I Never Thought It Would Get Better, Either
By Leah Amberly Barker
So, this is hard for me to write about. Like really, really hard. My fingers literally try to curl up every time I go to hit a letter on the keyboard.
I need you to hear me out, though. I am writing this for you. The you that is hurting, feeling hopeless, worthless, unloved, alone, and stuck in one place. Hear me out.
A little more than a year ago, I sat alone in an old motel room, rolling a bottle of pills in between the palms of my hand. I can’t even recall the specific events that led me there, but I do remember exactly how I was feeling and exactly what I was thinking.
This will be my first time putting all of those emotions in one place. Or most of them, at least.
The most distinct emotion I remember was hopelessness. I couldn’t see a future in anybody or anything. Usually, if I’m depressed, I’m able to rapidly search my mind for something lovely to cling onto, and eventually, it helps me pull myself out. This time, I couldn’t find anything to cling onto at all. Everything in my head was just … black.
I sat on the musty motel mattress for hours, listening to music I remembered as being my favorite and trying to justify what I was about to do.
I remember thinking that having HD was going to ruin my life. I wanted to have complete control over my brain, and just knowing that I would have to lose myself someday left me feeling like I wasn’t a legitimate human being. And it wasn’t even myself I was mostly worried about … it was the fact that in losing myself, I would probably end up hurting the people I loved the most.
My grandfather was the sweetest man I’d ever met until he got sick. When he did get sick, I’d hear stories about how he’d threaten my grandmother and throw things at her. He began to suffer from extreme paranoia, convincing himself that my family was plotting to kill him. I never got to see him during his rapid progression into HD, but I remember thinking that I was terrified to see him when we finally got to visit. He was really sick by that time, unable to care for himself, twitching, falling, mumbling, and unfamiliar. He wasn’t the big, strong, caring papa I remembered, and the last memories I have of him are the suffering circumstances that HD threw him into.
As horrible as it sounds, I was terrified of turning into him. I have so much love to give, and it crippled me to think that I might degrade into a paranoid, angry, abusive stranger … as unintentional as it may be. I didn’t (and if I’m being honest, don’t) want to be a burden to anyone, emotionally or physically.
And if anybody loves love, it’s me. Sitting in that motel room, I thought about how badly I wanted to fall madly in love, get married while watching the sunset, pop out a whole litter of children, and grow old with the love of my life, but anyone with HD knows that it’s not that simple. My husband would eventually end up as my caretaker. He might end up really lonely while I’m sick, burdened emotionally, physically, and missing me while I’m still alive. And I have the risk of passing HD down to my children if I’m unable to afford fertility treatments.
Not to mention, I had already been suffering from debilitating depression and anxiety for years, and I couldn’t fathom those parts of my brain degrading even more, becoming worse and worse over the years. Oh, and while that’s happening, toss in some memory loss, paranoia, agitation, and whatever else my own body decides to throw in.
The only pro that I had on my list was my family and friends, but at the time, they just weren’t enough to stop me.
It’s not that I didn’t love them. On the contrary, I loved them more than anything. People HAVE to stop with the notion that suicide is selfish. Can it be? Well … sure, anything could be considered selfish, depending on how you look at it. Most of the time, though, people who commit or attempt suicide are suffering from one mental illness or another, which inhibits them from thinking rationally. In my case, I genuinely thought that my loved ones would be better off without me because I wouldn’t have to burden them.
In my head, I believed I was doing everyone a favor, including myself. It was a win-win. I absolutely, positively could not see any other way. I needed the hopelessness and despair to end. I was tired of being depressed. I was so over feeling alone.
I remember barricading the motel room door with a dresser and securely locking all of the deadbolts. The Discovery Channel played silently in the background as I emptied the first bottle, the second bottle, and then the third bottle onto the TV stand, crushing them one-by-one and mixing them together in a pile. I created a funnel from a piece of paper and sifted the mixture into a bottle of beer, swirling it around for a bit until everything dissolved. I begged God to please forgive me, told Him that I loved Him and to take care of my family, and then downed it.
Fast forward 16 months. I’m still here.
And, can I just say, thank God.
After getting out of the hospital, I felt like a baby deer trying to stand up on its wobbly legs for the first time (although the deer probably mastered walking much faster than I did).
It took time, as all good things do.
Ohhhh, that time went by so slowly, but now, I’ve got more to look forward to than I’ve ever had before. I’m in a place that I firmly believed did not exist during those dark times.
I’ve found someone who loves me with all of the baggage I carry along with me. He doesn’t have any mental or physical problems at all, yet he still does his very best to understand what I go through. He knows about HD and what may be to come, but he loves me enough to stick by my side through it all. I know he’s afraid, but he stays and loves me anyway. It blows my mind (in a good way).
Have the fears I had about HD gone away? Of course not. I think about it every day, but I figure that I may as well love the hell out of someone as passionately as I can in the meantime. I’ll love him hard enough to pierce through his memories of me in the future, when times may not be so good.
And I’ve been loving my family, friends, and everyone I can in that way, too. It feels so much better than being lost in your fears.
I have a great job, a beautiful home, and people who love me. I mean, it’s not perfect by any means, but it’s proof enough that amazing things can come from your hopelessness. I still suffer from severe lows and short-lived highs very often, but I’ve slowly been learning how to deal with it better. It doesn’t necessarily get easier, you just get stronger.
Yeah, I know, it kind of feels like you’re reading repetitive advice from some cliché writer, but if nothing else, just know that I’m all too familiar with your struggle, so you’re not alone. I never thought I’d get out, either.
Getting my life back was one of the hardest things I’ve ever had to do, but I’m here now… in all of my messy, clumsy, love-crazy, insecure, depressed, happy, struggling glory. I’m here.
You can be here with me, too.
If you or someone you know is considering suicide, please call the national suicide prevention lifeline: 1-800-TALK (8255).
This article originally appeared in Leah’s blog, “Capturing the Corners.” You can read more of her articles here: http://capturingthecorners.org/welcome-home/
According to the National Institute of Health, the rate of suicide, suicide attempts, and suicidal ideation among people with HD far exceeds that among the general population.
“Suicidal ideation in Huntington’s disease: The role of comorbidity” reports that in the study conducted by the authors, 26.5% of patients in the study reported suicidal ideation, compared with 3.3% in the general population. “In a subsample with the greatest suicidal ideation, alcohol and drug abuse were also predictive.” Completed suicide in HD has been reported to be as high as 13%, a seven- to twelve-fold increase above that of the general population’s suicide rate of <1%, while 27.6% of individuals with HD reported at least one suicide attempt. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3790459/)
To learn more about suicide risk factors and civil liability, please visit this link: https://www.hoganinjury.com/suicide-risk-factors-and-civil-liabilities/
/* Custom Archives Functions Go Below this line */ /* Custom Archives Functions Go Above this line */
“Look Up,” Conclusion: A Short Story by Brent J. Walker
Part Three left our narrator heading back to his hotel with a backpack that contains something he’s bought for $600 from a guy named Sergio.
By Brent J. Walker
Whoops! That was one of my what I like to call “knee-jerk reaction” thoughts. Depression is a bitch that way. I know all women aren’t bitches. I hate when those kind of thoughts spring into my head. I don’t want to feel that way about women, but when literally every single woman I have ever been involved with has screwed me over, and by very little fault of my own, it makes me bitter. Well, losing my first girlfriend was partially my fault, I guess. Looking back at it now, I could have been a better boyfriend, but come on. It was my first love. I didn’t have enough life experience to be a good boyfriend.
I’ve made quite a bit of progress walking, and my casino isn’t far off now. There is another casino nearby that is doing its own private show, much like the private fireworks show, only this one is different. Every so often, its giant water fountains will shoot up waves of water about 50 feet into the sky. A crowd of bystanders is watching as the wave reflects into the casino’s giant windows, making it appear as if two simultaneous water shows are going on at the same time. I look up at it for a while but keep walking until the show runs its course. I am now at the door of my casino. I enter. There are dozens of people posted up on various slot machines, but the bulk of the populace is at the card table games. All but one or two tables are completely full as people nervously clink their chips while they play Blackjack, Poker, Roulette and Craps tables. For whatever reason, the late-night gamblers seem to prefer the tables. I guess because it’s much more interactive. A great way to socialize and stay awake for those people that aren’t quite ready to call it a night yet.
