Signal: Interrupted

The Quarantining of Normal

Posted by Erin on March 26, 2020

After a week of gloomy weather, it had been gloriously sunny all weekend in Southern California. But as evening approached on Sunday, March 22, it was raining heavily again. It was the kind of weather that makes you shelter in place. Pandemic weather.

Seemed a poetic end to a weekend that was a big, stormy test for a lot of us.

It’s not that it was the first weekend that was impacted by coronavirus. Everyone with an ounce of awareness (and zero tolerance for bullshit conspiracy theories) has known for a while that things were getting serious. Even those who were inclined at first to nod along hopefully at the platitudes coming from our leaders, had come to grips with the magnitude and gravity of a crisis that could no longer be glossed over with worthless—and worse, dangerous—assurances that everything wasn’t so bad. New cases of infection were being confirmed daily all over the world, by the thousands. Media coverage of the virus was now overshadowing Joe and Bernie. And the term “social distancing” burst onto the scene like the fucking Kool-Aid man and took up residence at the top of our cultural lexicon in an inescapable way.

All of this, and it wasn’t even St. Paddy’s Day yet.

But, going into this last weekend, I think a lot of us* felt like it was the first weekend we’d be living through since shit got really real with the coronavirus pandemic.

I’m right, right? In the last week or so, hasn’t it felt like a year’s worth of drastic headlines has been packed into every single day? Pro sports leagues suspended their seasons. State and local governments began shutting down life as we know it. Schools closed. Then restaurants. Your favorite bar last-called for the last time until who knows when. Several states postponed their primaries, and campaigning all but ceased with less than 8 months until what is probably the most important presidential election of our lifetimes (if it wasn’t before, it’s certainly shaping up to be now). Millions of people whose livelihoods depend on physical interaction with other people were suddenly boiled down to “essential” or “non-essential.” And for those of us who are fortunate enough to still have jobs at all (non-essential though many of them are, evidently), the majority are now working from home. I mean, I’ve been working from home for 10 years, so for me, the work isn’t the weird part; it’s that home workplaces are suddenly the norm.

And amidst all these changes blazing our way at warp speed last Monday through Friday, our attention was incredibly steadfast somehow. The world’s infectious disease experts, who have been trying to warn us for, oh, EVER, were now suddenly being listened to. (And by the way, even though those scientists and doctors would have every right to spew a hearty “We told you so, you shortsighted nut sacks!” at the world, I haven’t heard a single breath of that kind of smug righteousness from them, because smug righteousness takes time, and there’s no fucking time.) Epidemiologists, mathematical modelers, and vaccine researchers are working their fingers to the bone trying to get a handle on this thing. I bet they wish they didn’t have to keep looking up from their work every 30 seconds to warn us AGAIN about the seriousness of it all, and beg us to please, for the love of whatever you hold dear, DO YOUR PART.

And most of us are getting it, thank God. Stay inside. Don’t go out unless you absolutely have to. Wash your ever-loving hands. Over the last week, most of us fully joined the ranks of the Flatten the Curve army. Widespread changes and limitations, unimaginable four months ago, are now not only reasonable and doable, they’re CRITICAL, even if we still disagree on some of the fine points (even with lingering disagreements, can we all at least concur without exception that these buffoons are unquantifiably horrible?).

For me, last week was crazy busy, work-wise. The need to focus on work was good, and I imagine it was the same for a lot of you (given also that “work” could be substituted with your suddenly home-schooled kids, or your spouse-turned-office mate, or all of the above). Monday through Friday was about adjusting to a new normal, but one that, blessedly, was still rooted strongly in routine. Get up, make coffee, do the thing(s) for six or eight hours without ever leaving the house, repeat. Routine meant familiarity, even in a new setting, and even though the days were long and the pace was non-stop, when it was quittin’ time, we barely cared or even noticed that there would be no baseball practice to get to, or happy hour with friends to attend, or March Madness game to tune into…we were tired and needed rest, because tomorrow was going to be the same.

Until Friday.

The routine of the work/school week was paused, and the schedule was wide open. Consequently, a new uncertainty emerged, exhilarating and scary: what would we all do with so much time when out-of-home options were essentially nil?

For so, so many of us the answer was a bizarre dichotomy: on one side, there was simplistic, analog leisure (Family bike rides! Jigsaw puzzles! Oh and look at all those books I forgot I owned!), and on the other, complete immersion in technology (Netflix and quarantine! Tik-Tok makes performers out of everyone and their grandmas! And raise your hand if you lost your Zoom virginity this weekend!).

And listen, I fully bought into #quarantinelife too, y’all. Virtual happy hours and revival of long-neglected hobbies were the weekend m.o. at my house. I even convinced my 16 and 21 year old daughters that we should learn the choreography to “We’re All in This Together” from High School Musical, because “We’re All in This Together” has pretty much become the motto for Planet Earth, and hey, it was something we could do without leaving the house. We were all acting like it was suddenly January 1 again, and the resolutions were out in force. There was no limit to the possibilities, as long as they could be done without going within six feet of anyone we don’t live with. I even began vlogging my weekend play-by-play on my Instagram/Facebook stories, not because I thought it would suddenly be interesting to anyone, but because we had all agreed to this new set of acceptable social behaviors and I was all about it.

