That 70’s Show

I’ve heard it said that fashion is cyclical. What was once in style is sure to become fashionable again— if you just wait long enough. While I’m not sure if that’s always the case, I think the cliché is more true than not.

I’ve noticed that over the last few years that the color palette of the 1970s seems to be creeping back in vogue. While I wasn’t alive during that decade, I’ve seen enough of my parents’ Technicolor photographs to verify this as accurate. You know those little square Kodak photos with rounded edges featuring your relatives with well-coiffed hair and bright floral outfits?

Yeah, those things.

I’ve been seeing lots of clothes and decor with those colors recently. And in places where, frankly, I’d prefer they weren’t. For example, a couple of years ago, I lamented a paint job that had been completed at my doctor’s office here in Patterson. When I told my doctor that the color of his building resembled the shade you’d find inside a baby’s diaper, he told me that he had no part in selecting that particular color palette. While this reassured me of his decision-making ability, that hasn’t stopped me from having to look at those colors each time I go for a flu shot.

I regret to say that this 1970s color invasion has claimed another victim. Today, I had a few errands, so I had to stop by the bank. I hadn’t been inside the bank in quite some time, so I was too busy saying hello to the nice ladies that work there to notice that the interior had undergone a redecoration. Once I was in line for the teller, I looked up and felt my nose instantly wrinkle in dislike.

My beloved bank had been painted a shade of yellow that, if seen in a toilet bowl, Dr. Oz warns us is a sure sign of dehydration.

I mulled on this revelation for a few minutes— looking around the walls as if expecting to feel differently about the color. Once it was my turn at the teller, I nearly asked her about it, but I stopped myself because I didn’t want to make the staff feel bad for having to work at a place that resembled a urinary tract infection.

However, since they are probably reading this column right now, it’s too late for me to worry about that at this point.

In conclusion, I’d like to add the following: I am not the most fashionable person. My sense of style is highly circumspect— just like my ability to walk, which is decidedly nonexistent. So, I’d take my fashion opinions with a hefty grain of salt— just as you would all the things that come out of Donald Trump’s mouth.

I’m sure these buildings and these 1970s colors are super chic— and I’m sure real, honest-to-goodness designers made the color choice. I’m also quite sure that many people must like them.

But, definitely not me.

A Breath of Fresh Air

For a person with Spinal Muscular Atrophy (SMA), like me, respiratory care is a key component to our well-being. The muscles closest to our spines are most effected— while the severity of muscle weakness lessens the further you move out to the tips of the extremities. Therefore, to say that the muscles that control my respiratory system are not great would be a vast understatement. It would be like saying that King Henry VIII only had a slight problem not killing his wives.

You know the satisfaction you get from hocking a really big loogie? Yeah, that’s not so easy for someone with SMA. I would love to easily hock a loogie when the occasion warrants. It’s definitely on my all-time wish list of things to do— which includes marrying George Clooney and traveling back in time to buy stock in Apple when they were still making computers in Steve Jobs’ crappy garage.

As a result of my muscle weakness, I also have scoliosis— which further impairs my respiratory function. In fact, my right lung is so squished that it really doesn’t do much. Despite that, I’m quite surprisingly fond of it anyway. It’s decorative and ornamental— like Melania Trump.

Therefore, keeping colds, viruses and flus at bay are essential. A minor cold that would just make you snuffly for a few days can knock me out for a week or two. And, the specter of pneumonia is always hovering over my shoulder— waiting, watching and listening. Just like Vladimir Putin.

Like many with SMA, I use a BiPAP respirator machine at night while I sleep. While I wear a mask similar to those with sleep apnea, this machine instead ebbs and flows with the rhythm of my breathing— like the tides of the ocean or a politician’s approval rating.

However, this machine is not as soothing as it sounds. It bears no resemblance to the nature-sound CDs that they used to sell at Bed, Bath & Beyond for $9.99. It took me over a year to get used to this damn thing. You know a hurricane? Imagine that in your face while you are trying to sleep. For nearly a year, I vacillated between wanting to throw in the towel and return the BiPAP to the doctor… to getting my dad to run over the f$&@ing machine with a John Deere tractor.