I walk through the crowd, peeking at tables. Some people have approximately the equivalent of my yearly income in chips in front of them. Must be nice to have so much money you don’t even bat an eye once all those chips disappear, and eventually, more often than not, they will. Around the corner are the elevators that will lead me to my room. I head over to them and stop. There is something I have always wanted to do but never quite had the guts to. I pull out a hundred-dollar bill and laugh to myself. Why the hell not? I walk over to the closest roulette table. About three other people are placing their bets, which means I can still place my bet. I give my hundred to the guy in charge of spinning the wheel.
“One hundred dollars coming in,” he yells out loud to the camera or pit boss currently watching him.
He has to make sure all big bills he gets are accounted for so he can keep his job. Or maybe it’s so he won’t get an arm broken. This city was created by the mafia, after all. I have to believe there are still mafia type rules in place even in this day and age, and God forbid what will happen if the owner of the casino gets shorted! I mean, how is he supposed to feed his family with only billions? The dealer, or maybe in this game he’s called the spinner, gives me ten chips worth $10 each. Most of the tables at this casino require a minimum of $10 to play. This roulette table is no exception. I grab all ten of my chips. For some reason, people seem to think you should always bet on black at these tables. Apparently black is lucky, I guess. That’s the stereotype, right? Anytime you tell someone you are coming to this city, they say, “Put some money on black for me while you’re there.” Have you ever heard anyone ever say, “Put some money on red for me?” I sure haven’t. Wonder why that is? But screw everyone and their advice! I grab all my chips and put them on red. If the ball lands on red, I double my money; if it lands on black, I lose it all. It’s a 50-50 shot, but in a casino, that’s about the best odds you can hope for . . . which is ironic, considering my chances at a normal life are the same.
“No more bets, please!” the spinner yells. Once everyone takes their hands off the table, he spins the giant wheel.
“Damn, high roller over here huh? I’m down to my last ten bucks,” the gentleman on my right says.
“Not exactly. Just always wanted to do that. It’s super intense watching right now, though; that’s for sure.”
“I’m sure it is. Can’t imagine ever having the guts to do that myself,” he says while chuckling.
Bouncing all over the wheel is a little white ball. It lands in number slot after number slot, but because it’s still at top speed, it doesn’t stay in any number for more than a split second. After what seems like forever, the wheel starts to slow down, and the white ball stays in a number slot for almost a full second now before jumping to the next number. It seems to have completely stopped in a red square at first, but the wheel has just the tiniest bit of centrifugal force remaining. Just enough to push the ball into black 14 before coming to a complete stop.
“Yes, yes! Hell, yeah, I can’t believe that just happened!” the man who called me a high roller earlier screams joyfully.
Turns out he put his last ten bucks on black 14. Because there are 36 numbers on the board, this will pay him 36-1. He just won $360. No wonder he’s excited.
“Congratulations, man! Big win!” I say.
“Thanks. I’ve never won this much in my entire life. My bad, dude, sorry for celebrating in front of you like that when you lost all your money on red.”
“Not a problem; I’m glad at least one of us won. Besides, I actually went through with that. I have bragging rights now.”
“True. I like your optimism, man. Better luck next time,” he says.
I start to walk to the elevators, smirking. He thinks I’m an optimist. How ironic.
I reach the elevators and hit the up button. I wonder which of the eight doors will open first. It’s kind of a fun game to play because you never quite know for sure. I’m surprised they don’t have a way to gamble on it. Maybe someday they will. A middle-aged man comes around the corner, stumbling a bit. No surprise he is wasted out of his mind. His eyes have that glazed look of someone who has had far too much to drink and is possibly blacked out. He isn’t so much looking at me but looking through me. I doubt he will remember anything tomorrow.
One of the elevator doors opens, and we both enter. He moves to the corner, using it as a crutch so he doesn’t fall on his face. I have only been that drunk a few times in my life, It was a scary feeling, but somehow I always managed to make it either home or to the safety of a friend’s house. Funny how that works. I’ve heard that being blacked out is the equivalent of being comatose, yet somehow my body always seems to still work just well enough to get me to a safe spot to pass out.
I hear the beep of the elevator as it stops on floor 12. My room is 1205, which means it is right around the hall. I prefer having a room near the elevators. After a long night of partying, it’s hard enough to make it to the elevator, let alone walk to a room way far away from it. I reach into my wallet, pull out my little key card and stick it in the slot which turns into a green light. I can’t help but wonder when it was that damn near every hotel in America switched from keys to cards. Fricking technology! If somehow our entire computer systems went down like people thought they would in the “Y2K” scare of 2000, I’m pretty sure the world as we know it would collapse into a quick apocalypse, and good riddance when it does.
My room is freshly cleaned. The maids serviced it while I was gone all day. I throw my backpack from Sergio onto the bed. I have a bottle of whiskey in the fridge, so I pull it out. I take a good long chug of it. On a table next to my bed is a piece of paper and a hotel pen. I light up a cigarette, not caring that it is a non-smoking room. It’s the last one in in my pack, which is perfect. I grab the piece of paper and the pen; the cig stays perched in the corner of my mouth, and I begin to write.
Dear Friends and Family,
Please do not feel responsible for what I am about to do. It is not your fault. This world is shit, filled with nothing but pain and sorrow. I’m done with it. There is no justice, no morals. It’s a world run by evil, greed and money. Nobody cares about their fellow humans anymore and will step over and crush each other to get ahead in life. I am convinced that only bad things happen to good people while evil people thrive. My whole life I have treated others the way I want to be treated, with trust, compassion, kindness, and empathy. It has gotten me nowhere. I am 35 years old, working the same dead end job I did in high school, at risk for a disease that has been called the worst disease known to man, and I have no wife or lover to help me through it. This is not where I was supposed to be at this point in my life.
When I was a young, optimistic man in my 20s, I had certain expectations for my future self, none of which have come to fruition. While I do not know whether or not I have Huntington’s, at this point I do believe I am symptomatic. After seeing Dad slowly decline and die over the last decade, I have decided that I will not go out like that. Even if I don’t have it, I will still have to watch my sister die of it, and I cannot bear to watch her suffer the same fate Dad did. The only thing I have ever wanted in this life was a good woman to share my life with, however short or long that may be. Sadly, at this point, I have completely given up on that ever happening, which makes this life pointless. I am truly sorry. I love you all.
A little long, but I think that will do. I snub my smoke on the desk. Who cares at this point? Add it to the credit card I used to pay for the room. I unzip Sergio’s backpack and pull out the pistol. I have no idea what model it is. It doesn’t matter; it will get the job done. I pull out the bullets and put them in the chamber. I learned how to do it by watching a YouTube video. I stare at it while I sit on my bed, take another giant chug of whiskey, and then I grab it. I put the muzzle in my mouth. Fuck this shitty world. I put my finger on the trigger as the steel clanks against my teeth. It’s a weird sensation. In the back of my mind, a thought comes out. I remember hearing a story of the failed suicide attempt of a man who tried this same method. How he survived, I do not know. I think he somehow missed his brain. I’m not taking any chances. I move the muzzle of the gun to my temple, where it is a direct shot to the brain. Can’t miss from there. I am crying and shaking. Most people like to say a prayer before their impending death. I will not. If God does exist, He sure hates me; He has done nothing but torment and tease me my whole life with this disease. I press my finger down on the trigger and pull it….
I look up and see myself in a mirror before I can complete the act. Didn’t even know I had a mirror on the ceiling. How could I have missed it? When I see myself in it, I think, “Who is the poor maid that is going to service this room tomorrow and see my brains splattered all over mirror?”
Some things can’t be unseen. Something like this will traumatize her forever. Some poor maid, one who probably makes minimum wage and works 70-hour weeks to support her family, will have to see the mess. I can’t do that to her. My empathetic nature strikes again, but for once, it has helped me.
