Some Mondays can exist on their own cosmic plane. An alternate reality where weird stuff happens more frequently than other days of the week. It’s a day for hangovers, short tempers, and trying to get all the things done that you should have done over the weekend — if you hadn’t been rewatching the latest season of The Crown while still wearing your pajamas. By the way, Princess Margaret would have definitely approved of pajama-wearing after 2pm. Her sister, the Queen, however? Not so much.
Earlier this week, I had one of those Mondays. It was the day of my 6th injection of Spinraza and I went into it primed, pumped, and ready. But, the signs presented fairly early on that day that things were gonna be just a little bit weird— like a Kanye West interview.
The drive to Stanford is always arduous— and traffic-ridden. With the number of cars and trucks that are trying to push through the freeways from the Central Valley to the Bay Area, it’s like trying to pass a rump roast through a shower drain.
It always amazes me that so many folks make this long commute on a daily basis. It boggles my mind. I’d have a serious mental breakdown if I had to do that. The kind that would make me unable to enjoy the mythical 4,000 square-foot suburban house that I could maybe afford, but never have time to live in.
On this particular Monday, the traffic, surprisingly, wasn’t too bad— meaning that it was only moderately heinous. You know, like rice cakes or gender reveal parties for unborn babies. It was tolerable, but not something you’d voluntarily go out and do.
Anyway, despite the flowing traffic, the mood of the drivers was decidedly grim. And, frequently, downright hostile. Dozens of horns were honked. Many cars were aggressively passed. And a slew of motorcycles were cutting off cars at each opportunity. There was more tension on that freeway than in the last episode of The Bachelor.
A case of the Mondays was in full-form.
We arrived to the Neuroscience building earlier than expected (shockingly!!), and the nurses took me back to the room to prepare for my lumbar puncture. It wasn’t long before one of the doctors came to go over the last details of the procedure. Given that Stanford is a teaching facility, they work in pairs— an attending (teacher) with a fellow (student). There’s also no way of knowing which doctors will be on duty on a particular day, either.
Having a lumbar puncture is always a tricky business, but when you have complex anatomy, like me, it’s even more precise. I lay on my side and they use a fluoroscopy machine (like an x-ray) to monitor their progress as they move the five-inch needle around my spinal rods and into the small space in my vertebrae to access my spinal fluid— where the Spinraza must be injected. It’s like a playing a game of darts in a really sterile bar— only the target is me, and I’m awake and not a cork board.
Given this complexity, there are lots of factors that can determine how quickly and easily the procedure will go. The experience of the doctor. My position on the table. And, frankly, a good amount of luck.
The fellow (student) worked the needle into position in my spine and all seemed okay… but, the spinal fluid wouldn’t drip out the needle (how you verify that you are actually in the right spot).
Remember when we talked about the Mondays? Yeah, well, it wasn’t finished with me, yet.
The fellow readjusted the needle, back and forth. In and out. Making small centimeter-sized adjustments to try to yield the spinal fluid. But, it WOULDN’T FUCKING COME OUT.
Meanwhile, with each move of the needle, tiny nerve pains were boomeranging around my back and hip. They even tried tilting the table so that gravity might help the fluid to dribble out.
But, no, it didn’t work. Isaac Newton’s Law of Gravity was a piece of shit. I don’t care what they teach us in physics class— it doesn’t always work. Especially in the alternate reality that is a Monday.
After this went on for a while, the attending doctor (the teacher), pushed aside the fellow (the student) and proceeded to give it a go himself. Frankly, if Isaac Newton had been in the procedure room in that moment, the attending doctor might have kicked him in his 17th century balls. A few minutes later, though, he was finally able to get it done. Gravity be damned.
I was so relieved. And so were the sore muscles in my shoulder, and the nerves in my hip and back. I daresay even both doctors were relieved.
About an hour later, I was back in my wheelchair and ready to load up in the car for the ride home. Just as we were opening the doors to my van, another vehicle with a disabled placard began aggressively revving their engine behind us, trying to hurry us into leaving the parking spot so they could take it themselves. It reminded me of all those angry folks on the road from earlier in the morning.