Along with my respiratory gadgets, like my BiPAP, I have an assortment of techniques that I’ve developed over the years to prevent infections:

STAY THE HELL AWAY FROM ANYONE I THINK MAY POTENTIALLY BE SICK. This policy is effective, but it causes me to turn into a veritable hermit from November to March… I can make Howard Hughes seem like a contender for Miss Congeniality.

IF I MUST BE AROUND SOMEONE SICK, I FORCE THEM TO WASH THEIR HANDS SO OFTEN THAT THE SKIN ON THEIR PALMS SHRIVELS UP AND FALLS OFF. I am not kidding about this. Sometimes I even make them wear a mask. While this may seem excessive, if you were me, you’d do the same. All’s fair in love, war, and microbes.

I GARGLE, CHEW AND DRINK EVERY FOLKLORIC REMEDY I CAN FIND ONLINE. Listerine mouthwash gargle? Yes. Apple cider vinegar? Duh, of course. Chew raw garlic cloves until your mouth gets blistered? Definitely. And do these work? I am not certain, but my anxiety likes to think they do.

A few days ago, I headed back to Stanford to see the pulmonary specialist and to finish up the loose ends of my Spinraza evaluation. While there, I saw a kiosk at the entrance of the neuroscience building. It had an automatic hand sanitizer dispenser, tissues, and masks— all in one display case. It was amazing. I felt like a kid on Christmas morning— if that kid was a raging hypochondriac. Since I couldn’t feasibly steal the whole display, like I wanted to do, I took a photo by it instead…

Here’s to a cootie-free Spring!

Driven To Laziness

As a species, I suspect we humans are getting lazier with each passing year. While I love technology as much as the next person— in fact, I probably love it more— I think it has caused our brains to shrivel into the size of a bar of soap. Not the regular kind, mind you, but the cheap travel-sized ones you buy at Dollar Tree.

We can’t be bothered to do the simplest things anymore— like memorize phone numbers and learn how to read a map. Instead, we have our smartphones do this for us. Last week, I used Waze, the navigational phone app, for the first time. It’s pretty great, but it takes away any need to think. All you have to do is trust the Waze system and blindly follow its directions. It’s like living in North Korea and watching their state television. If you do what they say without question, you won’t end up dead in a ditch outside Pyongyang.

Waze constantly updates the driving route based on current traffic conditions. It even gives live alerts for upcoming stalled vehicles, CHPs, road construction, and where to find the best tacos within a 2-mile radius. Okay, I might have made that last one up. But, if the Waze people are as smart as I think they are, they should do that, too.

Yet, I fear we rely on these navigational apps, like Waze, too much. In fact, we probably couldn’t even find our way home if they suddenly stopped functioning. I’m not kidding. There’s a good chance that many of us would end up lost— wandering for 40 years in the desert like Moses.

And, I don’t know about you, but I’m not built for that kind of hardship. I get burned within minutes of being in the sun and I freak-out at the sight of an insect. I would not have lasted long in the desert with the Israelites.

As a society, we are also good at trying to make things more convenient that really don’t need to be made any easier. At the store yesterday, I saw a bin of russet potatoes priced at 98 cents a pound. Next to those, were a small pile of russet potatoes that were individually wrapped in plastic. These potatoes were 98 cents, each, and were labeled “microwaveable potato.”

All potatoes are microwaveable. And they already have a handy feature called a “skin” that acts as a natural covering. Are we that lazy that we can’t wash a regular potato, poke some holes in it with a fork, and stick it in the microwave? Or, if we’re not crunched for time, rub some olive oil on it and bake it in the oven?

This makes me a little sad for all of us. If Moses were around, he’d probably stroke his beard and remark in dismay:

“Oy vey!”

Muddy Habits

As the old saying goes, “Some habits are hard to break.” I tend to think that all habits are hard to break— otherwise we wouldn’t call them habits. They’d just be things-we-do-sometimes. Or stuff-we-do-without-thinking-about-it. Or, if you’re President of the United States, it would be called Tweeting-At-3am.

