When you’ve got a rare and complex disability like Spinal Muscular Atrophy, time can be a very precious commodity— like diamonds, Labradoodle puppies, or a really good Wi-Fi signal. Since many everyday tasks can take us longer to complete (like showering, eating, and getting dressed), we tend to budget the rest of our time wisely and carefully. It’s an important skill to cultivate when you have a disability— otherwise you’d never get that term paper done, never balance your checkbook, and never have time to buy laundry detergent at the store.
Along with these everyday tasks, life with a complex disability comes with a lot of hidden bureaucratic demands that take up time. Between filling out on-going forms for Social Security and state services, to coordinating between various caregivers, doctors and therapists, to following up on medications and equipment, it’s a vortex of bureaucracy that keeps our lives in motion.
The time it can take to attend to this red tape is daunting. You know the hours it can take to prep and cook an entire Thanksgiving dinner? That’s a LOT of time, right? Imagine having to do that several times a month— even when you’re tired, sick, or just want to lay in bed and watch people get decapitated on Game of Thrones. That’s what it is often like for us. Plus, we don’t even get any leftover turkey out of the deal (which is totally lame because I love leftovers!).
Recently, I’ve had an extra bundle of fun (can you sense my sarcasm?) added to my usual list of bureaucracy. This task is at the top of my list of The Most Dreaded Of All Tasks. In fact, I daresay it is the veritable Mount Everest of tasks a cripple like me must climb. And I don’t say this lightly because I literally can’t climb anything at all.
It’s the Trying-To-Get-A-New-Power-Wheelchair-Vortex-Of-Hell.
Sure, it might sound exciting to get a new custom power wheelchair— to get a bright shiny new model with fancy features and leather upholstery that smells like a pretentious Italian shoe. But, a new wheelchair ain’t a Prius (even though it can cost nearly as much). They are also not so interchangeable as to be simply a matter of budget, taste and style.
As I’ve written on this blog before, these wheelchairs are built to our specific measurements and our medical need. They are designed to maximize independence and health. They are the very tool of life. And, when you have a complex disability like SMA, a small change in a wheelchair design or an error in a measurement for the seating can mean the difference between sitting comfortably to having a pressure sore on your buttocks. It can mean the difference between being able to drink a glass of water independently to not being able to reach the table at all. So, a lot can ride on these devices and making sure they are fit appropriately.
That’s a lot of stress— and a lot to add to our already-busy plate. So, it’s not surprising that we’re often not eager to get a new wheelchair when we’ve still got one that works well. But, as time goes on, it can become difficult to get parts and do repairs. Plus, I can’t speak for every disabled person, but I’d rather not go too long with a decrepit wheelchair that’s only held together by loose wiring, duct tape, and human stubbornness. (I think we’ve got enough of that in the White House).
So, every 7 or 8 years, I begin this process anew. Given the price tags on these custom wheelchairs, insurance companies don’t make it easy to qualify for coverage. There are many hoops that a person must jump through to get a power wheelchair. This is ironic because most of us that need these devices literally can’t jump at all.
First, my doctor must reestablish my need for a power wheelchair and reverify my disability. This is despite the fact that I’ve been this way for 37 years. It’s as if they fear that my genetic condition is going to suddenly disappear into thin air— like Lori Loughlin’s career.
Second, I must be seen by a special neuro physical therapist that will do a head-to-toe functional assessment— which must corroborate my doctor’s findings and include an analysis of whether my mental state is good enough to operate a wheelchair without driving myself off a cliff.
(Even though this process makes that very, very tempting.)
After that, my doctor has to verify the special neuro-physical therapist’s evaluation and that it’s in full agreement with his recommendations. He then sends it all to the DME company, which is in charge of fitting me for the new wheelchair and making sure it’s functional.
I’m fortunate that I have a long and positive relationship with my local DME (durable medical equipment) provider, Alan. He has been very accommodating and helpful to me over the years. He’s put up with my tears of frustration, my harassing phone calls, and my complaints about how ugly all their wheelchair paint color options actually are.
Insurance companies don’t make this process easy for DME providers, either. To be frank, they make it a giant pain in the ass, which has driven many DME companies out of business, which in turn makes it hard for disabled folks like me to get our rickety wheelchairs repaired or replaced.
It’s the red tape nightmare that just keeps on giving— like a bad case of shingles.
