Acknowledging the Failures of Your Body

A beautiful coastline with "A Chance to Live Longer TM" superimposed over it — Ironically, the TM on this kills me

A lot of people are ill-equipped for the inevitable failure of their body, never fully prepared for the moment they go from mogwai to gremlin. I don’t want to say aging/decaying is easy for those of us born gremlins, but I certainly think it’s easier. This is more a societal malfunction than a personal one, but it’s still a problem.

I think the most telling symptom is the way we look for reasons when something goes wrong. They’re easy enough to find—I didn’t exercise enough, ate the wrong foods, stayed up too late, ate the wrong foods after midnight, etc—but often the reason your body fails is the same reason it occasionally thrives: you were born. Hidden deep in the code that makes you “you” are hundreds if not thousands of self destruct mechanisms that can be accidentally activated or will trip themselves in time. It’s part of the game. That doesn’t mean it’s a fun game. It’s more like a Choose Your Own Adventure book that can only end poorly and that’s if someone doesn’t take the book from you first.

As with a lot of our mass perceptions, a lot of it comes down to what we’re being sold. Look at the truly impressive American canon of prescription drug ads. They’re full of shiny people living shiny lives while simple line drawings and animations carry the heavy burden of disease.

Here’s a random ad I pulled for a lung cancer treatment called Opdivo. I have no personal connection to this drug and this is not a judgement on it’s effectiveness; it’s merely an easily accessible example. Sweeping vistas, slow motion reunions, a waterfall that cures cancer and the actual slogan of “Who Wouldn’t Want a Chance to Live Longer”, followed by a fast-as-legally-allowed speed read of impressive side effects that may end up being reasons you don’t want a chance to live longer. But that’s not the point.

The point is the popular treatment of the banal horrors that fill our lives never makes eye contact with realistic and walks right past clinical as a slow motion drone shot captures it’s loving embrace with irresponsibly sanitized. Ironically, these squeaky clean conditions probably helped set the stage for COVID to run absolutely wild. Why take precautions when your body is clearly incapable of complete collapse? Unfortunately, one’s current state of survival does not crown them as one of the fittest.

My body is mostly defined by good looks and abject failure, but even the things marketed to me try to be coy.

In my life, I’ve owned more than one vibrating vest designed to shake my lungs so that mucus comes out. The first of these came with a very funny training video where a girl is talking on the phone with her friends while The Vest^TM lightly shakes her bronchial tree. Talking on the phone while using that vest was definitely possible if you were okay with sounding like the wildest motherfucker at the helicopter derby, but it’s not advisable. You know what the video never mentioned? Mucus. Never shown, never heard. The actual recommended way to use the vest was to shake for a few minutes, try to cough some shit up, then get back to the shaking. But that video would have you think you’ll be playing Dream Date and making Jiffy Pop.

I can’t speak for every disease, but cystic fibrosis is often horrifying and/or disgusting. There’s not a lot of money in talking about that—I’ve got the traffic numbers to prove it—but the only thing we gain in the denial of the human body is anxiety and the ability for companies to get fat by selling us a dream they’ve made us think is the baseline: freedom from your shitty body. Unspoken and unseen. I understand why commercials don’t look like they’re in the Hellraiser extended universe, but I don’t have to be happy about it.

Even the stuff that does highlight the more human side of existence tends to take a very “them, not you” approach to things, like we cleaned up the freak show and made it palatable for modern audiences. How many people are watching Dr. Pimple Popper as a cautionary tale? How many people believe cysts are a thing that could never happen to them?

Seriously, by keeping the worst unsaid, I think it isolates people in their suffering. The failure of our bodies should bring us together. We should fight them when they suck, thank them when they work and prepare for the day when we are not what we used to be.

That Doesn’t Work for Me, Brother

Hulk Hogan is one of the most consequential figures of our time, being both patient zero for the affliction known as Hulkamania and knocking over the dominos of our media landscape by sleeping with his friend’s wife. And while he’s definitely said some stuff that you shouldn’t repeat, if you’re not familiar with wrestling, you may have missed one of the most beautiful sentences ever uttered:

That doesn’t work for me, brother.

To be fair, as far as I can tell there are no recorded instances of him saying it, it’s all first or second hand accounts. What we know is that when he wrestled for World Championship Wrestling in the 90s, he had full creative control of his character. So when he was given something to do that he didn’t like, he didn’t actually have to do it. Did he actually have to utter those magic words? I choose to live in a world where he did.

I have a somewhat prickly reputation. Part of that is health related and part of that is because I’m an asshole. But when I was younger, I was at war with that piece of myself and I ended up in a few situations that I could have avoided by being less agreeable, say being in a car with someone who smokes or going to the beach. COVID and age changed things for me. I’m less willing to take risks and make concessions on certain things, because that doesn’t work for me, brother. It’s beautiful. Gentle, yet forceful. Playful, but firm.

And if they won’t take that for answer, hit the leg drop for the 1,2,3.

Things I Like

I liked the Barbie movie a lot more than I thought I would and maybe a little more than I think I should.

I can’t pretend to be high minded in my entertainment: I grew up in Reagan’s America, so most of the beloved shows of my youth were de-regulated toy commercials. Still, these tastes are unpredictable: I like The Lego Movie—though not enough to have seen the sequel—and I’ve seen every live action film with Batman in it, but I’m cold on both G.I. Joe and Transformers. I’m conflicted about commerce as art, even if I often find myself rolling around in it. It’s the American way after all.

The first few minutes of the Barbie movie weren’t hitting me right, but as it catches steam, it started to click. I found it tremendously entertaining, such that even days later my brain hasn’t really picked at it to get to the heart of it. I’m not entirely sure how I feel about that, but I may even watch it again to find out.

However, I do think it’s funny on a meta-level that Ryan Gosling comes dangerously close to stealing the entire movie.

A Definitive Ranking of Prescription Drugs

This is most of what I need to travel, minus a cooler bag and a 22 pound vest.

For reasons simultaneously mundane and complicated, I find myself traveling a lot. The distance affords me both time for reflection and a tremendous amount of opportunities to forget the various pills and accessories that keep me alive. Although I have a 94.2% hit rate, that ain’t 100%, so here’s a list of the things I could forget, tiered by how much it sucks when I forget them

Tier 1 – Over the Counter

Pepcid (acid reducer), Claritin (allergies), Flonase (allergies and nasal polyps), Vitamins

The penalty for forgetting any of these is taking $10 to Wal-Mart and buying enough to get through the weekend. I have them listed from most important to least important above, with Pepcid topping the list because it’s actually a drug one of my other drugs takes. Also, I listed them with brand names to save everyone some Googling, but I’ll be goddamned if I’m paying double for top of the line over the counter drugs.