Then, a few seconds later, the driver rudely waved at us— as if hand gestures were like spells from Harry Potter that could magically make me load up into my van, strap me (and my wheelchair) securely inside, all in five seconds.
My friend, Edith, that had accompanied me on the trip, raised an eyebrow as I drove my wheelchair up my van’s ramp, “I think we need to make this car-loading-up thing take much longer than usual. What do you think?”
I grinned, “Oh, yes.”
With the passing of Barbara Bush earlier this week, the news has been awash with memorials of her life and the presidency of her husband, George H.W. Bush— or, as I not-so-secretly call him, “Old Man Bush.” I realize that calling the 41st president by that moniker sounds ageist and mean, but given we had another president with LIKE EXACTLY THE SAME NAME, how else am I to differentiate the two?? I suppose, in some ways, though, it’s better to be “Old Man Bush” than it is “Little Bush” — which is what I called his son.
Anyway, in all honestly, my recollection of the years when George & Barbara Bush lived in the White House are decidedly hazy. I was only around 8 at the time, so anything that wasn’t in the shape of a Lego really didn’t interest me. But, nonetheless, I do have vague flashbacks of Barbara with her shock of white hair and her bright suits the color of a Troll doll’s hair. Seriously, those suits were bright.
I bet she even glowed in the dark.
You know… it’s easy to imagine George and Barbara playing hide-and-seek in the White House. ‘Cause, if anyone were to do it, it would probably be those two lovebirds.
“Bar, ready or not, here I come!” A few minutes of scrambling later, and then you’d hear George exclaim, “Come here, you saucy minx, I can see you glowing all the way from the Lincoln Bedroom!”
Anyway, I do remember Barbara’s literacy programs in my elementary school, but as I was a certifiable bookworm already, Barbara was truly preachin’ to the choir with me. I don’t think it was possible for me to read any more books— after all, I had already made my parents broke by forcing them to buy me the entire series of The Babysitters Club. (I wish I was kidding.)
But, despite my early ambivalence to politics, I do remember one landmark moment during the presidency of Old Man Bush (sorry, I still can’t seem to help myself). It was that moment in 1990 when George signed The Americans with Disabilities Act (ADA) into law.
I didn’t know it at the time, but that legislation had been a long time in coming. Many disabled activists had endured many trials and hardships to make that moment possible. Even though I was young, I could still feel the importance of that revolutionary document. On the news that day, I saw folks in wheelchairs at the White House sitting next to the president. I had never seen that before. They were people like me. (Although, in all honesty, they were mostly male and super white. At the time, of course, diversity was an unnecessary concept, not an actual reality. You know, like women CEOs and food allergies.)
The ADA would nonetheless go on to shape the civil rights movement for disabled people all over the world. It was a giant leap forward for accessibility, inclusion and equal-access. But, as amazing as the legislation was, it’s still an imperfect document. It has loopholes, exclusions, and falls short in various areas that could further improve the lives of people like me. So, I can say without hesitation that we still have a long way to go. There are still many barriers that must fall.
Despite this, there has been a movement recently to try to erode away some of the protections of the ADA. Earlier this year, the House of Representatives passed H.R. 620, a bill misleadingly named “ADA Education and Reform Act of 2017.” By removing the reasons for businesses to proactively comply with the ADA, H.R. 620 attempts to chip away at the rights of a disabled person to fight for the removal of barriers to access. It makes it more difficult, and nearly impossible in some cases, for an aggrieved disabled person to seek accommodation. Nonetheless, the shitty bill has moved on to the Senate, where it sits right now.
With the passing of Barbara Bush, it’s made me reflect on that moment when her husband first signed the ADA. Often more vocally progressive than her husband, I’m sure that moment in 1990 brought Barbara much pride.
Now, all these years later, we shouldn’t be looking to scale back the ADA, we should be working to expand it. Time marches forward, after all.
Unless you can’t walk. Because then you might not even be able to get in the building.
(Old Man Bush signing the ADA in 1990. Photo via Associated Press)
I’m a sucker for a historical tale— as long as it’s full of drama, intrigue and at least one insane king. If the story also has two or three loony royals, that’s even better. Especially if one is suffering from a questionable mental disease that could have been easily prevented if his parents hadn’t been cousins or he hadn’t shagged every woman in sight.
