After Hawking

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The downside of my celebrity is that I cannot go anywhere in the world without being recognized… The wheelchair gives me away.
— Stephen Hawking (1942-2018)

The passing of theoretical physicist & cosmologist Professor Stephen Hawking earlier this week leaves a big, gaping hole in the scientific world. A black hole, surely, of infinite size, depth and velocity— so powerful that probably only Dr. Hawking, himself, could describe it. I won’t pretend to attempt it because my scientific knowledge is limited to shit I’ve read in National Geographic Magazine. And random stuff I’ve Googled on Wikipedia.

So, yeah, I’m not very sciencey.

Professor Hawking was also probably the most famous person in the world that happened to use a wheelchair. A real-life Professor Xavier from X-Men… only with glasses and a better haircut.

For the majority of his life, Dr. Hawking had ALS— a progressive motor neuron disease. Due to advancing medical science, and the top-notch home care he had available to him, Professor Hawking’s lifespan exceeded that of many others with ALS. (Which speaks to the importance of self-managed home care for those with disabilities and why it should be more readily available— and covered!)

His life was even the subject of the 2014 biopic, The Theory of Everything, starring Eddie Redmayne. Eddie won the Academy Award for his portrayal of Hawking, which was not surprising because everyone knows that the best way to win an Oscar is to play a disabled character. Of course, the caveat being that the actor, himself, can’t—under any circumstances— be disabled in real life. Because that would be stupid.

I thought the movie was fairly decent up until the end… when a brief scene actually made me yell aloud in disbelief: “As if!”

While at a lecture to receive an award for his many, many achievements, the filmmakers inserted a moment where Professor Hawking witnesses a student at the lecture dropping a pen. The writers have Hawking daydream that he can stand up out of his wheelchair and pick it up.

Really??

A man that thinks in fucking lightyears and units of measure that literally NO ONE ELSE UNDERSTANDS is going to pause while receiving an award, to muse, “Gee. Screw science and my accomplishments. If only I could pick up this pen…

I call bullshit.

But, you see, that’s what society would believe that he’d be thinking. Because to be seriously disabled is so scary to most people that they can’t even fathom it. To someone able-bodied, of course, Hawking would yearn to pick up that pen. But, in reality, he probably was thinking nothing of the kind.

As someone disabled, I can honestly say I’ve never seen someone drop a pen, and then lament, “Gosh, my life would have SO much more meaning if I could pick up that pen off the floor.

Anyway, I seem to have digressed.

In the days since Professor Hawking’s passing, the internet has been awash with obituaries and tributes to him. His scientific achievements merit such accolades, that’s without question. While many of these tributes are extremely well-meaning, they miss a key element of the man that was Stephen Hawking…

He achieved everything he did with his disability, not despite it.

Stephen Hawking didn’t overcome his disability. He lived with it— achieving great things in the process. His infamous wheelchair wasn’t a trap, or a road block… it was a vital tool of life.

I’ve seen several cartoons and graphics circling the internet this week, showing Hawking drifting out of his wheelchair to stand and walk among the stars. Implying freedom. That he’s free from his wheelchair now. Free from the bounds of his disability.

Many seem to find this touching. Which is why these images have been shared thousands of times. But, when I see that, it makes my gut clench.

No matter how much Stephen Hawking had accomplished in his life, his story wasn’t complete without this magical metamorphosis. Floating free from his bonds to stand upright. To walk among the cosmos on two working legs. Because, heaven forbid anyone drive a wheelchair through the stars, instead.

While I’m not anywhere close to Hawking’s genius and epic achievements (by lightyears), as a disabled person, I’ve got a few things in common with him. His passing, and the response to it, has made me reflect upon what others may think about me.

When I die, will people think that I’m free? That I no longer have my wheelchair and disability to bind me?… burden me?… hold me back? Has my life boiled down to that?

