A Summer Recap

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Today is the last day of August, which means it’s the last day of Spinal Muscular Atrophy Awareness Month, the last day I need to feel guilty about consuming pumpkin spice flavored products, and the last day of the eighth month of 2020— the year that seriously NEVER FUCKING ENDS.

As I write this, I’m sipping on a Starbucks pumpkin spice latte that was dropped off at my door by a mask-wearing friend— a drink that I re-heated before consuming with my own straw (because COVID, duh). My guilt about enjoying this autumnal beverage is now at a very low level. I love pumpkin spice and I’m not afraid to admit that considering I’m less than 24 hours away from turning the calendar into a month that ends in “-ber.”

Reflecting back on August, and the summer as a whole, I’m just glad to get this season behind me. It’s been long. It takes a lot of emotional bandwidth to be a very high-risk person during a global pandemic. To have to sequester yourself in your home for months at a time (with no end in sight) because the virus is so tricky, and not enough people in the nation, and in the community, are taking this risk seriously. To know that if you get COVID19, it will probably kill you. To know all of those things, but still try to keep a routine, and stay as safe as you can. It’s a lot to juggle.

Those of us with SMA are often expert jugglers, thankfully. It’s something that Spinal Muscular Atrophy Awareness Month should definitely highlight— which it really doesn’t. We can balance home, school, work, medical, and care attendant schedules so efficiently that often people don’t even see us doing it. We’re like ninjas. Crippled ninjas with great organizational skills. Yet, oddly, society often mistakenly thinks disabled people like me don’t have anything to do. That we sit at home all day watching reality television shows and FoxNews. Which is weird. If I wanted to do that, I’d just be President of the United States.

This August has also been hot. And smoky. Having a disability that impacts your respiratory system isn’t ideal when a giant wildfire is burning just a couple dozen miles from your house. The apocalyptic ash falling from the reddened sky is not a great visual for a year that has already turned into a real-life Hunger Games.

Thankfully, the summer did have some bright spots. I got my 13th Spinraza injection at the end of June— which was the first time I had really ventured out of my house since March. The injection went smoothly and it was comforting to be in a place where people weren’t whining about wearing masks like little assholes.

The summer brought more good news on the SMA front— the FDA approved another treatment for my condition. It’s called Evrysdi, which unfortunately sounds more like the name of a magical elf from Lord of the Rings than it does a medication. I suppose it really doesn’t matter what the name is… just as long as they don’t manufacture it in a tree. Evrysdi is an oral suspension drug taken daily, unlike Spinraza which is administered via intrathecal lumbar injection every 16 weeks.

I’m excited that there is now another option available for our SMA community. Just five years ago, I never would have imagined that this would be the case. I never would have thought that pharmaceutical researchers would have bothered to take the time, or use the resources, to develop one, let alone THREE treatments for SMA. The third being Zolgensma— a gene therapy for infants up to 2. (No offense to the Zolgensma people, but your drug name sounds like a StarTrek villain that wants to destroy the universe with a laser. #SorryNotSorry)

Note: I should probably add at this point that I am available to any pharmaceutical companies out there that need help coming up with names for your future SMA drugs. It might save you considerable headache if you just ask me first. Because I will make fun of the name. I just can’t help myself. Just like I can’t help myself from imagining that Spinraza was the name of a 1920’s showgirl that waved around a 6-foot feather boa.

Anyway, that’s it for now. I think it’s best to wrap this up because I’m getting down to the bottom of my pumpkin spice latte. And it will take all of my concentration to slurp up the last orangey bits of nutmeg swimming at the bottom.

So, with that said… Cheers to all of you. xoxo

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Further Greetings from Quarantine

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(this piece originally appeared in The Patterson Irrigator today)

It’s been a while since I’ve written here, an occurrence for which I heartily apologize. In fact, this is the longest stretch of time that I haven’t written a piece in the nearly 15-year history of my column. Perhaps you’re wondering what happened to me. Well, I’ve just been working really hard to not catch COVID19— a virus that my doctors have said would probably kill me.

As you might have guessed, due to my Spinal Muscular Atrophy (a neuromuscular condition), I am in the highest mortality risk-group for COVID19. At the end of February, my doctors advised me to self-isolate. Since that time, the few people that enter my home must be symptom-free, wear a mask and wash their hands thoroughly and frequently. They also must be able to juggle, speak Vulcan and play the banjo.

