To Have and to Hold

I do not have MS, but MS has me.

The above is somewhat of a twist on the usual adage uttered by those impacted by this absolute asshole of a disease.

For those unfamiliar with it, MS stands for multiple sclerosis. There are a few different types of the disease, but they all boil down to a person’s immune system attacking its central nervous system, thereby short circuiting a good chunk of what the brain tells the body to do. It’s like the frayed charging cable for your smartphone: Sometimes you can jiggle it juuust right to get the wires to make contact and charge the phone (what it’s supposed to do) but most of the time it just sits there, the juice lost somewhere in a bad connection.

And sometimes it fights back, like with my wife’s legs.

When we met, Nic was a triathlete and phenom at running 10k & half marathon distances. Our first dates included a couple of long-ish runs around lakes or area running trails. The proposal came the evening after we participated in a relay marathon. And the wedding? That was in the middle of the 2009 Las Vegas Half Marathon, where we jetted up to LV the day before, ran, got hitched, and jetted back to be at our respective jobs the next day without telling a soul for two weeks. And after that, we ran and biked and swam and had almost enough adventures to last a lifetime—even after she was diagnosed with relapsing remitting MS in early 2011, roughly a year after we married.

Explaining how MS and its symptoms work can be complicated, so I use an analogy of sorts involving tides at the beach. We know that when the tide comes in, the water level is up and that all kinds of junk can wash in with it. Jellyfish, seaweed, and anything else in the ocean. When the tide goes back out, some of that junk remains on the beach, effectively destroying what was a pristine stretch of sand. Relapsing-remitting (RR) MS—probably the most common form of the disease—works in that similar fashion: Tide comes in, symptoms flare, tide goes out, everything’s more or less back to normal. But other forms of the disease—the progressive forms—are more devastating. Tide goes in, symptoms flare, water level stays put; that’s the new normal. Then the tide comes in again, symptoms flare, water stays put; that’s the new-new normal. Repeat.

That I know of, there are just two progressive: Primary and secondary. Primary is the most aggressive form of the disease with flares in symptom activity occurring several times over a relatively short period of time, like a year Secondary progressive is less frequent in flare-ups; Nic’s not had a serious flare-up in probably three years. But it was a big one exacerbated by an infection she picked up 12 or so months after the birth of our second child. It literally crippled her.

Prior to that infection, Nic could still walk and get about OK on her own. But once it hit and her fever spiked, she was paralyzed. As the fever subsided, the paralysis abated but left a scar. First, she could walk with a cane; then, hobble with a walker; now, she’s in a wheelchair with immense, almost constant pain in her legs. This pain is oftentimes accompanied by spasms in her legs, uncontrollable twitching that pays no mind to where she is or what she’s doing: Sitting, sleeping, and so on.

Nic likens her legs to those of a Barbie doll: They’re stiff and don’t bend. But, as her husband and caretaker who transfers her in and out of bed, wheelchairs, toilet, and elsewhere, I find them more like a firehose. Sure, her legs are tough to bend and move, like a Barbie doll’s, but when a spasm hits—and they do and at always the most inconvenient or inopportune moments—her legs fight back with such strength and ferocity that any efforts at bending or adjusting are unravelled in an instant with the need to wait for the spasm to pass before starting over again.

To say this is frustrating (for me and even more-so for her) is a serious understatement.

Nic is my second wife. That first marriage disintegrated in a horrifyingly dramatic fashion over several months, but it taught me a lot what it takes for a marriage to be successful: reciprocity—give and take. And, as Nic and I eloped, I thought seriously about the vows a couple takes when they wed:

I take you to be my wife, to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, until death separates us.

Folks whose own marriages have fallen apart have blamed something or other on their spouse, or something that happened involving their spouse, to which they quip that “they didn’t sign up for.”

But, yeah, they did.

Those vows are kind of all-encompassing, covering SO much territory—all the bases so to speak. So when Nic was diagnosed with this disease, we learned more about it (we were both somewhat familiar with the basics, both of us having done charity bike rides for MS) and how, as a couple, we could work with and for each other as our life together would be changed and challenged in ways most folk (thankfully) would never be able to comprehend.

This isn’t to say it’s been easy. Despite our respective schooling and analytic ways of looking at practically everything (we put more research into running strollers than we did for daycare for the first kid), we still make a lot of boneheaded decisions when it comes to our relationship. Each can take the other for granted or not speak in the right tone or do any number of other things that cause additional discord not already impacted by the MS factor. But we’re still committed to one another.