Jesus. Fucking. Christ! I can’t believe I almost did that. I open my hand, and the gun falls on the bed harmlessly. Oh, my God, OH, MY GOD! I almost went through with it. I almost fucking went through with it. I put my hands over my face and cry. I don’t know how long I cried, but eventually I come to my senses. First thing I do is grab my suicide note, crumple it up, and throw it in the trash. Then, despite shaking badly, I grab the pistol from my bed. It feels like it weighs 50 pounds. I don’t want to touch it. It’s poison. But I must. I unchamber the bullet and put it back in the backpack. I’m shaking so badly it takes both hands, but I stick the gun back into the backpack and zip it up. I strap the backpack on again. I have to get rid of this thing. I see my suicide note on top of the trash. Not good enough. I grab it, run into the bathroom and flush it down the toilet. Much better.
I practically run to my door and open it. Back in the hall again. I speed walk towards the elevators and hit the down button. After what seems like hours, an elevator opens, and I enter it. There is no one else on it, and I am glad. I hit the lobby button, and away I go. I look up. There is a mirror on the ceiling here as well, but that is pretty common for elevators. I see myself. I look scared and frantic, which I am. But I must calm down. I look too suspicious. I take a few deep breaths, and I feel a little more relaxed. Eventually the doors open. I quickly scurry out. I am speed walking past the roulette table I just played not ten minutes ago. It feels like days. Very few people see me. They are too engaged in their tables, and the few people that do notice me probably just assume I am running late for a flight and trying to catch a cab as quickly as possible. I don’t slow down until I reach the door.
I exit into the cool, crisp air. I know where I am going. Not far from the door is an alleyway with a giant trash bin. No one is around now. I take off running towards it. I open its giant blue door, rip off my backpack, and toss it in hard. It sinks towards the bottom, but that’s not good enough, so I start grabbing empty bags of trash and toss them on top of Sergio’s backpack, burying it completely. Then I shut the lid. I’m breathing heavily, so I bend down and touch my knees to catch my breath. It’s an old trick from my younger days when I was still competing in sports. Don’t know why it works, but it does. I do that for a couple of minutes. Tears are streaming from my eyes the whole time.
Eventually, I catch my breath. How long it took I will never know. I stand up and wipe my eyes with the back of my hands. I feel composed enough to head back into the casino. I begin to walk. There doesn’t appear to be anyone in my vicinity, and I am grateful for that. I think I look normal again, but without a mirror, I can’t say for sure. I look up as I walk. The sky is clear and beautiful. It really is a nice night in this fantastic city. Back to the casino door I go. I enter, and nothing seems to have changed. People are still gambling, drinking, hitting on cocktail waitresses, just having a grand old time. Nobody has any idea that not long ago I was going to be a dead man. My life has changed forever in the last 20 minutes, and for these guys, it’s like no time has passed at all.
I take a seat by a slot machine and put in a $100 bill. Why not? I already pissed away $600 for a product I never even used. What’s another hundred? As soon as I put in my money, before I even spin once, a cocktail waitress comes around, and I order a beer. Maybe my luck is finally changing after all. About time. I have always considered myself one of the unluckiest men on the planet, but after tonight, my perspective has changed. It has to. Tonight I am one of the luckiest men on the planet. How many people take their lives every day because they don’t stop at the last second like I just did? How many friends and family members are grieving the deaths of someone right now for that same reason? This act is often viewed as selfish. I can see why. People who take their own lives are freeing themselves from ever experiencing pain again, while their loved ones will suffer eternally. But the people who make that criticism have clearly never experienced severe depression like I have, and they most certainly have not seen Huntington’s disease at work.
Lucky for me tonight, I have chosen life, even if it was at the last possible second. No one ever said happiness comes easy. It seems like the majority of my life I’ve been dealing with one trauma after another, but as the lyrics to one of my favorite songs so poetically say, “It’s better to feel pain, than nothing at all.”
The time is now. I must gain my strength and go through with testing. When you have a 50-50 chance of inheriting Huntington’s disease, it feels like you have a gun pointed at your head with three bullets and three blanks. You just spin the damn chamber and hope you get lucky. It’s a terrible decision that no one should have to make, but 50 percent odds are a hell of a lot better than the near 0 percent I would have given myself had I pulled the trigger just minutes ago. My road to recovery will be long, and it will be tough, but damn it! I’m going to fight with every fiber of my being, and I won’t fail. I can’t. I owe it to myself, my family, my friends, and the countless thousands of other people affected by this dreadful disease to keep fighting. I have to believe that a cure is coming and that I will be alive to see it. Perhaps that is my purpose in life. It’s been a 20-year battle with that bitch HD. I am sick of fighting it, and no doubt I will lose many fights along the way. I already have. But rest assured, I will win the battle. If I ever consider giving up again, I will think about this night, and most importantly, I will look up.
Your perspective changes immediately when you just look up.
For an interview with author Brent J. Walker, listen to the archived episode of “Help 4 HD Live!” at http://www.blogtalkradio.com/help4hd/2017/01/18/an-interview-with-brent-walker-author-of-look-up.
If you or a loved one are considering suicide, please call the National Suicide Prevention Lifeline. The number is 1-800-273-8255. Someone is available to talk to 24 hours a day, 7 days a week. Help is confidential and free. You can also chat with someone online and find resources on their website, http://suicidepreventionlifeline.org/./* Custom Archives Functions Go Below this line */ /* Custom Archives Functions Go Above this line */
“Look Up,” Part Three: A Short Story by Brent J. Walker
Part Two left the narrator playing the slot machines, thinking about the fate of his father and contemplating his own risk for Huntington’s disease.
By Brent J. Walker
Would you look at that? This machine I’ve been playing has one of them old school levers on the side. You know, the ones that are the reason some people nicknamed slots “one armed bandits”? Wonder if it still works? Let’s give it a go…. I’ll be damned, it does still work. Pulling the lever is loads more fun than pushing a stupid button on a screen. From here on out, I am going to use it. Can’t believe it took me this long to notice it. I give it another yank, and out of the corner of my eye, I catch that petite blonde again. She appears to be looking at me, considering approaching perhaps? I must be mistaken, women don’t l approach men . . . ever. I never quite understood that. It doesn’t seem very progressive. This isn’t the 1950s anymore; men and women are supposed to be equals. So why in the hell does the man always have to approach the woman in situations like this? It’s much easier to be an attractive, shy woman than an attractive, shy man such as myself; that’s for sure. Women just have to hang out and look pretty, and eventually, a man will almost always approach them. I’m sure after time it would get annoying to get constantly approached by strangers mainly just trying to get in your pants, but at least they get multiple options of potential mates and can choose to reject or pursue them at will. That must be nice.
Now that I think of it, maybe this is why so many women end up dating terrible dudes. Think about it. What kind of dudes have the courage to approach strange women? Dudes that are aggressive enough to approach them in the first place. Emotionally detached enough that they are unfazed by any sort of rejection they may face by the girls they approach, and supremely confident to the point of narcissism. Three incredibly unattractive qualities that don’t translate well in real relationships.
Ah, shit. She is coming, and she is definitely smiling at me. Unless her boyfriend is behind me or something. She sits at the machine next to mine.
“Hi, there; how’s it going?” My palms immediately start sweating profusely. My brain locks up briefly. But eventually I respond.
“I don’t suppose I could buy a cigarette from you,” she asks as she starts to pull out a dollar.
“You can just have one for free.”
“Thanks,” she replies. I pull out my pack of smokes and push one up out of the pack a little bit so it’s easier for her to get. She grabs it and sticks it into the corner of her mouth. She reaches in her right pocket and pulls out an empty hand. Then she reaches in her left pocket, still nothing. She begins to pat at every pocket on her body. I know this game. I pull out my lighter and set the tip of her cigarette aflame.
“Thank you. I had a lighter earlier, but I don’t know where it went.”
“No worries. I lose about a lighter a day myself. Casinos must eat them or something.” What a dumb thing to say. Who says crap like that? Never mind, she appears to be giggling, so I guess I’m okay.
“I think you are right about that. So how’s your night going?”
“Well, I’ve been playing this slot for about an hour now on twenty bucks, so I guess I’m doing pretty well.”
“That’s actually really good. It takes me about 30 seconds to lose twenty bucks. These machines are rigged,” she tells me.
“I’d have to agree with you there. Imagine how awesome it would be to own a casino. Those guys must just make money hand over fist.”
“Sure would like to see one of their weekly paychecks. I bet the amount is eye popping.”
“Just imagine being able to buy anything you want, whenever you want. Talk about the American dream,” I respond.
