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I’m No Hero: A Sobering Realization

It’s been almost two years since my stroke, and while my brain has been permanently damaged, one thing has not—my sense of humor. Countless people have marveled at how my personality has stayed intact, despite being paralyzed on my left side.

Well, first of all, humor has always been my preferred coping mechanism, and this situation is no different. I’ve also spent the last few months processing the part I played in this stroke.

There isn’t a day that goes by when I don’t rehash conversations with my doctors from the past. They warned me that my blood pressure was high, but I felt normal. They warned me that I was in danger of a stroke, but I never knew anyone who had one and had no clue how devastating it could be. Their sense of urgency was lost on me, and I’m paying the price now.

In the past year, I’ve been sharing videos of my progress in therapy. People say, “You inspire me!” “You’re such a warrior.” While I’m glad they are watching and responding, I also feel embarrassed by their praise because I’m partially responsible for this stroke.

Do you feel sorry for the psychos who go to Spain to run with the bulls? Of course not! Those people purposely put themselves in harm’s way. It’s been said, “If you fuck with the bull, you get the horn.” Well, I ignored my doctors, and I got the horn!

The purpose of this update isn’t to dissuade you from offering me encouragement. I appreciate every word. Instead, I hope you’ll watch my videos to see what the aftermath of a stroke can look like. What you do with that information is up to you. If I could turn back time, I would have been more diligent about lifestyle choices and consistency with my blood pressure medication. There is no doubt in my mind that alcohol was a factor in this stroke.

Going forward, I hope my experience will open your eyes and you’ll use it to keep yourself healthy. Instead of boosting my morale online, I’d much rather hear how my stroke is helping you avoid a stroke of your own. That would be the greatest praise I could get!

Are you getting better?

People ask if I’m getting better. It’s a hard question to answer, but after 18 months post-stroke, I’m now able to explain what’s going on with my progress. I hope this blog will serve as an update, as well as information for other stroke survivors and their caretakers.

After a stroke, it can be hard to get answers. No one will predict your road ahead. They can’t because every stroke is different, and recovery depends on each person’s conscious and consistent effort.

On November 17, 2015, I came home from the hospital and started waiting to get better. The thing about stroke recovery is, if you do nothing, you get nothing in return. Here’s why:

My official diagnosis was Hemiparesis affecting left side as late effect of cerebrovascular accident (CVA). In layman’s terms, this means a blood vessel in the right hemisphere of my brain had burst, and it could no longer supply blood and oxygen to that specific area of my brain. That part is dead. Brain damage does not heal. This caused partial paralysis on my left side.

Recovery has become my full time job. It involves recruiting new areas of my brain to control motor function in my left arm and leg. I am fortunate to have had very few cognitive deficiencies. I also had very little facial paralysis.

In physical and occupational therapy, I’ve been learning to move and walk properly. When I first came home, I did whatever I could do, however I could do it. That was fine then, but my therapists explained why proper body alignment and posture are crucial to having a long life of mobility. Now, I have to focus on moving correctly, otherwise, I’ll never get out of this wheelchair!

If someone is touching my leg, I can barely feel it, yet I am able to walk for a little bit with a quad cane and some assistance. When standing, I don’t necessarily feel the ground below my left foot. It feels more like my foot is balancing on a tennis ball. The only way to tell if my weight is equally distributed is by judging the lack of weight in my right foot. This distinction was a turning point for me, and it was a celebration with my therapists. It meant I could practice standing by myself, correctly and safely.

As for my left arm, progress has been slower. In the hospital, a nurse hung a note that said, “Don’t forget your left arm.” If I move without awareness, I can injure myself. This takes constant reminding.

Imagine sitting in a chair with your eyes closed and having no idea where your arm is. Unless I can see it, I don’t know where (or how) it’s positioned. In the middle of the night, my arm tends to go on its own adventures. I sometimes have to look for it when I wake in the morning.

Shortly after the stroke, I learned that my leg would probably come back before my arm. No one explained why though. Turns out, the more complicated the movement of a limb, the more brain tissue it takes to control it. With the intricacies of the human hand, it makes sense that I’ll probably run a mile before I’ll play the guitar.

I often use the analogy that recovery is like a cross country road trip that’s measured in inches, rather than miles. If I’m traveling from Portland to Philadelphia, I have yet to hit Idaho. But now that I understand what I’m doing in therapy, I’m able to be patient and have confidence that I’ll get there eventually.