I have to take special vitamins as well, which technically have to be mail ordered, but I can get by for a few days on some whack ass Centrums if I really have to.

Tier 2 – Quality of Life Prescriptions

Albuterol (fast acting bronchodilator), Stiolto (long acting bronchodilator), Zithromax (maintenance antibiotic), Losartan/Hydrochlorothiazide (blood pressure reducer), Inhaled Saline Solution (mucus seasoner)

I can go a couple of days without these, but depending on the weather and my health, they may not be very fun days. Albuterol is the opening act of my daily treatments, both in that it’s the one I do first and it opens up my airways. Stiolto is also a bronchodilator, but acts long term as opposed to the quick hit of the albuterol. As such, it takes a couple of days without Stiolto before I start to think “oh yeah, I guess that was doing something”. Losartan/Hydrochlorothiazide is for my blood pressure. I haven’t missed it yet, but I imagine it’s not pleasant. Zithromax is a prescription I imagine a lot of you out there have sampled, but I take it every Monday/Wednesday/Friday to either inhibit bacteria growth or make superbugs, I don’t know. Either way, they keep giving ‘em and I keep taking ‘em. The saline solution goes in a nebulizer to salt up my mucus for easy removal. I can miss about a day of that before things start to feel a little tight.

With the exception of the Stiolto, I could afford to fill these prescriptions without insurance, though I wouldn’t be happy about it.

Tier 3 – Accessories

Monarch Vest and Power Supply (mucus shaker), Nebulizer, Air Compressor

The Monarch Vest is pretty much a $10,000 Brookstone massager. It’s supposed to shake my bronchial tree and loosen up the mucus so I can cough it out. It works fine, though we all pretend it works great because it’s more convenient than the previous version of The Vest. I rarely forget the vest, but I have forgotten the proprietary power supply. It has a battery, but I have to use it twice a day for 30 minutes at a time and the battery will only last about 3 and a half sessions. After that it’s just a 22 pound fashion statement. Luckily, it’s function can be replicated by getting someone to drum on my ribcage for a little bit.

The nebulizer and air compressor are necessary for both the saline I talked about above and another important inhaled drug that’s coming up. You’d think one would be able to stroll up to the drug store and purchase either one of these on a whim, but it’s actually surprisingly complicated, as both need a prescription. There are some websites out there that will sell you both on the honor system, but I’m not going to out any of them here. But alas, even express delivery isn’t super helpful if you need the parts right fucking now. In light of these developments, I own a backup compressor and many backup nebulizers.

Tier 4 – Diabetes Drugs and Supplies

Continuous Glucose Monitor (blood sugar meter), Novolog (short acting insulin), Basaglar (long acting insulin), Pen Needles (stabbing)

Novolog is a short acting insulin, so I need that to eat anything with carbs and basaglar is a long acting insulin, which essentially acts as a support for the Novolog. If I forget either one of these I can just stop eating carbs or try to cut a deal with a local diabetic, which is somehow easier than getting refills at a pharmacy I don’t usually use. The pen needles are used to get the insulin into my body. Apparently these are available over the counter now, which is nice, because while I can stretch the supply, I really do love a fresh needle.

The continuous glucose monitor holds the title of “thing I’m most likely to forget” because I have to change it every 10 days and it’s somehow always a surprise to me when it expires. I do have an over the counter finger prick meter I bought for those times when my calendar calculations are a little off, but if there’s one thing 10 straight days of pure blood glucose data has taught me, it’s that a one time reading is essentially useless. I’d love to sit here and tell you I’m willing to prick my finger every half hour to keep up, but it wouldn’t be long before I switched to an all Slim Jim diet or used the “well, I’m still upright” model of glucose monitoring. Neither comes recommended.

Tier 5 – The “Gotta Eat” Tier

ZenPep (digestive enzymes)

This one gets it’s own tier because without my digestive enzymes, eating is just the process of chewing things up so they’re easier to pass an hour later. That’s an exaggeration; it’s actually about 24 hours before things literally go south. It always seems these wings of wax are going to hold out, then the sun rises and I start blowing my hole out.

A few years back my stepsister got married in Vegas. It was a big family trip, so we had a big family meal at the airport Hooters the night before we left. I forgot my enzymes back in the hotel and didn’t feel like asking a van full of people to turn around. I figured I could just take them afterwards and be fine. And I was, right up until I was flop sweating on a 5 hour plane ride. I held out for about three hours, but when I finally did my business, it looked like someone shot the bowl with a paintball gun. For the next 4 days, everything I ate flew right out, regardless of enzyme consumption.

However, the “joy” of digestive enzymes is that enough people take them that after some negotiation, it’s possible to get someone to call in a few days worth to a pharmacy. It’s not cheap—they’re about $15 a pill and I take 6 per meal—but at least it’s possible. There are generic enzymes too, but those are just as good as taking nothing, even if the last time I had them they came in a blood red capsule that was stylish if not effective.

Also, these are the pills that I have to take Pepcid for, otherwise my stomach acid tears them up too fast.

Tier 6 – The Turn Around Tier

Pulmozyme (inhaled mucus thinner), Trikafta (protein modulator)

This is the turn around tier, because if I forget one of these, I’m just going back home.

Pulmozyme is an inhaled medication that splits the DNA strands of my mucus and thins it out a bit, making it all easier to bring up and pass. It has a special place in my heart because for years a one month supply was the most expensive thing I’d ever bought. The full story is in my book, but my state insurance lapsed, I couldn’t get pulmozyme, started coughing up blood after a week, and had to convince the pharmacist to let me charge it for $1,900. I paid $400 more than the insurance company because my negotiation skills are poor, I guess.

However, as nostalgic as I am for those blood spewing days of making it rain at the pharmacy, things have changed since then. For one, spending 4 figures on a drug is no longer a novel experience. Every January I get to start off the new year with a cool $1,400 copay before embarking on a journey of $4k in total out of pocket expenses. And my insurance is actually one of the better plans!