During the last four months, other than two necessary doctor’s appointments, I literally haven’t gone anywhere. Anywhere. Not even to get my favorite tacos. Not even to see my friends at a “social-distancing” BBQ. And, I definitely haven’t snuck into someone’s random garage to have an underground haircut.

I’ve been wanting to write about my experiences here for some time, but, have been reluctant to do so. During quarantine, many high-risk folks (including the disabled) have attempted to share scientific information about the importance of social-distancing, hand-washing and mask-wearing. And many of us have been harassed for doing so. A disabled friend of mine wrote a column in a newspaper about this topic and received hate mail. She was called “selfish” for even asking people to alter their lives and routines to protect high-risk people. Her life was devalued. Her viewpoint, muffled.

I, too, have encountered such attitudes. It’s a big reason why I haven’t written here in months. The emotional challenges of COVID19 are difficult enough without having to keep justifying the value of your own life. The value of elderly lives. The value of the millions of high-risk people around this country.

But, with things opening up now, and case numbers surging locally, I’m done being quiet on this subject.

I’ve seen the massive denial many people have of how interconnected all our lives are. How we all rely on one another. No one wants to admit how vulnerable they might be, and, in turn, how vulnerable society is, to a crisis of this magnitude. It’s why the online conspiracies about this virus are so rampant. It’s easier to make yourself believe that the virus was manufactured in a Chinese factory like Tickle-Me-Elmo than it is to accept the more frightening truth: that economies, nations, and communities can be ground to a halt, at any moment, because of a random and naturally-occurring mutation in a virus.

That’s some scary stuff. It can make a person feel very small. And no one likes to feel small.

Therefore, I urge you to exercise caution in the coming months. With things opening up, you don’t want to be that horny college kid, do you? The one that celebrated freedom from his parents’ house by sleeping with the entire Alpha Phi pledge class and getting a bad rash on his man parts.

No one wants to be the guy with chlamydia. So, don’t be that guy now. Wash your hands. Wear a mask. Don’t be an arsehole.

P.S. If you want to write me hate mail, please use a quill pen, calligraphy and then shove it in a box under your bed. All other comments welcome at: http://www.elizabetteunplugged.com

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#ThanksForDistancing

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Under the advisement of my doctor, I have been in self-quarantine for the last 58 days. In that amount of time, I’ve only been ONE place, and that was to receive a life-sustaining Spinraza spinal injection with my SMA neuromuscular specialist. To be honest, I would have taken these precautions even without my doctor’s advice. After all, I did have an awareness that humans are reeeally great at spreading germs around— just like monkeys love to throw their poop. I knew in my gut that COVID19 was coming— just like Randy Quaid knew that the aliens were going to attack in Independence Day.

As someone that is high-risk, not just for COVID19, but for other respiratory illnesses, I have a well-developed radar for danger. I’m like one of those police dogs that can sniff cocaine in a Toyota Corolla parked 9 blocks away.

By the end of January, I started to get a twinge. An inkling. I started to feel something looming on the horizon. I had seen the news reports from China. I knew it was impossible to contain a virus in this modern, fast-paced world. It was going to spread. It probably already had. Ever try keeping an entire litter of kittens contained inside of a box? Good luck— because at least one little bugger is going to sneak out of the box when you aren’t looking.

When I went into self-quarantine 58 days ago, I began to mentally prepare myself for the long-haul. I knew that this virus wouldn’t go away quickly. It would linger and I would have to be careful for many, many months. Possibly over a year. It was a lonely & isolating thought— removing myself from the world with no reasonable end in sight. Yet, I had some experience in this regard, thankfully. Cold & flu season is dangerous for me… so quarantining and socially-isolating is not a new thing for me. I do it at various points each year. Never to this extent, though. Not by far.

But, I had been training my entire life for this. It would be my personal Mount Everest Moment. My Reese Witherspoon Trying To Do The Pacific Coast Trail Moment. My Donald Trump Pretending To Not Want To Fire Dr. Fauci Moment.

But, as the virus spread (which I knew it would), and many grew sick and hospitals became overwhelmed, people actually began to take the threat seriously. Cities issued stay-at-home orders. States & nations shutdown. Governments finally responded. And, most amazing of all, people learned how to wash their hands. To be honest, I was surprised that these measures were actually being undertaken. And I was even more surprised that they were being followed.

This isn’t to say that I don’t think these measures were valid. Yes, they were— and still are! But, I guess the skeptic in me didn’t think our society had it in us to do something like this… to take drastic life-altering steps like this. To buy hand soap… and to stay home— on a massive scale.

It’s a huge deal.