“Yeah, I hate worrying about my finances. I’m Tiffany, by the way. What’s your name?” She extends her hand; I shake it.
“Mickey! Nice to meet you, Tiffany. So are you on vacation, too?”
“No, I actually live here.”
“You must really like the heat then. I don’t think I could handle it for very long here. I live in Seattle. We rarely hit 90 degrees. Can barely imagine seeing upper 90s to 100s at all, let alone every day.”
“You get used to it after a while, just like anything. Seattle, huh? I hear it rains a lot over there.”
It’s a classic response. I’ve only heard it five hundred times in my life. But this chick is smoking hot. She’s thin, which I prefer, has beautiful blue eyes, which is by far my favorite color, and my God! Those breasts are perfect. I think they’re all natural as well. Never been a fan of plastic surgery; I prefer self-acceptance. Best of all, she’s actually talking to me, which never happens. So I better play it cool.
“It sure does, but it’s the months of gray skies in the winter that are worse. Rain I can handle, but the sun sets at like 4 p.m., which sucks. I’ll tell you, though, there are few places in the world more beautiful than Seattle in the summer. Steady 70-80s, with a cool breeze and amazing view of the mountains and oceans,” I explain. I am shocked at how well this conversation is going right now. Maybe, just maybe, my luck with the ladies will change for once.
“That sounds amazing. So are you vacationing alone or with a friend?” she asks.
“Alone. I like to come here to clear my head. Been doing it once a year for a decade.”
“Makes sense. So you staying at this casino then?”
“I am. You can’t really go wrong with hotels in this city. They’re almost always roomy and super inexpensive, compared to other cities.”
“Are they? Are you sure you’re okay? You seem tense,” she asks. Damn! What happened? I thought I was doing really well here. No awkward silences or anything up to this point, which is unheard of for me when I am talking to any stranger, let alone a gorgeous, busty blonde with a super tight body. I thought I was hiding it well, but I guess not. She’s right; I am tense.
“I’m just a little tired is all.” It’s my favorite bluff. I use it all the time as an excuse to cover up my inadequate social skills.
“You look like it. You want a massage? Perhaps one with a happy ending? My rates are very reasonable.”
My jaw drops. Of course she’s a prostitute. Why else would she talk to me? Like everyone else in this city, she wants my money. How stupid are you, Mickey? My God, you are dense. Did you really think a chick like that just wanted to talk to you for fun? I am completely devastated and extremely embarrassed.
“Thanks, but no thanks. I’ve been in here far too long. I need some fresh air. I think I’m going to take a walk.”
She looks pissed. Time is money in her profession, and she wasted some of it by talking to me. I guess I looked like an easy mark.
“I see. Well, Mickey, if you change your mind, here’s my card.” She hands me a picture of herself with stars over the nipples and a phone number and walks away. “$400 an hour,” it says. Good Lord! No sex is worth a price tag like that. Even if her price wasn’t so large, I would still decline her offer. I’m old fashioned like that. Sex without emotional attachment or some form of love is a complete waste of time, in my opinion. I’ve never had a one night stand and don’t plan on it. I feel like a woman that sells her body for money must have had some kind of sexual or emotional trauma in her life, and I would only be taking advantage of that. It is, after all, a very dangerous profession. I know this is a biased and judgmental thing to say. Not all women that sell their bodies for money have had trauma. Some are free spirits that just like sex because it feel great, and it’s easy to do, so why not get paid, too? Especially in a city like this, where money flows like water, and you can make a pretty good living. Not to mention experience, while desired by some Johns, isn’t necessarily a requirement. For the most part, the body knows what to do when it comes to sex. It is instinct; the desire to procreate is engrained into our DNA.
I think on many levels the secret to life is to find immortality somehow. I think in general, most humans want to be remembered for something long after their deaths. People often produce art, music, literature, and movies for this reason. Athletes want to win as many championships as possible and make their respected halls of fame so that they will be remembered forever in their sports’ lore. So what better way to live eternally than to have a child who will carry your genes on after your soul departs from Earth?
How exactly am I taking advantage of a hooker anyway? They provide the service of sex, which most people desire and need, and in return, they get money for it. Is that not mutually beneficial for both parties? Don’t we both win? Seems like we do, but for some reason it just seems morally wrong to me.
What the hell are correct morals anyways? The concept of morality is subjective at best. Everyone is raised differently and develops different forms of morality, depending on what kind of culture they grew up in. So who I am to think my morals are somehow superior to anyone else’s? I try not to think they are; I try not to judge how other people live their lives, but sex, to me, isn’t just about pure physical pleasure. To me, it’s more about spirituality. It’s about two souls combining together as one on the highest astral plane possible in the only way humans know how to. This is my morality. It’s not necessarily better than anyone else’s or even correct, but it’s nonetheless how I live my life.
A walk actually sounds great right now. I am meeting someone soon anyways. Where am I at on this machine now? Down to just over $6 now. Didn’t realize how many times I pulled that handle while I was being distracted by that tramp, Tiffany. That’s good, though. Three more max bets, and I am finally done with this machine. Stoked I played as long as I did, but that $20 was bound to disappear eventually. Pull one, and I’m down to about $4; pull two, and I’m down to $2. Pull number three should do it. Wait! Back up to $4; two more spins now. I rip down that handle again. Well, up to about $6 now. Why is it that when you want to lose on purpose on these machines you keep winning, but when you want to win you keep losing? Are the slots designed to do that, or is it just Murphy’s Law? Screw it; this could take a while. What If I start winning again? I will never leave. I’m just going to cash out. “Congratulations, collect your money,” the machine reads. It always does that. Even if you’re only cashing out a penny. Super lame. I should sue them for false advertising. I collect my $6.32, chug the rest of my beer, and head outside.
That same bum I saw earlier is still there; he’s asleep or possibly in a liquor coma. Either way, I’m dropping my winnings in his little plastic cup. I hope he uses it for food instead of drugs or alcohol. But I guess I will never know for sure. Not that it matters. Money is the root of evil, as the saying goes, and boy, is it true. To hell with these rich prick CEOs of giant corporations. All they care about is money. They want more and more every year and will do anything they want to get it, including screw over their thousands of hard working blue collar workers such as myself by cutting our benefits, wages, and hours. They don’t care if I live or die as long as profits are up, so they can keep buying ridiculously expensive items like mansions and fancy cars. How much damn money do these people need anyways? People all over the world are struggling to keep a roof over their heads, food in their mouths, and keep up with their medical bills while these greedy bastards live the high life. How can they lack empathy like that?
I read somewhere that most rich people are natural sociopaths. When I think about it, I can see why. Most people know what it’s like to live paycheck to paycheck, or to be a poor college student living off cheap soup, and they can naturally relate to the emotions and struggles of say someone living on the street. But how can someone who was born rich and stays rich their entire life possibly relate to that same person when they have never experienced what that person is going through?
I read on the internet that someone did some advanced math. They took in account average wages, inflation rates, housing rates, food rates, etc. of the current generation and compared it to the generation of their parents and determined that this is the first time in history that the current generation makes less than their parents, and by a significant margin. I can see it. When I was a child, almost all my friends’ parents owned their own homes. But now, I don’t think I know anyone that does. Rich people keep getting richer, and poor or middle class people keep getting poorer. The discrepancy of the social classes in this country is off the charts. There has to be something we can do to fix that, or we are in big trouble.
I like to compare the billionaire CEOs of the modern day to those of Pharaohs centuries ago, and the average working class Americans to those of peasants centuries ago. A peasant breaking his back to make his Pharaoh more wealth than he could possibly use in a lifetime. There is just one difference. Back then, when it got this bad, the peasants would revolt. They’d take up arms and either kill that pharaoh or run him out of town. So what do we do in this day and age since we are too “civilized” for such behavior?
People say you should vote. You pick the representative of your town, state, and country and let them make the laws for you. I disagree, because we have a flawed two-party system. Your president is either going to be a Republican or a Democrat. And why are those the only two choices? Because they have the most money, of course. I don’t give a damn if it’s a Republican or Democrat in office because both are corrupted by money. Before they are in office, candidates will say and do ANYTHING to get elected, but how often do they actually follow through with what they say they would do, if they get elected? Not to mention if they do make it to office, they are indebted to the corporate money that got them there in the first place. So they create laws that will benefit those corporations that supported their campaigns instead of creating laws for the good of all mankind. As far as I’m concerned, they can all rot in hell. I think there is somewhere in the realm of three dozen political parties that made ballots this year in the United States. We need free air time for all of them so we can eliminate our horrendous two-party system. Unfortunately, it will never happen because there is way too much money invested in the Democratic and Republican parties.
