A Stanford Valentine

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On a typical Valentine’s Day, one might expect a day of romantic gestures— giant teddy bears, Papa Murphy’s heart-shaped pizzas, and overpriced jewelry from the neighborhood mall. Since my boyfriend is of the fictional variety, I don’t have to worry about pretending to like the “chocolate diamond” necklace he bought for me at Zales.

This week, my Valentine’s Day definitely wasn’t a typical one— I got to spend the most romantic day of the year at the Stanford Neuroscience Building for my Spinraza evaluation. Upon arriving, we proceeded to not be able to find any handicapped parking in the garage. This is the irony of going to a place where a good number of the patients are crippled just like you. Handicapped parking becomes a valued and scarce commodity— like Stradivarius violins, raw uranium ore, and politicians with integrity.

The first item on the agenda was a lumbar spine CT-scan. Spinraza has to be administered into the spinal fluid, so the neuromuscular doctors need to verify that there is a pathway available in the lumbar region for their mega-pointy needle. For folks like me who have scoliosis and spinal rod fusions as a result of our Spinal Muscular Atrophy (SMA), this isn’t an easy task. You know Pin The Tail On The Donkey? Imagine playing that, blindfolded, with a donkey that has anatomy that closely resembles the tornado from Wizard of Oz. Try to pin the tail on that donkey’s ass and you might hit Glinda the Good Witch instead.

Anyway, after my lumbar CT-scan, I went to see the team of specialists. After taking my vitals, the first thing they wanted to do was find out my weight. This was not as simple as it sounds.

If Elizabette’s wheelchair weighs X pounds without her sitting in it, and it weighs Y pounds when she is sitting in it, how much does Elizabette weigh?

This problem would have been easy if I had known my wheelchair’s weight without me sitting it in— aka, the tare weight. Which, of course, I didn’t. So, we had to do it the hard way. But, I am now pleased to report that the tare weight of my wheelchair is 377 pounds— this does not include me and my backpack full of random stuff. That’s super heavy. Therefore, I’d like to apologize, in advance, if I ever accidentally run over your foot. Or, even purposefully— which I might do if you’ve pissed me off enough.

Anyway, after that was completed, I met with two neurologists, a few nurses, a physical therapist, a respiratory therapist, a blood-draw technician and a circus juggler. (Okay, I might have made that last one up.)

Everyone seemed professional and I was encouraged by their thoroughness. Although, the physical therapist and respiratory therapist were kinda bossy— in a good way that brings out my competitive nature. If anything is turned into a game or a test of skill, I will win, goddamnit.

They tested my pulmonary functions and my physical strength using an assortment of cool gadgets. These will be the benchmarks they will use to measure potential progress moving forward.

All in all, it was a tremendously long, but encouraging, day. The preliminary lumbar CT-scan radiology report indicates that I have a potential open spot on my L5 vertebrae, which is a promising sign. I also learned that the radiologist thinks I have a really big bladder. This is not surprising. I can comfortably go quite a long time without peeing. I suspect that my bladder can currently hold more water than the Oroville Dam.

I’m grateful to the family that joined me on the trip to Stanford and fed me peanut butter and jelly sandwiches. An influx of sugar makes anything more tolerable. If everything falls into place, I’ll try to get Spinraza. It’s still a long journey ahead and I have lots of hoops to jump (or wheel) through, but I’m on my way!

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The Day After: A Digital Reckoning

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The frenzy of a newsfeed. The thrill of an iPhone screen full of notifications. Getting the news AS IT HAPPENS. Arguing with a random stranger online over an issue that both of you probably don’t know enough about as you should.

In this world of digital immediacy, we live life in a moment, within a tweet and a text message. This adrenaline rush is intoxicating, addictive and damn fun. I mean REALLY fun. Who doesn’t want to feel like the entire world is within the small coveted device that we can’t seem to pry from our hands?

But, like all addictions, we seem to need more and more. We click “share” without much thought, without verifying the truth of the statements we send out into the world in our name. And in this digital world, it can be hard to separate fact from fiction. But, we don’t seem to care. If we believe it to be true, than it is. Facts and accountability have no place here.

Some say the media is to blame, and that may be partly true. But, the media can’t sell their product to an unwilling audience. And we’ve all been oh-so willing. From Huffington Post to Breitbart… from FoxNews to MSNBC, they have all been guilty of giving the biased viewpoints that we long to hear. This is not because they are necessarily trying to sway us, but because they want to please us— their customers. As the old adage goes, “The customer is always right.” And they want us coming back for more… and more.

But, we have seemed to be okay with that. Frankly, in the last months, we’ve relished in it. Reveled in it. Every opinion can be justified with a “fact” that we find on our little miracle devices. Making us feel vindicated. Making us feel heard.

But, really, who is hearing us? The select few with which we choose to associate? The like-minded folks and trolls that haunt the comments section of the specific sites where we collect our news? Who’s to blame for the memes that make us laugh in glee to cover the meanness and spite that we try to hide from view?

In this new world, we all do this— Republican and Democrat, Liberal and Conservative. And, for the sake of all of us, it needs to stop. This horrendous election season has taught us that… taught us what can happen when these habits run amok. These hellish months are the result of our own collective hubris. The idea that our reality is the only reality.

So, what are we going to do about it? It starts with each of us. We have a choice to make. Can we disconnect from the opiate, digital stew that dulls our senses and makes it harder to see what is true… what is fair… what is just?

Can we do that?

Can we?