Anyway, Alan came over a few days ago and we came up with an initial plan for my new wheelchair. This plan basically consisted of me pleading desperately:
“Alan, make the new chair exactly the same as this chair. Seriously. Like not even a centimeter difference. Okay? You know the old fable, ‘The Princess & The Pea?’ I am the Princess. Trust me, I will know if there’s a pea under the mattress…..Umm, why are you laughing? I’m not kidding. I am the Princess. There will be no PEA in this WHEELCHAIR!”
Realizing I sounded slightly deranged, I coughed, and added:
“By the way, would you like a cup of coffee? Perhaps you might need it now.”
And that’s basically how that initial consult went.
It’s now up to Alan and his team to gather all his notes, the paperwork from my doctor, the assessment from physical therapist, and to combine it all together to submit for insurance approval. Every “T” must be crossed, and every “i” must be dotted. If it isn’t, I will have to begin the process again— the idea of which makes me want to cry.
Here’s hoping the duct tape will hold out until then, though.
Wish me luck — And stay tuned for updates!
Summer is now officially here. For the next three-odd months, we’ll have plenty of time for backyard barbecues, fresh locally-grown produce, and oodles of opportunities to get a sunburn. I am one of the lucky ones that gets burned by simply thinking about the sun. For example, just reading an article in National Geographic about solar radiation is enough for me to get a second-degree burn. I wish this wasn’t just hyperbole.
While my pasty, sensitive skin is a major reason why I dislike the summer, the heat we experience in Patterson is the primary source of my disdain. It gets crazy-hot here. And, for someone in a wheelchair like me, it’s just not pleasant. Frankly, it majorly blows. My black-seated electric wheelchair is like a damn beacon for heat— the summer sizzle zeroes down upon me like a missile. You know, like one of those nuclear warheads that Kim Jong Un promises to get rid of but everyone knows that he never will? Yeah, just like that.
The wheelchair also traps heat—once it enters the perimeter of my seat, it just doesn’t fucking leave. It’s like living in one of those Insta-Pot pressure cookers that everyone has been raving about for months. If I’m in my wheelchair out in 100° weather, it won’t be long before my ass turns into a perfectly-cooked pork tenderloin. I wish this was an exaggeration, too.
Despite all my negativity about this season (of which I have a lot, as you can tell!), there are some redeeming things about this time of year. First of all, I like that cold and flu bugs go into hibernation in the summer. As I’m a germaphobe, this is a big relief. I fear getting sick the same way that some people fear a giant asteroid hitting the Earth at 25,000 miles an hour. And, no, I’m not being dramatic. If you’ve been following my writing at all, you shouldn’t be surprised by this statement. So, YAY to summer! It’s definitely wonderful that at this time of year I don’t have to worry about catching the flu while shopping for laundry detergent. It makes the idea of having clean clothes way more enticing.
While this is a major reason I tolerate the heat of the summer, the biggest redeeming factor of this season? All the yummy local produce that becomes available. We are so fortunate to live in one of the most fertile agricultural regions in the world. Our markets burst with wonderful things to eat. So, take advantage of it. Buy locally-grown produce when you can. Visit farmer’s markets. Enjoy all the things that truly put Patterson, and this region, on the map.
It will make these long summer days all the more tolerable.
So, stay cool, stay healthy, and happy summer!
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…
I’m not going to sugar-coat it, roll it in cinnamon, or top it with frosting. I’m going to be honest. The kind of honest that you usually only see from small children or really elderly relatives— but, rarely see from politicians or men that run around grabbing women by the ass.
Okay, here goes… The year 2017 was… just… straight-up weird. So weird that it made me wonder if we had somehow veered off into a parallel universe. I know you might think I sound loony. But, stick with me for a moment.
Stephen Hawking, the super-genius, theoretical physicist, writes a lot about this concept. He says that black holes could be portals to other countless universes— very much like our own world, but, just a little different. So, there could be infinite planet Earths… countless other cities of Patterson… and many versions of me.
This is a troubling thought. I wonder if all versions of me are as scared of spiders? Or, like pumpkin spice lattes? Or like to drive so fast in their wheelchairs?
I also wonder if all the versions of Patterson have quite as many palm trees? Or, as many pizza places? Because I don’t know if it’s possible for a town to have as many locations to buy pizza as we do right now.