As someone that has experience with quarantining, and living life within physical restrictions, I understand how difficult these times can be. Logistically. Financially. And especially emotionally. It is a mental hurdle that is not easy to surmount— especially when you have no experience doing so. So, I want to acknowledge that.

The stress of all of this is real. The burden of all of this is real. For the young. For the old. And for all the ages in between.

But, the steps we’ve taken (and continue to take) have given me hope. The curve is flattening, and many lives are being saved. We are buying time for science to catch up with this virus. We are giving hospitals time to prepare. On a personal note, the murky specter looming of many months of isolation now feels less gloomy because of what society has done… what you have done.

And I’m so very thankful.

To help get through the days until communities are able to loosen the restrictions in place, I thought it might be helpful to share some survival tips that I’ve honed through the years. I am a veteran Quarantiner, after all.

    1. Create A Routine — this is an essential component of surviving shitty times. For reals. Don’t be going to bed at 2am one day, and 7pm the next. Eat meals/snacks at a set time. Schedule Zoom sessions with friends. Write down a schedule. And stick to it. This helps regulate your nervous system & your anxiety.
    2. Create Benchmarks In Time — Having something to look forward to, however small it might be, is key to getting through each day. I recently instituted “French Toast Fridays.” Each Friday, I have homemade French Toast for lunch. It’s simple, but it’s something I look forward to because I get to put a mountain of whipped cream on top.
    3. Create Small Daily Goals — Often people think that a feeling of achievement can only happen when it’s something big. This is not true at all. Small achievements, even arbitrary ones, can help occupy the mind & give it direction.
    4. Create Gratitude — At the end of each day, write down (or say out loud) three things you are grateful about that day. It could be something serious, or something silly & inconsequential. For example, you could say “I’m thankful for… 1) my home… 2) my family… 3) the mute button on the Zoom app.”
    5. Create Your Castle — A “castle” is a safe-space. A place that protects you from harm. Instead of thinking of your home as a place you are confined to, think of it as your “castle.” A castle can also be something smaller than a home. It can be a bedroom, a corner of the living room, or even the 15 minutes spent alone in the shower. It’s a space, or a time, where you can just BE.
    6. Create Moments of Joy — Despite what you may think, little moments of happiness can be manufactured. You can conjure them up from anywhere— like a Patronus charm. For example, about a month ago, my friends & I decided that our group text messages to each other must be written in rhyme. (Shel Silverstein can kiss my ass.)

I think it’s important that we all are aware, though, that many people live in unsafe environments— whether it be from abuse, domestic violence, or extreme poverty. So, during these times, we must be aware of the struggles of others and offer compassion, aid & understanding when we can.

We can be kind,
If we just set our mind.

❤️

[If someone you know is struggling… the National Suicide Prevention Lifeline (1-800-273-8255) & the National Domestic Violence Hotline (1-800-799-7233)]

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A Letter from Quarantine…

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Hello Family & Friends!

Greetings!… just wanted to give you an update on me & my COVID19 prepping.

As you might have guessed, I’m in the highest risk group for this virus. Two weeks ago, my doctor advised me to self-isolate for my own protection— which I have been doing. Given the muscular & pulmonary weakness that comes with Spinal Muscular Atrophy, my mortality rate for COVID19 would be elevated. I’ve limited visitors & each person entering my home must be symptom-free & must wash their hands for 30 seconds. (They also must be able to juggle and play the lute.)

My anxiety is really high. No matter how mentally prepared you are, it’s still tough to process this life-threatening reality. Just like it’s difficult to process why everyone is hoarding all the toilet paper. COVID19 is a respiratory virus, not explosive diarrhea. (We’re not all going to die of dysentery like on Oregon Trail.)

But, nonetheless, I’ve settled in at home for what will be a long, loooong period of months. Having SMA has taught me many things… the main of which being the ability to plan & organize. And to rationalize.

I’ve got a respiratory arsenal on-hand— all the gizmos that help me stay healthy. I am better equipped to handle COVID19 in my own home than most hospitals. And that’s a fact.

Frankly, I’ve been preparing for COVID19 my entire life. This is the crazy scenario those of us with SMA plan for. (Too bad ya’ll with normal-working bodies can’t do the same!!)

What we’re doing right now, as a country, is trying to slow the spread of the virus. It’s called “Flattening The Curve.” So, these next weeks, my risk of infection are actually lower. I know that sounds weird. But, it’s true. (Ya’ll are washing your hands so well at the moment, that I secretly wish you’d do it every flu season!)

