When MS Becomes Your Crappy Boss

I bet I've hidden more dead bodies than you have.

I was living in the Seattle area for close to a decade, but decided to move back to where I grew up in Pennsylvania. Once I was settled in, someone asked if I'd be interested in filling in as caretaker at the towns cemetery until they could find a permanent replacement.

For the last five years, that's what I've been doing as a side job — hiding dead bodies.

Most people find dealing with death on a professional level weird, morbid, or creepy. What I find strange about the whole process is that we preserve bodies, dress them up, shove them in an expensive box, dig a hole, then line said hole with concrete vault, lower the casket into the vault, pop the lid on and cover it up with dirt . We're not only saying goodbye — we're storing the dead.

I like awkward. I never skip an opportunity to drop a sarcastic line if it makes someone laugh — especially when they don't know how to handle it. So I started calling it Dead People Storage. It either creates a gloriously awkward pause or gets a laugh that takes the edge off.

Not long after taking the job, COVID hit. The board of directors — all in their golden years, with one foot in the grave themselves — weren't about to sit down with strangers for interviews, which was fair. So my "temporary" fill-in job turned into a permanent job, by default.

Being honest? For an introvert like me, it was kind of a dream. For the last two decades, I've been running my own web development company, so this 'side job" got me out from behind the screen, into the outdoors a few hours a week. And unlike every client I've ever had over the last two decades, not a single client of the just under 9,000 interred there ever complained or said some stupid shit to that irritated me. Well… other than a few that escaped on my watch.

The job wasn't light duty. I dug graves (with an excavator — this isn't the dark ages and I'm not out here shoveling like a psycho). I set up burials with the heavy-ass lowering device, tent, greens, and all the gear. I mowed 28 acres for 20–30 hours a week in the heat, snow-plowed and salted in the winter, poured foundations for headstones, cleaned old markers, wrangled shrubs and trees that seemed to drop branches the size of Buicks every time the wind picked up and managed the other guys that trimmed around the 8,800+ grave stones,.

I even dragged their record system out of the 1700s — literally — migrating ~9,000 burials from dusty hand-drawn ledgers into a cloud-based system and building them a website through my web business for free. Why? Because I take pride in anything I'm involved in on a professional level, and I like to contribute when I have the means.

If you have MS, you damn well know what heat does to us. For me, if the temperature is over 75°F (23.9°C), MS loves tag in and my symptoms start to amp up and then the fatigue starts setting in until all I want to do is get cool and rest. If the temperature is below 55°F (12.8°C), everything just hurts. And there's the rub with this particular job. It required me to be out at all times of the year. During the hot summer months I would be a zombie within a few hours. During the winter I would feel like I got hit by a garbage truck. 

My weapons of choice? A FlexiFreeze ice vest for the days that were too hot then for winter,  battery heated vest and gloves. Pretty much from mid June through the end of September, my uniform was layers: T-shirt, FlexiFreeze, button-down over top. Winter it was thermal underwear, t-shirt, sweatshirt or two, heavy winter jacket, beanie and heated gloves. Because here's the deal — just because you're sick doesn't mean you have to look like a slob.

That cooling vest even earned me one of my favorite awkward moments. As caretaker, I dealt with the police more than you'd think — people steal ornaments off graves, smash cars into headstones, or decide the cemetery roads are a great place to do burnouts. So the local town police cruise through throughout the day pretty regularly. 

One day, an officer stopped me while I was mowing and asked why I was wearing a bulletproof vest. Without missing a beat, I said:

"Oh, you wouldn't believe how rowdy and violent these dead people get."

The look on her face was priceless. Then I explained it was an ice vest because my immune system is an asshole and doesn't let me regulate temperature like a normal human.

The temperature issue was the main reason I decided it was time to wave the white flag and let MS dictate that this work can't continue for me.

Here's the thing though: I didn't get my MS diagnosis until a few years into that job. Looking back, I'm positive I had it since my mid-20s. The weird cramps, tripping up steps, the weird itching in specific locations that was impossible to scratch away, the good ol' MS Hug that I thought was just random muscle cramping — all easy to shrug off as age, bad luck, dehydration or just overdoing it. They were all just minor annoyances, nothing so intolerable that made me say "Something isn't right".

