Initially, I was exercising my self-flagellation skills. I had a lousy week last week and wanted everyone to know it.
Then, about 250 words in, I realized something: No one wants to read this.
So I started over.
The Life Reset Button
You must understand, starting over represents a moral victory, for me.
My usual reaction to failure is not a healthy one: I get frustrated, decide that I can’t succeed, and quit.
I am not a good forward thinker. I am forever second-guessing my past decisions instead of planning new approaches. Lor refers to this phenomenon as “getting stuck.” I mentally chase my tail, trying to figure out what I did wrong, afraid to act again for fear of a second failure. So I end up not doing anything.
Well, that isn’t really the whole story. Actually, I used to think about my failure while over-eating comfort food and drinking beer. But, that isn’t really an option anymore, is it? Due to the whole “6-ounce stomach pouch” thing.
The hardest thing I am having to learn post-surgery is to let failures go.
If I have already blown it, I am no longer in a position to retrieve my failure. I have to accept it, try to learn from it, and do better next time. Just mash down that “reset” button, and head back the way I came, trying to figure out just where I went off the rails.
C.S Lewis said it best: “We all want progress, but if you’re on the wrong road, progress means doing an about-turn and walking back to the right road.”
So, what can I do in response to a week where I didn’t write, barely went to the gym, and made some pretty shaky dietary choices?
Nothing. Nada. Not a darn thing.
But, today is Monday. And today I can write my blog post, cook a healthy set of meals, and head back to the gym. And then I can set my sights on Tuesday.
It seems simplistic, but analyzing failure will only take you so far. At some point, you actually have to put yourself back in traffic and start doing again.
So, that is what I am going to do. No clever observations, no folksy words of wisdom today. Just get back on that horse and wait until the next time it throws me off. All I can hope for is that I go a little further before the next time I come crashing to the ground.
Our nutritionist, Patti, said it like this: “You are going to have good days and bad days. Just make sure that your good days outnumber the bad ones.”
Guess I need to start stringing together some good days, then. I am in a bit of a bad day deficit.
First, thanks for the emails, Tweets, and Facebook posts. Last week’s major seizure was totally unexpected, and I appreciate everyone’s concern and encouragement.
What was most interesting to me, though, was the amount of support Lor received. Messages ranged from “You go, girl!” to “EWWWWW! Do you really have to…?”
The short answer is yes, she does. Lor does periodically get to essentially change the diapers on her middle-aged husband.
Let’s talk about the role of a caregiver for a moment, shall we?
The Anchor Below The Surface
I might not be writing this today without the help of my caretakers over the years.
Seriously. As a person who has dealt with not one but two disabilities (epilepsy and morbid obesity), I have a certain perspective on this. And I simply could not enjoy the life I do without people willing to make my life possible.
Without Lor’s assistance, my ongoing recovery from obesity would not have been half as successful. She has acted as a fitness coach, a cheerleader, and a drill sergeant. Meals have been prepped. Visits to the gym and to the doctor have been scheduled. Dire threats have been issued about the potential results of bad food choices. Lor has alternately led the way, stood beside me, and gotten behind me to power me over obstacles.
Anytime I have begun to drift away from new lifestyle practices, Lor has kept me in place – an invisible anchor below the surface of the stormy seas of my waxing and waning enthusiasm.
My success in beginning to overcome obesity is entirely due to her help. But even that pales when compared to what caretakers have done for my other disability.
The Never-Ending Struggle
It is one thing to work in concert with someone as you help them overcome an obstacle. You can encourage success and share the pain of failure as you work toward a common goal. At the end, you can look back and congratulate yourself on helping someone reach what they could not do on their own.
It is something else entirely to be acting as the caregiver for someone who is never going to “get there.”
Those caring for loved ones with degenerative conditions have the loneliest jobs of all. The only thing you can do is to try to improve the quality of life within the constraints imposed by illness.
These are the people who get to turn over bed-ridden parents regularly. Who have to schedule their lives around patients who can’t be left unattended. They might end up watching as a loved one withers away from cancer or Parkinson’s. Some are no longer recognized due to the effects of dementia or Alzheimer’s.
And, yes, these are the folks who get to clean up after seizures and other humiliating losses of bodily control.
Caring for someone with a degenerative condition is no joke. Though Lor shoulders the majority of the burden for my care, it requires assistance from a whole lot of other people. A team of caregivers, if you will.
And, in the end, what does all this effort result in, anyway?
Return on Investment
Well, Misdirected, for one thing.
If not for the assistance (and insistence) of my Mom back in 2008, I would never have received my Vagus Nerve Stimulator. The VNS has been the single most effective treatment for my seizures to date. Before the VNS I had clusters of seizures every single day.
If not for the support of my best friends I would not have gotten over my depression and suicidal urges.