But there’s also a new top drug in town. Trikafta moves and unfolds the misplaced and messy cystic fibrosis transmembrane conductance regulator protein in my cells which helps water and salt move more normally through the cell. That means my mucus can no longer caulk a bathtub. I’m also at—or slightly above, depending on your perspective—a healthy weight for the first time in my adult life. It’s not a cure and it hasn’t lessened the number of prescriptions I’m on, but it has made CF a lot easier to manage.

Trikafta is a tremendous life changing achievement. I need to reiterate it’s not a cure as, in the words of Warren Zevon, “My Shit’s Fucked Up” and I’ve had CF long enough that a full cure is probably out of reach for me. But it has absolutely changed my life and the lives of many others for the better in a lot of ways. That makes it difficult to talk shit on it. Or at least it seems to make it difficult for most people. I’m a natural born hater. I was born to pass mucus and talk shit, and thanks to Trikafta, I’m all out of mucus.

Trikafta is fucking expensive. I’m sure it was expensive to develop, even with the $40 million that Vertex Pharmaceuticals (then known as Aurora Biosciences) got from the Cystic Fibrosis Foundation, but here is a study that estimates the manufacturing costs at less than $6,000. Looking at the last Vertex quarterly report, we can see they made a cool $915m in profit in the second quarter of the year alone. The current yearly price that shows up on my pharmacy receipts is $306,816, which makes me about .003% of their quarterly revenue before costs. Neat!

It used to be less, but they actually upped the list price after a couple of years on the market, which is quite a move if you can pull it off. I, of course, do not pay that price directly, my copays come out to about $720 a year for it. Funny enough, while I was writing this, I got a call from their patient assistance program and they were finally able to get my pharmacy to use a copay assistance card, which is something I’ve been trying to do for years. I have a lot of negative opinions about the impact of high drug prices, but at least Vertex’s customer service is tremendous. First time in my life I’ve felt like a high roller.

But that’s not the point of this. The point of this is that I forgot my Trikafta this weekend and had to turn my ass around. It comes in 7 day packs and after 3 years and a few missed doses, my 7 day cycle now starts on Saturday, so if I’m packing on a Friday night, I have to remember to throw the new pack in my medicine bag. Given that one day’s dose would be just a little less than if I bought 2 PS5s, I can’t solve this one by swiping the plastic. Of course, most pharmacies don’t stock it anyway and even if they did, it’s not like they’d break up a pack and sell me a couple of looseys. Or maybe they would, I don’t know. It seems like an expensive pain in the ass, so I just turned around.

Of the various wounds inflicted by the current prescription market, changing travel plans is a mere paper cut compared to the gaping wound of the 18 million Americans that can’t afford their prescribed medications but like a paper cut, it sure is annoying.

Things I Like

Speaking of genetic mutations, I loved the new Ninja Turtles movie. I was a big fan when I was younger, though it’s not necessarily something that’s stuck with me as I’ve gotten older, even if I did manage to buy all the Ninja Turtles as Universal Monsters figures that came out last year and I play more TMNT video games than the average 40 year old (maybe?). In any case, I think TMNT: Mutant Mayhem is about as good of a franchise update as I’ve ever seen, making some smart story adjustments and presenting a mostly fresh version of a thing that’s older than the intended audience.

Threatening the Appliances

I rewatched Ringu this week and found myself a little underwhelmed by it. The first time I saw it was on a bootleg DVD I got off eBay back in 2000. Sending a money order to a random person across the country is a fitting introduction for the film, but honestly, it wasn’t really a hit for me back then either, aside from the part where—spoiler alert—Sadako crawls out of the tv.

Ringu (1998) - IMDb — The DVD I had was a bad inkjet print of this cover

I remember that being genuinely chilling, like it was possible that she could come out of my tv too. But on the rewatch, I felt nothing. Part of that is probably the upgrade in resolution, but I think a lot of it is just that I’m not scared of my tv.

That’s interesting to me because televisions are probably the most dangerous they’ve ever been. I ran a network-level ad blocker for a short period and was truly shocked by how many times the two Roku TVs were calling home. Those things were reaching out to home base like 10,000+ times per week. Who knows what kind of shit they were talking about me?

I don’t like it, but it’s not scary.

I’m surrounded by items that know way too much about me and my finances and I guess I’m just numb to it. Or maybe it’s that there’s one crucial difference between the analog technology of yesteryear and the digital technology of today:

I will beat this TVs ass.

If you were born after 2000 or so, you may not have any memories of a tv you couldn’t take in a fight. The 32 inch Magnavox I watched that bootleg DVD of Ringu on? For most of my ownership of it, it weighed more than me. I could easily see some dingy-ass well broad climbing out of that, no problem. Good luck trying to climb out of this LG OLED, it’s not anchored to shit. I don’t care what the manual recommends.

So yeah, the elaborately sculpted wooden console television we had when I was a kid would be an absolute problem if it were haunted. You need at least two people and possibly a dolly to even shift that damn thing, let alone move it any actual distance. I still remember the feeling of turning it on, how the cathode ray would hum and the air would crackle with electricity. It was essentially a ticking time bomb we tricked into showing us pictures. A ghost gets ahold of that and we just have to move. Ghost haunts my fucking iPad and guess what? You’re haunting the neighbors roof now.

Cameras are different now too. I’m confident that I could win a fight with most of the non-medical imaging devices I’ve seen in my life, so it isn’t a matter of might. But if I took a picture of someone and their face appeared to be contorted in an inhuman manner, I wouldn’t be scared, I’d be pissed. The amount of money I paid for this goddamn phone and it starts doing that shit right when it’s out of the warranty phase? Again, it’s on the neighbor’s roof.

There’s a certain magic to analog technology. Maybe that’s because of the age I was when I was surrounded by it, but there’s a nebulous quality to static or the weird scrambled negative images you’d get when you tried to watch a channel you didn’t have. Analog technology held mysteries, while digital technology holds mostly paywalls. It’s scary in an “Eastern European man got your credit card number and keeps booking flights to Toronto” way, but not in a “ghost is about to crawl out of it” way.

I will, however, offer this brief rebuttal to my own editorial: I once worked with a guy who showed me a printout of a realtor’s listing and said “do you see what I see?”. What I saw was a smeary inkjet printout of a poorly compressed jpeg of someone’s living room. What he saw was the ghostly outline of Osiris, Egyptian Lord of the Underworld, who had somehow harnessed the power of compression artifacts to announce himself. This guy repeatedly emailed the realtor with messages like “I see what you’re trying to do” and “you can’t fool me”, so maybe digital technology can be scary in the right hands.