My brain is going on another tangent again. I need to slow it down and look up. A casino across the street is blasting off a mini fireworks show. Must be the top of the hour. Every hour, on the hour, on weekends, that casino does that. I wonder how much money it costs? People in this town definitely have more money than they know what to do with, for sure. At the same time, it is absolutely beautiful to look at. There is just something so majestic and awe inspiring about watching fire bursting into a dark, moonlit sky and exploding into showers of bright colors; it makes you feel free somehow. I’m sure this little show draws in several dozen customers every time it starts. People walk by, see it, and think, “Well, that place seems cool. Let’s go there.”
I light up a fresh smoke and stop to watch the entirety of its five-minute or so show, then look at my watch. Currently it is 3:06 a.m. Sergio told me to meet him at his restaurant anytime between 3 and 5. Might as well head over there now; it’s not far. It’s a little hole-in-the-wall 24-hour breakfast joint called Pigs and Hens. Best breakfast joint in the city, or so Sergio says. Not that I know whether I believe it. I just met the guy last night, and he’s not exactly a standup citizen.
Pigs and Hens is about a block away from my current location, but the blocks are deceptively large in this city. The street is still bustling as usual, despite how late it is, almost 4 a.m. Not quite as much as it was an hour ago, but still a good turnout. Casino lights keep the crowded street bright, and it seems at every corner there’s someone dressed up in a costume. An Elvis impersonator is over there, and Marilyn Monroe close by. No surprise there. Those are two of the staples. I keep walking and pass by a group of people standing around looking at something. I come up closer and see that it is a gray-haired man with a deck of cards in his hands. He’s doing a mini magic show for a crowd that stares at him like a monkey in a zoo: mouths gaping, eyes attentive. I’ve seen it all before, so I keep walking.
Ah, here we go. This is more my style. There’s a man painted head to toe in silver paint. He is not moving, not even an inch. Damned if he doesn’t look just like a statue. I’ve seen this before, too, but I find it highly entertaining. People walk by him, oblivious to the fact that he is not a statue, and every so often, he jumps out and scares the crap out of them. Most people know this game; this isn’t their first rodeo, so to speak, but every so often, someone walks by that has no idea what’s about to happen. Their reactions are priceless.
I watch for a while, smiling and laughing, then I continue my walk. I see it now. Pigs and Hens, just around the corner, right smack in a dark alleyway. Classy joint! I see a group of four women in their mid-twenties or so walking out. One is a blonde wearing a hat in the shape of a dildo and a Bachelorette satchel; the other three are physically dragging her. Part of her satchel appears to be covered in something, but I can’t quite tell what yet. I get closer, and the smell hits me like a slap across the face. It’s vomit, of course. I cover my nose and mouth with the top of my shirt.
“Looks like someone had a little too much fun tonight,” I say, giggling like a maniac.
“Oh, fuck you.”
“Piss off,” two of them say in almost perfect unison. I am unfazed by their remarks as I continue laughing. Either that girl had too much to drink, or this place doesn’t have the best bacon and eggs in the city like Sergio claims. I open the door, and immediately, the strong smell of bacon hits my nose. Inside, the lights are dim, and the walls are a very plain, uninspiring white. There is a pinball machine in the corner, and a young man with a mop is currently wiping the floor around it. There are only five tables in the whole joint, and only one is currently occupied. Sitting at it are Sergio and a few other men playing poker. Each has a pile of chips of various sizes in front of him. Sergio is bald on top but has a long, thick beard, with flecks of gray in it and probably weighs at least 300 pounds.
“We’re temporarily closed, partner. Some little bitch couldn’t handle her liquor and blew her cookies all over the floor. Luckily, most of it got on that pretty little dress of hers instead,” an older man with glasses says, laughing devilishly.
“I got it, Grizz. This man is here to see me,” Sergio says.
He shakes my hand. “Don’t pay any attention to Grizz. Old bastard is just pissed off he can’t win a hand tonight. Ain’t that right, Grizz?”
“Yeah, yeah, I may be losing my ass now, but that means my luck is going to change soon. Law of averages, buddy.”
“Well hope in one hand and shit in the other, see which one fills up faster, as me old mum used to say. I got some quick business to take care of, fellas. Mind my cards and my money while I‘m gone. I got cameras all over this place, so if anything looks out of place, I’ll check them. You cheat while I’m gone, and I’ll kill you,” Sergio says. He’s not kidding. This is not someone you mess with.
“Step into my office, Davey.”
“Stop right there. I don’t need to know your real name, Bucko.”
We head through double doors that lead to the kitchen. There’s a couple grills, a couple fryers and one lone fry cook. More than enough for five tables, I suppose.
“Take a break, Chino,” Sergio hollers.
Chino leaves, no questions asked. Sergio reaches under a counter, pulls out a backpack, and hands it to me. My palms start to clam up as I unzip the bag and look at the contents inside. Everything seems to be in order.
“You got everything you need in there, son?”
“Yes, sir. It looks like it,” I say.
“Excellent. Now, there is the question of my payment,” he says.
I pull out my wallet and withdraw five crisp $100s.
“Here’s five hundred for you,” I say.
“Yeah, about that. Turns out finding this product so quickly was a little more difficult than I previously anticipated. So I am going to have to tag on a 20 percent tax. That’s not gonna be problem, is it?”
I am a little caught off guard. I try to calculate what 20 percent of $500 is, and it takes a little longer than it probably should, but eventually my brain starts working again, and I figure it out.
“No problem, I can handle that.”
I reach into my wallet again, pull out another $100, and hand it to him. I know I am getting gouged here, but what the hell am I supposed to do about it? He claps me on the back.
“That’s a good kid. Now take that backpack with you and get out of my sight. I don’t know what you are doing with that, and I don’t want to, so I strongly urge that you lose my name and this location. If you fuck up, and this somehow comes back to me, I will find you, and I will tear you apart with my bare hands.”
I don’t doubt it. He has arms as big as my thighs and hands so big he could probably strangle me with one tied behind his back.
“Not a problem. I already forgot where I am.”
“That a boy. I knew you had a trustworthy face.”
I strap the backpack onto my shoulders and exit the kitchen. Sergio’s three poker buddies are still sitting down around the poker table. I have no doubt that they didn’t touch Sergio’s stack of chips or his cards. In fact, I doubt they even looked in that direction. I open the door and enter the alley while once again lighting up a fresh smoke. The drunken bachelorette and her friends haven’t gotten far. They are on the side of the street trying to flag down a cab. Good luck with that, I think to myself. Not only is it illegal to catch a cab from the side of the street, but even if it wasn’t, what cab is going to pick up a girl with fresh puke on her dress? I could tell them that, but after my previous interaction with them, I know they don’t want to hear anything I have to say. Besides, they’re probably all a bunch of bitches anyways.
To be continued next Wednesday, February 8
You can hear Help 4 HD Live!’s interview with Brent on BlogTalkRadio: http://www.blogtalkradio.com/help4hd/2017/01/18/an-interview-with-brent-walker-author-of-look-up/* Custom Archives Functions Go Below this line */ /* Custom Archives Functions Go Above this line */
“Look Up”: Part Two, a Short Story by Brent J. Walker
Last week’s installment left the first-person narrator in “Sin City”–Las Vegas–mindlessly gambling and drinking, wondering why he, a trustworthy guy, can’t find true love.
By Brent J. Walker
When you ask most women what their dream man is, they say something like this: “I want a guy who is tall, dark, handsome, and romantic. Someone who likes long walks on the beach, puppies, and kittens. Someone who likes to cuddle and watch movies, someone who can make me laugh, someone who is kind and gentle and will go out of his way to make me happy when I’ve had a bad day.” Well, that’s funny, because I am all those things, and I can’t keep a woman to save my life.