I mean, really.

But, this sustained diligence won’t last. Once the curve is hopefully ‘flattened’ by all these extreme measures, that doesn’t mean the virus stops circulating. It will keep going in the months after that.

People will eventually get complacent… they’ll stop washing their hands so much & these serious public containment measures will lift.

And, that’s when the chance of me catching this will increase.

So, when you think about COVID19, remember this important fact:

This is a marathon, not a sprint.

This is a marathon, not a sprint.

When I think of COVID19, I’m thinking in terms of months. Not weeks. Many, many months. I’m calibrating my brain to this reality. So, be sure you do the same.

Tell your friends that these drastic measures now are to slow the tide of infections… so that science & the medical system can keep up— can save lives.

My goal is that by the time COVID19 comes to me— whether it be in 1 month, 3 months, or 6 months, science will have more data on this. That protocols of treatment will be figured out & implemented. I’m in an online group with SMA people from around the world. We are sharing data, ideas, and science with each other— in realtime. And once people with SMA start getting COVID19 (which will happen, eventually), we will learn from each other how to fight it.

In the meantime, I’ll be here, playing the “long game.” Keeping my contingency preparations in motion… and spreading awareness in every way I can.

So, if you need me, you’ll know where to find me! ❤️

Elizabette

P.S. Don’t suck. Be smart. Wash your hands.

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Aliens, Shrinking Potions & Ten Long Months

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Three weeks ago, I finally got my new wheelchair. And, when I use the word “finally” I really mean it— for I began the insane process of getting a new motorized wheelchair over ten months ago. That’s a considerable amount of time. It doesn’t take folks this long to buy a new car— which is surprising given my new wheelchair costs just as much as a Ford Focus.

But, honestly, ten months is a long time to spend working on getting a medical device that helps you, well— survive. Try imagining all the things that could be accomplished in a similar amount of time. Have you ever thought about this? Well, I have. Because I’ve had ten months to do so.

So, here goes.

Elizabette’s List Of Things That Take Ten Months To Do

  • You can gestate a full-sized human baby. Should you desire to do so, this also includes a few extra weeks to breastfeed. (Hopefully, you live in a society that allows you to do it freely in public and not hidden away in a cave like a troll.)
  • You could learn a new language.
  • If you’re a white man, you could go on a 16th-century ocean voyage around the world to “discover” places that already exist.
  • You could plant, grow and harvest a vegetable garden.
  • You could serve a full prison sentence for raping an unconscious woman. (But, don’t worry— you’ll probably get out in only three months.)
  • You could become a licensed electrician.
  • You could write a book.
  • If you’re Donald Trump, you could read a book… Just kidding! (He doesn’t read.)

But, instead of doing any of these things, I spent ten months of my life jumping the bureaucratic hoops to get a new motorized wheelchair.

It would be natural to think that I’d be ecstatic when the new wheelchair finally arrived. But, I wasn’t. This isn’t to say that I wasn’t happy. I was, of course. Obviously. But, the arrival of the new wheelchair heralded the most critical (and hopefully final!) stage of the process.

Making sure the wheelchair fits.

You’d think this would be a given. That all the measurements taken by the wheelchair provider would be accurate. That it would be simple to fit me into a wheelchair that was custom-built for me.

But, it is not.

Three weeks ago, when my new wheelchair rolled into my house, right away I saw a problem. It was over three inches too wide. That’s a lot. Yes, my ass is big. But, no, it’s not that big.

“Uhm… just wondering… did Howard Taft order a wheelchair? And, if so, did I get it by mistake?”

The wheelchair technician, Raul, looked at me— then looked at the new chair:

“Yeah. You’re right, this chair is way too big.”

I felt dread pool in my gut. My mind began to run with an assortment of cuss words. In various languages. (Don’t forget, I had ten months to work on my vocabulary.) Would they have to send the damn chair back? Would we have to start again? Was there a chance that I wouldn’t cry in despair??

My spiraling thoughts were interrupted when Raul said:

“Don’t worry. I think I can shrink it down.”

Really?”

I was dubious. It was unlikely he carried shrinking potion from Alice in Wonderland in his toolbox.

Over the next hour, he dissembled my new wheelchair in the middle of my living room. Pieces were scattered everywhere. It was like a really expensive LEGO set had barfed all over the carpet. Then, we began to strategize new ways to use the existing parts. Using different configurations. And, slowly, my new wheelchair began to take shape.