Things I Like

I’m conflicted by how much I enjoy music streaming services. I don’t have any particular lot for physical media–it’s mostly a means to an end for me–but I grew up on the idea that I had to directly support the artists I enjoyed, because there weren’t a ton of us listening. Now music that required numerous monetary leaps of faith for me to get at the turn of the century is available at the touch of a finger. From a consumer standpoint it’s great, but the only people making money on it are guys who don’t need it. Still, the fact that it’s easier than ever to go through a band’s discography has made my convictions weak, so I recently dug through the career of Japanese metal legends Sigh.

Back in the bulletin board days of the internet, I saw someone describe their Hail, Horror, Hail album as “a cross between black metal and music from a soap opera”. That sounded like a phenomenal combination to me—and it is—but it took me a few years to actually track it down.

Band leader Mirai Kawashima has an unparalleled ability to make music that sounds disjointed on first listen and makes perfect sense on the third or fourth round. Part of that is the tremendous palette of sounds the band uses and part of it is just good old fashioned song craft. Unfortunately that means their discography is spread over a few different labels with various availability throughout the years, which means there were at least 3 Sigh albums I heard for the first time last week. For the record, I still think Imaginary Sonicscapes is the best, but it’s also the first one I heard back at the turn of the century, so my judgment might be suspect. But check out “Corpsecry – Angelfall” and if it works for you, dive in.

And ironically enough, Hail, Horror, Hail isn’t available on Apple Music and I apparently never ripped the copy I had (I remember the version I had having 99 tracks, but I might have made that up), so I bought it on Bandcamp from what may or may not be an official source. Turns out the old ways aren’t completely dead.

The Mall: It’s Only Up from Here!

I read a report this week about how the mall was “coming back, baby” and I’d like to take a moment to refute that.

worm eye view of escalator — Photo by Dan Gold on Unsplash

I went to the mall last week, a thing I used to love but now fills me with unimaginable sadness. This mall was recently sold, which would lead one to believe that it was about to transform into a beautiful butterfly. Instead, there’s a tattoo parlor, carnival food in the food court and at least 3 kids on BMX bicycles. I used to beg to go to this place.

It was the first place I ever had Taco Bell, which was a magical sit down restaurant somehow always covered in shredded lettuce, but never quite dirty. I drank many a Dr Pepper out of a plastic Batman cup there. The 1989 Batman movie transformed my brain in a number of ways, but the most unexpected has to be my love of the cinnamon twist, which debuted in a fun paper pouch with a Batman logo on them. To this day, purchasing cinnamon twists is the only type of gambling I partake in. For just $2, you get to see if you won a dessert.

I purchased a grilled cheese dipping taco from what now passes as the mall Taco Bell. I was impressed when the girl taking my order managed to do so without stopping her TikTok scroll and even more impressed that they actually had an up-to-date menu. I had gotten a grilled cheese dipping taco at another local Taco Bell and it was an absolute mess, so I wanted to try another location before writing the whole thing off (judging new fast food items is very important to me). Though I wasn’t impressed with the extra $1.50 tacked on as mall premium pricing, the taco came out quick, napalm hot and not overly messy. They run a tight, if sinking, ship there.

While I was there, I figured I should wander. The former Record Town is still standing, now as an FYE. I did not go in because there is no one else in there and somehow FYE corporate still thinks human interaction is something people want from the mall. Visiting an FYE is essentially like visiting an old friend now on life support, surrounded by Funko Pops that are 1-2 months away from becoming the nicest items in the dumpster. No, I do not think I’ll be getting your loyalty card. Look at your business. There’s no loyalty here. Loyalty is dead.

And for the record, my current estimate is that Funko Pops represent about 30% of mall inventory.

Having not satisfied my hunger with a single taco. I also got some Buffalo Wild Wings to go. The wings were small and dry, and there was not enough flavor on them to really impact the taste, but the dust of the Desert Heat Wings did somehow manage to make my fingers itch for about 24 hours.

I would have checked in on the Spirit Halloween currently possessing the old H&M, but the escalator was roped off and walking halfway across the mall to access the staircase seemed like a lot of work at the time. One used to be able to use the escalator in Sears to ascend, but Sears has become a spirit in status, if not name. Still, I was able to see that the H&M left a fancy vinyl “Goodbye and Thank You!” decal over one of it’s windows, which is a step up from the 8.5”x11” piece of paper on the plywood boarding up the Macy’s that says “Hey, maybe try the internet?”

I thought the big draw of the mall was a Christmas Tree Shop. I didn’t go in there because it’s the type of store where an old lady will fight you over curtains, but it certainly looked open. However I just looked up Christmas Tree Shops so I could give a better explanation of it than “crap store” and I just learned they closed all their stores on August 12th. It is very possible that it now stands as a trap for lost souls and all who enter are doomed to wander the aisles of b-stock home goods forever. Or it’s filled with rats eating expired popcorn, who knows?

Thus there remains one anchor store: JC Penney. I believe you could live in JC Penney for at least a month before anyone even noticed you, let alone asked you to leave. There are other people and employees in the store, they just do not care about what you’re doing. JC Penney exists for a venture capital ghoul to make money through some byzantine rent scheme, so everything else that goes on there is surplus to requirements. Sometimes they have nice shirts though.

There actually is one very nice store in the mall. They sell all the old action figures I went to the mall to get back when it was thriving. It is right next to the now closed secondary market sneaker place and around the corner from the previously mentioned tattoo place currently taking up residence in what used to be a Champs Sports. I would have spent more time looking around there, but the mall was actively draining my will to live.

Or maybe I see a little too much of myself in the mall. Way past expiration, but persisting regardless, filled with useless crap as the architecture slowly fails. I think in this example my pancreas is the Christmas Tree Shop and my lungs are—surprisingly—JC Penney. The mall has more pinball machines than I do though, so it’s got that on me.

Things I Like

That dipping taco was actually pretty good.

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A Live Mic

black and gray microphone on microphone stand — Photo by Jon Tyson on Unsplash

Back in March, I was asked to participate in a Cystic Fibrosis Foundation fundraiser. My initial response was essentially “are you sure?” but they replied with “yes”, so last week I gave the a short speech at the Connecticut’s Finest event. Here’s what I said:

I’m not supposed to be here, both in the way that I should be dead by now, but also in the way that my idea of a fancy meal is something from the limited time menu at Arby’s. Still, I’ve lived to an age where I shouldn’t eat at Arby’s every day, so here I am.

