Do Re Mi, maybe?

Luckily, my PT has risen to the occasion. He did some research. He thought outside the box. And, he developed a therapy program that is as eccentric and odd as I am. It features a random assortment of objects and tasks— seemingly like some shit he just grabbed from his junk drawer at home on his way to work. After all, everyone has a drawer like this at home. The kind with paper clips, dried pens, rusty green pennies, and silly putty from 1987.

From the look of my therapy table that first day, though, Robbie’s junk drawer had a different collection of crap. Wooden clothespins. A small cloth Easter basket with a yellow chick on it. A rubber tube that resembles a giant Twizzler. And a travel coffee mug. Junk, nonetheless, but higher-quality junk than I tend to find in my drawer.

Anyway, each session he lines up the clothespins on the edge of the Easter basket and has me pull them off one-by-one. This may sound easy, but I’d like to say for the record that it is not. A surprising number of muscles have to work together to pinch a clothespin, remove it from a rim, and then place it inside a basket. So many tiny muscles that don’t always want to work in unison. It’s hard. I have dreams about these clothespins and that damn Easter basket. The perky baby chick taunts me when I fail. It’s very annoying.

Luckily, the other tasks aren’t so aggravating. We do range-of-motion stretches and exercises to strengthen my torso and neck. Then, we do bicep curls with the giant rubber Twizzler. At the end of the session, I practice lifting the travel coffee mug to my mouth to simulate taking a sip. Robbie puts water in the mug beforehand— but he doesn’t tell me how much so I get challenged by the weight.

Some folks may lift hefty barbells… but, it seems like I can lift an $11 dishwasher-safe container.

The other day, though, my PT had an addition to our session. To work on my neck and torso muscles further, he rigged a red laser pen light on the bill of a baseball cap. He put the cap on my head and then put a bullseye target on the wall. Keeping my posture as straight as possible, I aim the laser onto the target, and work to keep it there as long as I can. It’s way more challenging than you’d think. Imagine a low-tech version of Nintendo’s Duck Hunt. Yet, it’s just as satisfying. Plus, there’s no pixelated dog on the screen to smirk when you lose.

I look forward to seeing what else is in store in the coming weeks. This overall experience has been more fun than I expected at the outset… and not just the moments when I threaten to blind Robbie with the laser. It’s also been challenging, but in a good way… a competitive way. Like when I read War & Peace by Leo Tolstoy a few years ago. It was long and massive, but when I finished it, I was proud of myself. I gave a cry of triumph, “I MAY NOT BE STRONG ENOUGH TO LIFT THIS DAMN BOOK… BUT, I READ IT, ANYWAY. HA!”

If all this wasn’t enough to recommend this experience, though, I’d also like to report that my physical therapist has noticed some subtle improvements as I’ve progressed through the last few months— which is really encouraging. My arms stretch higher. My neck muscles hold longer. And I can lift a whole lot of water in that mug. So, stay tuned for more updates in the coming weeks…

Until then, watch out for my red laser!

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Farewell Pizza Plus

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(Originally printed in today’s Patterson Irrigator newspaper.)

Do you hear the sound of muffled sobs? Yeah, that’s me. It’s the kind of emotion I only feel in very specific circumstances. Like when my childhood hero turned out to be a pervert. (Yes, I’m talking about Bill Cosby.)

It was also when I heard a rumor in middle school that Bonne Bell was going to stop making Dr. Pepper Lip Smackers. This led me to rush to the old Patterson Drug to buy all the tubes left on the shelf. Okay, I admit that this example might be too specific. But, if you’ll notice, there’s a theme to my experiences and the emotional memories of many of us. They are tightly woven to our childhoods.

The recent closing of Pizza Plus, a long-time local business, has been the subject of press in this newspaper. Our estimable publisher emeritus, Ron Swift, added his thoughts in a recent column and he encouraged me to offer my opinions on this subject.

It’s well-known that I’ve often lamented the proliferation of pizza establishments in Patterson in recent years. After all, they’ve popped up with such frequency that my jokes about them just seemed to write themselves. (Unfortunately, the same thing happens to me with Mr. Trump. My sarcasm seems to leak out before I even notice. Like a burp.)

But, that said, my concerns about our town’s collective pizza consumption faded away when I heard the news about Pizza Plus. I felt an instant sadness, which was surprising considering how my stomach feels when I eat too many refined carbohydrates.

Nonetheless, a slideshow of memories flashed in my mind. When Pizza Plus was located in the old theater building (yes, we once had a movie theater in Patterson!), my friends and I would meet there during school vacations. There was a party room in the back that had a large TV and a VCR— you know, the thing that people used before the internet? Anyway, we’d rent a movie from the video store across the street to watch while eating a combination pizza with extra ranch dressing. We’d split the bill using the crumpled bills and ragged change in our pockets. The only hiccup was the glass window that opened the room to the rest of the restaurant— allowing anyone to see exactly what you were watching on the big TV.

It’s important to note that a big screen TV in 1998 meant only a 32-inch square of viewing space. Nonetheless, this was still large enough that if we had a video that was rated more than PG-13, my friends stood up in front of the glass window partition to block people in the restaurant from seeing us watch Brad Pitt take off his clothes.

These memories were joyful, simple and sweet— so, to me, the closing of Pizza Plus feels like saying goodbye to an old friend. It’s important to note that Pizza Plus did a lot for our local community through the years, too— by supporting school activities and club fundraisers, and being the first employer of dozens of eager teenagers. Small businesses like these support a community in a way that corporations and franchises simply cannot.

The loss of Pizza Plus leaves a void. So, I’d like to call upon the other 612 pizza establishments in town to step up their game. What can you do to make Patterson a stronger community? What role can you play to help our schools? After all, we need more from you than just cheesy breadsticks.

So long, Pizza Plus. Thanks for the memories.

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.