Nearly three hours after arrival, we did it. I was seated, driving, and fairly comfortable, in my new (smaller!) wheelchair. It was a feat of engineering, creativity and luck— which, come to think of it, is the essence of life with a complex disability. But, for while the chair is functional and comfortable, there’s a small (yet, large!) difference. I’m sitting over an inch lower than I was in my old wheelchair.

Another key part of life with a disability? Learning to adapt. This skill is essential. And, unfortunately, in a world that’s not always accessible, it’s a survival tool, as well.

An inch may not seem like a big difference. But, when you have everything in your daily life and routine adjusted to a very specific height, this is significant. For example, imagine if aliens came down from outer space with a technology that transferred your head onto another person’s body. How would you feel?

Probably pretty awkward.

(And, no, Will Smith and Tommy Lee Jones won’t be able to save you.)

Adjusting to the new wheelchair feels very much like that. Even with most aspects being similar (if not nearly identical!), it’s still a challenge. In fact, I’m currently typing this on my desk that I had to recalibrate to fit the new ‘me.’

Honestly, it’s going fairly well, but oddly, on my computer keyboard, I’m now having trouble reaching the key for the number ‘nine.’ I’m sure I’ll figure out an adaptation for it eventually, though. But, in the meantime, I suppose I could refer to the number as 8+1. Although, if I’m feeling especially tired, it might be best if I spell it as 5+4 since those keys are closer together.

We’ll see. It’s not as if numbers are all that important, anyway.

Nonetheless, I must roll onward in this new set of wheels. If you see me, though, please don’t comment on how I’ve grown shorter (yes, this has already happened to me twice).

Also, just because the top of my head is now more within your reach, don’t take that as an invitation to pat me on the head like a cocker spaniel. And definitely don’t ruffle my hair the way your uncle Tony greets every child he meets under the age of 8+1.

Because I really hate that.

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Facing Voldemort

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When you’re disabled, you learn to adapt… tweak… make-do. These skills are essential, because as much as the modern, progressive world likes to think it’s ‘woke as **ck‘ — it’s really not. Full inclusion of disabled people in society is a long way off, and these issues barely register on even the most liberal political agendas. In fact, during this election season’s rounds of televised Democratic debates, I haven’t heard one of the 318 presidential candidates even say the word ‘disability.’ Considering disabled Americans are the largest minority group in the country— one that spans race, gender, religion, sexual orientation, and socioeconomic background— you’d think it would come up. At least once. (Just like Bernie Sanders yells and shakes his fists at another candidate at least once a debate.)

It’s possible the candidates are just being thoughtless in ignoring disability issues in the debates— like when careless people forget to put another roll of toilet paper in the bathroom after they’ve used the last square of Charmin. But, perhaps there is another, more sinister meaning. What if they are subconsciously afraid of saying the word ‘disability‘ aloud because then it acknowledges that we actually exist? And, maybe, just maybe, they are frightened of us? It could be possible. After all, this was why everyone was reluctant to say Voldemort’s name aloud in Harry Potter.

Let’s not forget that even The Ministry of Magic discouraged folks from saying it at Hogwarts. They worried that if someone voiced the name of Voldemort, the most dreaded wizard in the land, it would give him the power and recognition needed to rise up. And that was definitely not okay… because then all the normal wizards would have to face the fact that they were only one Death-Eater attack away from a nursing home run by Hufflepuffs.

So, yeah, you can see why they’d prefer to pretend like we don’t exist. It’s scary to imagine the power potentially wielded by 1 in 5 Disabled Americans. Because not even the mighty Teamsters Union can muster these kinds of numbers— even though Joe Biden desperately wishes that they could.

I think maybe it’s time for us to be a little scary. Be a little loud. Because we are not only fighting for ourselves. We are fighting for everyone. After all, we are also the only minority group that anyone can become member— at any time. Plus, if you live long enough, you’re probably eventually going to need the homecare services we are fighting so hard for, too.

I hate to break it to you, but not even the best Patronus charm can do a damned thing about that fact. Eventually, you’re going to need someone to help you get out of bed in the morning. You’re going to need someone to help you prepare your meals. Hell, you’re probably going to need help wiping your own ass. But, here’s the thing: unless you meet the impossibly stringent & poverty-driven Medicaid guidelines, you won’t qualify for homecare services.

Despite what you may believe, Medicare and private medical insurances currently do not cover homecare. So, you could lose your house, your retirement and all the things you worked your entire life to achieve just to pay for medically-necessary care costs.