I turned 40 this year, which is mostly good news, depending on who you ask. By my current math 40 cf years translates to about 66 regular years. And even if the Social Security office does not recognize that as a valid reason to start my retirement early, it certainly feels like it’s been 66 years. Still, I was surprised at how much I wanted to be 40, even if that meant my early-20s financial plan of “put it all on a credit card, then die” has become a spectacular failure.

It took a lot of hard work and dedication to get me this far, but luckily most of that work was done by someone else. I’m not particularly skilled in genetics—to give you an idea of my skillset, when I was 9 years old I attempted to use a store bought jar of officially licensed Teenage Mutant Ninja Turtles Mutagen Ooze to mutate an old sock I found by a dumpster—so while I did participate in a couple of research studies and I could lie to you and overstate the role I had in the development of certain landmark drugs, we’re all friends here so I can tell you that I let them give me experimental pills for $100 and a free breakfast.

Because for most of my adult life, I was a man who needed a free breakfast. I did not grow up poor, though I did spend multiple years in an apartment where–if one were truly dedicated–you could touch three walls at the same time. But when I turned 18 and the medical bills started to have my name on them instead of my mom’s, I decided to see what being poor was all about.

Now, this is a night of celebration, so I will not bore you with the details of the bad years. If you’re truly curious, I wrote a book about 10 years ago which, fair warning, is mostly swears. In lieu of an extended diatribe, I will offer this one word summary of the bad years: sucked.

Though I’ve never been accused of being an optimist, thanks to some tremendous advancements in treatments and medications—I’m personally on Trikafta—the years are better now. That’s not something I expected when I was 25 and coughing up blood because I thought I could try toughing things out when I got kicked off state insurance for making a stunning one thousand dollars in one month. And it may not have been something my parents expected when they took a more useless than normal 9 month old to the pediatrician and that baby used one of his two skills to somehow penetrate the doctor’s Rolex with a hot orange baby dump that—luckily—the doctor immediately recognized as a cf poop. But sometimes things go the way you think they will and sometimes you get lucky.

But that is not to say that these better years are cheap or easy. My day consists of roughly 30 pills, 3-5 injections, and 4 or so inhaled medications, enough that the FedEx man thinks I’m running a satellite pharmacy. Yes, you may have heard that life is a priceless gift, but cystic fibrosis has taught me that mine costs about $330k a year. At this point I’d like to give a shout out to Microsoft Excel for being just hard enough to use that my ability to remember keyboard shortcuts somehow became an insurance bearing career, though not enough of a career that I don’t occasionally dream about unloading just 1 week of cystic fibrosis drugs at market value. Seriously, that would be illegal, so definitely don’t come see me if you have $6000 and a curious mind.

Look, earnestness isn’t really something I have in my bag of tricks, so I’ve struggled with how to end this. My wife thought it might be nice to mention some of my non-cf related accomplishments before I go, though since that’s not really how my brain works, the best I’ve got for you is that I once did 9 revolutions in an industrial clothes dryer.

So in the end, I’ve decided to leave you with this:

When I was young, a lot of the things I loved vastly misrepresented the upside of being a mutant. Rather than the accelerated healing factor of Wolverine or the superhuman size and strength of the Toxic Avenger, I got the wrists of a velociraptor and lungs that sound like a haunted house. But as I see children with cf now and how the ongoing mission of the Cystic Fibrosis Foundation has given so many of them “healthy body mass” and “high lung function”, I can honestly say I’m not bitter. Because cf has given me a gift those kids may never get. It hasn’t made me strong or brave, because if any other path were available to me, I probably would have taken it. But what it has given me is…

a convenient scapegoat for all my failures. And that ain’t nothing.

Thank you for your time!

(insert rapturous applause here)

It was my first time talking in front of an audience in at least 4 years, so my delivery was a little rusty, but the speech went over well enough for those that made it to the end. My favorite comment was from a gentleman who was working the door at the restaurant, a job which mostly consisted of “Thank you for coming, thank you, thank you for coming, etc.” until I walked out and he said “Nice story”. That was better than a five star review.

Things I Like

This week I spend a bunch of time listening to a song called “Crusaders” by the Swedish group Hollow. I stumbled upon this band back in the 90s when I was looking for more bands that sounded like Morgana Lefay (who I talked about last week). I used to spend a lot of time poking around Ultimate Metal Reviews at the time and was obsessed with the 30 second or so RealAudio clip they had posted of “Crusaders”. They gave the album a 9.2, making it their fourth best album of 1998, just ahead of Bruce Dickinson’s The Chemical Wedding—which is one of the greatest albums ever made—and just behind Judas Priest’s 98 Live Meltdown, which exists. The rest of Hollow’s Modern Cathedral album didn’t really stack up to “Crusaders” for me—I actually prefer the follow up album, “Architect of the Mind”, as did Ultimate Metal Reviews—but “Crusaders” still rules.

But really, this is just an excuse to post this Internet Archive link for Ultimate Metal Reviews, a site I probably spent an actual full year on in the days of 56kbps internet connections. Fun fact: at least one member of one band on the best of 1998 list has been charged with insurrection.

https://web.archive.org/web/19990203144828/http://www.metal-reviews.com/

When Even the Ice Cream Lets You Down

There is no food more depressing than disappointing ice cream. I say “disappointing” and not “bad”, because “bad” ice cream can be good, actually. The bar a >$1 Hoodsie cup has to clear to count as “good” is a lot lower than the bar a $5 scoop of premium handmade ice cream has to clear. And if the Hoodsie cup somehow stumbles—say if it’s missing the traditional wooden spoon—your day will go on. No guarantees on what happens when the gourmet ice cream disappoints.

ice cream cone — Photo by Mae Mu on Unsplash

The more astute amongst you have probably figured out by now that I had some disappointing ice cream recently. Ice cream is not a lifelong passion of mine. In my earlier years, I thought it was fine, but barring the occasional Blizzard from the Dairy Queen in the mall, I never really sought it out myself. Even when the ice cream man came around, I was more likely to hit up a snow cone than a waffle cone. But somewhere around my 30th birthday, I grew a real taste for Haagen-Dazs, probably because my cystic fibrosis related diabetes made it a forbidden treat. Fast forward about a decade and my late night weekend desserts are spent studying the scripture of the one true prophet, Tom Carvel.