I have many habits; in fact, my life is awash in routine. I find it calming to live life this way. To use another cliché, I am not the kind of person to “fly by the seat of my pants.” In fact, this would be a physical impossibility since the seat of my pants is firmly affixed to my wheelchair. Unless Superman swoops down from the heavens, I’m not flying anywhere. This is not to say that I would object to this concept, though. I wouldn’t— because Clark Kent is hot.

Not all my habits are as healthy or as useful. For example, when I get anxious, I pick at my fingernails. As a kid, I used to bite my fingernails, but when I learned how many germs lurk underneath, I was totally cured of that practice. So, now I pick at them, instead. It is still somewhat gross, but less disgusting. At least that is what I tell myself.

We all have habits, like these, that we shouldn’t do. Given the heaps of rain we’ve had this year in Patterson, I know one thing that no one should be foolish enough to try— and that’s driving a vehicle into, or through, the mud.

Our agricultural land is rich— and heavy. The nutrients and clay make the ground in the Patterson area some of the best soil in the world. But, this heaviness means that if the soil gets saturated, or even slightly wet, it will sink anything that tries to drive through it.

So, please, don’t do it. I’ve seen cars, trucks, vans, tractors, school buses, and most recently, a USPS mail truck, get stuck in Patterson’s mud. It took three men to free the poor, bedraggled mail truck from the sloppy mess.

Take a wrong turn? Decide to try to turn around off the side of a country road? Think again. You better hope you find a friendly farmer or a dude with a huge truck to pull your dumb self out of the mud.

If, by sheer luck, you manage to not get fully stuck, you will make such a mess getting out of the mud that the resulting crater will be seen from space. Russian cosmonauts on the International Space Station will be too busy laughing at you to help rig any more elections.

I’ll make you a deal. If you promise to not drive in the mud, I will try to stop picking my nails. While I can’t make any guarantees, I’ll do my best.

Maybe these habits won’t be that hard to break, after all.

A New Frontier

Santa Claus and his most bureaucratic and boring reindeer—the Food and Drug Administration—bestowed a gift to the Spinal Muscular Atrophy community this past Christmas by approving the first-ever treatment for the genetic condition. The gift comes in the form of a liquid that gets injected into the spine using a really long and pointy needle. While a chewable pill (a la Flintstone’s vitamins) would have been preferable, I suppose crippled beggars can’t be choosers.

It is estimated that only 1 in 10,000 babies born have Spinal Muscular Atrophy (SMA)— including me. It is the #1 genetic killer of children under two years of age. But, there are a minority of us that manage to live well into adulthood, although our physical strength does slowly deteriorate over time and our life expectancy is abbreviated, or truncated— like Trump’s hands.

One in 50 people are genetic carriers of the condition, but since it’s a recessive gene, it takes two copies of the faulty gene to actually cause SMA. Carriers have one bad gene copy and one regular copy. So, to have a kid with SMA, two carriers have to get together. Even then, there’s only a 25% chance their child will end up with SMA (also known as the fuzzy end of the genetic lollipop).

In those of us with the condition, our SMN1 protein coding genes (located on the 5th chromosome) are, in all honesty, kinda fucked up. This protein is essential in muscle development and maintenance. Without it, we must rely on alternate SMN2 genes as our only source of this essential protein. But, these alternate genes are notoriously wonky and unreliable— like the U.S. Congress.

This newly-approved treatment, Spinraza (nusinersen), is an antisense drug that aims to give the alternative SMN2 genes an extreme makeover— turning them from faulty backup genes into fully functioning supergenes. It’s like what would happen if you grab Charlie Sheen, take his drugs and hookers away, and force him into rehab by tying him to a hospital bed. Eventually it’s going to have an effect on him, right?

Well, that’s the idea of Spinraza. In theory, it’s a pretty great concept. And, in clinical trials with small kids, it’s had miraculous results. Kids that should have died, didn’t—and some showed improvement in muscle function and strength— achieving unexpected milestones.

The FDA approved this treatment for all ages and all types of Spinal Muscular Atrophy. Trial research focused on infants and young children, but treatment has been expanded to include teens and adults. This isn’t a cure-all, and it’s important to note that adults won’t see as dramatic results as the kids do. The data is still coming in, but this is a promising beginning.