I See Invisible People

Since having a stroke over a year ago, I am now able to see invisible people. No, this doesn’t make me a medium and no, it isn’t my new glasses from LensCrafters. Let me explain.

Each week, I have three or more rehabilitation appointments. Since I haven’t been cleared to drive, I don’t want to have to lean on others to get to my destination. Instead, I utilize a ride-share service offered by TriMet for folks who use wheelchairs, walkers, or other mobility aids.

I’ve heard it said that this segment of the population is largely “invisible,” as very few people will acknowledge, make eye contact, or even speak a single word to them.

I am sure you’ve seen us out and about. We are in a white, blue, and yellow “short bus” that covers the Portland Metro. The windows have been tinted to block the view of what’s inside, so allow me to paint a picture.

On any given trip, there are 3-5 of us in the van and I’m usually the most well off, or so it seems to me. There are people who drool, slap, and talk to themselves. I’m guessing that most of these individuals have dealt with their mental and/or physical conditions their whole lives. Hopefully, mine is just temporary. Regardless, we are in this together!

I try to engage whenever possible. I like to say hello, ask where they’re going, or wish them a good day. When this happens, the reaction is priceless. First of all, they seem shocked. Secondly, they light up and appear to come back to life. It reminds me how much we all need basic human connection.

It’s unfortunate that it took a major stroke to realize that these people were invisible for the first 50 years of my life. Our interactions have meant more to me than they will ever know.

Let’s Talk About Butts

Since my stroke in September, my perspective on the world has changed. Not just how I think, but how I literally view the world from two feet lower in a wheelchair. I used to see eye-to-eye with most people, but today, I’m eye-to-ass with just about every human around me. One trip to Target and I can see nearly every phase of the moon. Allow me to elaborate.

Sir Mix-A-Lot may relish the view from at my altitude, but I can’t get to hyperspace fast enough when I’m surrounded by a solar system of cheesy planetary matter.

Sometimes it’s not the size of the ass that’s funny, but the fact that there’s nothing there. Take for instance, what I call “the bass.” Similar to cankles, the bass has no distinction between where the back ends and ass begins. Out of nowhere, a crack in the glutinous maximus forms and depending on size, a sweat trough of sorts can easily appear.

Conversely, I’ve seen others who seem to fit into the squash category, namely winter gourds. Remember when we were kids and there was a cartoon character who would wear a barrel with suspenders? Imagine if that barrel was a giant pumpkin squeezed into slacks. It’s not like I didn’t notice these things before, but at age seven, I couldn’t articulate what was in front of me.

I think the ass is the ultimate “to each his own” scenery. Everybody has their favorites. If there’s one thing I’ve learned it’s this: One man’s turd cutter is another man’s work of art… and I can hardly wait to get back to the eye-to-eye perspective.

I Miss You Letter

First of all, let me tell you how much I miss you. In fact, I can hardly function without you, but God knows I’m trying. I realize I have taken you for granted literally my whole life. If I had it to do all over again, I would, but this gives me (us) a chance to reminisce about the good times we shared together.

As children we were taught how to catch large mouth bass and crappie by Pappaw. We also learned the fine art of hitting a baseball and fielding one for that matter too. These skills brought countless hours of fun playing whiffle ball derby. When we would break the ball, we would stuff it with toilet paper and wrap it with electrical tape. Coulda put a man on Mars with our ingenuity, right? Oh wait, we did and they made a movie out of it. Thanks, Matt Damon and the Academy.

Speaking of our rocket science skills, what about the time we used 10 pounds of Mammaw’s flour to make a football field in her back yard? That didn’t go over so well, did it? Last time she ever made us bisquits. “You idiots don’t deserve any homemade biscuits after that dumb stunt. What were you thinking?” Well woman (said only in my head), we were thinking about playing on a real field for once… Now, if someone would just mow this pasture back here, it would work a lot better. Guess who had to mow? Yep, we did and it took an entire weekend, but still no biscuits, dumplings, or even a single pancake. Okay, okay… lesson learned. Don’t use grandmother’s flour to stripe a ball field and don’t use chalk to make dumplings or bisquits. This led in nicely to my career at Sysco, don’t you think? With food knowledge like this it’s hard to believe chefs here in Portland would scoff at my food suggestions.

Remember when we discovered what happens when you hit a firefly with a bat or tennis racket? It was like a tiny backyard fireworks display. Was great until we realized the racket strings were covered with bug entrails the next day. Rocket builders we were. The only thing that helped that situation was our move to Oregon. Mammaw realized she missed us more than she did the flour, and soon the cards, letters, and more importantly to a 12 year old, the cash started flowing through the US Postal Service. All was right in the Universe again.