Anyway, what if the Earth was swallowed by a giant, unknown black hole, and we slipped into another dimension? Maybe that would explain why 2017 was so weird… and it would also explain why Patterson suddenly seems to want so many marijuana dispensaries.
Between the record-breaking hurricanes, deadly earthquakes, and massive fires, it could be argued that Mother Nature didn’t care much for 2017, either. Nonetheless, we mustn’t forget the victims of these disasters— many organizations are on the ground now helping those that are affected. Donate time or money, if you can. Don’t be a Scrooge.
It’s important to note that not everyone has had a difficult year, though. North Korea’s Kim Jong Un spent the year honing his missile launching and nuclear skills. After scattering hardware all over the Sea of Japan and threatening the West with death and destruction, he still found time to attack a village of Hobbits with a potato cannon. So, all in all, it was a pretty solid year for dictators. Just ask Vladimir Putin.
We also found out that Americans can become obsessed with solar eclipses— so much so that they will call-in sick to work, and drive hundreds of miles to watch the shrinking sun through a peephole in a modified box of Honey Nut Cheerios. I suspect that many of these same people spent the prior year, 2016, chasing cartoon Pokémon on their smartphones.
So, I suppose this is an improvement.
Scientists made several discoveries this year, too. A new species of orangutan, a close primate cousin to humans, was recently discovered hiding in an isolated forest in Indonesia. It’s been a century since a new species of great ape has been found. So, this is an incredibly exciting— and surprising— development. After all, who knew that Donald Trump wouldn’t be the only new orange-colored primate to burst into the international scene this year?
As we say goodbye to 2017, here’s hoping that the year to come will be a healthy, safe and happy one.
Just watch out for those black holes.
Ugh. As I sit here typing this, the thermometer is registering 95°F. It’s barely May and only 4 days ago I still had flannel sheets on my bed. And now I’m sweating and my jeans are sticking to my ass. Why couldn’t the summer heat arrive gently? Like the slow bloom of a flower… or water dribbling down a clogged drain. Why, instead, does it have to be so blunt and nasty? Like a bull, or Steve Bannon, in a china shop?
I HATE SUMMER! There, I said it. I don’t like the heat, the sun, or even the clothes. I much prefer the styles of the cooler months— my cabinet full of scarves is a testament to that. Plus, I can’t wear most summer clothes, like shorts, because I sunburn in mere minutes. This isn’t dramatic hyperbole. One time I got a sunburned in the time it took to go from the front doors of the shopping mall to my handicapped parking space— which was IN THE FRONT. Yes, I really am that white.
Now that we’re on the subject of summer attire, I also don’t understand flip-flops. They seem unnatural and highly dangerous. Why would you want to walk around on something so unstable? It’s a shoe that’s barely attached to your body. You are one thin plastic strap away from disaster. It’s a good thing that I can’t walk, because if I had to wear flip-flops in the summer, it wouldn’t end well for me. First I’d get a bad sunburn on the top of my foot, then I’d fall and break my nose on the nearest object, like a ficus plant. It would be like an episode of The Three Stooges, only less funny and less Jewish.
If all that weren’t enough, the slapping sound flip-flops make is also decidedly unappealing. Do you intentionally want to sound like a walrus flapping their hands together? Because, I hate to be the one to say it, but you really do sound like that.
Anyway, thankfully I have air conditioning to help me during these trying times. It’s currently humming in a soothing way that reminds me of those noise-canceling machines that they used to sell at Bed, Bath & Beyond next to the display of soda-making kits that NO one ever buys. The same ones that have been on sale since 2005. If you are thinking of buying one, you might want to reconsider; I’m sure those flavored syrup pods expired back during the days when Bush Jr. lived in the White House.
Those were simpler times, though, weren’t they? We didn’t have a president with orange skin and hair… and Michael Jackson and Whitney Houston were still alive— so we could listen to their music without the sad pang of nostalgia. Those also were the days before the word taxi had been replaced by Uber. Before long the nerdy folks at Oxford will just drop that word from their dictionary entirely… and a hundred years from now little children won’t even know what a taxi is, let alone that it was yellow and usually driven by strange foreign men with accents— or Tony Danza.
It’s only May, though, so I better get used to this heat. If you need me, you can find me sitting in front of the fan, grumbling… and not wearing flip-flops.