But I also like new things, so my wife and I have taken to trying out different ice cream joints each week. We ended up at one this weekend that I will not name, but was not good. We should have known what to expect when on a decently warm Saturday night in August, we were the only ones in the place (by way of comparison, Carvel was white hot).

We had looked at the menu before going, our minds reeling with the truly impressive number of both hard and soft ice cream flavors. But, you know, “jack of all trades” and all that.

I stuck with the hard ice cream, because my heart knows the truth of soft ice cream: it was perfected by the king of kings, Tom Carvel. I had two scoops of Caramel Cinnamon Crunch ice cream, which was essentially ice cream with Cinnamon Toast Crunch and caramel swirls. My wife had the soft serve Tiramisu ice cream.

Before our arrival, we had wondered how they managed to have so many soft serve flavors. The answer was they used a machine that dispensed an unflavored base and then swirled some flavor into the ice cream after it was already in the cup. I will not pretend to know the intricacies of the chemistry of soft serve ice cream, but I can tell you how it doesn’t work. If the flavor isn’t in there by the time the cream hits the cup, just throw it out.

Before getting into my ice cream, I will add the caveat that I didn’t actually get to eat it until the next day. Part of the fun of diabetes is having to do a bunch of math before I eat if I want to have something carb-y and the numbers just didn’t add up on the first day. I wish they didn’t the next day either.

My most shameful quality is that I think ice cream tastes best with a plastic spoon. I’m not proud of the number of single use spoons I’ve used because it completes the experience, but each of us is a work in progress. But not even a cheap spoon could save the mixture in front of me. It was some kind of frozen milk contraption that tasted like it had been walked through a room that carried a vague sent of cinnamon. I recognized the soggy, chewy Cinnamon Toast Crunch pieces by look alone and I’ll be goddamned if I could taste any caramel. I paid $7 for roughly two scoops of this Invasion of the Ice Cream Snatchers replicant of a real dessert, so I continued to eat it even though each bite brought me ever so closer to running at the nearest wall as fast as I could in the vain hope that the impact would help me to forget. Luckily, I ran out of “ice cream” before I pulled a Wile E. Coyote on the living room wall.

I could only think of the famous Wonder Woman Ice Cream panel and wonder what would have become of our world if she tried this crap.

Things I Like

Sometimes when scrolling through the vast oceans of digital music available at the tap of a finger an old friend will break the surface.

I ended up listening to a ton of Morgana Lefay this week. They’re a Swedish band that plays a chunky, mid paced form of metal that I often see referred to as Power Metal, but that label doesn’t do justice to how aggressive they can be. Also, vocalist Charles Rytkönen is one of the best to ever do it.

They are one of a handful of bands that I discovered in the first heady days of file sharing, so the age and time that I discovered them makes me wholly unqualified to judge them objectively. That being said, I think they play metal in one of it’s purest forms. I often wondered why there weren’t more bands like them, but the Apple Music algorithm answered that for me: many have tried, most have failed. Turns out its real easy to make Kirkland brand Morgana Lefay music. There’s just something that sets the real thing apart.

For the record, the band I stumbled across back in the day was actually Lefay, which is a spinoff of Morgana Lefay that shares only a vocalist and a guitar player, but I kind of consider it all the same well anyway. If you’ve never heard them, give their 2005 comeback album Grand Materia a listen; the song “My Funeral is Calling” has been running through my head for the entire week. But I celebrate the whole catalog and I’d be remiss if I didn’t mention the absolute hours I’ve spent playing along the “Master of the Masquerade” of their Maleficium album.

The Baked Potato Festival

I had to go to a vineyard for a Cystic Fibrosis Foundation function last week, which was fine even though I don’t drink and apparently asking for table grapes at a vineyard is essentially the same as taking a dump in a wine glass.

Anyway, the point of this is that on the way to the fancy part of Connecticut, I saw a carnival being set up. I love carnivals even if I don’t really get a chance to go to them anymore, but this one had a sign that had me ready to cancel all my weekend plans: Baked Potato and Roasted Corn Festival.

Absence is an unavoidable part of life and sometimes things leave a hole in your heart at a young age and you spend the rest of your life looking for some thing to bridge that gap. For me, there is a small hollow in my heart carved decades ago when the 1 Potato 2 left the local mall food court. In my childhood recollections I can see a row of microwaves and toppings as far as my eyes could see, stretching out over the horizon in a way that is probably more indicative of my height at the time rather than they way things actually were.

Subscribed

Still, my life long love of the baked potato was born in that corner storefront and the arrival of a D’Angelos Sandwich Shop that served the only sandwich that made me shit halfway through eating it only served to lionize the dear departed potatoes in my mind.

For a brief second, reading the “Baked Potato and Roasted Corn Festival” sign made me feel young again, hope fluttering in my heart that while things my never be like they were, perhaps they can at least be different instead of dead.

I could not wait to get home and tell my wife about this glorious festival of potatoes with toppings undreamt of by us mere mortals and perfectly seasoned elote. I must be getting soft in my age, because I let myself have this dream for longer than I should have, before finally looking up the Baked Potato and Roasted Corn Festival on the internet.

Turns out the person putting the letters on the sign took a little artistic license. It was merely a Potato and Corn festival and even that moniker was more playful than descriptive. A tractor pull and some racing pigs got higher billing than any food. In fact, the only mention of food was a promise of a variety of food trucks, with nary a mention of sour cream or chives.

We briefly considered going, but I thought the hope was worth more than the disappointment, so the Baked Potato and Roasted Corn Festival lives only in my heart for now.

Armchair Diseasing

A lot of the process of having a disease in America is people dictating to you how you should feel about it. A lot of the process of growing up—or me, at least—is letting that go.

I’m not letting go out of kindness or politeness or anything other than self interest. As someone who has made a late life shift into constantly talking about the ways my body betrays me, I have had to make peace with the fact that some people will just never understand the way I see things. Which is fine, right up until the part where they start telling me how I’m doing it wrong.

The danger of saying “yeah, sure” instead of “what the fuck are you talking about?” is that the other party starts to see your problem as being “solved”, but since they weren’t really helping anyway, it doesn’t really matter. I’m lucky in that people think I’m kind of a prick anyway, so I get away with a fair amount of “that doesn’t work for me, brother” and it doesn’t matter if they don’t recognize the AQI as a valid measurement, they think I’m just delusional and surly, which is fine, because it’s not untrue.