This week, I head to the Stanford neuromuscular clinic to discuss Spinraza and see if it will be possible and feasible to get the treatment. Given that it must be periodically injected into the spinal fluid like an epidural, it won’t be an easy undertaking and the results are still uncertain.

I have dueling emotions about this whole thing. I’m optimistic and hopeful— but I don’t want to end up like this year’s Atlanta Falcons, who thought they were totally gonna win the Super Bowl until Tom Brady and his hot manliness came and stole it all away.

When you live your entire life with a disability, it becomes a part of you, shaping your identity, your view of the world, and your own place in it. I wouldn’t be “me” without it. Before this bombshell Spinraza news at Christmas, I never thought there would be a treatment for SMA— at least in my lifetime. I never even imagined it. So, it’s hard to fathom that it may be true.

I’m sure folks in 1969 felt the same way about the Moon Landing. You can’t imagine a man on the moon until you see Neil Armstrong awkwardly toddling around on its chalky surface— like an 18-month-old at Chuck E. Cheese.

We will see how things go. I’m quite nervous and anxious about it. But, if it is logistically feasible to pursue Spinraza, and if there is a chance that it can extend or improve my life, I’m going to give it a go.

Wish me luck… And, I’ll keep you posted.

XOXO

Rain, Pizzas, and Things That Annoy Me

We all have things that annoy us. The things that make us grumble and roll our eyes. Overpaid celebrities that complain about the hardships of being famous. Potato chip bags that are only 35% full when you buy them. People who don’t text.

If you are over 70, I will give you a pass on that last one. Otherwise, get with the program. And, for goodness sake, don’t leave a voicemail. Many of us consider voicemails to be, at best, an irritation and, at worst, a harbinger of doom— like a Sean Spicer press conference.

Yet, despite these examples, there are few things as trite as a Californian complaining about the weather. After all, we live in the land of sunshine, moderate temperatures and the Kardashians. What more could we possibly want? Plus, here in Patterson, we enjoy vistas of palm trees, lushly cultivated fields, and more pizza places than one town could conceivably need.

Seriously, though, we have a lot of pizza places. As a town, we must consume more pizza than I think. Otherwise, we wouldn’t have quite so many places to buy it, right? Our per-capita pepperoni usage must be— to borrow a word from Mr. Trump— huuuuge.

Anyway, given the drought plaguing our state, I’m thrilled to see all the rain. Truly. It’s been the focus of our hopes and prayers. However, when you’re used to sunshine and palm trees, if you don’t see the sun for the better part of a week, you start to feel blue.

The other morning, during a brief pocket of sunshine, I stopped in the middle of the Savemart parking lot, turned my face to the sky and let the warmth and Vitamin D soak into my face— along with UV rays that will eventually make me haggard and wrinkly.

I am fully aware that I sound privileged and whiny. I should be nothing but grateful for the rain we have received. Especially considering there are some places in South America’s Atacama Desert that haven’t had measurable rainfall in 500 years. That’s a long time. If you’re waiting for rain in the Atacama, you might have to live and die 7 or 8 times just to see it happen. And you thought waiting in line at the DMV was bad.

But, please forgive me for complaining. Sociologists would place me as an older member of the millennial generation. According to them, we millennials can’t help ourselves from exhibiting these behaviors. While I’m not certain I agree with this assessment, my hipster reward card does have enough stamps on it to qualify me for a free soy latte made with sustainably-grown coffee, organic vanilla and freshly-harvested unicorn tears.

Nonetheless, I will do my best to continue to be grateful for the rain. But, if that fails, I’ll just drown my sorrows in a pizza— or seven.

The Not-So-Super Bowl?

Where’s the pomp? Where’s the circumstance? Where’s the nachos?

Each year, the fervor around the Super Bowl reaches such a crescendo that by the week of the game, I am OVER it. The kind of OVER it I usually reserve for fads that have dragged on for just a little too long— like manbuns and Justin Bieber’s career.

However, am I the only one that has noticed that the nation’s excitement for the Super Bowl this year seems somewhat muted? Where’s the endless news coverage? Where are the beer commercials and the scantily-clad models eating dripping, fatty burgers that they would never, ever eat in “real life?”