Then came a relapse. Hand tremors, old symptoms turned up to 11, and a whole batch of new ones. Suddenly, the work I'd been pushing through wasn't possible to hide behind excuses anymore. Something was clearly wrong so I made a doctor appointment and within a few months had my answer.

I've always had a strong work ethic. Prior to MS, I only ever quit a job twice. Once was due to incompetent management and once because I was headed to bootcamp. The Marines drilled it into me: be on time, don't call off unless you're half-dead, take pride in what you do, go the extra mile, make yourself indispensable. That was the backbone of every job I've had since up to and including the web development company I started two decades ago and will continue to manage as long as I possibly can. 

Even now, I keep at it — I'm usually up by 4am (thanks, degenerative disc disease), showered and ready before sunrise. On a good day, I can work from 8 to 2. Most days, fatigue bricks me by 11. And if you've ever coded while exhausted and or with brain fog, you know the pain: you waste hours debugging before realizing it was a rogue period or a damn misplaced colon the whole time.

The days of 12–14 hour marathons are gone. But I plan to keep coding as long as I can because, like everyone else, I've got bills, hobbies, and a fridge to fill.

That's why quitting the caretaker job hit harder than just leaving a job you hate. If you hate a job, you can leave, find another, keep moving. This was different. If you got fired from a job it was probably for cause and this wasn't that. This was me admitting and coming to terms that my disabled ass couldn't handle the physical part of the job anymore — not because of motivation or talent, but because MS dictated these terms.

Losing the extra income stings. It's not just losing a paycheck. It's losing the income you've been accustom to making and for many it's a drastic punch in the gut, impacting your ability to keep funding your life, your health health care expenses, your hobbies / entertainment budget and your "keep me functional" purchases. So yes, it just hits harder in so many ways.

Nobody warns you how expensive MS is.

Your grocery bill doubles because you're tailoring your diet and can't live off cheap processed crap anymore. Supplements and vitamins pile up — D,  B12, magnesium, electrolytes, the whole alphabet soup. Then there are the gadgets you buy in hopes of taming symptoms: cooling vests, neck coolers, braces, canes. Yes, I'm getting one — call it a fashionable walking stick, because falling over in a grocery store line is worse than looking like Gandalf, I learned that one from experience. 

Then there is the medical costs. I'm fortunate to have good healthcare through the VA. I know many will roll their eyes because they've had bad experiences, but I'll leave that topic for a different post. If you don't have decent health insurance or not living in a country that hasn't corrupted the healthcare system in the name of greed,  you're still clocking extra doctor visits, neurologists, MRIs, labs, and meds. I'm taking sixteen pills a day just to function in somewhat of a tolerable way. Without the healthcare/insurance I have, I'd be living behind a dumpster at McDonald's by now just from treating the symptoms. Then you throw in the cost of a DMT? If you want one of the newer high-efficacy disease-modifying drugs? Go ahead and factor in $50,000+ a year.

MS doesn't just bankrupt your body. It bankrupts your bank account too.

When I finally had to tell the board I couldn't keep doing the caretaker job, it stung. Not because they were unkind (they were great, actually — asked me to stick around in a lighter role managing and coordinating), but still, quitting felt like failure.

MS screws you twice. First by wrecking your body. Then by making you feel guilty for protecting it. Add in losing the side income (aka my ADHD hobby slush fund), and it hits even harder.

But here's the part I want you to take away:

• Quitting isn't weakness. It's refusing to let MS bury you before the cemetery does.
• Saying no isn't giving up. It's pacing yourself so you still get to live and hopefully retain some level of function.
• Guilt means you cared — not that you made the wrong choice.

MS is a garbage boss. It doesn't care how hard you work, how much pride you have, or how many thank-yous you've earned and it certainly doesn't give a shit if your ugly mug is hanging on a wall somewhere under an Employee of the Month plaque. It wrecks your health, drains your wallet, and then tries to make you feel bad for protecting what's left. The only real power you have is saying, "Fine, but I'm stepping back on my terms."

I didn't quit because I stopped caring. I quit because I cared enough not to let MS run me straight into the ground. Besides — I wouldn't get a discount if I stuck around and dug my own grave, literally.

The cemetery will go on. I'll still be here, both middle fingers up, flipping MS off another day — instead of checking myself into Dead People Storage.