I can say one thing for certain. If you draw a cartoon tribute of me floating out of my wheelchair after I die… or say that I’m “free now”… I will personally haunt you until the end of your able-bodied days. Not a cute haunting, either. A really annoying one where you hear whispers of “Fuck you” whilst you drift off to sleep. You’ll also never find your favorite pair of socks and your coffeemaker will always seem to malfunction when you are tired and/or hungover.

You will RUE. THE. DAY.

In fact, if it were theoretically possible, I’d come back to life, like Jesus Christ, just so that I might run you over with my wheelchair. Yes, I would definitely do that. Resurrection is a small price to pay for revenge.

So, your best bet? Don’t be comforted by thoughts that I’m “free.” Rather, please be sad that I’m dead. Okay?

Something tells me that Stephen Hawking would agree with me.

xoxo

Stephen Hawking NASA 50th

(photo via NASA)
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Alexa Saves The Day

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When you’re disabled like me, technology is interwoven into the very tapestry of our everyday lives. While most folks can’t set aside their addictive iPhones long enough to take a shit, at least those devices aren’t hinges of mobility. Tools of survival.

In order to fully function, our gadgets must be in complete synchronicity… like an orchestra playing well in tune. If one instrument goes awry, the whole concert could be a total flop. Like Lady-Friendly Doritos or Kevin Spacey’s career.

I’m not a novice when it comes to technology fails. Just weeks ago, I grappled with a wheelchair shutdown that, while eventually resolved, led me to have anxiety for nearly a fortnight. I’m glad to have that behind me, but the delicate balance of our disabled, gadget-rich lives always teeters on the edge of the precarious.

This morning I had one of those moments. When the balance shifted decidedly out of my favor. It was an ordinary day and I was doing ordinary things. Drinking my late-morning coffee. Attending to various tasks. When suddenly, the perfect storm happened.

My dominant arm, which I use to support myself, fell out of place on the armrest. This, in turn, caused my chest to topple forward and my neck to get thrust down. Often, I’m able to extract myself from the situation with various wheelchair maneuvers. Like gunning the throttle to thrust my body backwards. Or, shoving my chest up against a table. But, this time it all went spectacularly wrong.

When I attempted to push my chest backward against a high table, my arm slipped further and activated my wheelchair’s tilt seating system so that it lowered and pinned me against the table. Unfortunately, my arm was stuck on the tilt button, keeping it activated and running, even though it was fully lowered. When the tilt is activated, the wheelchair is immovable, meaning the control box was useless. Meaning I couldn’t reverse myself to reach the iPhone that was resting on my lap. Meaning that I couldn’t text or call for help.

I was well and truly fucked.

I began to panic as the seconds ticked by… and the seating tilt motor ground forward in an endless mechanized rhythm. I couldn’t get it to stop. I knew that if it continued for an extended period of time, I could burn out the electronics.

While you might think that I was most concerned about my own current discomfort, no… alas… I was thinking about my wheelchair. And how disastrous it would be if the tilt system went kaput.

The panic grew overwhelming, and my breathing grew labored in the awkward, cramped position I was in.

Although I was currently alone, I knew someone would be popping in within the next hour. But, I didn’t think my panic or my seating system tilt mechanism would last that long.

All sorts of crazy thoughts were accelerating through my head like a runaway locomotive… or those commuter trains that always seem to be derailing in movies starring Denzel Washington.

How long will I have to wait here?

How much would a new tilt cost?

Will the insurance pay for it?

Will it take weeks to be fixed?

What if I panic and die?

What if I panic and die while Donald Trump is still President?!?

I was a righteous mess. I tried to calm myself. Stop the pounding heartbeat I could hear inside of my head.

And then, I remembered it.

ALEXA!

My Amazon Echo Dot (similar to the Google Home Mini) was perched 8 feet away. It had been given to me by NMD United, a peer-run non-profit organization that serves adults with neuromuscular disabilities. It’s voice-activated tools are extra helpful to those of us with mobility issues.

It’s always just waiting to do helpful things… like tell me the weather forecast, play me songs by Katy Perry… or… call people for me!

I called out, “Alexa, call someone!

She replied, “Who do you want to call?

I began to grow irritated, “I don’t care!”