Now 40 years later, the universe turned upside down again. Left arm, left leg, please come back to me. I need you too much to go on like this!  We’ve shared a lifetime together and I still need you now. I go to bed holding your hand every single night, even if you can’t feel it. I’m hoping you wake up in the morning and decide to stay. I promise to never take you for granted again.

The Fallacy of Going Home

Have you ever congratulated someone because they were released from the hospital? It seems like the polite and even natural thing to do, but since my stroke in September, I’ve realized that coming home was just the start of my challenges. Let me tell you what “going home” was like for me.

First, I must tell you about the luxury of being in the hospital. It started from the moment I opened my eyes in the ICU. All my needs were met at any moment of the day. If I was thirsty, someone got me water. If I needed my pills, they were hand delivered. My pillows were fluffed each night, as I was tucked into bed.

One thing I began to notice was that each aid and assistant would always ask the same question, “When do you get go home?’

“No idea” I would say while thinking, I’m still pretty fucked up. I hope not anytime soon. At this point, I couldn’t move my left arm or leg, or even wipe my own ass without major assistance. Yet it seemed as though everyone, even family and friends, were focused on the very day I could leave the hospital, which sounded great early on, but only because I didn’t know any better.

As September rolled into November, my therapy ramped up and the primary focus of my care team was getting me ready for home. On one hand, this was a relief because Lord knows, it was costing me a small fortune to be in the hospital, but the longer I stayed, the more afraid I was of returning home.

I was dependent on the nurses button on my bedside remote. Like a teenage girl addicted to smiley face emoticons, I was addicted to this little button that resembled Judy Jetson in her iconic triangle shirt. If only the dog Astro could have made an appearance too, that sure would have been a bonus.

About two weeks before my release, the therapy team wanted to do an in-home inspection to gauge how viable my apartment would be for recovery living. I hadn’t been there since the morning of my stroke, so the anxiety of having these strangers look at every nook and cranny of my place was horrific. If I could, I would have driven home to give it a “once-over” before company, but in this case, they would have to step over any skeletons they would find.

It was determined that I could live there in a wheelchair with a few adjustments, like hand rails and high-seated toilets. Not only did I not want any of these things, but I desperately needed them all. Accepting where I was (and still am) has been a huge part of my recovery.

It was also noted how lucky I was to be on the ground floor without any stairs. Had that not been the case, I would have had to hire someone from my hospital bed to find me a new apartment and move.

So the discharge date was set for November 17th. It was determined that I needed 24/7 care. My dad volunteered to temporarily leave his friends and home in the mountains of South Central Oregon to deal with me, and face everything he despises about city life… heavy traffic, tiny parking spots, and not knowing where anything is at the grocery store. All of this, so I could eventually get my life back.

Since then, he’s cooked every meal, done my laundry, and got me into bed each night. Whenever I felt pissy or sorry for myself, I tried to remember the crap he endures for my sake. Imagine living with your 51 year old son in a 900 square foot apartment. That’s tough for anyone, let alone my vibrant, 73 year old Dad.

Perhaps the toughest thing on both of us was when it was time for me to use the restroom. I needed transferred from the wheelchair to the toilet, and when it was time to wipe, Dad had to put his hand on my shoulder so I wouldn’t tip over and fall off the commode. That’s taking one for the team!

One day, I tried to clean up alone on the pot when Dad was in the other room. After leaning too far to the left, I lost my balance and went crashing half naked into the bathtub. You would think my biggest concern would be getting out of the tub, but in this case, I was mortified by the poop that still might be schmeared on my crack! This incident weighed heavy on me in regards to my future independence.

On May 1st, Dad will go back to his life for good and I’m on my own. We both need it. As scary as it may be, it has to happen. Since a full recovery won’t happen before then, a new life begins solo and not in 100% health. I will be leaning on friends and family for help with things like grocery shopping, cleaning, bathing, and other life necessities.

My new humble life awaits, as if this hasn’t been humbling enough. I won’t take anyone or anything for granted ever again. Above all, this stroke taught me appreciation for the selflessness of others.

That said, certain things still get to me, like seeing my guitar in the corner and wondering if I’ll ever make music with it again. I also watch the Golf channel and wonder if I’ll ever swing a club again.

So, yes… I guess congratulations were in order. I made it home and can sleep in my own bed, which is still the best thing about being out of the hospital. Who knows where my life goes from here, but I have a lot of lessons to take with me on this journey.

