I’m nearly two years into my Spinraza journey, so you’d think I’d be relaxed about the entire process. That I would have a ‘been-there-done-that’ attitude about the spinal injections, and the subsequent physical and respiratory evaluations that follow. That I’d be that chill kid that doesn’t get emotionally twisted into knots at the sight of the familiar 500g weight… or the large plastic mouthpiece that gets shoved under their lips to test their pulmonary capacities. That my vast experience would allow me to stay cool under these pressures. You know, like Robert Mueller when faced with a nation that can’t seem to read a 448 page document that they forced him to write in the first place?
But, no, I’m decidedly not that unshakable.
I had my 9th Spinraza injection several weeks ago, after recovering from a nasty bout of influenza. This illness took its toll, and I was worried about the effect it could have on the physical and respiratory assessment results to follow. So, in the days leading up to my assessment, I began to physically and emotionally prepare for the grueling day of tests. I doubled-up on my physical therapy. I increased my protein intake. And, most importantly, I talked to my counselor about breathing exercises to try to keep me from slipping into ‘lizard brain’ during the stressful moments of the day.
If you aren’t familiar with ‘lizard brain,’ please know that I’m not making this concept up. It’s not about a colony of salamanders on Animal Planet. Rather, the term refers to a frenzied state of mind that can occur when extreme stress causes all reasonable thought to vanish— and you are left with the instinctual urge to fight, or run away. This part of our brains is very elemental. Prehistoric. And it traces back into the beginnings of life. The ‘lizard brain’ hibernates inside all of us— but, if you are Donald Trump, it’s activated 87% of the time.
I am a naturally competitive person. As I’ve discussed on this blog, I often push myself to my limit. I want the A on the test. I want the gold star. I want to be able to say that I tried my damned best. When my ‘lizard brain’ is activated, my instinct is to fight. Generally speaking, this drive is a good thing. On these physical and respiratory assessments, it means that I give a lot of effort. If my brain calculates that there’s a 51% chance that I can lift that 500g weight, I have a hard time letting that task go. I want those points. I want to see them write it down on their damn little clipboard. My lizard brain can go from ‘off’ to ‘on’ in that exact moment. And it won’t back down until I’m red-faced, shaking— forcing the physical therapist to pry the 500g weight from my sweaty fingertips.
This isn’t necessarily a good thing. A reasonable, normal brain would realize that I shouldn’t waste energy that I will need for the rest of the assessment. But, ‘lizard brain’ makes unwise decisions. It does stuff that’s just not rational. This is why someone needs to remove the Twitter app from the president’s phone.
At Stanford this week, I really tried to keep that part of my brain contained. I came into evaluation day prepared. I was going to be focused. Methodical. I was energized— and ready. The lizard was going to be On. A. Leash.
I ate a good breakfast. My friend, Edith, brought me a Toffee Nut Latte from Starbucks to sip on the drive over to Stanford. It was a size grande. This is an important detail because I generally only order a size tall at Starbucks because my naturally high-strung personality can only handle so many shots of espresso. (This fact will become important as this story moves forward).
About halfway to Stanford Neuroscience, I got the sudden urge to listen to rap music. I never, ever listen to rap music because my taste in music tends to be more similar to a 92-year-old Jewish man than the Millennial hipster that I actually am. But, it felt like I needed to hear that music in that moment. As I started belting out the lyrics to Petey Pablo’s Freek-A-Leek, Edith grew concerned:
“How much of that latte have you drank?”
“Uhm, only like a third of it so far. But, I feel really good about how this day is going to go.”
The music continued. As we approached the bridge into Palo Alto, I started counting overpriced Tesla cars that I’d see on the freeway. They were easy to spot with the pretentious ‘T’ on their trunk. I briefly pondered if the company’s founder Elon Musk liked rap music. Then, I remembered that I needed to worry about my lizard brain, so I did a few breathing exercises and counted fourteen more Teslas. Then, I felt a hot flush run through me:
“Ooo, can you open the window? I want to feel the bay’s cool air on my face on the bridge.”
“Did you finish your drink?”
“Nope. Only half so far. But, it’s really yummy. The Toffee Nut Latte is almost as good as the Chestnut Praline Latte. You know, it’s probably not as good because instead of two nuts in it, it only has one nut. Like Lance Armstrong.”
We parked in the garage, and as the cool air hit my skin, I realized that, for some reason, I was already sweating.