I have a decided preference for true stories— because, most often, the facts are way more interesting than anything anyone could make up. (Err— perhaps someone should tell this to Donald Trump.)
History is full of stories that are, frankly, unbelievable. If you think Game of Thrones is exciting and awesome, you should pick up a book about the Plantagenet family. Those folks were CRAY. Loco en la cabeza. The kind of crazy where one minute they are achieving remarkable victories for England, and the next they are trying to secretly (or not so secretly) murder all their younger brothers before they had a chance to grow hair on their testicles.
Yeah, I’m not kidding.
If you think George R.R. Martin conjured all of his Game of Thrones storylines from his own mind, you don’t know enough about the Lancasters and Yorks. During their Wars of the Roses, the English crown exchanged hands so many times that you’d think it was a fucking game of Hot Potato. The kind you play on rainy days at school during recess. Well, if “recess” were a battle that you had to wear sixty pounds of armor, that is.
I like reading books or watching documentaries about intense periods of history, like these. In fact, I just spent the weekend reading a book by Dan Jones, my favorite medieval historian. Some people like to go to the beach on their days off, I like to read about revolutions, multi-generational family feuds and all the kings named Henry.
Anyway, as I turned the last page after Henry Tudor had emerged triumphant over one of history’s favorite villains, Richard III, I started thinking about poor Richard. Sure, he did lots of bad things… but, frankly, so did many other people at the time. Yet, somehow, in the years since, he has emerged as the great supervillain. The Lex Luthor of the Middle Ages. A grasping Voldemort that would lock young Harry and Ron in a tower.
But, what really separates Richard III from all the other medieval baddies? Of which we have many to choose from? He wasn’t the only one to knock off a relative, or two. He wasn’t the only one to steal a crown that wasn’t his. He wasn’t the only one to turn into a paranoid egomaniac.
But, Richard III did have one distinguishing feature. He had an orthopedic disability that caused him to have a serious case of scoliosis. This made him excellent villain material. It’s not surprising that William Shakespeare took that particular trait and ran all the way to the bank with it. It’s super easy to demonize a dude with a crooked and hunched back.
As a person with a disability (and also, scoliosis!), I’m left wondering… if Richard III hadn’t had this medical condition, would history’s recollection of him have been different? Would his contemporaries (and those in the decades following), have had such an easy time shoving him into the “EVIL” category?
At the time, those with disabilities weren’t looked upon kindly. Abnormalities, birth defects and other medical conditions were often seen as a “Curse from God” and punishment for inherent evilness and other wrongdoings. These prejudices persisted for much of human history, and can even sometimes be witnessed today (as much as I wish I could say otherwise).
The disability of Richard III, without question, influenced others’ perception of him. It’s easy to imagine a man that has been “cursed by God” to be capable of really nasty things. Especially in the medieval world where understandings of medicine, the human body, and religion were best left unexplored— and unquestioned. Even William Shakespeare penned these words for old Richard III, leaving us no doubt about how we should view the man’s nature: “I am determined to prove a villain.”
I can say one thing for certain. I’m really glad that I was not born during this crazy period. And that’s not just due to all the beheadings, the wars, and the general miserableness. You see, a girl with a medical condition, like Spinal Muscular Atrophy, would definitely not have lasted for long.
In addition to all the other preventable diseases that could kill me, all it would take is one tiny sniff of Black Plague and I would have been dropped in a patch of dirt outside the churchyard. You know, where the unblessed and cursed are left to rot? After all, sanctified ground within the churchyard is reserved for way better folks— like those that put the decapitated heads of their enemies on spikes outside the village gates.
In truth, I bet my medieval dirt nap would have been met with some relief. “Yay, the cursed girl is gone! Time to get back to sharpening my axe collection.”
Ahh, history. What tangled tales you weave!
If you want to read more of my stuff, subscribe in the sidebar!
“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.
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.
(photo via NASA)
For more updates, don’t forget to subscribe to my blog in the sidebar!
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.
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.”
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.
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.