Donna Karan is not in your address book.

ARGH!

I pulled myself together, “Alexa, call 2, 0, 9, 6…..

After a pause, she asked, “Would you like me to call Daddy Cell?

Yes!!!” I exploded.

When the Echo Dot began to ring and I heard my dad’s voice answer, I collapsed against the countertop in relief. I think I even drooled a little.

I’m thankful to say that my dad arrived before any noticeable damage was made to my wheelchair. Although, perhaps time will tell on that front. Luckily, even though it felt like an eternity on my end, I think the entire episode only lasted about 10 minutes. And I’m doing A-OK now.

Technology is a fickle, fickle business. And our hold on it is incredibly tenuous. But, sometimes, when one aspect fails, another may save the day.

Thanks to Alexa.

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Test Anxiety

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No one likes tests. Whether they’re in school, at the doctor, or at the DMV— they are generally un-fun. You rarely hear someone yell, “Yay, a test! I’m SO happy.” If a person did say that, you’d probably question their mental stability.

For a lot of folks, tests bring out an anxiety— a stress to perform well, which, ironically, is made harder by the stress itself. It’s a terrible Catch-22.

I have to do well on this test or I’ll never go to college!

I have to pass this exam or I can’t get my license!

Will that marijuana I smoked a month ago show up on this urine test!?

As a worrywart, high-achieving student, I generally would experience some anxiety before tests, especially the big exams— like the AP test, the LSAT, and all those personality tests on the internet. I’d fret for days beforehand, wondering how it would all turn out. Would I score well enough on the LSAT to get into law school?… Would the online test sort me into Hufflepuff or, worse yet, Slytherin House?!

These thoughts would consume me.

It shouldn’t be surprising that when it was time for me to have another evaluation to check my progress on Spinraza, I worried about it. A lot.

While I had felt positive changes, and experienced measurable improvements previously, would it still translate to results this time?

It was a question that loomed over me… like the Hindenburg right before it exploded.

I’m sure reading this, you’re probably thinking, “Girl, calm down. Don’t stress. Just do the best you can.

I wish it were that simple. Given the high price tag associated with nusinersen treatments, there are many insurances and government agencies that are looking to limit who has access to the drug. They want to put parameters on who can get it and who can’t. And a major factor they are looking at is age.

As an adult in my thirties with Spinal Muscular Atrophy, I am considered old. Not old in the way that Betty White is old, but at least old in a moderate way… like Jane Fonda or Donald Trump.

While there aren’t THAT many of us that have lived this long with SMA, there are still plenty of us adults out there that need access to this drug. So, we have to continue to prove that this treatment works for adults. That it produces results.

That’s a lot of pressure. Especially for something that a person can only do SO much about. I can do stretching, breathing exercises, and increase my protein to help things along, but that’s about it. I mainly have to see if the magical Spinraza droplets do their work.

Leading up to my evaluation at Stanford earlier this week, I was very anxious about it. On the drive over, I listened to the Spinraza mixed CD I had made and tried to gear myself up. It worked pretty well… after all, track #2, Eye of the Tiger, is always a solid choice.

Upon arrival to the Neuroscience Center, I only had time to inhale half of a tuna sandwich before they called me back to begin my evaluation. The next three SOLID hours passed in a blur of respiratory and physical therapists, nurses, research assistants, and stress sweat (good thing I put on extra deodorant!).

I wasn’t finished with one test before another person was hovering nearby to begin the next. I didn’t even have time to eat my homemade graham cracker and peanut butter sandwiches. (And you know how much I love peanut butter!)

The grueling afternoon reached its peak when the physical therapist asked me to open up one of those clear round Ziploc containers with the blue lid. Previously, I hadn’t even been able to attempt this task. Not even close. But, this time, I felt that I might be able to do it. I pulled, groaned, heaved, and nearly cried. But, after five minutes of desperately trying (and nearly doing it), I ran out of steam. I felt defeated. And pissed off. I told the PT, “I’m gonna buy one of these fucking containers and practice this at home. Next time, I will do this.