Am I tall? Check! I’m above six foot; I think that counts as tall. Am I handsome? Check! I have beautiful baby blue eyes, a strong jawline and a symmetrical face which studies have shown is attractive to somewhere around 90 percent of women. Am I r1omantic? I am as romantic as they come. When you have a creative mind like I do and have been single and alone as long as I have, you spend all day thinking about what you will do if a woman were to finally come into your life. Do I like long walks on the beach? Holding hands with my woman while we feel the sand beneath our feet, stare at the moon, and listen to the waves crash on the beach sounds pretty awesome to me. Am I someone who loves puppies and kittens? Absolutely. I adore animals, and they, me. Animals are easy. All they want is to be petted and loved, and at times rewarded with a treat. I can certainly understand that. I am a simple man; that’s all I want, too. An animal’s senses puts human senses to shame. They can sense when someone’s soul is pure, which is why they gravitate towards me, I think. Am I someone who likes to cuddle and watch movies? Hell, that’s pretty much all I want. Never underestimate the power of human touch. A simple hug enhances one’s mood tremendously, as studies have also shown. Sex is great and all, but it is the simple act of hugging and cuddling that I find I miss the most about having a girl. Do I have a sense of humor? I am pretty quick-witted. You get me in a room with people I am comfortable with, and I’ll get you laughing in no time. Am I kind, gentle, and have the ability to make someone happy when they are sad? Check, check, and check. So tell me then. Why in the hell I am alone in this world? Everyone deserves to be loved. So why does a good person like me get his heart broken, over and over again?
I’ll tell you why. I suffer a disease of the mind. It’s called shyness. Make no mistake; shyness is a debilitating disorder. I can’t get over it. I’ve tried my whole life. For instance, on my left about two machines over is a petite, blond-haired beauty sitting alone. I should talk to her, but I won’t. Why not?
“People are people. We all need other humans around us in this world to stay sane, and the ability to converse with each other is what differentiates us from beasts,” a friend once told me. He is absolutely correct. Inherently, I know that his logic is true, but there is a blockage in my brain that prevents me from acting out on that logic. Unless you, too, have the disease of shyness, you just can’t fully understand where I am coming from. I’m gonna try to get you to anyway, though, by putting you in my brain for a bit. Here’s a list of just some of the thoughts that came to my mind within seconds of seeing that pretty young thing over there at that machine that prevent me from talking to her.
- You’ve let yourself go over the years. You aren’t the strapping, muscular young man you once were; she won’t be attracted to you.
- Look at how hot that girl is! She’s probably been hit on by at least ten guys already tonight. That has to be annoying for her. I don’t want to be like everyone else. Besides, what do I have that the other ten guys she rejected tonight didn’t?
- She’s probably already got a man anyway, so why waste my time?
- Even if I do get the nerve to go up to her and strike up a conversation, I will quickly freeze up and embarrass myself.
- I am sure she wants to be left alone and will just tell me to go away.
- What the hell would we talk about? The weather? Isn’t that the world symbol for most boring conversation starter of all time?
- I bet as soon as I start talking, her boyfriend will pop up out of nowhere, take offense, and sock me in the face.
- She’ll know right away that I am lower middle class. Only a guy with money can get a girl like that.
- Shit! I lost my pack of gum, and I have been drinking and smoking all day. I bet my breath is horrible.
- Tonight’s priority was to gamble and get wasted, not to talk to women. So I am just going to keep doing that.
That’s just a top ten list of thoughts that go through my mind in this situation. There is plenty more I could write down, but it would take way too long to go over them all. Damn, this is frustrating. How do I shut these thoughts off? I know they are mostly illogical. I once heard this kind of behavior called “analysis paralysis.” I like that; it’s a fitting name, and it has a ring to it.
Whoops, there goes my mind again, churning as endlessly as the sea. They say this is the city that never sleeps. Well, neither does this brain of mine. Maybe that’s why I am so drawn to this place. Now, where in the hell is that cocktail waitress? Never mind, I still have half a beer, and it’s not warm yet. Might as well take another long pull and spin that damn wheel again. Round and round the slot machine goes, where it stops nobody knows. But when it does finally stop, it sure as shit won’t stop at the jackpot; that’s for sure. Never seen that happen and probably never will.
Hey, will you look at that? Multiple cherries on the board. That has to be good. I’ll be damned; that spin just won me twenty bucks. From ten dollars left in the coffer to thirty, just like that. Puts me ten bucks ahead on the night. Joke is on you, “Sin City” I’m ten bucks and two beers up now. Ha, ha, I’m feeling generous, too. If that cocktailer ever shows up, she gets a two-dollar tip now.
I should probably quit while I am ahead….but I won’t. Go big or go home is what I always say. Not that the twenty bucks I originally put in the machine qualifies as going big, but you get the point. Cherries are always good, in slots, in scratch tickets, and even in pull tabs. Wonder why that is? Maybe the first slot machine creator ever just really liked cherries and was like, “Hey, let’s make three cherries a win,” for no reason at all. Or maybe it’s symbolic of something. Who really knows?
Sevens are always good, too. But that makes more sense. “God created the heavens and the earth in six days, and on the seventh he rested.” Seven continents and seven oceans on Earth, seven colors in a rainbow, seven days in a week. Seven is considered lucky to most people. Not to me, though. I was born in the seventh month of the year, but I ain’t lucky, never have been and never will be, so I prefer thirteen; it’s my lucky number. I figure since I am unlucky, and the number thirteen is unlucky, that when we add them together, they cancel each other out. How did I reach this conclusion? I have no idea. Superstitions are funny like that and can be literally anything. Athletes often don’t shave their beards or cut their hair for months at a time if they are on a hot streak, which doesn’t make sense. Long hair makes it harder to see and gets in the way. Seems to me this would make it harder for them to perform at a top level in their respective sports. Rabbits are basically just cute little rodents, but for some reason murdering them, chopping off their feet, and wearing one around your neck is considered lucky. Cinnamon sticks, socks, goldfish, hell, even spiders are sometimes considered lucky, and most people hate them. Almost everyone has a good luck charm of some sort and usually for an illogical reason.
Ah, here she comes with my beer. ʼBout time. She is certainly a busty gal. She’s a bit older, though. In her late forties at least, but still, overall, pretty spectacular breasts that are only just barely starting to droop. They say a stripper’s primo years are between 18-25; once they are closer to 30 than 20, it’s all over. Might as well quit. So where do they go for employment when they are considered too old to strip? They become cocktailers, of course.
See, I can be funny when I want to be. Or was that joke more offensive than funny? Maybe it was. I always think I am a good guy with a high moral compass, but maybe I have it all wrong. Maybe I am just a dick and deserve what I get. She hands me my beer. I hand her a buck. Was going to give her two, but changed my mind. I consider myself a patient, understanding man, but even I have my limits, and she took forever. I think it did anyways.
Is it time for another smoke? I think it is. Got me a fresh beer and currently up some money on this slot. No need to rush and keep spinning the wheels. More time I take in between spins, the longer I can play before I lose it all, and I will lose it all eventually.
I exhale the smoke through my nose. Damn these devil sticks. But like I said, it was a rough year. Aside from getting my heart broken again, my father died. I’m glad, though. The man was in pain for far too long, his quality of life horrendous for years. It was Huntington’s disease that got him. Ever heard of it? Of course you haven’t. No one has unless they’ve gone through it with a family member themselves, which is ironic, because it is one of the most devastating diseases in the world. Have your heard of ALS? Lou Gehrig’s disease? I’m sure you have because the ice bucket challenge that was clogging Facebook feeds for months brought all sorts of attention to that disease. How about Alzheimer’s? I’m sure you’ve heard of that, too. It’s been well documented in movies, books, and songs. How about Parkinson’s? Michael J. Fox has brought all sorts of knowledge to the masses about that one. Well, Huntington’s was compared to having a combination of all three at the same time on a recent documentary, yet so few people know anything about it.
My father was diagnosed with it probably about twenty years before his death. It is a neurological disorder. It begins when a small part of your brain doesn’t work correctly, and basically over time erodes your entire brain, or something like that. Haven’t researched it much because it bums me out too much. It starts with small symptoms. Maybe some minor memory loss, forget a word here and there, maybe lose your balance every so often. No big deal at first. Then it starts getting worse, and the constant, jerky movements start. Neurons in your brain start misfiring more and more, and your body starts moving whenever it wants, and your brain can’t control it. People with HD in the olden days were often mistaken for witches and burnt at the stake. After that, you eventually start the latter stages, which is the inability to talk or move or think properly. My father was like that for the better part of a decade. Twenty-four-hour care was required to feed, bathe, and wipe his ass. My father, the West Point military grad who played college football and ran in the Boston Marathon, couldn’t even wipe his own ass. Can you imagine seeing your father like that for nearly a decade?