Going into the weekend, my battery was fully juiced. So I went in hot, like so many others did. I was going to DO stuff, dammit—inspiring, Instagram-worthy stuff. Look at me, making lemonade out of lemons! Help people? Hell yeah (no idea how, given that I’m pretty much in total isolation, but I’d figure something out)! Can’t go OUT and do what you’re used to? Then stay IN and do what you never would have even considered if you weren’t inescapably compelled to. That will show this virus who’s boss!

The problem though, was that that kind of enthusiasm was unsustainable. I said it before: this last weekend was going to be a test. It was going to challenge me to adapt to big changes, accept my lack of control over about 97% of what’s happening, and come out of it with my sanity, patience, and optimism intact. But by rainy Sunday night, the battery had already gotten shockingly low. It was a mere 48 hours since that first virtual happy hour on Friday—all smiles and “We got this!” and mutual promises that we’d do it again, soon and often—and here I was, exhausted and feeling emotionally defeated. I had come in TOO hot, and I bonked with lots of race left to go.

Turns out, I wasn’t alone. By Sunday night, the same friends who had been tagging each other in quarantine memes and posting pictures of their bountiful stay-at-home wins all week, were letting the cracks show, talking about sadness and insecurity and confessing, “I don’t know how long I can keep doing this.” It was striking. We were all realizing that a single week of collective “We don’t know what we’re doing, but here we go, and we’re gonna crush it, and yay!” thinking—and successfully not murdering each other—is only the start, and in fact, a return to normalcy is nowhere in sight.

And all those dark and terrifying feelings that have been simmering under the surface all along, were bubbling up…

I miss my people. I long for boring, normal shit like pub trivia and hikes with friends and pumping gas without being in a state of borderline panic the whole time. I really might lose my job. I might lose my healthcare. I’m worried about how much food and toilet paper I have, but I’m also guilty about how much food and toilet paper I have. I’m annoyed about losing so much personal freedom, but also guilty about being annoyed, considering how little I appreciated that freedom before it was restricted. I’m scared… and I’m not guilty about that, but I am heartsick that my kids are scared too, and how can I lessen their fear when I can barely get a handle on my own? Will any of us come out of this unharmed? Avoiding viral infection would only be one win, and maybe not even the biggest one. How is my mental and emotional core ever going to recover from this?

But I can’t let that take over. Gotta keep swimming through these murky waters, as one little fish once taught me. And ya know, uncertainty is more bearable when it’s shared with others, and when it comes down to it, the rest of y’all are as clueless as me. I cope one day at a time, with deep breaths, heavy pours, crying to myself, laughing with others, and evidently, 1,700 words to express my cluelessness. Of course, the five words (and the snappy choreo) of our 2020 global motto does it more efficiently: We’re all in this together.

* I guess by “us” I’m talking mostly about middle class American families, because, as our old friend Ray Zalinsky would say, “That’s what I am, and that’s who I care about.” I mean, I care about more than just middle class American families, but then the quote wouldn’t work… Anyway, I know that the range of experiences that people all over the world are facing right now is vast, and I make no claim to speak for everyone (or anyone, other than myself, really). (more…)

I have a date!

Posted by Erin on July 12, 2019

The last time I blogged, it was to share news of my thyroid cancer diagnosis, which happened in late May. If you didn’t see that post, then, um, sorry for the spoiler. That post is here, and it should bring you up to speed on the excitement of my summer so far.

All caught up? Cool.

So now, this is the update many of you have been asking about. After weeks of insurance-related tomfuckery and scheduling bullshit (not bitter at all), I have finally locked in a date for my surgery: July 31.

I know you all must have follow-up questions bursting out of you like citizens of Hawkins on final approach to the Mind Flayer (if you don’t know what I’m talking about, get off your ass and catch up on Stranger Things already). Who wouldn’t?? Here’s what else I can tell you:

I’m still not 100% sure what the extent of the surgery will be.
- At minimum, half of my thyroid gland will be removed (fingers crossed that it’s the half with the tumor on it).
- At maximum, the whole thyroid and some number of lymph nodes in my neck hole will be 86ed. Fun fact: surgical removal of lymph nodes in the neck is also known as neck dissection. Neck. Dissection. Which doesn’t make me feel nervous at all.
- Or, it could be something in between. I’ll know more after my pre-op appointment with Dr. Rafii on July 23. Should I start a pool to see what it ends up being?
I will probably have to stay overnight in the hospital. Which means at some point, someone will probably have to watch me pee. TBD on whether or not I get to keep the gown.
Also TBD is whether or not I’ll have to do radioactive iodine treatment at some point after surgery. So keep the Geiger counters on standby, just in case…
Yes, I am aware that my surgery is taking place on Harry Potter‘s birthday. And yes, I will absolutely be bringing this up to Dr. Rafii at the pre-op, and discussing my request for a lightning bolt incision to be used.
And yes, I will definitely be having a “Say Goodbye(roid) to My Thyroid” party before I go under the knife. There will be food. There will be drinks. There will be a pinata. Other crazy fun stuff is guaranteed. And because I have a roughly 5% chance of suffering permanent damage to my vocal cords during surgery, we’re going to karaoke like the world is about to end. If you’re reading this, you’re invited.