I hate to use specific names here because this shouldn’t be an airing of grievances, so I’ll just refer to T., who has known me for my entire life. T. is of the opinion that my attitude towards cf used to be “bad”, but I got over it and now I should stand as a shining example to the younger generation about the power of perseverance. I fully understand how T. came to this realization, because to them my “problems” solved themselves. Which is fine, I understand I’m in charge of my own business, but it’s a little galling to hear things like “you should have said something, we could have figured it out” when 90% of the things I said from the ages of 18-25 were “something” and it didn’t seem to break any ground. Which I need to stress, is not anyone’s fault save for the people who go out of their way to make sure American healthcare never quite live up to it’s potential, but even at this mellow age, I still get a little twitch when we start re-litigating the past into a fantasy story.

But again, the airing of grievances is not the point and I will grant that T. was right on one thing and it’s that I should try to pass some of my knowledge on. So…

Some people are never going to get it and there’s nothing you can do about that. You will probably not have a phrase or password that unlocks the secret door in their mind that grants them the understanding you feel is just beyond their grasp. And that’s okay, they may feel the same way about you.

Look I’m not a baseball player, so it seems to me that the process of hitting a home run is essentially getting under the ball and putting it over the fence. Why doesn’t every just do that every time? Because it is one thing to observe it and another thing when the ball is coming over the plate at 90 mph. Sometimes just making contact is enough and then you run as hard as you can and you’re still out. You never know until you’re the one at the plate.

Things I Like

I probably mentioned the Arrow Films Years of Lead box set previously, but I’ve bought a lot of movie boxsets over the last few months and we’re working through them at various rates, so I’m bouncing around a lot.

I’ve grown a real taste for Italian Crime Films in the last few months and I have to give Colt 38 Special Squad a recommendation if you like shockingly brutal violence and what appear to be wildly irresponsible car chases. There’s harsh quality to the film—no heroes, no happiness—that I think you only get when your country is going through an era known as the “years of lead”. I think Il Boss is still my favorite movie intro, but Colt 38 Special Squad is up there.

There and Back Again

I’ve been doing weekly writing over at https://canteatcantbreathe.substack.com for the last 20 or so weeks. The original plan was to move everything from this site over to that site, but I may have had slightly rosy hopes in regards to the actual discoverability of a Substack newsletter (it’s bad!).

I’m not killing the experiment yet, but I did just import all the Substack posts to this site and I’ll be cross posting here and there for the next few weeks while I figure out what the right venue is. If anything here looks weird, I’m blaming the Substack importer.

Eating Pizza on a Stakeout

After realizing I’d seen a paltry amount of William Friedkin’s filmography (for the record, The Exorcist, Jade, like half of Blue Chips, and maybe Bug, I don’t really remember), I finally got around to watching The French Connection the other night. It was as good as its reputation, especially since I’ve gained an old age appreciation for car chases. It also sparked a discussion with my wife about how good we’d be on a stakeout.

French Connection – trendy poster – Photowall

I actually thought I’d do pretty well, as I’m nosy and I like staring out windows, but there’s a scene where Gene Hackman eats a slice of pizza on the street and at that moment, I realized I was out.

It takes at least 6 pills and an injection for me to have a slice of pizza, which is not an insurmountable task, but even after 40 years of taking pills and 10 years of injections, it’s still a pain in the ass. I have to consult a blood sugar graph before I eat, a process which has probably blown at least one fuse in the ol’ brain circuit, but luckily the missing fuses are all non-essential so far. Though my enjoyment of cheese went up about 200% when it became a food I don’t really need insulin for, so maybe I just blew a fuse in my cheese limiter.

To be fair, there was a point where I didn’t have or need the blood sugar graph, so if I think really hard, I can remember back to when I could have whatever snack whenever I wanted, but the 130 pound guy who used to carry a giant bottle of pills into any fast food restaurant within a 50 mile radius and eat until his stomach got stretch marks is buried somewhere in my now 180 pound frame.

I suppose that the act of getting older was going to curtail that one way or another, but one of the limited joys of cystic fibrosis was an unlimited diet and having to avoid snacks not because they’ll ruin my appetite but because I won’t be able to have any insulin with my dinner if I take some now is a truly bullshit way to live.

Plus I can’t just have street pizza like Gene Hackman.

Changing the Record

I ended up watching The French Connection because I saw a bunch of headlines about how the newly posted streaming version had a racial slur cut from it. I’m not sure exactly who made that decision—maybe Disney who currently owns the rights or perhaps it was made by Fox before they got there—but it’s funny that they cut an early slur but left at least two other slurs later in the film.

We should be in a world where the archival promise of the internet has reached it’s full potential, but we gave the keys to a bunch of corporations and they don’t give a shit about any of that.

I own a lot of movies on physical media, though I shouldn’t have to. I have no particular love for blu-ray discs, to the point that my main way of watching them is by ripping them to a massive hard drive at full quality and streaming them from a server. I believe this is actually illegal, so if this ever shows up in court, I’m going to deny the hell out of it.

The thing is, the process of buying digital films doesn’t have to be bullshit, but it is, because someone feels like it makes the more money by licensing you a DRM ridden file instead of just letting you download the goddamn thing you want. But I understand that the golden age of movie ownership is over for most people, just as it is for music.

That doesn’t mean it’s good.

I’m not going to sit here and tell you I don’t enjoy streaming music, which puts a great chunk of recorded history right at your fingertips and lets me do stuff like listen to every Prince album in chronological order without taking out a personal loan. And while I think it’s obvious to anyone with any experience in the real world that this arrangement isn’t going to work out well for artists, occasionally the cracks show on the user side too.

I was listening to In Flames’ The Jester Race on Apple Music the other day. It’s an absolute masterpiece of melodic death metal that I’ve heard hundreds of times over the years. It’s one of those albums where every turn is hard coded into my brain. Which is why I found it so jarring when one of the songs was wrong on Apple Music.

Track 6, “Dead Eternity”, technically exists on the Apple Music version, but instead of the album track, it’s the (demo?) version from one of the re-releases of their earlier Subterranean ep. It’s still good, but it’s not as good as the album version and even has a different singer.