That’s not even the worst part. The worst part is that aside from it being incurable, each kid has a 50 percent chance of inheriting it. As if watching my father decline and die for years wasn’t bad enough, I had to watch my father’s brother die of it as well, and my grandma, too, and while I was watching them die, the entire time I’m thinking, “Sweet. This could be my future.” I also have two siblings. Both have been tested. My little sister has it, and my older brother doesn’t, so assuming I am capable of thinking in the future, I will have to watch her die, too. Not me, though. I remain the sole untested Davis child. Fuck that shit. I wouldn’t be able to handle it if was positive because I am single, and I live alone. Not only would I not have the emotional support of a girlfriend or fiancé like my siblings did when they went through the testing process, but what is the point of getting tested for something that has no cure? There are only two valid reasons to get tested, in my opinion. If there was a viable treatment option, then obviously I would want to get tested immediately and start the treatment. Or if I was married and we wanted to have kids, because there is no way I am passing this disease on to them. I would adopt or abort before I did that.
At this point, I have pretty much accepted the fact that I will most likely die single and alone, so I guess fingers crossed for a cure or some kind of treatment, but it doesn’t really matter at this point. For now I will remain untested. Can you blame me? What would you do if you were in my situation, and literally the flip of a coin was what would determine whether you would become terminally ill or not? For the most part, I have kept this part of my life a secret. The last thing I want is for people to pity me. Very few people know about it.
To be continued next Wednesday, February 1
You can hear Help 4 HD Live!’s interview with Brent on BlogTalkRadio: http://www.blogtalkradio.com/help4hd/2017/01/18/an-interview-with-brent-walker-author-of-look-up/* Custom Archives Functions Go Below this line */ /* Custom Archives Functions Go Above this line */
“Look Up”: A Short Story by Brent J. Walker
Brent Walker, Author of “Look Up”
By Sharon McClellan Thomason
Brent Walker, from Seattle, Washington, approached me about three months ago about a short story he’d written. I asked him to send it to me. He warned me that it was a little long, but as soon as I started reading it, I was hooked!
By way of introduction, Brent says, “My father, John, was one of four siblings, brothers Doug and Jim and sister Irene. I only met Jim a few times, and it was common knowledge that he was a little off. We mistakenly just assumed that it was due to the trauma he endured in the Vietnam war, when in fact it was HD, as we came to find out later in life.
“Their mother, Gladys (my grandmother), passed before I was old enough to remember her or to know anything about Huntington’s disease. At the time of her death, no one had ever heard of HD. About 20-25 years ago, I started to become familiar with Huntington’s disease and came to the realization that this was the disease that was responsible for the heartache of the Walker family and that my father was at risk.
“There was a huge technological advance in the early 90s, I believe, that allowed people at risk for HD to get tested. My father got tested soon after and was unfortunately positive. This put myself, my little sister, Stacey, and my older brother, Scott, at risk of inheriting the disease, by 50-50 odds. My brother was the first sibling to get tested, about 15 years ago. He tested negative, then proposed to his wife shortly afterwards. They have three kids and are still married to this day. My sister got tested next, about five years ago, right before she, too, was going to get married. Unfortunately, she tested positive.
“For the better part of a decade, I debated whether I should get tested. Having watched my father degrade for years before he eventually passed a few years ago, I was in no hurry to get tested. For me, it was very simple. There were only three reasons to get tested: (1) if I, too, was going to get married, so my future wife would know what she signed up for; (2) if I wanted to have a child; I had already decided that I would only have kids if I was negative; and (3) if there was any feasible hope of a cure on the horizon.
“This past year, I had read lots of information about possible treatment for HD coming up soon. There is more hope out there right now than ever before. So I elected to get tested. On December 13, I found out I was negative. I took my brother with me, and he jumped into my arms after the doctor said I was negative. While relieved, I must admit I was not nearly as excited as I thought I would be. Survivor’s guilt is a real thing.”
I asked Brent what inspired him to write the story. He told me, “I have always been very fond of writing and have written a lot of short stories in the past (I even wrote a screenplay once). but none of them have ever been published. For me it is very simple. I want to help people. I don’t care about money; I never really have.
“Most of my life, I have been haunted by this disease. For twenty years at least I have had the weight of this on my shoulders. For the most part, I did not talk about it much in those 20 years as I didn’t want people to pity me or treat me differently. When I finally decided I was going to go through with it and get tested, I decided to open up more about it to friends and coworkers, and what I found was that my story was not met with pity but that it in fact seemed to inspire people. So perhaps by sharing my story, I could do just that if I wrote about it.
“I would say about 90 percent of ‘Look Up’ is based on my own experience. I go to Vegas with friends every March, have for about seven years, and I take that time to reflect on my life and think about where I am. The idea for this story has been in my brain for years, but I only recently decided to put it on paper and share it.”
You can hear Help 4 HD Live!’s interview with Brent on BlogTalkRadio: http://www.blogtalkradio.com/help4hd/2017/01/18/an-interview-with-brent-walker-author-of-look-up
Brent’s story will be published in three weekly installments. The story includes some adult situations and profanity. This is Part One.
By Brent J. Walker
It reeks in here! Stenches of stale beer and ancient cigarette smoke invade my nostrils as I push the spin button over and over. This has to be something. Give it to me! Damn! Only a 25 cent win? I’m playing max bet at two bucks a spin. I hate that the lights flash, and the music plays for such a small win. It gets me excited for nothing. Doesn’t matter. I’m going to keep spinning this damn robotic and soulless wheel anyways. I plan on losing all my money as slowly as possible, though, so I light up a fresh smoke and take a sip of my beer.
“Cocktails?” a middle-aged blonde waitress wearing a frilly purple dress asks. She has wrinkles on the corners of her mouth, a side effect from the years and years of fake smiles she has had to give over her career in the service industry.
“I’ll take another beer,” I reply. She jots it down on a small pad of paper. My current beer is nearly full, but they are free when you are gambling, and it’s just about the only way you can feel like you are winning in this Godforsaken city. Besides, I’m stoned out of my mind, and I have cotton mouth like a bastard.
I take a huge swig of my current beer, and just like that, the cold, refreshing amber colored beverage is halfway gone. Like my money is going to be if I keep playing this game. This city . . . it’s a paradox. I look outside, and I see a homeless man asking for change. Some poor bastard that probably moved out here to pursue the American dream of fame and fortune before getting seduced by the slots and the card games, and blowing his entire life savings.
I look straight ahead, and I see a couple of young girls weaving around drunkenly with blank-eyed stares, mumbling nonsense conversations to each other that neither will remember in the morning. I just hope they make it to their rooms safely; the wrong guy sees them, and he might just take advantage of their inebriated states and convince one of them to come back to his room. Predators abound in the “City of Sin.”
I look to my left, and I see a man in a suit looking for lonely dudes he can convince to go to his strip club. Free ride there, free ride back, and no cover charge is usually the pitch. What they don’t always tell you is that it’s a three-drink minimum once you get in, and drinks go for about twenty bucks a pop. Not to mention those strippers are very persuasive. Before you know it, you just dropped a hundred bucks on drinks and lap dances and left wondering how the hell that just happened.
They swindle you in this city any way they can. They don’t just want a week or two of your wages; they want your whole damn bank account. But look up, and damn! These casinos are some of the most impressive manmade structures on the entire planet. Never mind that the cost of the chandeliers on the ceiling of the casino I am currently at might cost more money than I’ll make my entire life. Beauty is beauty, and boy is there beauty in this town despite its obvious ugliness and degradation. It’s interesting how one’s mood can be immediately changed when you look up, especially when you are outside. Seriously! Try it some time. When you are sad or angry, and you look up at the sun or the moon, the clouds or the stars, those feelings often go away. You realize how beautiful and gigantic the world truly is. The human race is nothing but a small part of it, which makes your petty problems completely insignificant.