 

My Stroke Story

September 21, 2015

It was a day I had been anticipating for weeks. It was the Brix Tavern golf tournament. Brix is one of my biggest customers, so the opportunity to rub elbows with a good customer and my bosses was very appealing.

On top of that, it was a Monday off work, so needless to say, it was going to be an awesome day. It could have been described as a Chamber of Commerce weather day: 77 degrees, sunny, with a light breeze. The thought of golfing with business associates and friends had me very excited and happy.

It was a scramble (a team, best-ball event) and we were playing like crap. We were three over par through 16 holes, which is really bad for this type of event. This was the only stress I had all day. That final score won us no prizes at the post tournament lunch. Although, there was one big surprise on the way.

While sitting at the table with what seemed like three pounds of bow tie pasta on my plate, the jabs and ribbing began among the team, recalling our epic fail on the course.

Several minutes into assaulting the carbohydrate cargo on my plate, I noticed the strangest feeling. It was a tingling sensation that started at my toes and migrated to my shoulders. I reached for my shoulder because it kind of tickled, and to my disbelief, it was numb.

I spoke out to the table, “My left arm is numb” to which some concluded I was having a heart attack. “No” I replied. “It feels more like a stroke to me.” Holy shit, and I’m only 50 years old!

Immediately, nearby cells phones began clicking a cacophony of 911 dials. In the distance, I heard the ambulance siren wail. Then it hit me, “They’re coming for me.”

That wasn’t the most horrifying thought. It was the realization that I was surrounded by my business associates. “Please don’t let them see me get loaded into the ambulance right here.” I begged my teammates to get me away from eyes and potential cell phone cameras. Lord knows, I didn’t need to be “trending” on this day.

On each shoulder, there was someone trying to help into a golf cart to meet the medics away from prying eyes. The problem was, I couldn’t stay standing let alone take a single step. I told them to just put me down in the grass. My pulse was racing along with my thoughts. “What is happening here?”

I was completely immobile and helpless. On top of that, I was about to take my first ambulance ride. Finally, I concluded that this day hadn’t turned out to be awesome after all.

Minutes later, the medics began poking, prodding, and analyzing my vital signs. As if I wasn’t even there, they were all talking around me about the fact that “this man” just had a stroke. I sat there thinking, “Hello? I’m right here.”

I remember not being overly worried though. I mean, it was a stroke. Many have lived seemingly normal lives after having them, and I actually felt fine. Besides, emergency care arrived within 15 minutes, which led me believe that odds were good that I would be okay. — Wrong!

After what seemed like hours laying in the grass, I heard the ambulance in reverse beeping to load me up. This is now real and very scary. Nothing I could say or do could change the direction of this day. Before I knew it, I was on the stretcher and loaded into a MetroWest ambulance. Immediately, we started traveling down some dreadfully rough, Washington County roads to Tuality Hospital in Hillsboro. It felt like seven miles of speed bumps. I hoped to somehow survive the ride.

Upon arrival in the ER, I was draped in blankets and prepped for another ride. They told me a Life Flight helicopter as warming up on the helipad nearby. “Wait, what? Life Flight?” I’m not dying, I was telling myself. At least, I hope the fuck not!

I had never been in a helicopter and let’s just say, it wasn’t worth the wait. My stretcher was strapped down and so was I. All the lights were off and by now, it was nearly 7pm. It was dark both outside and in, so there was nothing to see… simply a loud, bumpy, in-the-sky ride to Providence Hospital.

I later came to know that this ride cost me $3300 after insurance paid their portion. And to think, I once bypassed a $300 heli-tour of Vegas and Hoover Dam back in the day. My bad! So when the hellish ride on Space Mountain was complete, I woke in the ICU.

Apparently, I had gone directly into a cat scan and then into surgery where a tube was put in my head to drain the blood that had accumulated as a result of the stroke. “Won’t I need that blood for another day?” I guess not.

The ICU was a 24 hour nightmare! There were tubes and wires coming out of me and going into countless machines that all had different tones and alarms that seemingly never shut off. It’s like I was in the middle of Chuck E. Cheese with nurses all around. This is where cannabis candy saved my ass. Anxiety? Gone. Pain? None. Sleep? Yes… all night long.

Making the candy was a hobby of mine, yet I hadn’t tried the cannabis variety due to company policy. Fortunately, a friend convinced me to try some in the ICU. Holy cow! It accomplished what oxycodone, morphine, or Tylenol couldn’t. Amazingly, this candy-making hobby was paying dividends in ways I could have never imagined.