Yeah, I’m that kind of person.

While that moment was very disheartening, I’m happy to say that my results showed some improvements. I was able to lift a cup with a weight inside all the way up to my mouth. The strength in my arms and hands increased. And, lastly, but most awesomely, there’s a respiratory test that measures the diaphragm muscle. Before Spinraza, I got a 50. At this evaluation, I got a 72.

By the time all of this was done, I was exhausted. I wanted to curl up in bed with hot chocolate and watch TV forever. All the shows. Even the stupid ones on Bravo… Like The Real Housewives of Beverly Hills.

Thankfully, I get a little break now. I don’t have to head back to Stanford until next month for dose #6. I’m looking forward to the respite… and the break from all these tests.

Although, if I get bored, I’m sure there is a personality test online I can find. Like… If you were a dog, what breed would you be?

A border collie. Definitely.

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A Cure for Cold Feet

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It’s been a little over a month since my 5th injection (first maintenance dose) of Spinraza. As I was getting over a respiratory virus at the time of the injection, it took a little longer to feel the effects of this latest dose. But, about 10 days ago, I felt a little zing… the burst of feeling when my three SMN2 genes decide to be mini versions of The Hulk— turning from nerdy Mark Ruffalo into a green, CGI shirtless monster.

The muscles in my arms and torso were more responsive and almost… tingly. I often feel the same way if I drink too much red wine— only this time I didn’t have a purple-stained mouth as a memento.

I noticed new abilities. In the winter months, my feet and legs are always cold. So, when I get into bed at night, I have to use a heating pad to warm them up. To stop a person from scalding themselves or setting their bed on fire, my particular heating pad as an “auto-off” feature that activates after about 45 minutes. This is exceedingly annoying. While I’m appreciative of the consideration for my safety, it takes me longer than 45 minutes to warm up. So, I have to press the button on the cord to turn the heating pad back on again.

The past few years, I’ve had a hard time reaching the cord and pressing the button. But, last week, I noticed that I was able to grab the cord more easily, and to press the button more firmly. My icy toes were super stoked by this development.

I also grew hungry again — similar to what I felt at the beginning of my Spinraza journey. I wanted to eat. And I specifically wanted protein. Meat, beans, yogurt, eggs— and oh-so-much peanut butter. I would have slathered peanut butter on a steak if my inner foodie hadn’t cried out in horror, “You aren’t a kookie pregnant sidekick in a romantic comedy! No one wants to see you put Skippy on a filet mignon!

This burst of energy coincided with the arrival of the Winter Olympics. If you know me at all, you’d know that I’m a die-hard fan of the Olympics. It doesn’t matter if it’s the summer or the winter games, I love it all. I watch it ALL DAY. And this isn’t hyperbole. From dawn until dusk, that’s what I do. My life practically stops. I’m like Donald Trump with his Twitter account. Nothing else of any importance happens in my life.

So, this week, I’ve been glued to the TV. I’m not sure if it’s because of the endless hours staring at the LCD screen while listening to the Olympic music, or all the extra protein grams floating around in my body, but I’ve started having delusional thoughts.

What is wrong with that figure skater? Landing a quad jump can’t be that hard.

Every Norwegian baby comes out of their mother’s uterus wearing tiny skis.

I bet with just two or three more years of Spinraza, I could totally do Olympic Curling.

Now, this doesn’t make any sense. And it has no basis in reality. But, this doesn’t mean that I didn’t think it.

Perhaps it’s a good thing that the Olympics only come around every couple of years. These delusions aren’t good for me. Frankly, if they continue much longer, I might become convinced of something truly crazy. You know, like that North Korea is a magical place where a man named Kim Jong Un gives hot fudge sundaes to everyone that comes to visit.

Unfortunately (but, secretly, amazingly!), my friend Joahn sent me this Olympic scarf two days ago in the mail— which has only fueled my obsession. I wear it around the house while I watch the Olympics and eat hummus. If you look close enough, you might see crumbs on it.

I think I’m a lost cause.