Thinking of just going to a nursing home? Good luck with that— the care received in institutionalized settings are substandard, dangerous, and far, far more expensive than the costs of providing care in your own home… in your own community.

Given that homecare is cheaper and safer than institutionalized care, isn’t it surprising that it’s not covered by Medicare and private insurances? Wouldn’t logic say that it should be covered? Well, yes. But, denial is a powerful thing. And the denial of the notion— the reality— that anyone could become disabled at any time in their life is even more powerful. It’s no wonder no one wanted to say Voldemort’s name in Harry Potter. That was some scary shit, yes?

But, if these services existed— and were more available— maybe disability (and even old age!) wouldn’t be so fucking scary to everyone. Maybe then we could change the whole narrative around it.

However, first, a narrative must begin. And, to do that, someone needs to talk about it. But, I’m afraid that with the current slate of presidential candidates, that’s not likely to happen. Why?

Well, the top contenders Joe Biden, Elizabeth Warren, Bernie Sanders and—yes, Donald Trump— are all over the age of 70. Given society’s subconscious aversion to disability and old age, these four main contenders definitely do not want to draw attention to how old they actually are. (I mean, no one wants to yell Voldemort in a crowded cafeteria, do they?)

Even though you’d think these presidential contenders would be ideally suited to discuss these issues (given they are closer to the age of needing these services), there’s NO damn way they are going talk about that. Just look how long it took Bernie Sanders’ campaign to acknowledge his recent heart attack? Look how evasive Donald Trump is in releasing his full medical records? (And, no, it’s definitely not because he’s got the most greatest health in the history of all American presidents— including, of course, all the leaders of the most bigly and powerful nations in Earth history.)

So, who is going to do the talking, if not us? Who is going to make people uncomfortable so that they can face the reality of their own human frailty? That they will need help someday? I guess that falls to us disabled folks.

This election season, perhaps you should give this some thought. Who will best fight for you when you need it most?

Because, like it or not, Voldemort is coming.

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Birthday Evolution

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When I was young, I hated the attention I received on my birthday. I hated when people would sing me the “birthday song.” I would whimper. I would cry. And, if my weak SMA muscles would have allowed it, I would have slithered into a ball under a table at the first note of the famous tune.

Many people that know me now would be surprised by this. But, it’s very true. If, on my birthday, I could have burrowed into a hole in the ground like El Chapo evading the Federales, I would have done it.

Por supuesto.

Being a small kid with a visible disability, you always get looked at differently. Always. Even as a tiny child, you sense the eyes that follow your every move. The assessing. The wondering.

The what is wrong with that little girl? gaze that becomes so familiar. While it’s not a scary experience, it is an annoying one.

If you’re wondering what that look is actually like, here’s how I would describe it. You know those ASPCA commercials with that mournful Sarah MacLachlan song? The ones with her singing “Angel” as they show a montage of sick and undersized puppies that will die if you don’t donate $15 a month? You know that sad (nearly tearful) look that your face gets when you see that commercial?

That’s the face I’m talking about.

So, yeah… pull it together, dude.

Anyway… when you’re already ‘different’… and used to being recognized by many as ‘different,’ you don’t want any more attention than absolutely necessary. So, your birthday is yet another extra spotlight that shines upon you each October.

I felt this way for many years. I didn’t want the additional fuss, or the attention, that came with that day. I had enough of it already.

But, as I approached my 30th birthday, a birthday that many doctors had predicted that I may never reach, I began to feel very differently about it. It evolved in my mind. It felt like a milestone. An achievement. A mark of a battle that I was winning.

And, suddenly, celebrating my birthday became something that I wanted to do. It was something that I didn’t want to tuck into a drawer and pretend didn’t exist. I wouldn’t be like Rudolph Giuliani ignoring a Congressional subpoena.

I would face it. And enjoy it.

So, now, here I am, years later, on my birthday, proud to be alive and proud to be a part of this world. It’s been a lot of hard work getting here (and I’ve had a lot of help along the way)— but, I did it.

Happy Birthday to me.

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(Yes, that’s a pumpkin spice latte. Duh.)

Becoming Oliver Twist

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Life with a complex disability, like SMA, is obviously challenging. It takes a great deal of physical, emotional— but, most importantly, logistical— strength to power through each day. Your brain always has to be 2 or 3 steps ahead in order to anticipate challenges that life, and this very inaccessible world, love to throw at you. It’s exhausting. It’s like playing an endless game of Whack-A-Mole at Chuck E. Cheese. You know those little heads are going to pop up somewhere. So, all you can do is keep slamming the mallet down on the board hoping you earn enough tickets to buy a Slinky at the counter.