“Fuck, I’m sweating.”
“I should have got you a decaf.”
“Look, my undershirt is stuck to me.”
After checking in to the reception area and drinking some water to hydrate, I waved at my doctor’s nurse practitioner across the foyer. When she came over and hugged me hello, I hoped she couldn’t smell my sweaty and toffee-nutted body.
I was taken back into the exam room and my vitals were taken. When my blood pressure was within the normal range, I was shocked. Seriously surprised. So, my lizard brain decided that it was a good idea for me to drink the rest of my latte.
The respiratory therapist came in a did a full pulmonary function test. Right away, I could tell that all my hard work during my influenza recovery, and afterward, was paying off. The Spinraza was doing its job. The numbers with each respiratory test were coming in higher than before. I was on a respiratory and caffeine high. My lizard brain was secretly tweeting:
“This is the most huge thing ever. I’m the best pulmonary test-taker in history.”
After I caught my breath from those tests, I finished my latte. As my straw was slurping the last toffee bits on the bottom of the cup, the physical therapist came in for the physical assessment tests. With the caffeine pumping in my blood, I felt especially focused. All the world fell away until it was just me and that test. I watched her hand making notations on her clipboard. I started to mentally tabulate points like a card-counter at a blackjack table in Vegas. I was going to bust the dealer. She was the dealer. I would not be stupid enough to take the bust card.
“If I lift this cup this way, will I get more points?”
Five minutes later.
“I know I only get three tries to do the task successfully and get my points. But, if I don’t set the item down, it still counts as one try, right?”
I don’t know if the caffeine was doing it, or all the preparation I had done, but I felt a zing of excitement as, one by one, the tasks came easier than I had expected. My mental tally was telling me that my score was higher than last assessment. And the therapist agreed:
“You’re doing really well. I think you’re ready to try an additional task we haven’t done before: putting you on the end of a table to see if you can sit upright all on your own. Without any support.”
“Will I get more points for that?”
“Then let’s do it!”
I’d like to report that I did get those points. I did sit on the edge of that table all on my own. First, I did it bracing on my own hands. Then, I did it without the support of my hands for even more extra bonus points. It was an amazing moment. Edith even cried a little because it’s a task we’d never thought I’d be able to do.
I’d like to say that this achievement was emotional for me in that moment, too. That this milestone was the culmination of two years of treatment that paid off in a tearful crescendo.
But, it didn’t happen in that way. And you know why it didn’t? Because my lizard brain was too busy shouting:
“GIVE ME ALL THE POINTS!”
It was still all worth it, though.
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!
Getting sick when you have SMA is not a fun experience, as I’ve discussed previously on numerous occasions. The tiniest cold can turn our lungs into a swamp of mucus, and recovering from, even such a minor illness, can take longer than a steamship voyage across the Atlantic. And that’s assuming there are no icebergs lurking in the water that could sink the ship— or, worse, yet, send us to the hospital for IV antibiotics. It’s a dangerous ocean out there, even without German U-Boat torpedoes.
So, it’s easy to imagine that if the illness is more than a cold— things can become serious very quickly. Recently, I was threatened with such an iceberg. A Titanic-sinking hunk of Influenza— the most dreaded of respiratory viruses. The little bastard that attacks during the night, overwhelms your defenses, and turns Leonardo DiCaprio into a blue icicle.
As soon as it hit, I knew exactly what it was— and the danger it posed to me. I had prepared for this moment, and didn’t take it lightly. Keeping my lungs clear was my top priority. I would sacrifice sleep and rest (the two things most needed when you are ill), just to keep those airways pliable and open. I would do anything to get the mucus out. Literally anything.
So, I leapt into action. I pulled out all my respiratory devices. CoughAssist. BiPAP. Nebulizer. And I started my emergency influenza protocols. Tamiflu. Zithromax. Prednisone. Albuterol. I had trained well for this moment. I was like those Paris firefighters that protected the Notre-Dame Cathedral. I was not going to let the whole structure fall apart. Sure, I knew my roof was made of really old wood covered in medieval pigeon shit. That just meant I was going to have to work extra hard to save the good bits of the building. But, it was definitely worth saving. If cranky French revolutionaries couldn’t defeat me in 1789, I wasn’t going to let a fire do it. Mon Dieu!