Without the encouragement of my Father, I would have been afraid to try to “increase the size of the box” of my limitations.
Without Lor’s constant, daily work to facilitate my life, I would be sitting in a corner, staring at a television.
Instead, I don’t have enough hours in a given day to keep up with my projects. When I am not working on my novel, I am studying for my PT certification. I spend time working in advocacy and support for those with epilepsy and those going through bariatric surgery.
And, of course, I write the words you are reading right now. About 100,000 of them every year, in fact – on Misdirected alone.
None of this would happen without caregivers.
If you are a caregiver, sincerely, thank you. You are shedding light into very dark corners. And, on behalf of those of us whose conditions make us unable to communicate any appreciation to you, let me say this:
You are single-handedly changing someone’s world for the better.
We will be celebrating Mom’s Day with my half of the family today, Monday, May 15. Accordingly, Misdirected will be receiving a one-day “Mother’s Day Delay” and will be coming at you again on Tuesday the 16th instead.
It had been a great series of days. The Run For The Zoo 5K was checked off on my bucket list. I made my goal weight, only 10 months after my bariatric surgery. Finishing the entire first draft of my novel Inheritance was just about done. I felt as if I was riding a great wave of momentum.
Which, of course, is when my “condition” chose to rear its ugly, unwelcome head.
Still No Cure For Epilepsy
8 AM yesterday I was chatting with my father about our plans for Mother’s Day. At 9 AM I was collaborating with the Ash Falls team about upcoming releases. All seemed right with the world.
At 10 AM, my left arm started twitching. I stopped what I was doing (As I always do anytime my body starts doing something unusual), and told Lor I was going to need my magnet.
My what, you ask? Those of us with a Vagus Nerve Stimulator implanted in our chest can run a kitchen magnet over the site of the implant to trigger it, hoping to forestall an oncoming seizure.
Unfortunately, we were too late.
By the time Lor got back, it was a full-blown seizure. A bad one. Seizures, as you may or may not know, come in varieties. Normally my seizures involve lapses in consciousness, called absence seizures. My eyes are open, I remain upright, I can even be steered around, but no higher brain function is present. I can’t communicate or make self-directed movements. As they say, “the lights are on, but no one is home.”
Afterward, I rarely can remember what has occurred. This is why having a full-time caregiver is a necessity – the number of ways you can injure yourself during a seizure is mind boggling.
And yesterday’s interruption was no absence seizure.
The Involuntary Workout
By the time Lor was back from the kitchen, it was too late to hold off the seizure.
She gave me a swipe anyway, hoping to shorten its length. I was in no position to say thanks. My head was tilted to the left, and I could feel a trickle of drool running out over my lip and down my face. Most alarmingly, my left arm was now extended straight in front of me, solid as a rock, the muscles in my forearms visibly jumping and twitching. It felt like the most intense isometric exercise I had ever performed.
See, the “felt like” part is what really freaked me out. Normally, I am not conscious of my seizures. While my seizures are taking place and freaking out everyone around me, my mind has usually been turned off. Not yesterday. Yesterday, I got to sit and watch as my body just took off without me.
In subjective time, it felt like I was trapped in that position for hours. In “real time”, it was all over in less than 5 minutes. But 5 minutes of non-stop, full-blown muscular contraction is enough to fatigue just about anyone. There is a reason that HIIT training only goes for intervals of 30 to 60 seconds with rest breaks in between. Anything more is not normally possible.
At least, not while there is someone at the controls.
The Calm After The Storm
Once we thought that the storm had passed, Lor directed me to the shower. She got to babysit me and direct me to use soap, wash everything, brush my teeth, etc. Why? Because after a seizure I don’t always remember, and will sometimes stand under the water until she turns it off.
She then got the lovely task of taking my clothing and the seat cushion I had been sitting on to the washer. Oh, did I forget to mention that “involuntary muscular movements” frequently means incontinence as well?
Next time you see a caregiver for a disabled person, give them a hug. Take them to lunch. Buy them a fruit basket. If you haven’t been one, you have no idea what a miserable, thankless job it can be. How Lor does it with a smile I will never know.
The rest of my day – originally slated for production of fiction – got spent napping and staring at the television. Seizures leave me in an addled state for much longer than it takes me to recover the ability to speak. Lor started watching the second episode in a series we have been watching, and after the first two minutes, I made her stop. Not only was I not remembering the first episode, I was confusing the series (Amazon Prime’s Bosch, highly recommended) with the movie Mullholland Drive. I probably should’ve stuck with cartoons.
An entire day of productivity, flushed down the drain thanks to misfiring brain cells.
How Raw is Too Raw?
I get asked frequently why I write about the things I do. Isn’t it uncomfortable, just laying it all out there for the whole world to see?