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Winter Olympics (Flashback Edition)

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(This originally appeared in The Patterson Irrigator in February 2006 at the outset of the Torino Games. Even though 12 years have passed, I still feel the same excitement! ―E.)

Do you hear it? Here it comes- the grand trumpet crescendo that could only mean one thing? The Winter Olympics! You know the song I’m talking about. The one that invokes the desire to pump your fist in the air, stand up and cheer for athletes from obscure countries you have never heard of. The song that makes 250-pound hockey players dissolve into a blubbering pool of incoherence.

I love the Olympics. Everything about it. When, the Olympics are imminent, I get the Olympic Television Viewing Guide and schedule my life around it. Every sport suddenly becomes intriguing and engaging-even when I have no idea what is going on. For the Olympics, pushing a stone on ice isn’t merely playground fun in Saskatchewan, but an actual sport called Curling. Someone flinging their body head-first down an ice-chute at 80 miles an hour with only a small piece of cozy steel separating them from certain death, is aptly named “Skeleton” because the odds are that by the time they reach the finish line a skeleton is all that would be left.

And if that isn’t worth watching, I don’t know what is.

During those 16 days, I don’t miss a second of the coverage – and not just the athletic events. A favorite of mine is the inevitable story that chronicles that one underdog athlete whose struggles tug at the world’s heartstrings. Like a young cross-country skier from rural Moldova, son of a poor farmer tragically struck by lightning whilst tending his goats. During this television segment they introduce you to this young man and show footage of him peddling for change in front of a Budapest branch of McDonald’s to pay his own way to the Games because his own country is so corrupt that they do not have the resources to support him. By the end of the segment, he is crying and you are crying, too. You then find yourself getting up at 5 AM to watch him on a subordinate cable network in the preliminaries of his event, only to see him finish 31st, but with a bright, gleaming smile on his face. And that is what the Olympics are all about.

So, I suggest you tune in during these Torino Games. Whether you are a sports fan, or not, it is a shining example of the beauty of the human spirit. Oh, and a lot of the guys are really cute, too.

How To Survive A Shutdown

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I really wish this was an article about the government shutdown. It would be a lot more satisfying to spend the next 1200-odd words comparing members of Congress to the small, misshapen toadstools you find in the pond next to a toxic waste dump. I mean, they can’t expect us to praise them for failing to do their actual job, right? Last time I checked, if a person couldn’t demonstrate any real skill or talent, they’d get fired. (*This rule doesn’t apply to Kardashians, or other reality television stars— including Donald Trump.)

No, this isn’t about a government shutdown. Rather, this is about another shutdown of a far more frightening sort. The kind that makes your hair turn white and causes you to question your own mortality.

Yes, it’s a wheelchair shutdown.

I have one of those custom motorized wheelchairs— the kind with oodles of special features designed to maximize my comfort, independence and mobility. This thing has a personalized seating system, a reclining feature, and six tires that allow me to turn in a small enough space to fit at least 4 or 5 Olsen twins.

This is handy so that I can get into smaller areas like a bathroom or a pantry— where I can grab a box of Cheez-Its without waiting for someone to do it for me. Anything that makes it easier for me to grab food to stuff into my face is a huge, valued part of my life.

Anyway, these wheelchairs are designed specifically for each patient. From the dimensions of the seating system to the height off the ground— it’s all perfectly designed to me. In fact, even the NASA-inspired honeycomb seat cushion is created to fit my buttocks. It’s like a designer Gucci purse for my ass.

While this may sound extravagant to some, if you had to spend 12 hours a day sitting in one chair, it had better be amazing. Not some piece of shit you bought at a garage sale.

These specialized chairs are not interchangeable. If something goes wrong with my wheelchair, I’m majorly… well… fucked. I can’t borrow a wheelchair to use until mine gets fixed. There’s no Hertz Rent-A-Car for custom wheelchairs.

I think you can sense where I am going with this, right?