I know it sounds like that doesn’t matter much, but what if someone listens to The Jester Race for the first time and the version they listen to has one of it’s highest points sanded down? It’s such an unforced error. It’s not the first time I’ve run into something like this. It won’t be the last either. Because this stuff does not matter to whoever is counting the money. I get that. But that’s also why I’ve got a hard drive of ripped songs ready to go when someone figures out that getting rid of mid 90s metal albums will get them a hefty tax write off.

For the record, the most damaging error I found was about 5 years ago when pretty much every streaming service replaced the album version of Alice Cooper’s “Welcome to my Nightmare” with the shorter single version. The funniest one I saw was on the 2022 remaster of Coil’s The Ape of Naples, where the fourth song is shown as “Tripe Sun” in which one missing letter gives a meaning very different from the actual title “Triple Sun”.

Things I Like

It’s been a big week for me finally watching things people told me where really good. I can admit that I thought everyone was full of shit about Train to Busan, because nothing disappoints like a horror film that was reviewed at a festival, but 7 years later I stumbled across it on Shudder and I’ll be goddamned if it wasn’t a masterpiece. It’s able to increase tension in surprising and interesting ways while also not fumbling basic human emotions. Hell, I may even watch it again.

The Best Stuff Kinda Sucks

Spoiler Alert: This ends up being about Baywatch Nights

Baywatch Nights S2 Intro Theme - Never Aired in UK - YouTube

I took a lot of dumps pre-internet, which means I’ve read a lot of magazines. Though there was a period post-internet but pre-smartphone where I memorized each issue of Entertainment Weekly that I accidentally subscribed to after I bought the remaster of Megadeth’s “Rust in Peace” at Best Buy (and got a receipt as long as my damn arm), most of my reading was video game or guitar magazines.

I remember little to nothing useful from the hundreds of hours I spent pouring over these magazines while innovating fresh and exciting pooping positions, but little pieces of text sometimes float back into my mind. One I half-remember was a Ritchie Blackmore quote about how he didn’t really connect with the 80s super shredders because there was never a moment where you felt like they might lose control. Which brings me to today’s topic:

Sometimes the best stuff kind of sucks.

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That can cut two ways. Sometimes a perfectly executed, tight piece of work just doesn’t feel alive. Rundown any top sales chart and you’ll eventually hit “perfectly executed, but boring.” To prove this isn’t an old man opinion, I’ll dig all the way back to the 90s.

I’ve made an active effort to not talk too much shit on here, but I will give myself a personal waiver to discuss the number 16 song of 1995, “Have You Ever Really Loved a Woman?” by Bryan Adams.

The song is impeccably produced with a textbook arrangement that ebbs and flows in the right places, with everything cleanly played and vocals that are right on the money. It also fucking sucks. Sappy lyrics, guitars that say “excuse me, do you mind if I play here?” and a general aesthetic that feels like an upscale Spanish restaurant run by Mormons. Weak.

The easy counter example here would the the number 4 song of 1995, Seal’s “Kiss from a Rose”. In the macro view, they have a lot in common: both are about love and had single releases that were tie-ins for major feature films, the Adams song with Don Juan DeMarco and the Seal song with Batman Forever. But there’s no fun here, because of course the Seal song is better. In the video he sings in front of the Batsignal and the song has that little pause-to-keyboard break that rules. It’s no contest.

So we’re going to dig a little deeper today and find the second meaning of “Sometimes the best stuff kind of sucks.” Something that has enough going against it that it has no choice but to be glorious.

Have you heard the ending theme to Baywatch Nights?

Sung by star David Hasselhoff, it’s essentially a vanity project nesting doll. A soap star (Hasselhoff) hit it big on prime time 80s tv as the driver of a talking car (Knight Rider) and used that success to make a vanity album that eventually lead to him singing down the Berlin Wall. He was in another prime time NBC show that was cancelled after one season, but he got a deal made to bring the show back in syndication and in the process it became one of the biggest shows in the world (Baywatch). From that success, Hasselhoff set up a spin-off where he traded in his tiny red shorts for tight jeans and a cool Adidas jacket as he went from lifeguard to private eye (Baywatch Nights).

Hasselhoff’s Humphrey Bogart obsession and Baywatch Nights’ eventual shift into supernatural territory are beyond the scope of this piece, but think of the journey it took to get this beautiful piece of work, a journey you can somehow hear in every note. The breathless pre-chorus, the round at the end, it’s all so beautiful. And I do not mean for this to come off as ironic appreciation, I truly think it rules.

Now the song his Baywatch son sang about how he’s not going to have sex, that I appreciate ironically.

This is an extreme example, but stuff like the ending theme to Baywatch Nights is why I’m not really interested in the creative possibilities of AI. I believe it will have a place, serve a purpose and possibly make the grunt work easier, but the thing I truly love about art—and yes, I just called the end theme from Baywatch Nights “art”—is that it’s made by people. People with weird ideas and scores to settle and things they wish they were but probably aren’t. Honestly, at the rate it’s moving, AI can probably get you 90% of the way to a new Baywatch Nights theme, but it’s that last 10% that makes all the difference. We can only stomach so much algorithmic slop until we crave that batshit human touch.

Setting Off the Exercise Sensor

The potential for smart watches hasn’t quite been reached, probably because there’s more money in getting you to look at the screen of your phone. It’s great that I can see my blood sugar reading from my continuous glucose monitor at a glance, but it would be even greater if I could do it without having my phone in range. Hell, at this point I’d settle for being able to dismiss and silence the high glucose alert without having to unlock my phone.

But there is one feature of the smartwatch that truly brings me joy. Unfortunately, it’s a rare occurrence and as technology improves it may disappear altogether. I never feel more accomplished than when I poop so hard the watch asks me if I’m doing a workout.

Yes, I am, thank you for asking.

Things I Like

I think Venture Bros is the most beautiful show ever made.

It’s beautiful because there’s a sadness at the heart of it, the way there’s a sadness at the heart of life. Nothing seems to go right, but it always goes on. The characters are constantly dealing with the consequences of their actions and the actions of the people they love, even if it seems like the people they love don’t always love them back. It is a show about life that also happens to have a villain with invisible appendages named Phantom Limb.

The new Venture Bros movie, Radiant is the Blood of the Baboon Heart is a fitting end for the series, as it’s not quite what any of us wanted—a full final season—but Jackson Publick and southeastern Connecticut’s favorite son Doc Hammer took the cards they were dealt and came up with something beautiful. If you’ve never seen the series, start from the beginning and work your way up. If you have seen the series, watch it again anyway. That’s what I’m doing.