What followed was a two month stay in the hospital and lots of physical and occupational therapy, which to date, I have not even come close to completing.

My Mom Story

My earliest recollection with my Mom was around 1968. I was 4 and we lived in a small apartment in Dallas, for some reason. Not sure why we left Austin, but if later life proved anything, Mom was probably a groupie for some Dallas band.

We were at the kitchen table filling out paperwork to send in for A FREE Frito Bandito erasure… fast forward to what seems like 6 months, the erasure finally arrived and I probably lost it a day later. These times were my first in hearing how Santa could use his magic to unlock deadbolts and bring presents to kids who didn’t have fireplaces.

I never felt like I didn’t have a great Christmas, but looking back I don’t know how it happened, because my Dad was out of the picture by now (not by his choice) and my Mom never had a job that I could remember back then. Next thing I know, we are moving into a mansion in Hollywood… California! This house had an elevator, swimming pool, and at least 6 bedrooms. Again, at 5 years old, I thought everybody does this, right?

I went to first grade with Dino DeLaurentis’ kid…Probably the brother of Giada from Food Network for all I know. Turns out, we house-sat for a member of Steppenwolf for a couple of years. In that house, we experienced the ’71 earthquake, many, many parties, and a few naked people wandering around when I would get up for a glass of water.

I also was the only kid in my class who thought it was normal for people to have syringes in their bathroom. I mean, every parent gives themselves shots, right? Again, I never felt neglected, as whoever was around was like another parent, always looking out for me, taking me to parks, showing me how to roll joints, educating me on the fine play of Jeff Beck. Fun times at the beach, occasionally Disneyland, and toys galore is what I remember. Next thing I know, we are back in Austin for the 3rd grade.

That’s when I met my buddy, Scott Gebert. We played baseball all day long, literally lived the life of the movie Sandlot with a few oops mixed in when got caught throwing rocks at cars. I lived in a house about halfway between Scott and my grandparents on Manchaca Rd. My Mom worked for Willie Nelson (Yes, THAT one!) and helped on tour plans, photography, and apparently drug distribution.

I played Little League Baseball and Mom was at most games, but one afternoon, my Grandfather was there to take me to their place. “You are going to be staying with us for a while” he tells me. That lasted 2 years. I guess Mom had to do some time in the pokey and the Grandparents arranged temporary custody.

See in them days (Texas speak), that’s about what it took for anyone other than the Mom to get/keep custody. So after 3rd and 4th grade in Austin, Dad finally gets custody of me and flies me, with my twangy-ass drawl, to Oregon where I was a novelty to all these English Majors here. I was 10 and didn’t speak with my mom for 13 years.

For the first few years, she wrote, every month. I never wrote back. I was told by everyone how bad a person she was and to just “ignore her” She never missed a holiday or my birthday. I don’t even know hers. (who doesn’t know their Mom’s Birthday?) After a while, she stopped writing. (Can you blame?)

One day, out of the blue I decided I needed to call her. She cried for a long time and said how sorry she was, and how much regret she had. I told her that I had turned out fine. I had my issues, like everyone, but I’m okay. I told her to not live the rest of her life in regret, but to enjoy what’s next. That seemed to make sense.

We were never close, but I visited her once in Texas a few years after that phone call, and once again in 09. She lived for many years on a farm with her then husband and after he divorced her, she was pretty much left to live with relatives, and ultimately in a care home.

Mom’s life was definitely “front-loaded” She lived 70 years of life in her first 30. She paid the ultimate price for the drug use, finally losing the battle of Hepatitis C. I loved her as a small child. I never hated her, I just never really knew her. I know she loved the Cowboys and if alive, she’d watch the Horns tonight.

She was a “fuck’em if they cant take a joke” kind of person. She had many friends in the music industry and many visited her in Austin while she was in my great uncle’s house. Willie even brought her weed personally.

I share all this to open my soul to my friends. If you wonder how someone’s Mom can die and they confess that they weren’t close to them, well, this is it. I could have reached out more as a child, but no one wanted me to, and I guess it was easier not to. I forgave my Mom years ago for mistakes she made, but all the while, the family made sure got a proper upbringing.

If anyone is still reading this, I say thanks for listening. For those who have recently lost a close loved one… I feel for you! I just wish that I had been closer to my Mom and that I hurt more than I do now. I feel loss, but not like I should.

And… that’s about all I have to say ’bout that.