A couple of weeks ago, a fault message appeared on the screen of my joystick— “Right Motor Fault.” I had just gotten into my chair and the morning had been bright with promise. I had a caramel vanilla coffee waiting for me and a whole list of things planned for my day. It was going to be GREAT. The kind of day where I accomplished a lot of paperwork— yet still had time to make a pot of chicken noodle soup and watch two or three episodes of The Crown on Netflix. Yeah, it was supposed to be that kind of day.

But, upon seeing that error message on the screen, my mood immediately plummeted. It went from GREAT DAY to… JESUS, MY LIFE IS OVER.

You see, my chair would not move.

Heart pounding, my mind began to race. I turned off the power, let the wheelchair sit for a moment, and took 3 deep breaths so I wouldn’t hyperventilate. Then, I tried the chair again. This time, the motors activated and moved.

While you may think I was ecstatic, relieved, joyous— I decidedly was not. My relief was measured, cautious— for I knew that a motor fault error was a sign of impending doom. Like a meteor heading to Earth or a Black Friday sale at Best Buy. Someone—somewhere— was going to get screwed over by a 60’ LCD television for $180. And that person was me. It was inevitable.

This was the third set of motors I had installed on my wheelchair— even though the chair is less than seven years old. So, I knew all the signs. The cheap toys in a McDonald’s Happy Meal have a longer shelf life than my shitty motors. You’d think that a manufacturer of a beautifully designed wheelchair could manage to put well-engineered motors on it, too. But, no.

I guess we cripples can’t be choosers.

For the next couple of days, the specter of malfunction hung in the air— I knew the motor error would happen again, it was only a matter of time. So, I did what any organized, thoughtful person would do. I called my local wheelchair company to give them a heads-up that sometime in the next week, or so, my life was going to go down the toilet.

Then, I called my doctor to have him fax a prescription for “motorized wheelchair repair” to the aforementioned wheelchair company. Yes, the prescription really does say that. Who knew that prescriptions weren’t only for antibiotics and Lipitor… or, if you’re Bill Cosby, then Quaaludes?

These repair parts take time to come in, so I knew I needed to get the order in pronto. Stat. ¡Muy rápido!

I also knew that there was no way in hell that my current motors were going to last until their replacements arrived.

And, I was right. A few days later, after sporadic functionality, my chair stopped for good. ‘Right Motor Fault’ had won.

I had to be pushed around in my chair like a giant cart of bottled water at Costco. Or one of those pathetic drivers that runs out of gas and gets stranded on a freeway.

I couldn’t do anything.

My life stopped.

You know the old saying that sailors have a potty mouth? Well, even the shadiest pirate in 1790 had nothing on me at this point. I was a bundle of anxiety and curse words. I couldn’t say one sentence without at least two to three versions of the word ‘fuck’ in it. As a verb, adjective, adverb— I’m not sure there was a part of speech I didn’t use.

Then, once I had exhausted myself, I called the local wheelchair company in tears a couple of times. It wasn’t pretty.

Some old smart British dude once said, “Necessity is the mother of invention.” I think anger and rage also are, too. After a hunt in my garage, we found an old set of motors that had been leaky (but functional). So, we swapped the leaky right motor for my dead one and said a prayer to the Broken Wheelchair Gods.

It worked. And the chair continued to work for another week until the new motors arrived from the shitty motor factory in The-City-Shall-Not-Be-Named, Ohio.

But, that week was still pure torture. I’d get up in the morning, get into the chair, and I’d feel my heart rate go up by about 20 points before turning on the joystick. Each time the motor fault error didn’t appear felt like Christmas morning all over again. Not the Christmas morning of recent years (you know, as a boring adult), but the Christmas morning of childhood— when Santa brings you a big box of Legos or a My Little Pony with glittery, purple hair.

Yes, it really was that good.

Now that this current crisis is behind me, though, it means that I must start thinking about the process of getting a new wheelchair sometime soon. Given how precise and perfect the seat and chair must be, you can understand how I might approach this with dread.

I’m sure I’ll be writing about the process in the coming months… so, stay tuned.

Keep your fingers crossed that these motors don’t die first, though.