So that’s the scoop for now. Thank you to everyone who has reached out with texts, emails, cards, hugs, and just awesome support in general. I am so grateful for all of you. I will continue to post when post-worthy things happen.

~EDB

So, there’s bad news and good news.

Posted by Erin on June 14, 2019

Which do you want first?

Just kidding, you don’t get a vote. You get the bad news first.

As if the universe hasn’t kicked me in the balls enough these past few years, I’ve just found out that I have thyroid cancer.

Fuck.

I had an MRI back in March for my MS (as I do every 6 months or so), and upon examining the images of my neck, an attentive radiologist spotted a nodule on my thyroid gland. It was totally by chance that it was discovered. I was sent for an ultrasound, which is pretty routine when strange lumps appear in/on body parts, and based on that look-see, was sent back for a fine needle aspiration (FNA) biopsy, a procedure that involved a trained medical professional stabbing me in the throat four times with a needle that she insisted was “tiny” but, I submit, WAS STILL A NEEDLE STABBING ME IN THE THROAT. It was…unpleasant. Basically the opposite of this:

The FNA was on May 13, and after that, I honestly kind of stopped paying attention to whatever was going on in my gullet. But then, on May 29, I got a phone call from my doctor, which is never a good thing. As one friend rightly observed, when there’s nothing wrong, they send your results in the mail; when it’s bad news, they call you. The doctor told me that the results of the biopsy showed that the nodule was malignant.

So, that’s the bad news.

Fortunately though, we can quickly take a U-turn and start heading back toward Goodnewsville right away. It turns out that, if you had to get cancer, thyroid cancer is a pretty good one to get. Which is such a weird thing to say, but here we are.

The type of cancer that has taken up residence in my neck hole is called papillary thyroid carcinoma, and of the four main types of thyroid cancer, PTC is the most common (about 80% incidence), is almost always asymptomatic (true here…I wouldn’t have known anything was wrong if it hadn’t shown up on the MRI), is highly treatable, and has a 98% cure rate when caught early (as mine was) and treated appropriately (as mine will soon be). Put simply, it’s the basic bitch of thyroid cancers.

Let’s briefly hit pause for a little anatomy lesson about your thyroid, because I’ve learned a bunch about it and you should too. The thyroid is a butterfly-shaped gland located in the front of your neck, just under the skin’s surface, warmly embracing your windpipe. You have one thyroid gland, though you’ll sometimes hear the terms “right thyroid” and “left thyroid,” which, understandably, may lead some to think that there are two of them. There aren’t, just two distinct sides (lobes); those are the butterfly’s wings. The thyroid gland has one job: to produce thyroid hormone. Thyroid hormone traipses all over your body, regulating your metabolism (i.e., the body process that converts oxygen and food into energy, or, if you’re over the age of 30, that thing that you wish still burned as hot as it did in your 20s). So, it’s kind of a key player. If you want to learn more about the thyroid—and who the hell wouldn’t?—this site breaks things down very well.

Okay, back to me. Because that’s why you’re here, really. What’s next for ol’ EDB?

The treatment for papillary thyroid carcinoma is old school: we’re just gonna cut that fucker out. No chemo needed, just surgery of the -ectomy variety.

Enter: Dr. Rafii, the ENT surgeon to whom I was referred. Michael and I were able to meet him just a couple of days after the diagnosis, and he seems great (though I suppose I don’t know how I’d tell if he wasn’t…). He went to medical schools I’ve heard of, he has done this type of surgery many, many times, he patiently answered our myriad questions, and he laughed at my dumb jokes about not wanting to put my thriving karaoke life in jeopardy with risky procedures taking place near my vocal cords. So in summary: I feel a-okay about letting him slice open my throat sometime within the next month or two.

According to Dr. Rafii, if a tumor is 1.5 cm or smaller, they’ll usually only remove the part of the thyroid gland with the nodule on it. This is called a lobectomy, or a hemi-thyroidectomy. Tumors that are 4+ cm almost always necessitate a full thyroidectomy. Anything in between is approached case by case.

My tumor is 3.4 cm (~1.5 inches), perched on the right side of my thyroid gland. Michael and I have named it Papillary “Pappy” Van Stinkle. And before you say, “Erin, what are you doing naming your tumor? Once you name it, you start getting attached to it!”, rest assured that this is just my silly coping mechanism and I will have no problem Harry and the Hendersons-ing the little asshole when the time comes.

So yeah, for me, Dr. Rafii is leaning toward removing the whole thyroid, since Pappy is approaching the 4 cm size, and on the ultrasound, its shape/borders appeared to be a little unruly. In other words, it’s not a nice, neat, well encapsulated lil’ tumor, and its sloppy composition means it’s possibly more likely to have allowed some nasty cancerous cells to escape into the nearby tissue.