The following days passed in an exhausting whirlwind of respiratory care. Given the complexity of SMA, we can most often receive better care at home than in the hospital. You might find this surprising, but most local medical professionals have little to zero experience with a patient with a rare neuromuscular disability, like SMA. So, hospitals can be very dangerous for us. We have learned this the hard way. So, we have to become our own advocates and our own resources. And our doctors become our partners and colleagues… we teach them sometimes more than they can teach us.
It wasn’t long before my bedroom began to resemble a respiratory care unit. And I personally resembled the little green Mucinex monster from the commercials on TV. I was green, gross and contagious. Frankly, I was my own worst nightmare.
And, I was exhausted. Coughing and keeping my lungs clear became a full-time job. The kind of job with lots of overtime and no weekends off. The really, really sucky kind. In fact, I was so exhausted that I took to blending my food so that I wouldn’t have to waste energy eating and chewing. Every ounce of my strength was devoted to respiratory care and I needed to maintain the nutrition and calories to do it. Yes, I really was that committed. And, yes, blended food actually tastes exactly the same as non-blended food. For example, a blended Chile Relleno still tastes exactly like a non-blended Chile Relleno. (Unfortunately, it does look like baby poop, though.)
As my efforts slowly yielded positive results, this didn’t stop the mental toll from weighing heavily on me. The anguishing rotating schedule of BiPAP, CoughAssist and Nebulizer— in between drinking my meals and trying to rest— was relentless. There wasn’t even much time for Netflix, which says a lot because I can always find time for Netflix.
Emotionally, I struggled. I cried, even (which wasn’t wise because it made me even more snotty and gross). I had nightmares about really scary things. Like going to the hospital… being put on a breathing tracheotomy that took away my ability to speak… and, worst of all, Donald Trump tweeting even more than he already does.
After two weeks, I began to see the light. I could go stretches of time without coughing. My doctor noted that my lungs were improving. I was eating solid food again. I stopped dreaming that Robert Mueller was kidnapped by Boris and Natasha.
Things were looking up.
And then, last week, I made it to Stanford to receive my 9th injection of Spinraza. It was just the boost that I needed. A physical boost, but perhaps even more importantly, an emotional win.
In the days since, I feel my strength slowly returning. It will take time for me to get back to my pre-iceberg self, but I just need to be patient.
Wish me luck!
(PS: If you need to find me, I’ll probably be watching Netflix.)
(This piece originally appeared today in The Patterson Irrigator.)
Recently, this newspaper chronicled the story of Owen Tyler— a seventh grade student with Down syndrome that is an active and valued member of the Creekside Middle School wrestling team. A video from one of his matches went viral online, highlighting the story of his inclusion in school and community activities. When I saw the video myself, it made me smile. After all, where there is inclusion, all humanity thrives and flourishes.
I would like it if we lived in a world where stories like Owen’s became commonplace. That inclusion became the rule, not the exception. That videos like the one from his wrestling match became so ordinary that there would be no need for it to be on television news.
As a disabled adult, I can attest to the importance of inclusion. I spent my youth mainstreamed in school classes and welcomed in extracurricular activities. This allowed me to grow and shaped the adult I would become. Further, I learned that each diverse voice counts, and that includes disabled voices like mine. Like Owen’s.
We must remember that inclusion of disability doesn’t end in childhood— it must continue on into our later years, too. After all, we spend much more of our lives as adults than we do as children. So, as a society, we must commit to this principle. We must value these life experiences and the importance they bring to society at-large.
The disability community is the only community of which anyone (regardless of age, race, gender, and income) can suddenly find themselves a member. An illness, an accident, the effects of age, can all lead someone to become disabled. At any time. This is why valuing inclusion is so important. Because there’s a good chance that it could affect you, or someone you love dearly, at some moment in life.
There is a bipartisan bill sitting in Congress right now called The Disability Integration Act (S.117, H.R. 555). It seeks to secure the Constitutional right to liberty for disabled people and seniors who want inclusive lives in the community. It wants to help aging seniors and the disabled stay in their homes. It seeks to save millions of federal and state dollars by avoiding expensive institutionalization, which is far costlier and less-effective than home- and community-based services. But, most of all, it seeks to make the spirit of inclusion part of the law.
This bill needs public support to help it move forward. So, I urge you to learn more about The Disability Integration Act. Talk to your elected representatives. It could make a big difference to you and the future of your loved ones— whether you realize it now, or not.
After all, where there is inclusion, all humanity thrives and flourishes. Just ask Owen.
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.
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!