At the rate I’m going, it’s not looking promising…

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Boogers, Rainy Days & Surviving Dose #5

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It’s been well-documented that, like many with Spinal Muscular Atrophy, I’m a verifiable germaphobe. If a person could earn a certification in Cootie-Evasive-Techniques, I’d have a damn Class A license. The kind that people stand in line at the DMV for 3 hours to get.

Strike that. There’s no way in hell that I could go to the DMV and stand in line for three hours. I once heard someone cough up their gallbladder at the DMV. There are enough germs in those offices to keep the Centers for Disease Control busy for at least 6 or 7 months. Eww.

So, yeah.

Anyway, if you’ve been following my Spinraza journey, you’d know that the date for my first maintenance dose had been fast approaching. Given the importance of these spinal injections, and the set schedule of receiving them, it’s vital that nothing interfere with a dose.

Nothing.

Not even a plague of locusts, a doomsday asteroid or a Buy One Get One Free sale at the GAP.

Seriously. I don’t care how much I love those long-sleeve tees.

Given that we’re in the midst of a raging cold & flu season, I’d been paranoid that I would catch a bug prior to my Spinraza treatment. This fear paralyzed me for weeks. I avoided going out in public places, I tried limiting my interactions with family and friends. I basically became a hermit. Like the Unabomber. Only I didn’t try to build explosives out of fertilizer, chicken wire and cherry-flavored bubblegum. (Yes, I remember the show MacGyver.)

But, then, Christmas happened.

And, I really, really like Christmas.

You can probably guess what happened next.

Yup— I caught a respiratory virus.

The symptoms started about 10 days before my Spinraza injection. It wasn’t long before I had a river of fluid coming out of my nose. I’m sorry to be so graphic, but I have very little filter when it comes to these things.

After consuming my first box of Kleenex, I began to notice something. I felt a burst of joy— and not all of it was because of my low-grade fever.

You see, I was able to blow my nose harder than I had been able to do for a very, very long time. Like years. At least since the Bush Administration (the 2nd dude, not the 1st dude). I was able to blow so hard into the Kleenex that my ears actually popped.

This may not seem like a big deal, but before Spinraza, I couldn’t do this. Nasal drainage would simply slither down into my lungs, and I would struggle for weeks to get all the damn stuff out. This was a striking difference.

This development invigorated me. I wasn’t going to let this piece-of-shit virus get in the way of my Spinraza treatment. After all, I clearly needed more of the stuff so I could keep ejecting all those boogers out of my nose.

So, armed with antibiotics, breathing treatments, and a fuck-ton of garlic (seriously, I smelled SO bad), I made it through that week to Spinraza Day.

The early morning arrived and we were greeted with the first rainy day in, like, months. So much rain hit California that all the dirt decided to just turn into rivers and carry folks away. Not cool.

Luckily for me, even though the visibility was dodgy at times, we slowly made our way over to Stanford— safely. Upon arriving, I began to get nervous.

Could I sit still during the procedure without having to cough or blow my nose? After all, moving or twitching while two doctors inject a giant needle into your spinal fluid really doesn’t sound like a good idea. Just like buying sushi from the back of a van isn’t a good idea.

After checking-in and getting settled into the room, the nurse told me that the Spinraza Gods had blessed me once again. The same amazing duo that did my last procedure were back for the day. It felt like the rainy heavens had opened up and a damn Puccini opera was playing just for me.

YAAAASSSS!

In case you’re wondering why I was so excited, here’s the deal: there’s no way to know which doctors will be on-call that day. Stanford is a teaching hospital, so the rotations are random and unexpected. The time this procedure can take varies widely— depending upon the doctors. The longer the procedure takes, the more painful and arduous it becomes.

And these two doctors didn’t disappoint. They had the needle in so quickly, that I didn’t even have time to cough or blow my nose. It was glorious.

The rainstorm continued on the drive home, but I was so delirious with relief that I didn’t even mind. I was exhausted. Spent. Relieved. And, yes… slightly full of snot.

I get a little break before my injection, so I will enjoy these months— hopefully without viral invaders.

Wish me luck!

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