Month: July 2018
Happy Spinrazaversary to Me!
StandardOne year ago, today, I had my very first spinal injection of Spinraza— the first-ever FDA approved treatment for my disability, Spinal Muscular Atrophy (SMA). Life was a lot different one year ago. First of all, I was worth a hell of a lot less money at that point. My spinal fluid didn’t have 6 vials of super-sonic, super-expensive Spinraza floating around inside of it. You know, the way the miniaturized Dennis Quaid floated through Martin Short’s body in the 80s movie, Innerspace? One year ago, I was a body that was decidedly pre-bionic. Dennis Quaid’s tiny spaceship would not fly out of my nose if I sneezed. Now, however, I wouldn’t be surprised if my boogers had diamonds inside. Yes, I’m that pricey now.
As I have shared here previously, it was a long, hard-fought battle to gain access to this drug, and I’m lucky to have a spectacular medical team at Stanford Neuroscience that helped to make this possible. I wish I could say that all adults with SMA have such outstanding advocates for care as I do. But, we still have a long way to go to make this current treatment, and all the upcoming treatments coming down the pharmaceutical pipeline, available and accessible to all those living with my rare, genetic condition.
But, my Spinraza journey didn’t end at the point of that lumbar puncture needle one year ago today. Rather, it really had just begun. Given the complexities of getting the long needle through my crooked, and fused anatomy, each injection since that July day has been a tiny battle of wills. A mental and physical game where I prepare like a seasoned warrior. A soldier that knows that the upcoming battle could be a smooth victory just as easily as it could be a giant shit show. You know, like a Trump/Putin press conference?
However, these hardships (and there have been many!) have been worth it. In the 365 days since that magic vial’s liquid have begun to do their work, I have had measurable improvements. Given that this neuromuscular disability is progressive, even merely slowing or halting the natural deterioration is a victory. To have improvements, like I have seen, is more than I could have hoped to achieve. Especially as an adult with SMA. I had never thought I’d live to see a treatment that could help me. It’s hard to mentally process… to put your brain around. You know, just like it’s hard to process pickle-flavored ice cream, self-driving cars, and why the hell we Americans can’t figure out the metric system.
I look forward to what the future holds for my Spinraza journey, yet, I eagerly anticipate what medical science has in-store for those of us, of all ages, with SMA. I’ve heard that there are more treatments currently in the trial and research phase. Perhaps, one day, I will have additional cause to celebrate.
Until then, if I sneeze, please excuse the diamonds.
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We Are Better Than This
Standard(originally appeared today in my newspaper column in The Patterson Irrigator)
I have a story to share. A story that I sincerely wish I could tell you had not happened in this town. In the diverse community of Patterson that I love so very much. But, this story is worth telling as a reminder of the danger of extremes— of intolerance. The dangers of harsh words, snap judgments and, at the core, racism.
This story wasn’t mine to tell, but I asked permission from the young woman at its heart— who is a long-time and very dear friend. And she agreed to let me share this with you all. She knew, just as I do, that this is an important lesson— especially during these politically divisive times. For, while we know things like this happen in other parts of the country (just a glance at the news confirms that!), we can’t pretend that something like this can’t (and doesn’t) happen in Patterson.
My friend is one of those extraordinary friends— the kind that are always there for you when times are tough. Like me, she’s a graduate of Patterson High School and a homegrown California girl. We both have an affinity for Netflix, tacos and perfectly-made caramel macchiatos. She’s much more altruistic than I am, however. Instead of writing jokes about world dictators or all the other lame things I write about, she has, instead, worked hard through college and hospital rotations to become a licensed nurse. She’s a doer… and I’m just, well, a person with an overused vocabulary. The world needs more people like her— that’s for certain.
On a recent Patterson day, she was walking up the sidewalk to the City Hall to pay her family’s utility bill. Suddenly, a middle-aged Caucasian man spotted her and, out of the blue, began assaulting her with a barrage of hateful words. While most of the phrases he used are not suitable for print in this newspaper, here is the edited version: “Hey wetback! Yeah… Go back to Mexico. You, and all the others, need to go back to Mexico. Ha! I bet you can’t even understand what I’m saying right now.”
When my friend told me the next day what had happened, right in our little town, I got so angry that I felt blood begin to pump in my ears. But, once again, proving that she is a far greater person than I would have been, she didn’t engage with her harasser. While I would have tried to run him over with my wheelchair, she instead ignored him and went about her business. Her decision to ignore was the wise and prudent choice. But, it was a choice that she should have never had to make. It was an experience that no one should have to endure.
But, she told me that the most upsetting part wasn’t that it had happened— she knew that things like that happened to other people every day. Rather, it was that it happened in her own hometown. She admits that perhaps it was naive, but she had never imagined that something like that could happen here in Patterson. I think I must be a little naive, too, because I never thought it would, either.
But, it did. The question is, as a society and as a community, what are we going to do about it? For a person to shout such abuse in public, it means that he feels validated enough to do so. He feels like it’s just, and right, for him to say such vile things. And, in the weeks, months, and years before taking such an action against an innocent young woman, he’d been building up to that point. He’d been listening to pundits on the radio, or television. He’d been making comments to friends, coworkers, and neighbors. Comments that perhaps met with agreement, or disagreement, even if it was only silently or passively so.
But, such attitudes don’t exist in a vacuum. They don’t sprout out from the ground like a wild turnip. Society nurtures them. Allows them to take root and grow. So, we must all take responsibility for our role in that.
We must be better. Do better.
It all begins with us.
![IMG_5110[1665]](https://elizabetteunplugged.com/wp-content/uploads/2018/07/img_51101665.jpg?w=214&h=341)