A Summer Recap

Today is the last day of August, which means it’s the last day of Spinal Muscular Atrophy Awareness Month, the last day I need to feel guilty about consuming pumpkin spice flavored products, and the last day of the eighth month of 2020— the year that seriously NEVER FUCKING ENDS.

As I write this, I’m sipping on a Starbucks pumpkin spice latte that was dropped off at my door by a mask-wearing friend— a drink that I re-heated before consuming with my own straw (because COVID, duh). My guilt about enjoying this autumnal beverage is now at a very low level. I love pumpkin spice and I’m not afraid to admit that considering I’m less than 24 hours away from turning the calendar into a month that ends in “-ber.”

Reflecting back on August, and the summer as a whole, I’m just glad to get this season behind me. It’s been long. It takes a lot of emotional bandwidth to be a very high-risk person during a global pandemic. To have to sequester yourself in your home for months at a time (with no end in sight) because the virus is so tricky, and not enough people in the nation, and in the community, are taking this risk seriously. To know that if you get COVID19, it will probably kill you. To know all of those things, but still try to keep a routine, and stay as safe as you can. It’s a lot to juggle.

Those of us with SMA are often expert jugglers, thankfully. It’s something that Spinal Muscular Atrophy Awareness Month should definitely highlight— which it really doesn’t. We can balance home, school, work, medical, and care attendant schedules so efficiently that often people don’t even see us doing it. We’re like ninjas. Crippled ninjas with great organizational skills. Yet, oddly, society often mistakenly thinks disabled people like me don’t have anything to do. That we sit at home all day watching reality television shows and FoxNews. Which is weird. If I wanted to do that, I’d just be President of the United States.

This August has also been hot. And smoky. Having a disability that impacts your respiratory system isn’t ideal when a giant wildfire is burning just a couple dozen miles from your house. The apocalyptic ash falling from the reddened sky is not a great visual for a year that has already turned into a real-life Hunger Games.

Thankfully, the summer did have some bright spots. I got my 13th Spinraza injection at the end of June— which was the first time I had really ventured out of my house since March. The injection went smoothly and it was comforting to be in a place where people weren’t whining about wearing masks like little assholes.

The summer brought more good news on the SMA front— the FDA approved another treatment for my condition. It’s called Evrysdi, which unfortunately sounds more like the name of a magical elf from Lord of the Rings than it does a medication. I suppose it really doesn’t matter what the name is… just as long as they don’t manufacture it in a tree. Evrysdi is an oral suspension drug taken daily, unlike Spinraza which is administered via intrathecal lumbar injection every 16 weeks.

I’m excited that there is now another option available for our SMA community. Just five years ago, I never would have imagined that this would be the case. I never would have thought that pharmaceutical researchers would have bothered to take the time, or use the resources, to develop one, let alone THREE treatments for SMA. The third being Zolgensma— a gene therapy for infants up to 2. (No offense to the Zolgensma people, but your drug name sounds like a StarTrek villain that wants to destroy the universe with a laser. #SorryNotSorry)

Note: I should probably add at this point that I am available to any pharmaceutical companies out there that need help coming up with names for your future SMA drugs. It might save you considerable headache if you just ask me first. Because I will make fun of the name. I just can’t help myself. Just like I can’t help myself from imagining that Spinraza was the name of a 1920’s showgirl that waved around a 6-foot feather boa.

Anyway, that’s it for now. I think it’s best to wrap this up because I’m getting down to the bottom of my pumpkin spice latte. And it will take all of my concentration to slurp up the last orangey bits of nutmeg swimming at the bottom.

So, with that said… Cheers to all of you. xoxo

C394D0D8-39B7-4552-934F-D5C462A11081[5616]

August Awareness and Lots of Stretchy Pants

August is known for many things. Even though most summer vacations are ending, it’s still a month when the heat is blistering and the yucky air has that palpable, tangible quality… like an dog’s fart. Also, schools open this month and all the pumpkin spice food products will begin to appear in stores.

If you think it’s too early for it, you aren’t alone. Even though I have a well-developed love for pumpkin spiced lattes, I don’t want to drink one while it’s still 100 degrees outside. I don’t care if there’s a chance that my sweat could smell like an autumnal wonderland. It’s still not worth it.

August is also Spinal Muscular Atrophy Awareness Month. The month that celebrates and brings awareness to the 1 in 10,000 babies born (including me!) with a really peculiar— and often deadly— genetic glitch called Spinal Muscular Atrophy (SMA). While the condition is rare, 1 in 50 people running around this earth are actually genetic carriers. But, since it’s a recessive condition, it takes two of these carriers getting together to produce a child with SMA. Even then, only 25% of children of those unions will even have the condition.

If you are confused by this scientific explanation of recessive genetics, you weren’t fortunate enough to have had the late Mr. Eugene Field as a biology teacher at Patterson High School. I feel sorry for you if you missed out on his amazing greatness. I guess you’ll have to make due with looking it up on Wikipedia, instead.

Anyway, until very recently, a diagnosis of SMA was practically a death sentence. While advancements in medical care have allowed many of us to beat the odds and thrive long into adulthood, there was really nothing science could do to treat the condition itself. But, that is changing. For the past year, I’ve been receiving a gene-splicing treatment called Spinraza that boosts my production of a protein that my body is lacking. I’ve written extensively about my treatment journey on this blog. I’m happy to report that more treatments for SMA are on the horizon in the coming years, too.

Awareness months, like this one for SMA, serve an important purpose. They garner attention to the cause and provide a catalyst for fundraising. Many other medical conditions and diseases have their own awareness months, too. I’m sure many of you have taken part in such events. And that’s fantastic. After all, these are vital tools for generating donations for research. But, while raising money for a “cure” is very important, we mustn’t forget that we have to also support those living with these conditions, too.

We have to make sure that there are services and infrastructures available to help those currently living and fighting these conditions— and their families. As someone on the other side of this, I must say that I occasionally cringe a little when I see so many fundraising efforts with simple, pithy titles about running and walking for cures. Sometimes I feel like they miss the point. After all, before we can get to the moment when someone could possibly be “cured,” there will be a lot more time spent with the person needing support and helpful resources.

Let’s be honest, from a practical point-of-view, a “Walk for a Cure” isn’t really going to do a patient much good if they don’t have a way to get to their doctor appointments. Let alone if they don’t have personal care assistance in their homes or even nutritious food on their table.

And, I don’t mean to be a killjoy, but you know that 5k Run for Cure you did last year? The one where you wore those new $85 running pants from Lululemon? Yeah, that run is probably not going to help that rural woman in Kansas afford the pharmacy copay on the anti-nausea pills that she needs during chemo.

I don’t mean to imply that these fundraising efforts are useless. Nothing could be further from the truth. These events and funds are incredibly important. So, keep on running in your crazy expensive stretchy pants. But, while you’re doing it, remember that there’s more that we can do.

Awareness means more than a “cure.” It’s about living in community— together. Helping each other. Whether it’s August, or any other month of the year.

Until then, Happy August… and happy running.

xoxo

All The Things That Sizzle

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!

IMG_5047[1503]

Summer, Flip Flops, and Tony Danza

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.