This constant state of preparedness is a necessary evil. It’s the thing that makes it possible for me to get out of bed in the morning. To have the ability to do the work I do, and I accomplish what I need to accomplish— all while balancing my complex medical needs.

As I’ve discussed frequently before, my custom power wheelchair is a big part of this effort. It’s the most important tool in my life. It’s the object that makes my life— my independence— possible. At the beginning of this year, I began the arduous process of getting a new wheelchair. Medicare requires that many steps be completed before an order can even be processed. Initial Visit With Doctor. Evaluation from Special Physical Therapist. Consult with Wheelchair Provider. Assessment With Doctor.

Each of these steps must be done in a certain order, the documents must be signed and authorized by all parties, and all of it must be done sequentially. Like a really complicated, and really French, pastry recipe. The foofy, pretentious kind. The kind that takes hours to make, you eat in two bites, and leave you hungry afterward.

It’s a fucking nightmare, frankly.

I have a Type A personality. I like to get shit done. This trait has come in handy with my SMA, because such attention-to-detail is why I’m still alive and thriving 35 years after most doctors thought I would be dead.

But, this ‘wheelchair vortex of hell’ doesn’t always reward such preparedness. Because, no matter how on top of things I am, I am still at the mercy of a large medical bureaucracy. The bureaucracy lets unsigned forms sit on desks. The bureaucracy will deny a claim because one date is mistyped on one form. The bureaucracy won’t pick their own nose without a memo telling them which finger to use.

Just a few weeks ago, (but, nearly nine months into the entire process!), Medicare finally authorized my request for my new wheelchair. This was after several paperwork kinks and delays that nearly made me sit in a corner and cry. But, with this authorization, the DME (durable medical equipment) company was then able to place the order with the manufacturers.

You’d think I’d be ecstatic. You’d think I’d be over-the-moon with happiness… you know, just like R. Kelly is in a room of underage girls.

But, I decidedly was not. For I knew that my current wheelchair had to survive until the new chair arrived— which could still take months. And that was the biggest gamble of all.

Because, you see, Medicare would not authorize repairs to an existing wheelchair while a new wheelchair is being ordered. So, I would be majorly SOL if my current wheelchair took a crap in the meantime. Therefore, each bureaucratic delay— each kink that I had experienced in the process— increased the probability of this happening.

And, yesterday, the laws of probability— the laws of mathematics— finally caught up with me. A “RIGHT MOTOR FAULT” error message brought my wheelchair to a halt.

This isn’t the first time this has happened during my wheelchair-using life. In fact, with this wheelchair, alone, I have had to have the motors changed FOUR TIMES. Yes, that’s right. So, when I saw this “RIGHT MOTOR FAULT” error message, I instantly knew that in about a week, my life was seriously going to go down the toilet until I could get new motors installed.

With the arrival of my new wheelchair nowhere in sight, and the necessity of having a functioning wheelchair, I had to do a painful thing. I asked the DME company to order me a new set of motors. I agreed to pay the hefty price. Because, this wheelchair is my basic tool of life, and without it, I can’t function. The DME company understands my pain and kindly agreed to give me a cut rate, but it’s still more money than most people pay for their first shitty car.

To be honest, I actually cried. I sat and cried because I was going to have to find a thousand dollars to fix a device that allows me to live.

It’s demoralizing. And it makes me feel very, very small. In an inaccessible world that’s already stacked against me— a world where I have to be smarter, wittier, and more prepared than everyone else— I still have to scramble for this most basic thing.

But, I don’t have a choice. So, I applied, and received, a disability grant from NMD United to help me pay for some of my replacement motors— and I set up a GoFundMe to cover the remainder of the cost.

The sad thing is, I shouldn’t have to do any of these things. This wheelchair is a medical device. It’s a lifesaving device. I have Medicare. I have a private supplemental insurance plan, too.

I shouldn’t have to peddle to others for something like this. No one with a disability should have to do this— yet, we are forced to do it everyday, in some form or another. It’s so Dickensian. So two-hundred-years-ago.

Yet, nonetheless, here I am, like little Oliver Twist, holding out my small pail—

Please, Sir, I want some more.

oliver

Note: If you are disabled, and have experienced similar problems getting coverage for your specialized wheelchair repairs, please write in & share your story. We must try to speak out when we can. And speak loud. Wheelchairs are more than “durable medical equipment” — they are life-saving and sustaining.