Well, yes. It bothers me to know that the audience of Misdirected knows that I am not always in control of my own brain. Just like it bothered me to confess that my eating was so out of control that I had topped 300 pounds.
But, that is sort of the point. The longer things like Obesity and Epilepsy remain forbidden subjects, too embarrassing to talk about, the longer it will take us to address them.
I have hope for those of us with these forbidden conditions and disabilities. Once upon a time, breast cancer was a subject no one talked about. Today it is a trendy subject. Pink ribbons blossom everywhere to fund research and support for those suffering from the disease. It is possible to drag these things out into the light and begin working on them.
But only if someone starts talking about these conditions first.
As for me? Back to the gym today. I refuse to fall back into gloom and despondency just because I have had a setback. I may only feel safe doing cardio today, but, by God, I am going to do what I can.
When I started this weight loss journey last year, I had a goal in mind. Come hell or high water, I was finally going to be a part of the Albuquerque Run For The Zoo 5K. Lor got caught up in the current of my excitement and agreed to come too, which made it a joint goal, which was even better.
I thought I had fairly sensible goals. This being our first 5K, we wouldn’t enter the timed, competitive section of the race. We would do the Fitness Walk section instead. This would allow us to take it easy, and not overdo. While at the gym we tend to average right around 3 mph on our treadmills and ellipticals, so I thought we could manage that in the Real World. Since a 5K is actually 3.1 miles, that gave me a goal of finishing our first 5K in about 1 hour and 5 minutes or so.
We got through it in 48 minutes and 4 seconds.
Here’s how it all went down…
Though our portion of the race didn’t start until 10:15, my excitement was just too much to handle on Saturday morning. I got Lor up at 6:00 AM sharp and essentially chased her around the house until we made it out the door.
An unfortunate side effect of my rushing us through the process was that we left without collecting Lor’s FitBit. This was intended to be our timing device during our untimed “Fitness Walk.” Oops.
When we arrived at the park and ride around 7 AM, I could not help but notice that there were only a few cars. Apparently only the seriously hard-core runners were out this early – those participating in the half-marathon and the 10K. Most of those running the 5K were still home asleep.
I get excited, I can’t help it.
While waiting for the bus, a gentleman in his 60s came storming up to us, wanting to know where the bus was. We informed him that one had just left. He then started on a 5-minute long, expletive-laden diatribe about how the “idiots” at race registration had not informed him that the Park and Ride location had been moved. He had gone to the wrong location, apparently, and been directed here. Now he was going to miss his entry into the 10K.
Now, Lor and I both knew the location had moved. The website stated the location had moved. And a parking lot already filled with dozens of cars seemed to indicate that the half-marathon runners knew. I am not entirely sure what this gentleman was expecting. A personal phone call maybe?
Once winding down, he asked us if we were running the 10K or a 5K.
“Oh, neither,” I told him. “We’re in the Fitness Walk.”
“Huh,” he replied. Then literally turned his back on us and walked away.
So…class consciousness among runners. I had never realized that was a thing. Good to know.
Aint No Party Like a 5K Party
We were too pumped up to let an encounter with a stuck-up, angry runner have too much of an impact on us. We hopped on the bus and took the short drive over to the Zoo.
The setup was interesting. A large park sits directly in front of the Zoo. On the East side of the park was the starting area for the various races. The West side of the park, directly in front of the Zoo entrance, was the Finish Line. The various routes ran all along the river and through the high-end Country Club residential area until looping back around to the Finish Line. Streets were cordoned off, street lights were covered, and police were everywhere.
When over 12,000 people participate in an event, apparently the city government takes it pretty seriously.
The area by the finish line had been turned into a midway of sorts. There were food providers, information booths, and contests. Best of all, with the exception of the Run For The Zoo merchandise tent, everything was free. We collected free Keva Juice samples and coupons for future purchases. (Mmmm…wheat grass.) A local food company was providing fresh fruit – oranges and bananas. I got half a banana because… potassium, I think it is?
But best of all was the New Balance tent. They had a little “spin to win” game set up. You could win keychains, socks, or even a backpack. My poor old day pack is on its last legs. I needed that new pack. So, I signed up, stepped up, and took a whirl…
And won my first ever piece of New Balance gear:
I looked all around for Lor, to get her to try a spin, but she was nowhere around. I finally located her a few tents down…getting a free pre-race massage from the folks at Crystal Mountain Massage Institute.
These folks at the Run For The Zoo really know how to run a pre-race party.
Watching The Finishers
Having explored the “Midway” thoroughly, we went over to the finish line to join the crowd cheering for the initial finishers of the half-marathon, followed closely by the initial finishers of the 10K.