So that’s probably what we’ll do. A full thyroidectomy will mean an overnight hospital stay, but life should return to normal pretty quickly after that. Plus, I’ll have a badass neck scar, which should earn me some serious cred on the mean streets of Redondo Beach. So I got that going for me, which is nice.

If, after the surgery, there is evidence of, or concern that, any cancerous cells might have been left behind, or might have escaped and gone all Richard Kimble elsewhere in my body, I’ll also need to do a round of radioactive iodine (RAI) treatment, which is bananas crazy and fascinating. Here’s the scoop and I’m gonna tell you: evidently, thyroid cells are the only cells in the body that will absorb the element iodine. We all take in harmless amounts of harmless iodine from various foods and environmental exposure without even noticing. But, if your thyroid disrespects you, its unique relationship with iodine can be used against it.

You wanna kill some thyroid cells, here’s what you do: consume a radioactive form of iodine which, when absorbed by the offending thyroid cells (well, any thyroid cells, really), will basically nuke them out of existence. Treating cancer with radiation isn’t that unusual, but in the case of RAI, when you ingest it, YOU become radioactive for a few days. Like, mediocre Imagine Dragons song radioactive. Like, doctor has to check you with a Geiger counter radioactive. Like, don’t go within 6 feet of small children or pregnant women radioactive. Like, Chernobyl but on a much smaller scale radioactive. THAT radioactive. But it’s, like, healthy for you. If you need to kill off thyroid cells. Which I might have to do.

Oh yeah. I also still have MS, and she’s been a little bitch this year too. But I won’t get into that now.

Soooooo….that’s what’s going on with me. How are you?

(I started this blog after my MS diagnosis 3 years ago as an easy and efficient way to update people about the update-worthy goings-on in my life. This qualifies, I think. For whoever is interested, I’ll keep you posted here. Much love ~EDB)

My Life with MS: Hey, do you like games?

Posted by Erin on September 9, 2018

Last week, I turned 41 years old.

I know, I know, that’s not OLD (argues everyone who is already 40+…), but no one can deny that it at least qualifies as “getting up there.” So at 41, I’m experiencing the anxiety that most do around this age: that my body—this machine that houses my mind, my memories, my personality, my intellect—is starting to break down, and I’m going to find myself functioning less efficiently, in increasingly noticeable ways.

I was 38 when I was diagnosed with multiple sclerosis. MS is a chronic, degenerative condition affecting the central nervous system. The bodies of people who have MS function less efficiently, in increasingly noticeable ways. Sound familiar?

I haven’t had MS for very long, so I’m still learning what my version of this nasty life companion will be. And at the same time, I’m facing the realities of getting older. Being 41, and having MS, I find myself frequently playing this fun guessing game I like to call—everybody shout it out with me, “Wheel of Fortune” style— AGING! OR! MS!

A couple of the clues are super easy. Grey hairs and wrinkles? Definitely aging. Bright spots that show up on fancy magnet pictures of my brain? That’s MS, final answer.

But everything else? Every other tingle, every surprising little jab of pain, every loss of sensation? Those are the big question marks.

I have what’s known as relapsing-remitting MS. That means that there are periods when inflammation within my body causes new damage or aggravates existing damage to my brain and spinal cord. These are relapses. I’ve had two. The first led to my diagnosis, and the symptoms included loss of coordination and a bizarre electric sensation that traveled from my neck to my tailbone whenever I put my head down, chin to chest.

The second relapse came about a year later. I took a nap one afternoon, and when I woke up, the left side of my face was numb. It was that fast. I thought it was just my face, but when I finally went and saw my doctor, we discovered that there was low-grade numbness down the whole left side of my body. An MRI revealed a new lesion (an area of nerve damage) on my brain stem. Point for MS.

Between relapses (which can last a few days or a few months or longer), there are remissions. These are periods when the inflammation decreases and symptoms (all or some) lessen (all the way or some of the way).

So, when I was in the midst of an active relapse, it was safe to assume that whatever new bodily glitch or deterioration of function I was experiencing was because of the MS.

But if I’m cruising along through a remission (like I am now), feeling pretty good (i.e., feeling like a normal, marginally healthy human), and something new and weird happens, my immediate thought is, “Is this just me getting older, or do I need to be worried that this is my zombie brain trying to eat itself again?”

Let me give you some examples.

Since my diagnosis, I’ve noticed that I drop things more than I used to. I don’t know if I’m actually dropping things more, or just noticing it more, but either way, gravity is knocking things from my hands more than I’d like. Aging or MS?

I occasionally lose my balance when I stand up too fast from a seated position. Aging or MS?

Sometimes, when…ahem…“nature calls,” the urgency goes from zero to critical in a matter of seconds, and God help me if I’m not near a restroom. Aging or MS?

I forget things. Like, whole chunks of conversations I had not very long ago. I struggle to think of words or phrases or names. Stuff that I should be able to fucking remember. I lose my train of thought midway through talking.

Aging?

Or MS? Is that you, Mr. Relapse? Have you left another spot on my brain?