A Time Traveler’s Guide To Judgment Day

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Since beginning my Spinraza journey over two years ago, I have been exposed to some pretty high-level scientific stuff. The Principles of Motor Neurons. Genetic Sequencing. Genetic Manipulation. And a whole bunch of really smart people geeking-out on how to turn cripply SMA people like me into X-Men.

People often ask me what it’s like, during this stage of my life, to describe what Spinraza has meant to me. What it has done for me. Most of the SMA patients out in the world are adolescents, children. Many are babies. After all, only a small portion of those with SMA make it into adulthood. So, those of us that are adults can give a perspective that children simply aren’t able to do. We have more life experience, and frankly, we’ve got the big-adult vocabulary to articulate what this is really like. We’ve got detailed analyses with really large words. SAT words. Oxford Dictionary words.

So, do you want to know what it’s really like?

You know the classic H.G. Wells novel, The Time Machine? The story that popularized the concept of time travel and launched an entire genre of science fiction? When Wells first published the book in 1895, it sparked the imagination of millions. Over a century later, the concept of time travel is still intoxicating.

Everyone (including you!) probably has a secret idea of what they’d do if they had the opportunity to travel in time. While most would do something selfish, like get winning numbers from a future Powerball drawing, some folks would do something more altruistic. Something that would benefit mankind… like killing Adolf Hitler or castrating Harvey Weinstein.

But, all these scenarios are fictional. Because time travel is impossible. Right?

Well it is… Unless you’re me.

If you really want to know what the Spinraza process has felt like to me— what is has meant to me— this is the way I describe it.

I am now a time traveler.

A time traveler that is revisiting a part of her life that she thought was gone forever.

Spinal Muscular Atrophy has always been a progressive condition. I was stronger at 5 than I was at 15. At 15, I was considerably stronger than I was at 35. And, by 55, there was a good chance that I would be dead.

But, with Spinraza, a crazy thing happened. The mad scientists at Stanford thrust me into their Interventional Radiology room— injected some liquid into my spinal fluid… and turned back time.

I began to live in own past. I could do things that I hadn’t been able to do in years. I was living in the past. Just like H.G. Wells wrote about 124 years ago. And, just like the novel, it’s been a wild, and frankly exhausting, ride.

It’s important to note that time travel isn’t free— and Spinraza is one of the most expensive drugs in the world. So, to continue to qualify, I must undergo thorough physical and respiratory evaluations every few months to measure my progress.

Given there aren’t many adults like me receiving the treatment, the data gained from our experiences is especially valuable. These measures and outcomes will hopefully offer the evidence needed to expand Spinraza access here in the US, and around the world. I want more time travelers with SMA. But, to do that, we’ve got to illustrate the benefits with cold, hard data.

No matter how you slice it, though, this added pressure is intense. While I’m constantly told not to be anxious about it— to simply do my best— I do worry about it. I fret about the messages I get from people with SMA around the world longing for treatment. I fear they won’t get to travel back to their past.

I feel guilty that I do.

Not all of us long to do something bold with a time machine. We don’t all want to be heroes that shoot Nazis. Some of us just want to travel to a time where we could talk a little louder… laugh a little harder… and pick our own boogers.

A few days ago, I had yet another full day of these assessments. It’s a day that I truly dread. Each time. It’s long, exhausting, and I usually always have at least one moment when I long to scream or curl into a corner and cry.

I care so much about these tests that it’s almost all-consuming. I do frequent physical therapy in preparation. I have even sought support from a counselor to work through the emotional challenges of this arduous process. These assessment exams are often all I can think about. Literally. All. I. Can. Think. About.

It’s like how Donald Trump must feel about Twitter.

I came into this assessment day— judgment day, frankly— feeling unsure. Feeling like perhaps I had plateaued. That I hadn’t noticed a change from the last time. I was resigned to this idea. I accepted it. It was okay (and expected) to have a plateau because SMA, by nature, is progressive. Stabilization is a win, too. Stabilization means more time available in the time machine.

But, I had a surprise. My respiratory measures showed additional small gains. My physical assessment was the most solid— yet.

The time machine was still working.

While I made it through this judgment day, in six months, I will have to do it all again. And again… and again. Because, in some way, time still manages to march on.

But, I’ll be waiting for it.

Looking at these stars suddenly dwarfed my own troubles and all the gravities of terrestrial life. I thought of their unfathomable distance, and the slow inevitable drift of their movements out of the unknown past into the unknown future.

H.G. Wells, The Time Machine

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