This is not a complaint, mind you. After all, I like professional sports about as much as I like Hawaiian pizza. And, trust me, I do NOT like Hawaiian pizza. It’s gross and unnatural. Whoever thought of putting pineapple on a pizza should never get to eat pizza again. In any state, including Hawaii.

But, I digress.

Is the excitement for the Super Bowl as fervent as usual? Maybe it is and I’m just intentionally living under a rock. Sometimes I do that. Like that time 15 years ago when I refused to accept that the television show, Friends, was really ending? Or that time last week when I didn’t want to accept that Barack Obama wasn’t our president anymore?

There’s no way that football’s popularity is waning. After all, a testosterone-driven culture, like ours, doesn’t just change overnight. America doesn’t just wake up one day and say, “Fuck Football— I’m going to sit here and knit myself a sweater, instead.”

We aren’t that evolved… or that crafty.

Unfortunately.

#januarying

When the Romans weren’t busy building aqueducts and drinking lots of wine, they took time out to create a unifying calendar system. After all, it’s impossible to run an empire if everyone can’t agree on something as basic as what day is Wednesday. Can you imagine the chaos? It would’ve been like the U.S. Congress, only more Italian.

January is named after the Latin word for door— ianua. Since the month is the door into the new year, the Romans thought Ianuarius was a fitting name. While I’m not inclined to disagree with the dead guys that created the calendar, I must say that I don’t think that January is the most forgiving of months.

I have several reasons for this assessment. First of all, if you’re like me, your body is still recovering from the holiday food onslaught which seems to begin earlier each year. While I eagerly inhale a pumpkin spice muffin in October, by the end of December, my colon makes me drop the damn sugar cookie and back away from the cheese ball. And it really doesn’t take no for an answer. Just like Donald Trump.

I’m sure you feel that post-holiday sluggishness, too. That knot that forms in your stomach when you force down that last stuffed mushroom off the plate. But, you have to eat it, right? It looks lonely on the platter all by itself.

These cold and dreary January days don’t inspire feats of achievement, either. You may tell yourself to go to the gym, but you’re more likely to sit on your ass and watch The Bachelor while wearing the ugly Christmas pajamas your in-laws gave you. No need to hide it, I know you want to see how many girls Nick Viall can shag before the season is over.

Yes, January inspires laziness. Last week it was rainy and gloomy— like much of this month has been— and I decided to drink milk that was three days beyond its expiration date just so I could avoid going to the store. (Don’t worry, I did smell the milk first.)

But, for me, the biggest challenge of the month is of the cold and flu variety. I find it distressing to know that there are enough cooties floating around in January to fill the Hindenburg. It’s not unusual to find me shirking away from hugs and kisses during this time, and cleaning my cell phone with rubbing alcohol and a Q-Tip.

I realize I sound obsessive-compulsive. But, if you only had one functional lung, you’d be just as freaked out as I am. A little cold can quickly turn into pneumonia for the elderly, or disabled folks like me. So, think about that when you venture out into public when you are sick. You never know how far your germs may reach.

And on that uplifting note, have a happy January. But, for goodness sake, wash your hands!

The Surreality of 2016

As I sit at my keyboard, I try to think of a word to encapsulate the year 2016. I do my best thinking while consuming coffee or sugary dairy products, so I had decided to combine the two and make a homemade eggnog latte.

Before I continue, I’m fully aware that eggnog can be controversial. It’s something that people either love or really, really hate. Much like Hillary Clinton. There’s no middle ground. But I’m one of those people that adores eggnog. I don’t care if my cholesterol takes a 15-point hike during the holidays, I’m still gonna drink it.

Sipping my beverage, I find out that dictionary tycoon Merriam-Webster already announced its Word of the Year – “surreal.” An adjective, it describes something “marked by the intense irrational reality of a dream.” From happenings in politics, sports and culture, to local news around Patterson, it seems like an apt summation of 2016.

In national politics, we began the year with roughly 14 presidential candidates from the two major parties – among them former governors, U.S. senators and even a brain surgeon. Yet, of all those candidates, the eventual winner was a wealthy former reality television star with a questionable haircut.