Here’s the real kick in the teeth about this “Aging or MS?” guessing game: there’s no way to win it. Every time I ask myself the question, it’s because something isn’t working the way it’s supposed to. Trying to figure out WHY is just a thing we humans feel the need to do. It brings peace of mind, somehow, even if knowing why won’t change a damn thing.

Aging or MS? Does it matter? There’s no turning back the clock on either one.

Not yet, anyway.

I mean, aging is aging, and there’s not much any of us can do about that (without grand feats of cosmetic manipulation anyway, and sometimes, not even then). But with MS, there remains a glimmer of hope. Progress has been made already. In the last 20 years or so, there have been about 15 medications approved in the U.S. for treatment of MS. They’re known as “disease modifying drugs” because, while they can’t stop disease progression entirely, they can slow it down, lessen the severity of symptoms, and extend those periods of remission.

Ending MS and restoring what’s been lost. That’s the goal. And when that day comes, I hope you see me with a big smile on my face, full of gratitude for the chance to grow wonderfully old, in better health.

My Life With MS: Cheap date

Posted by Erin on June 13, 2018

I like to responsibly enjoy adult beverages from time to time, but man, sometimes MS makes me look like a terrible drunk.

Consider: the central nervous system—comprised of the brain and the spinal cord—which, ya know, is kind of a big deal as far as systems go. MS is a disease which damages the central nervous system, slowing or interrupting communication between the brain/spinal cord and literally the entire rest of the body. Alcohol is a chemical depressant, and it affects the central nervous system in essentially the same way, by slowing signals that allow one to function normally. There’s a reason why the physical exam my neurologist performs on me every time I go see her—stand on one foot, now the other, follow my pen with just your eyes, walk along this straight line—is strikingly similar to a field sobriety test. A person who has had too much MS can look an awful lot like a person who’s had too many Jack and Cokes.

When these two—MS and alcohol—get together, they can sometimes do a real number on me. When I say that MS makes me look like a bad drunk, I don’t mean that I appear to be an alcoholic (I mean, perhaps I do, but that has nothing to do with the MS). It’s the opposite, actually. I mean that there are times when, after (or even while) enjoying a SINGLE tasty adult beverage, I quickly devolve into the cheapest date you’ve ever known. One glass of wine, and suddenly, even though my mental faculties are still totally ship-shape, my physical capacities take on the appearance of a first-time drinker attacking the liquor cabinet with the no-fucks-given speed and recklessness of someone who has just learned that a comet is headed straight for earth and we’ve all got 45 minutes until it’s lights out forever. My speech gets slurred. When I try to pick up a fork, I find that my coordination has gone bye-bye for the night. And balance? Yeah, nope.

All of this, resulting from ONE drink. I’m 40 years old, and lord knows I ain’t new to the drinking scene. One beer should not have this effect. One whiskey sour should not turn me into that person who people look at across the bar and think, wow, time to cut her off. Especially when I’m NOT DRUNK. Not even close.

And yeah, I know this is totally a first world problem. I know that it’s ridiculous to complain about how I appear when I choose to partake in a recreational substance. “If you don’t like what it does to you, you could just not drink, you know.” Yep. I get it. Thanks!

But that’s not the point. The point is that I shouldn’t HAVE to stop doing something just because my body forgets how to function when I do it. I hate that this disease makes me hesitant to enjoy certain aspects of my life. It holds me back from being myself. It embarrasses me.

And the reality is that MS is degenerative. There are things I can do to slow the progress of the disease, but there’s not a way to repair damage that’s already been done, and it’s likely that my MS will continue to impair me. There may come a time when I look like I’ve had a few too many when I’ve had none at all. It’s fucking scary and it makes me angry.

But I’m not an angry person, so, for now anyway, I don’t let the fear and the anger take hold for very long. I talk openly about MS in the hopes of educating people who don’t know much about it (like me, before I was diagnosed). I continue to try and live my life as if I don’t have a disease. But also, I’m real with the people who are closest to me, so I can lean on them for help and understanding, and maybe sometimes, for literal, physical support. My tribe is pretty fucking great, and that’s about the best I can hope for. So I say, cheers to that!

My Life With MS: I don’t really run anymore.

Posted by Erin on April 12, 2018

The year before my MS was diagnosed, I was running a ton. I was training for a half marathon, running 4-5 days and 15-20 miles a week, feeling good. After a lifetime of hating to run long distances, I was really growing to love it.

Except for the falls.

Over the course of 2015, I fell while running, six times. No wait, I take that back. Five times. Once was while walking. These weren’t cases of bad footing on uneven ground, or tripping on a curb or crack. These were just a foot not quite clearing flat ground, and me going down. Hard. It’s amazing that I didn’t injure myself more severely than scrapes and bruises. Well, there was injured pride too, I guess.

I found things to blame. I fell because I was out of shape (not really sure exactly how that computes, but I convinced myself it might be true anyway). Or because I had bad running form (which I still hold as true, though it was not the reason for the falls). Or maybe I was just clumsy (which I didn’t really believe, but it was an excuse that I could handle).

I didn’t know it at the time of the falls, but my MS was likely at fault. You see, numbness/tingling in the extremities, and loss of coordination are common symptoms in MS, and for many people with MS, symptoms are exacerbated by heat. Including rises in body temperature. Ya know, like when you’re 6 miles into a 10 mile training run in July.