Last December marked ten years since we ran through the streets of Las Vegas shouting, “Bride & groom, coming through!” The original plan was to go back to Vegas to renew our vows, this time inviting our families to bear witness. Life, however, had other plans, though we still renewed our vows and invited family and friends. The ceremony was held in a side venue at our favorite coffee shop, and, while Nic was able to stand for the ceremony, she did so with the support of a walker; her dad had pushed her wheelchair down the aisle to get her to the alter. Sure, it doesn’t sound idyllic, but, for us, it was perfect, just like the first one.

A month later, there are still spasms in Nic’s legs, and there are spasms in our relationship that cause us to have to stop and wait for things to settle down before we can come up with a plan, let alone move on and execute that plan.

For me, I continue to reflect on previous mistakes, as well as those vows. I cannot hold Nic the same way I used to—not physically, anyway. There’s a lot I have to improve upon as a husband, a father, a human being. But I have a pretty good guide through those vows. And I’ve a pretty good anchor to what’s important in the form of Nic herself.

While I don’t “have” her like we have most things in life, I’m glad I have her as a part of mine. And that I will cherish and hold onto long after death separates us.

No NaNoWriMo Fo Me

Every November, I have the intention of taking part in NaNoWriMo, and every November, things fall through. At least this year it’s only the ninth before I have occasion to pause and think, “Crap, I missed it again.” At least those intentions—along with many others for similar intents—have paved a lovely, multilane, multilevel highway.

So, while this won’t be anywhere close to a thousand words, it is at least me sitting down to write, to produce something instead of merely consuming content from the vapidity that is social media. Here goes.

The first full week of November was a naturally busy one, but it was also a productive one in that I not only got all of my classwork and grading done(!) but I also got in 3+ hours of training in: Two sessions on The Sufferfest, a mountain bike ride, and an extra run on Tuesday night. The Boy & I also got to bear witness to a bonafide steam train barreling down the tracks through town.

But MS remained its constant, aggravating self. Nicholle & I, however, have started to nail down a routine for her, though, which helps. As unpredictable as MS is, when we can know what to expect, it helps. It helps even more when those expectations are on-point, and no curve balls are thrown our way. Most days kind of go like this:

Six AM wake-up to get ankle-foot orthotics (AFOs) on Nicholle so she can get up and be somewhat mobile; it’s time consuming and painful for her, but she’s a trooper. Make breakfast for her, the kids. Make lunches for her, the kids. Get myself cleaned up, hop on the bike, and get to work. Occasionally on time, too.

In-all, it makes for an exhausting day, an exhausting week, an exhausting existence because, let’s face it: This is not “living.”

Sure, it’s not being diagnosed with an incurable neurological disease that slowly destroys every bit of normalcy, independence, and humanity from you. It’s being tethered to it. Bound to it. Devoted to it. Til death do us part.

So I soldier on as husband, as father, as caretaker, as occasional whatever else time may or—as in the case of NaNoWriMo, yet again—may not allow. I still have this little corner of the web to write whenever time permits, no matter the month.

As always, thanks for reading.

@ Capacity

The other day, I forced myself to make time to go outside and play. It was ahead of some rain, and Earth Burger was debuting some new menu items, so it seemed like the perfect excuse/opportunity to go ride at Mac. And it was for a little bit, but then it hit me: I was operating at maximum capacity.

Far Side cartoon: Mr. Osbourne, may I be excused? My brain is full.

Mountain biking (or anything in life, really) requires split-second decision making. When I first took up the sport, I was unable to really get into or enjoy it because I was without insurance; I couldn’t afford to get hurt. Once my insurance kicked in, though, mountain biking became fun. Really, really fun. Or for a while, anyway.

Fast-forward to now. I’m back to no longer being able to afford to hurt myself (I mean, I have insurance, but the insurance I have is crummy, at best.) but it’s more the myriad other things on my plate: Mortgage. Small children. Wife. Wife (same one) with debilitating neurological disease. Stresses of job. Stresses of serving as sole caretaker & caregiver for aforementioned kids & wife. All of these things play continuously in the back (and often forefront) of my mind, inhibiting my ability to oftentimes be present for much of anything. And when that something is tearing or even tooling around a trail, it’s tough to do. It’s near-impossible to be in the moment when the mind is constantly reassessing prior moments to find means of improvement while also planning out the moments ahead: Dinner or whatever meal is next up. Clean-up. Kids’ hygiene. Wife’s hygiene. Own hygiene? Work obligations. Tending to the house. The car. The dog.

Repeat.

I’m regularly told to take care of myself, too. And I try, I really do. But finding moments to be in the moment, on or off the bike has become increasingly rare, and the only way to find that time is to sacrifice something else, and it’s just not something I can do in good conscious. So I’m trying to find ways to adapt.

