Red Tape, Duct Tape & The Wheelchair Vortex

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When you’ve got a rare and complex disability like Spinal Muscular Atrophy, time can be a very precious commodity— like diamonds, Labradoodle puppies, or a really good Wi-Fi signal. Since many everyday tasks can take us longer to complete (like showering, eating, and getting dressed), we tend to budget the rest of our time wisely and carefully. It’s an important skill to cultivate when you have a disability— otherwise you’d never get that term paper done, never balance your checkbook, and never have time to buy laundry detergent at the store.

Along with these everyday tasks, life with a complex disability comes with a lot of hidden bureaucratic demands that take up time. Between filling out on-going forms for Social Security and state services, to coordinating between various caregivers, doctors and therapists, to following up on medications and equipment, it’s a vortex of bureaucracy that keeps our lives in motion.

The time it can take to attend to this red tape is daunting. You know the hours it can take to prep and cook an entire Thanksgiving dinner? That’s a LOT of time, right? Imagine having to do that several times a month— even when you’re tired, sick, or just want to lay in bed and watch people get decapitated on Game of Thrones. That’s what it is often like for us. Plus, we don’t even get any leftover turkey out of the deal (which is totally lame because I love leftovers!).

Recently, I’ve had an extra bundle of fun (can you sense my sarcasm?) added to my usual list of bureaucracy. This task is at the top of my list of The Most Dreaded Of All Tasks. In fact, I daresay it is the veritable Mount Everest of tasks a cripple like me must climb. And I don’t say this lightly because I literally can’t climb anything at all.

It’s the Trying-To-Get-A-New-Power-Wheelchair-Vortex-Of-Hell.

Sure, it might sound exciting to get a new custom power wheelchair— to get a bright shiny new model with fancy features and leather upholstery that smells like a pretentious Italian shoe. But, a new wheelchair ain’t a Prius (even though it can cost nearly as much). They are also not so interchangeable as to be simply a matter of budget, taste and style.

As I’ve written on this blog before, these wheelchairs are built to our specific measurements and our medical need. They are designed to maximize independence and health. They are the very tool of life. And, when you have a complex disability like SMA, a small change in a wheelchair design or an error in a measurement for the seating can mean the difference between sitting comfortably to having a pressure sore on your buttocks. It can mean the difference between being able to drink a glass of water independently to not being able to reach the table at all. So, a lot can ride on these devices and making sure they are fit appropriately.

That’s a lot of stress— and a lot to add to our already-busy plate. So, it’s not surprising that we’re often not eager to get a new wheelchair when we’ve still got one that works well. But, as time goes on, it can become difficult to get parts and do repairs. Plus, I can’t speak for every disabled person, but I’d rather not go too long with a decrepit wheelchair that’s only held together by loose wiring, duct tape, and human stubbornness. (I think we’ve got enough of that in the White House).

So, every 7 or 8 years, I begin this process anew. Given the price tags on these custom wheelchairs, insurance companies don’t make it easy to qualify for coverage. There are many hoops that a person must jump through to get a power wheelchair. This is ironic because most of us that need these devices literally can’t jump at all.

First, my doctor must reestablish my need for a power wheelchair and reverify my disability. This is despite the fact that I’ve been this way for 37 years. It’s as if they fear that my genetic condition is going to suddenly disappear into thin air— like Lori Loughlin’s career.

Second, I must be seen by a special neuro physical therapist that will do a head-to-toe functional assessment— which must corroborate my doctor’s findings and include an analysis of whether my mental state is good enough to operate a wheelchair without driving myself off a cliff.

(Even though this process makes that very, very tempting.)

After that, my doctor has to verify the special neuro-physical therapist’s evaluation and that it’s in full agreement with his recommendations. He then sends it all to the DME company, which is in charge of fitting me for the new wheelchair and making sure it’s functional.

I’m fortunate that I have a long and positive relationship with my local DME (durable medical equipment) provider, Alan. He has been very accommodating and helpful to me over the years. He’s put up with my tears of frustration, my harassing phone calls, and my complaints about how ugly all their wheelchair paint color options actually are.

Insurance companies don’t make this process easy for DME providers, either. To be frank, they make it a giant pain in the ass, which has driven many DME companies out of business, which in turn makes it hard for disabled folks like me to get our rickety wheelchairs repaired or replaced.

It’s the red tape nightmare that just keeps on giving— like a bad case of shingles.