Falling sucks. It hurts. A lot. But you know what I think is actually worse than falling? WORRYING about falling.

I didn’t put the kibosh on running immediately after my diagnosis, but right away, I did start scaling back. I quickly reached the point where I wouldn’t go for more than a couple miles at a time, and not more than a couple days a week. Then less, and less. These days, my running routine is practically nonexistent. And if I do rally enough to lace up and go, the minute I start to feel my toes getting numb, or feel like I’m not picking my feet up enough, I stop.

I could argue that it’s for my own safety, and in a roundabout way, I suppose it is. But concern for my safety isn’t what keeps me from running. It’s fear. I’m afraid I’ll fall. I’m counting on it. And the fact that I’ve let that fear dictate my choices, that pisses me off. That hurts more than scraping across pavement.

Anyway, this isn’t meant to be a sympathy ploy. I don’t want anyone to feel sorry for me, just as I do my damnedest not to feel sorry for myself. Or, go ahead and feel sympathy if you want to, but then do something about it. Pity is meaningless if it’s not joined by action, and there are lots of things you can do to take action. Learn about MS. Ask someone who is living with it to tell you about it. Make a donation to the National MS Society and help fund research into MS causes and treatments.

I don’t run much anymore, but maybe in my lifetime, I’ll see medical advances that will allow me or other someone else to keep doing the thing they love doing, without falling, and without fear.

When Doody Calls, My People Answer

Posted by Erin on April 24, 2017

Early last week, I wallowed in the depths of a considerably rough few days—there was the work stress, the setbacks in puppy housebreaking, the violently deceased iPhone, the breakup, the “Am I having a relapse?” anxiety. So, I did what people do these days when they’re in the depths of those rough days: I took to Facebook, ready to unload some of my sadness and frustration.

In general, I try to avoid airing my personal struggles on social media (talking about my health, in particular, violates one of my Facebook Commandments). Don’t get me wrong, I have nothing against people who do use Facebook as a personal venting platform (ya know, within reason); I think it can be a good way to purge your woes to supportive friends who you might not be able to sit down and purge to in person over a box of wine (don’t judge me!).

So yeah, this was one of those times for me, though I didn’t really have a plan for what I wanted to say. “WAAAAAAAHHHHHH!!!” seemed a little overdramatic and I didn’t want to be guilty of “Vaguebooking,” so I dug a little deeper.

And whaddya know. As I began writing, the tone and the purpose of what shall henceforth be known as “The Doody Pile Post” began to take shape, like a Voltron of emotions. My intention morphed, like a Power Ranger of catharsis, from a vent session into an exercise in putting things into perspective, and thereby putting myself into a better state of mind. Like a Punky Brewster of, ya know, everything.

“Maybe the world is blind…” [d’do-do-do-do-do]

And it worked. Immediately upon posting, I started to feel better. Buh-bye, negativity.

But then something more happened. In the post, I had shared that I would be participating in the Walk MS Long Beach event next Saturday, something that I anticipated would extend the good-feely-ness I was gunning for. I made a brief and pressure-free request for friends and/or family to come out and walk with me (if you know me, you know I’m a “the more the merrier” person through and through), or to donate to this cause that means so much to me.

And guys, you all went bananas. In the best possible ways.

Firstly, the messages of love and support that so many of you left in the comments brought tears to my eyes. And it was nice because they were happy tears instead of the sad, ugly kind that I’d been leaking all day previously.

Next, I got two new teammates: Nicki, who by lucky coincidence will be in LA from Oklahoma next Saturday, and freakin’ Mona, who lives in San Jose, but said “Fuck it” (probably literally) and booked a flight to come down to LA just to walk with me. Commence the bursting of my heart.

I also watched my Walk MS fundraising page start lighting up. Donation after donation came in with the kindest messages of comfort and encouragement, and I was blown away. Within about 48 hours, I went from a big ol’ goose egg to over $1,300 raised, and shot up the fundraising leaderboard to #12 on the list. This was so beyond anything I expected or anticipated, and it is straight-up reaffirming my faith in humanity. And more than that, the generosity of my friends has gone even further to show me that yeah, my life is good and I’m pretty damned blessed.

So thank you, friends and loved ones. Thank you for being there to hold me up when I was down, for making an investment in a cause that may very well be pivotal in improving and prolonging my days on this planet, and most of all, for reminding me that yeah, even though the bad, doody-filled days can’t be avoided, they pass, becoming less and less stinky as they recede into memory.

(By the way, if anyone would still like to register to walk with me on April 29, or donate to my fundraising efforts, you can do either/both here: www.nationalmssociety.org/goto/EDB )

My Second Jackpot

Posted by Erin on July 22, 2016

Last month I got all gushy over Kenzie, my beautiful firstborn daughter, turning eighteen. Well 2016 is a year of milestone birthdays for the De Baets girls, as today, Caitlin (aka Baby Girl, aka Cait the Great) turns thirteen years old.