Those crossing the finish line first were what you would expect to see. Bodies composed of long ropes of muscle, covered head to toe in activewear and wearing running shoes that cost as much as I make in a month. But, as the number of finishers started to increase, we were treated to an awesome cross-section of Albuquerque demographics.
There was a senior citizen in her 70s, finishing a half-marathon well ahead of competitors 50 years younger than her. A family of four, including an 8-year old boy, finishing the 10K together. I saw people almost as large as I was last year competing – huffing and puffing, for sure, but finishing.
The number of costumes was surprising. A large number of women were wearing tutus, for some reason. I kept asking Lor to go find out why, but she loftily ignored me. There were people wearing Halloween costumes, silly hats, and message t-shirts galore.
In fact, let me repeat the shirt whose message had the greatest impact on me. The caption read: “I Run. I’m slower than a herd of turtles stampeding through peanut butter. But I Run.”
Yup, I thought. That’s me.
At last, the time had arrived. It was time to go get ourselves lined up for the 5K.
The timed 5K is so popular that it has to be started in waves, each wave based on how fast you estimate your speed per mile to be. How popular, you ask? Oh, about this popular:
At the point where we arrived, Wave 1 had just left. The churning sea of humanity in front of us was Waves 2 – 4. The operation ran like clockwork. Every 4 minutes, another wave would launch, apparently designed to create safe space between the runners of differing speeds.
We cheered and waved as we watched each wave depart. Once the area had cleared out, it was time for the “Fitness Walkers” to take our positions.
As we pulled into position half an hour early, I was still kicking myself for rushing Lor out of the house this morning and forgetting her Fitbit on the charger. However, pulling my phone out to send out an incoherent Tweet gave me an idea. “I can just use this, right?” I loaded up Map My Walk, and we were ready to roll. As the crowd counted down the final 10 seconds, I waited until the count of 5, then pressed the Start button and tossed my phone into my pack.
Turns out those extra five seconds would be significant later.
On The Road
The race designers had cleverly divided the road into “walking” and “running” halves, walkers on the left, runners on the right. We placed ourselves firmly in the “walk” position. The air horn blew, and we were off.
There was some initial chaos as the runners and a few of the walkers surged past us, but after that, things thinned out nicely. We made it about a quarter of a mile down the road before Lor looked over at me.
“Want to run for a bit?”
I nodded, not wanting to waste oxygen, and followed as she started running up the course for about a quarter of a mile. She then slowed to allow me to catch my breath.
This set our course for the rest of the race. Lor would patiently wait as long as she could, getting further and further ahead of me until I was forced to run to keep up with her. She would then start running herself, for a short distance. We weren’t exactly 5K race-worthy, but we sure as heck weren’t walking, either.
Our first mile was spent running behind the Zoo. People around me kept commenting to their children on the various zoo animals they could see. (Tons of children in the Fitness Walk.) I never saw any of the critters, being too focused on not running into the walkers and runners ahead of me.
The second and third miles wound their way through the “Country Club” residential area. All around us were nice houses, lush lawns, and tall trees. This is not at all common in Albuquerque, so the contrast was nice.
Even nicer was the fact that, all along the route, people were standing and clapping and cheering as if we were in the Tour de France or something. Many of these “cheerleaders” were race volunteers. But quite a few were just folks – residents standing in their front yards, encouraging us to push hard and to finish strong.
By the end of mile 3, I was ready to stop. However, Lor had stepped wrong and had actually hurt her hip during mile 2, and was dramatically slowing down. I found myself in the curious position of being her encourager for once.
“C’mon babe!” I told her. “You can do it! Two-tenths of a mile to go – that is the same as to the end of our block and back! Let’s finish strong!”
And I’ll be darned if she didn’t do just that. She picked her head up, pumped her arms, and we ran from Mile 3 all the way across the finish line.
We finished in 48 minutes and 4 seconds. I couldn’t help but think of the “extra” 5 seconds I spent putting the phone into my pack at the front end of the race. If I had not pressed Start until the air horn went off, we would have come in under 48 minutes.
Of course, if I had waited to put the phone away until after the race started, I might have dropped it and it would have been stomped flat by 6,000 runners. So I probably made the right choice.
I learned that my second-hand Asics cross-trainers were not the appropriate shoes for a 5K. Today my arthritic knees feel great, but my feet are killing me. Time to start saving pennies for “real” shoes.
And, most importantly, I learned that any goal is achievable if you have someone who believes in you. After the race, I thanked Lor for supporting me every step of the way. Running a 5K was not originally her dream. But she adopted it, and made it her own, in the name of supporting her husband.
Yes, I know I am the luckiest man on the planet.
Oh, and a little perspective. As we were leaving, awards were being handed out. The medal for the 70-74 bracket of the 5K was being handed out to a 73-year-old woman. Her finishing time?