The Olympic and Paralympic Games were the sport highlights of 2016. When the world descended upon Rio de Janeiro, we were treated to many feats of athletic prowess. Our local Paralympic hero Danielle Hansen earned a silver, while superstar Michael Phelps brought home 6 medals – including 5 golds. We haven’t seen that much gold pillaged out of South America since the 16th century.

If that wasn’t enough excitement, we also got to witness four-time Olympian Ryan Lochte’s performance as a drunken and idiotic man-boy destroying a Rio public bathroom. Good times.

Anyway, in terms of pop culture, I would like to discuss the dominance of superhero movies and why the hell we need so many television shows featuring zombies. I’m sorry to break it to you, but superheroes and zombies are fictional. There’s more of a chance of me leaping out of my wheelchair and dancing the Macarena than there is of anyone getting attacked by a zombie. I don’t care what you read on the internet.

Speaking of fictional things, this year we also had folks roaming around looking for cartoon Pokemon on their smartphones. While the popularity of the game has waned, the surreality of it has not.

Finally, in less time than it takes to find Pikachu, the new Flying J truck stop on Sperry Avenue was completed. I’m not sure what kind of super-fast wizard built that structure, but they were clearly in Slytherin House. That’s some dark magic happening right there. I wasn’t aware that something could be constructed that quickly. I think someone should refer those folks to Caltrans.

While 2016 may have been surreal, here’s hoping your new year is not. Wishing you a happy and healthy 2017!

Speechless Does It Right

ABC’s Speechless has arrived. Finally! Hollywood gets off its collagen-loving, perfectly coiffed ass and creates a network television show featuring a main character in a wheelchair. *gasp* If that wasn’t remarkable enough, the role is also played by a real honest-to-goodness disabled actor with cerebral palsy. *double gasp*

speechless
I should note that this isn’t the first attempt to be “inclusive.” Shows like Facts of Life, Life Goes On, and most recently, the Game of Thrones, have attempted it to varying degrees of success. (Peter Dinklage is our answer to Laurence Olivier) But, it shouldn’t be such a noteworthy achievement— considering that folks with disabilities make up such a large segment of the population. According to the U.S. Census, it is estimated that 19% of Americans live with some sort of disability. The umbrella of disability includes various sensory, motor and physical impairments, as well as, invisible disabilities— like learning challenges, autism spectrum conditions, and those with chronic mental health issues.

Yet, despite the large pool of disabled folks from which to draw, 95% of disabled characters in movies and television have been played by able-bodied actors. If you’re lucky and can manage to be an able-bodied white actor playing an “inspiring disabled character” in a movie (à la Dustin Hoffman, Eddie Redmayne, Al Pacino, Tom Hanks, etc.), the Academy can’t shower you with an Oscar fast enough. You might as well get the spot ready on your fireplace mantle right now. It won’t be long before a naked, golden— and slightly androgynous— man is perched on top.

Hollywood loves to be “inspired” by stories of heroic disabled people overcoming the odds to achieve remarkable feats— like breathing, eating, sleeping, and making able-bodied people feel better about themselves. Since most of the writers and directors are also able-bodied, these roles are often clichéd, one-dimensional and firmly keep the disabled character in the box labeled “inspiration.” Since 1989, 14 of the 27 Best Actor winners have played a character with some kind of disability. And of those 14, only Jamie Foxx was a person of color. #OscarsSoWhite #NoRealCripplesAllowed

And that does all of us, disabled and not, a great disservice. The disabled community is just as diverse, talented, and multi-faceted as society at-large. By portraying us in such a limited way, we are all losing out.

This is why I am encouraged by the arrival of ABC’s Speechless. It’s quirky, messy and slightly irreverent— with an authenticity and edge that you rarely see in Hollywood’s depictions of disability. We live in a society that spawned the Kardashians, so generally we aren’t allowed to see anything on television that hasn’t been nipped, spray-tanned, and plastered with Botox. So, Speechless is a refreshing change.

Hope the show keeps to its roots and holds on to its edge. If you want to watch a show with sugary sentimentality, you can just watch reruns of Full House.

(For the time being, you can stream the first episode here: http://abc.go.com/shows/speechless/episode-guide/season-01/1-series-premiere-p-i-pilot)