(Before I get any further, I want to heap some thanks and admiration on Scott, who is such a wonderful father to our girls. He kind of got relegated to footnote status in my post about Kenzie, so I want to make sure I recognize him at the start of this one. Thank you, Scotty, for giving so much of yourself to our daughters. They’re beyond blessed to have you as their dad.)

The big one-three is a milestone for all adolescents, marking the official entry into teendom. It’s a scary but exciting time for them, and if memory serves (iffy), comes with no shortage of chaos and confusion. Am I still a kid? Do I get more privileges now? Shit, will I have more responsibilities now too? Will I ever again wake up and not find new hair or zits somewhere?

Me? I’m delighted that I can now say, “I have two teenage daughters.” To be clear, I’m grateful for the convenience of lumping them together under that description, not necessarily for the reality of having two teenage daughters, which, frankly, is kind of terrifying.

But also kind of not.

I loved my babies as babies. In my experience, babies are (for the most part) fun and sweet, and their heads smell good, and their tushies don’t smell as good but at least they’re cute, and they make adorable little sounds (the babies, not their tushes, though an argument could be made for that too), and they’re super portable and you can pretty much make them do whatever you want. Kids are awesome too, for a lot of the same reasons and many more; watching your kids as they learn and try things and develop personalities and interests is thrilling as a parent. That’s a little person forming there! A little person that YOU made!

Seriously, how could you not love this?

I’ve loved my children with every ounce of my being for their entire lives, but—and this is where it might sound a little weird/creepy to some—I feel like it’s been the last few years when I’ve really fallen in love with them. Hear me out.

If you’ve ever been in love with someone, you’ll know what I’m talking about. It’s that feeling of pure, heart-leaping joy that you get when you see them walk into a room (all made even heart-leapier when they’re just as happy to see you). It’s wanting to hear them share the details of their day, even if you already know what they did. It’s longing for their company, wanting to spend time with them—doing something or doing nothing—and it’s feeling that empty space inside when you’re missing them. It’s hating some things that they do without remotely disliking them. It’s taking an interest in what they’re interested in and conversating (it’s a word) about things—anything. It’s having inside jokes and laughing until it hurts. It’s raw vulnerability and the safety of knowing you can talk to them about anything.

This feeling isn’t exclusive to romantic relationships. It’s how I feel about my daughters, and it’s a feeling that didn’t start to really form until they got a little older and we started experiencing the world on closer to the same level. I don’t just love my grown-ish kids, I’m in love with them.

So today I think about Caitlin, one of the two loves of my life, and how awe-struck I am by the person she is. I mean, maybe I shouldn’t be so surprised, because her older sister is pretty fucking remarkable too, but the cynic in me constantly wonders how I—profoundly flawed, nowhere-close-to-having-my-shit-figured-out Erin—could have hit such a jackpot. Twice!

But there she is, my second jackpot. She’s a young lady who is immensely talented and smart and funny, all without a trace of arrogance. Caitlin is a kid who isn’t afraid to be weird and goofy and geek out about stuff and laugh at herself (God, she has a laugh that can turn my day around), but who can also be poised and well-spoken when life demands it. She loves music, can’t control her excitement when a song that she likes comes on (even if it’s on a playlist she knows by heart), and loves to sing along like me, though she’s way better at it. She taught herself how to play the ukulele and to write in calligraphy and to throw a devastating change-up and to rap “Guns and Ships“, and that was all just since Christmas. 13298062_1005129962912324_447479028_n

Caitlin is so sensitive and her heart is so open that it is literally making me cry right now just thinking about it (cue her saying, “Yeah, but you cry at anything!” Guilty.). There have been observations that have come out of my youngest daughter’s mouth within the last year that, even when they’re motivated by her response to terrible evils, are so full of love and wisdom that it makes me speechless with pride.

When Caitlin loves, which is almost always, she loves deeply. When she hurts—and she does, as all of the biggest-hearted people do—she hurts deeply. Which devastates me, but also fills me with such thankfulness and hope to know that there’s a person like her in the world at all, let alone right here in my world.

In Kenzie’s 18^th birthday post, I did a little self-congratulating on getting her to adulthood, and I stand by that achievement. I know that we’re not quite there yet with Caitlin, but I know the five years between now and when she rings the adulthood bell are going to fly. They always do. There’s a lot to celebrate about getting to thirteen, but I also know we haven’t seen the last of the tough days either; honestly I’m not sure we’ve even scratched the surface yet (there’s the cynic again).

But that’s okay. If Caitlin is who she is at this point, after just thirteen years of learning and growing and questioning and laughing and crying and loving, I am nothing but hopeful and eager for who she’ll be in another five, or thirteen, or thirty years. She’s already way ahead of the curve. And yes, I’d think that even if I wasn’t in love with her.

Happy birthday, Baby Girl. You astonish me every damn day, and I love you bigger than the universe.

I Made an Adult!

Posted by Erin on June 3, 2016

If you see me today, there’s a good chance I will be crying. It’s okay, I’m fine. It’s just that my firstborn turns 18 today.