Anyway, Alan came over a few days ago and we came up with an initial plan for my new wheelchair. This plan basically consisted of me pleading desperately:

“Alan, make the new chair exactly the same as this chair. Seriously. Like not even a centimeter difference. Okay? You know the old fable, ‘The Princess & The Pea?’ I am the Princess. Trust me, I will know if there’s a pea under the mattress…..Umm, why are you laughing? I’m not kidding. I am the Princess. There will be no PEA in this WHEELCHAIR!

Realizing I sounded slightly deranged, I coughed, and added:

“By the way, would you like a cup of coffee? Perhaps you might need it now.”

And that’s basically how that initial consult went.

It’s now up to Alan and his team to gather all his notes, the paperwork from my doctor, the assessment from physical therapist, and to combine it all together to submit for insurance approval. Every “T” must be crossed, and every “i” must be dotted. If it isn’t, I will have to begin the process again— the idea of which makes me want to cry.

Here’s hoping the duct tape will hold out until then, though.

Wish me luck — And stay tuned for updates!

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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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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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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, Robbie, 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.)

Robbie 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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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…

August Awareness and Lots of Stretchy Pants

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August is known for many things. Even though most summer vacations are ending, it’s still a month when the heat is blistering and the yucky air has that palpable, tangible quality… like an dog’s fart. Also, schools open this month and all the pumpkin spice food products will begin to appear in stores.

If you think it’s too early for it, you aren’t alone. Even though I have a well-developed love for pumpkin spiced lattes, I don’t want to drink one while it’s still 100 degrees outside. I don’t care if there’s a chance that my sweat could smell like an autumnal wonderland. It’s still not worth it.

August is also Spinal Muscular Atrophy Awareness Month. The month that celebrates and brings awareness to the 1 in 10,000 babies born (including me!) with a really peculiar— and often deadly— genetic glitch called Spinal Muscular Atrophy (SMA). While the condition is rare, 1 in 50 people running around this earth are actually genetic carriers. But, since it’s a recessive condition, it takes two of these carriers getting together to produce a child with SMA. Even then, only 25% of children of those unions will even have the condition.

If you are confused by this scientific explanation of recessive genetics, you weren’t fortunate enough to have had the late Mr. Eugene Field as a biology teacher at Patterson High School. I feel sorry for you if you missed out on his amazing greatness. I guess you’ll have to make due with looking it up on Wikipedia, instead.

Anyway, until very recently, a diagnosis of SMA was practically a death sentence. While advancements in medical care have allowed many of us to beat the odds and thrive long into adulthood, there was really nothing science could do to treat the condition itself. But, that is changing. For the past year, I’ve been receiving a gene-splicing treatment called Spinraza that boosts my production of a protein that my body is lacking. I’ve written extensively about my treatment journey on this blog. I’m happy to report that more treatments for SMA are on the horizon in the coming years, too.

Awareness months, like this one for SMA, serve an important purpose. They garner attention to the cause and provide a catalyst for fundraising. Many other medical conditions and diseases have their own awareness months, too. I’m sure many of you have taken part in such events. And that’s fantastic. After all, these are vital tools for generating donations for research. But, while raising money for a “cure” is very important, we mustn’t forget that we have to also support those living with these conditions, too.

We have to make sure that there are services and infrastructures available to help those currently living and fighting these conditions— and their families. As someone on the other side of this, I must say that I occasionally cringe a little when I see so many fundraising efforts with simple, pithy titles about running and walking for cures. Sometimes I feel like they miss the point. After all, before we can get to the moment when someone could possibly be “cured,” there will be a lot more time spent with the person needing support and helpful resources.

Let’s be honest, from a practical point-of-view, a “Walk for a Cure” isn’t really going to do a patient much good if they don’t have a way to get to their doctor appointments. Let alone if they don’t have personal care assistance in their homes or even nutritious food on their table.

And, I don’t mean to be a killjoy, but you know that 5k Run for Cure you did last year? The one where you wore those new $85 running pants from Lululemon? Yeah, that run is probably not going to help that rural woman in Kansas afford the pharmacy copay on the anti-nausea pills that she needs during chemo.

I don’t mean to imply that these fundraising efforts are useless. Nothing could be further from the truth. These events and funds are incredibly important. So, keep on running in your crazy expensive stretchy pants. But, while you’re doing it, remember that there’s more that we can do.

Awareness means more than a “cure.” It’s about living in community— together. Helping each other. Whether it’s August, or any other month of the year.

Until then, Happy August… and happy running.

xoxo