For most mountain biking, there’s a great set of trails at a park some 20 miles or so from home at McAllister Park in San Antonio. On a good day, I can make it from the garage to the trailhead in just over 20 minutes or so. Yet, lately, I’ve been exploring some areas in a creek bed just over a mile from home. I can (and do) ride there. It’s not as extensive of a trail network as what’s offered at Mac (and nothing like Flat Rock Creek, a private ranch reserved for off-road adventures a good chunk of the year, but that’s an even rarer thing, given its sixty-something miles one-way trek), but the creek bed is close to home, and I can get in a good ride with some fun, semi-technical stuff, as well as lots of climbing—in about the same time it would take me just to drive to the park and back. And, to boot, through riding down there I’ve come to meet a couple more riders just in my neighborhood.

My brain, much like my plate, is very full. While it does inhibit me from being even a quarter as skilled as many of my peers, I understand it is not my defining factor. It’s but one tooth in a cog, and sometimes, one just needs to simply shift gears to go faster, do better, be better.

Thanks for reading.

Better than Batman

When I was at university, I would schedule my classes to allow for long breaks in between in order to have time to do homework, read ahead, or (more times than not) go for bike ride. UTSA’s 1604 campus was on the edge of some of the best riding outside of the Texas Hill Country, and, at the time, the development now virtually decimating the area had yet to commence.

My time on the bike was not all fun and play. Sure, it was that, but I’d find I did some of my best thinking while just riding along. One time that stands out was following a literature class, where I mulled over the writing prompt in my head, and, by the time I made it back to campus and in the rec center for a shower, had the outline of a first draft completed in my head.

Fast forward fifteen years, and I’m still doing the same thing: Thinking (sometimes too much) while on my bike. I’m not one to wear earbuds outside (too much traffic to listen for) and inside…well, the music seldom does much to quell what comes to mind. Such was the case a week or so ago while working through a Sufferfest workout titled “Batman Intervals.”

Sometime around the fourth or fifth round, I got to thinking about the sundry iterations of Batman filmgoers have been subjected to over the years, most recently Ben Affleck’s take. While Affleck is purported to have been the bomb in Phantoms, yo, I have a hard time seeing him as a superhero the likes of Batman—or Daredevil, but we’ll not go knocking on that door tonight. Bruce Wayne, sure, but the Dark Knight?

Still, it was an exchange of “dialogue” in 2017’s Justice League between Affleck’s Batman and Ezra Miller’s The Flash regarding superpowers, and…

…that got me to thinking how Batman can always retreat into his money, much in the same way the Tom Buchanans could, would: They were careless people, Tom and Daisy—they smashed up things and creatures and then retreated back into their money or their vast carelessness, or whatever it was that kept them together, and let other people clean up the mess they had made*.

Bruce Wayne is under no obligation to be Batman. It’s what rich people can do if they get bored with being rich or making their own space companies or raising polo ponies or whatever it is that rich people genuinely do these days. Batman is, for all intents and purposes, a volunteer—an overzealous Citizen On Patrol. If he’s not feeling terribly super on any given day (er, night) he can just not show up. No one holds him accountable for what he does or doesn’t do.

And that’s where I’m better than Batman.

I don’t have his gadgets or cape & cowl—and certainly not his trust fund—but I do have the accountability to be my best self all the time for the people who genuinely need and depend on me. And if you, too, are a caregiver for a spouse, a child, another family member, or even a friend, you, too, are better than Batman.

There is more to say, but it’s late, and it’s been a tough day saving the world in some form or fashion. And I get to do it all over again tomorrow.

Thanks for reading.

* – OK, sure, Wayne Industries set up the pay account for the guy who got his leg crushed at the beginning of Batman v. Superman (or ending of what Superman movie that was where Superman uncharacteristically kills Zod), but that’s likely the exception not the rule—and turned out to be little more than a plot device.

My First Blog Post

What Was Old
Is New Again

Years ago—some ten or more—I had the notion to start up a blog with the intent of chronicling my journey as a triathlete because who wouldn’t want to read that?

More to the point, who would want to read that?

So, since Blogger went by the wayside of a non-secure site, I’ve moved my site and my ramblings over here to WordPress. Not that the content will be that much better than what it was over yonder, just know there’s likely to be a lot less triathlon-related banter and a lot more of me just bearing my soul, one keystroke at a time.

More will come in the days to come, but now I must sleep. I hope you understand, and I hope you’ll come back, too.

Regardless, thanks for reading.