Seasons

Last week, we suffered the loss of yet another great artist to suicide. Chris Cornell, of Soundgarden and Audioslave, killed himself in his Detroit hotel room at the age of 52.

Chris was one of the great vocalists of the Grunge age. While I was not a big fan of Grunge, I was a fan of Chris Cornell. His voice was a true artist’s instrument, able to communicate effortlessly and emote flawlessly. As a performer, there are two vocalists I have always secretly wished I could sound like. Chris Cornell was one of the two. (Full disclosure: Johnny Cash was the other.)

Which always made it very frustrating that, during my time as a musician, I never worked in a band that could cover a single song by one of Chris’ bands. I had the vocal power, but never the vocal range I needed. The other vocalist I worked with primarily, Brandon, had the vocal range, but at that time was just coming into his own as a singer and didn’t have the power yet. It saddens me to think that Chris is gone, and I never sang one of his songs in front of an audience. It’s a musician thing. You might not understand.

That said, I didn’t know Chris Cornell. I never met him. I never got to see him perform live. But a song he performed on the Singles soundtrack, “Seasons”, remains on my personal “favorite songs ever” list. My only relationship with him is my relationship with the music he created.

Nevertheless, Chris and I share a certain kind of kinship: a pharmacological one.

Ativan is the drug that I get shot full of every time I am admitted to the hospital for a seizure that won’t stop. (Status Epilepticus, the condition is called.) It is apparently also used for the treatment of long-term depression. And it is the drug that Chris Cornell apparently took extra doses of right before hanging himself.

I can tell you from personal experience that Ativan effectively shuts down the ability to reason clearly. The folks wearing lab coats call this “disinhibited and dangerous behavior.” And I can perfectly understand that, under the effects of Ativan, I might make the same decision that Chris did. There is a reason I am never left alone and unsupervised after an Ativan injection.

 

Depression strikes the successful and the despondent alike. Chris apparently had everything going for him. He had seemingly kicked his drug habit. He was widely known as an artist and a philanthropist. He seemed to enjoy a healthy relationship with his wife and kids. His band had entered a renaissance and was headlining a successful tour.

And all it took was one bad night and a handful of pills that are designed to shut down the ability to reason clearly. All I can think, sitting here writing this morning, is “There but for the grace of God, go I.”

 

We never know what lies beneath the surface.

So, good night, sweet prince. I would ask for flights of angels to sing you to your rest. But none could ever sing as sweetly as you did.

With A Heavy Heart,

Jeremy

 

The Failure Cycle

This started out as a very different post.

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.”

Moving Forward

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.

At Least I Lost A Pound Last Week,

Jeremy

 

 

The Loneliest Job Of All

Though the image references Alzheimer’s, the message applies to all caretakers.

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.

How many other jobs give you that opportunity?

Stay Strong,

Jeremy

This Is Your Brain…

An Illustration of "Broken Brain"

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.

As for you? Hug your Mom on Mother’s Day this Sunday. Do something nice for a caregiver. Drop a buck into the pot at the Epilepsy Foundation or the Obesity Action Coalition or the National Fibromyalgia Association and support those who are suffering from one of these “hidden” diseases.

And I will just keep on dragging this stuff out into the light, and make people a little uncomfortable when they read about it.

Deal?

Deal.

Raw Like Yesterday’s Road Rash,

Jeremy