I’m not sad about it. What would be the point in that? Being sad won’t make her be a baby again, and I don’t think I’d want her to be anyway. Don’t get me wrong: she was an awesome baby. But I sort of totally love the big person she is even more than I liked the baby.

Come on. Are you serious? That face!

No, the tears come from a deep emotional response to the reality that I* made an adult. She made it, she survived, in spite of no shortage of fuck-ups on my part as her mother. Shit, she’s reading this, I probably shouldn’t say fuck-ups. Wait, she’s an adult now, it’s all good.

Let me take you back for a minute.

I went into labor around 6 PM on June 1, 1998, and I remember being kind of excited (amidst many other emotions) that it looked like the baby would be born on its due date, June 2.

Nope. She arrived at five minutes past midnight on June 3, and that—the simple act of being born that way—would establish a few key attributes about our Kenzie girl:

She’s often late (I might be partly to blame for that, both genetically and practically).
She does things on her own terms.

Kenzie has always been an old soul. From the time she was very young, she has had a wisdom that belies her chronological age. She would gravitate toward adults before other kids, carry on thoughtful conversations with no hesitation, and she has always seemed miles apart from the immaturity that many of her peers have lingered in over the years.

Make no mistake, however; she is a goofball through and through. darth kenzie But in some ways, I think even that—the undaunted embrace of her own silliness/nerdiness/awkwardness— is a testament to her maturity; she approaches life’s interactions with the kind of “I don’t really care what anyone thinks” attitude that some people twice her age (*cough, ME*) still struggle to adopt. Her confidence astonishes me, in the best possible ways.

Kenzie is fiercely loyal and exceedingly thoughtful. She puts others before herself on a near-daily basis. Parents will get this: did you ever have those moments, when your kids were very small, when you’d stub your toe or hit your head or something, and your little one would toddle over to you, aware of your pain, and give you a kiss, maybe tell you, “It’s okay, Mommy.” That’s Kenzie with everyone she knows, still, to this day. The past couple of years have been pretty tough on our family unit, as we continue to adapt to our new “normal,” and there have been times when I’ve broken down. To have my teenage daughter, who has every right to be wrapped up in her own dramatic world (I acknowledge and respect wholeheartedly that a teenager’s world IS full of drama), put her arms around me and tell me, “It’s okay, Mom”—there’s no describing it. How in the world did I earn the blessing of my children?

[I’m totally bawling right now, if anyone is keeping track…]

Kenzie’s friends mean everything to her. She gives gifts for no reason other than to show she cares. She listens to other people’s litanies of ways that life has knocked them down, even on days when she herself feels that life pitilessly has her against the ropes too. She is a profoundly better sister to her little sister than I was to any of my siblings (sorry, y’all), protective and nurturing of Caitlin, and yes, tough when she needs to be. It’s not to say that Kenzie doesn’t ever have fights with her friends or family. She is still human, after all. But even through those, she speaks her mind and doesn’t back down from her convictions and says she’s sorry when sorry is called for.

Being Kenzie’s mom has been mostly wonderful. She is smart and so funny and seeing her tell a story about something she’s excited about is one of the most joyful things you can witness.

Of course we’ve gone through valleys with the peaks (human, remember?), but even during the worst times that I can remember over the last 18 years, the difficulty for me, as her parent, was that she was hurt or angry or struggling with the things in her own head, and I couldn’t get in there far enough to fix them. She’s always been like that, introspective. I remember when she was going through a particularly rough patch around third or fourth grade, one night she told me, “I just feel sad and I don’t know why.” It broke my heart, for obvious reasons, but it also struck me what a very wise yet simple feeling that was for a child to identify and communicate. It was around that time that I really invested myself into practicing empathy, a life trait that I work really hard to instill in my kids whenever I can: making the effort to, if not understand, at least recognize the pain that sometimes doesn’t have a name, in yourself or in others. There are some thing that we won’t be able to fix, not always right away, anyway. But if we can learn to call those things out and acknowledge that we “don’t know why,” they become less scary. My daughter taught me that.

People who have known me for a long time know that my parenting philosophy is this: I strive not to screw my kids up too much, I want to screw them up just enough. I say it half-jokingly, and largely as a way to forgive my maternal shortcomings with a little levity, but I do think it holds some truth. We have to prepare our kids for the world, a world where we won’t be able to protect them all the time. Many years ago, I heard parenthood described in another, similar way that really resonated with me: our goal as parents shouldn’t be to raise good kids, it should be to raise good adults. That’s what they’re going to be for the majority of their lives, so that’s where the focus should be. Well I don’t know how it happened, and I would never dream of claiming all—or even most—of the credit, but I look at Kenzie today, and I’ll be damned. She’s a pretty good adult. Looks like we screwed her up just right.

So I wish you the happiest of birthdays, Little Girl. I am amazed by you, so fucking proud of you, I love you bigger than the universe, and I can’t wait to see what’s to come for you. Thank you for making me a mom and then teaching me how to be one.

(*I don’t want to close this post without throwing heaps of praise, thanks, and crisp high-fives to Scott. Scotty, you are a remarkable father, rightly adored by your daughters, and I am fortunate to have you as my co-pilot on this parenting journey.)