I wonder how long it will take me to get that drink. They aren’t in any hurry; that’s for sure. Why would they be? The longer they take, the more money you will spend on the slots. It must be nice. I worked at a restaurant for a while. Speedy service was important. Longer it took to get the guest his beer, the smaller the tip you might get once the check was dropped, and tips were your livelihood. It sure as hell wasn’t the minimum wage. It must be nice to be able to take your sweet time and know that you will most likely still get a buck tip. It’s the least people can do for a free beer. To be fair, I don’t know for sure how long she’s been. Weed is funny like that sometimes, and I’ve had my fair share of it the last couple months. It’s a stress reducer for me, and boy, have I been stressed. Ten minutes can feel like an hour, and an hour like ten minutes. Doesn’t matter. I still have half a beer and plenty of smokes. Speaking of, let’s light up another.
Cigarettes! Fucking cigarettes, devil sticks. Can’t believe I picked up the habit in my thirties. Who the hell does that? What can I say? It was a rough year. It started when I got my heart broken by a woman named Megan that I had fantasized about being with for five or so years, and I’ll be damned if I didn’t finally succeed and get her in my bed and hold on to her for some time after. Happiest summer I’d had in a decade. Of course, it didn’t last; it never does with me and women. Shortly after Megan broke my heart, my father passed of a rare genetic disorder. More on that later. I swear I’m cursed when it comes women. I’m pretty sure I had a great, great, great grandpa once who pissed off a gypsy or something. I can picture it now.
“Because of you what you did, your great, great, great grandchild will never find love,” the gypsy will have said, and of course that happens to be me. Either that, or I was a terrible person in my former life, and God is smiting me for it in the current one. I used to think there was something wrong with me. Why else do I continuously fail with women? But I’ve realized something over the years. It’s not my fault. Not at all. I failed with Megan because her ex cheated on her constantly with several different women for the entire decade they were together. Hard to trust anyone again after that. Which is unfortunate, because I am as trustworthy as they come.
To be continued next Wednesday, January 25, 2017./* Custom Archives Functions Go Below this line */ /* Custom Archives Functions Go Above this line */
Why Mental Illnesses Should Be Treated as Seriously as Physical Illnesses
A day in the life of someone who suffers from Huntington’s disease:
July 22, 2016
My first trip to the emergency room for anxiety.
*Alarm goes off*
I literally can’t get out of bed today. I have to get out of bed today. If I lay here and do nothing, then I’m wasting all of my time and being lazy. If I get out of bed, then I have to face the world. My head feels so heavy. The clock always ticks so slowly, and I’m going to have to talk to a lot of people today. Maybe I can call in sick. Maybe I’ll crash my car on the way to work. Maybe…
I get up to get ready.
My hair looks so frizzy today. You know what? I’m not going to wear makeup today. No-wait, if I don’t wear makeup, people will think that I’m lazy and ugly. But if I put on my makeup, people might think I’m trying too hard. I have to put on just the right amount.
Ugh, I overdid it again. I look like a slut now. I’ll have to wear something to make it look like I really wasn’t trying that hard.
I throw on some sweats and a t-shirt.
Now my face and my outfit don’t match. I just won’t go anywhere until I have to work.
I look at all of the medication I have to take for the day. Sometimes they make me feel almost normal, and sometimes they make me feel like a ghost.
I wonder if I could leave out this medication and replace it with this medication so that I’ll be able to feel better? I’ll just take these five and this one later. I hope they keep me level-headed today. If not, I’m really screwed.
I sit down on the couch to try and watch some T.V., but my thoughts are racing so quickly that I can’t even concentrate on what I’m watching.
What am I doing with my life? I’m 23 and still in school. I have so many bills to pay. What if I never meet someone before I get sick? I want to have children so badly. What about my mom? I have to help her, I have to make her well. And my sister, she can’t have Huntington’s, and neither can my nephew. If we all have it, who will take care of us? I’m sitting on the couch, literally doing nothing with my time. What if my writing career never takes off? I don’t even feel normal enough to punch something out really quick. Why don’t I look like that model on T.V.? Does God hear me when I pray? Why can’t I muster up the strength to check in on my friends?
And this is all within about a two minute time-frame.
Work rolls around, and the medication I had taken earlier was not making me feel very good.
Oh God, I’m so scared to get into the car. What if I get into a wreck? What if I accidentally kill someone? Or get pulled over? I would go to jail for life. What if I’m late to work? I would get fired and have no money to pay all of my bills. I have to make enough money today. If my car breaks down, how am I going to pay to fix it? God, please help me.
My heart begins beating rapidly, but I drive off to work anyways.
I arrive with five minutes to spare and a mind that is not ready to interact with people, at least not properly.
I do fine at first, conversing with my tables politely while satisfying their need for quick, friendly service.
But my mind hasn’t stopped. In fact, it’s been racing faster and faster as every minute passes.
My heart starts to race. I begin to notice that I keep running into things: tables, chairs, the walls.
And then I wake up on the ground, gasping for every breath and shaking like crazy. People are surrounding me, shouting at me to roll on my back, no, on my side, keep your head tilted. Open up your chest. Breathe.
I’m taken out of work on a stretcher and hoisted into the ambulance. The medics put breathing tubes into my nose, and soon, I begin to feel normal again, but completely unable to answer the question, “What in the world just happened?”
And as fate would have it, I am brought into the hospital (the #1 place that gives me anxiety) and stuck with needles (which are on my top ten list of phobias…yes, I have a list) and then told that everything was fine.
My anxiety was telling me otherwise. There must be something seriously wrong with me. All of this couldn’t have just been one big anxiety attack.
So, I had them run every test available. The only thing that came back abnormal was from my x-ray, which showed that I was a little bit constipated.
After a couple of hours, I was released and feeling back to normal, or at least my version of it. Needless to say, the whole debacle was a huge wake-up call for me. I never really even thought twice about the serious effects that mental illnesses can have on your body, but now I know. Now I know.
Whatever mental illnesses you might be suffering from should not be ignored. If you’re really feeling badly, then do yourself a favor and do whatever it is you do when things get bad. Stay in bed if you need to. Take a hot bath. Drink some tea. TAKE CARE OF YOURSELF. You’re not doing anyone a favor by pretending to be “fine” all of the time.
You see, physical pain can be treated with pain medication, a splint, and some crutches. It can be seen, most of the time, anyways. But there is never an easy way out of your own thoughts. People that can’t control certain aspects of their brain can only be treated to a certain extent, and I’d much rather have a healthy mind than anything else.
If you need to take a sick day because of your mental illness, go ahead and do it. It’s just such a shame that we have to make up some sort of physical ailment rather than tell the truth.
It’s 2016. The earth is millions of years old. It’s time for that to change.
“capturing the corners” is a blog site maintained by two young women, Leah Barker and Anna Lunsford, who have been diagnosed with Huntington’s disease. On their “About” page, they say, “This is a blog about a life that didn’t go as planned. It’s about a broken childhood, a life plagued by Huntington’s disease, and all of the tears, laughter, and hope that comes with it. Suffering is good. It makes us all the more grateful for the happy times. Life is short. Let your voice be heard.” The blog currently has 946 followers.
Sacramento Symposium Brings Hope
Jimmy Pollard, Lorenza Estandia, Margaret D’Aiuto de Gallardo, Katie Jackson, Katrina Hamel, and Sharon Thomason enjoy networking at the Sacramento Symposium. Lorenza and Margaret traveled all the way from Mexico to attend!
Sacramento Symposium Brings Hope
By Sharon McClellan Thomason
“The symposium in Sacramento was the best HD [Huntington’s disease] gathering we have ever attended,” Bob Lohse wrote for his wife, Gail, who has HD. “We expected lunch sandwiches and sodas and were blown away with the spread. Your organization was a mix of progress, ‘fun,’ and Q/A with speakers available for questions during breaks. We thought Kyle [Fink] did a great job of explaining how all this gene/DNA stuff ties together for someone not a DNA engineer.”
Dr. Kyle Fink, from UC Davis, was one of seven keynote speakers who presented hope and understanding to attendees at Help 4 HD International’s third annual symposium on April 9, 2016, in Sacramento, California. In addition to speakers’ presentations, the symposium featured hands-on activities, a silent auction to raise money for JHD (Juvenile Huntington’s disease) research, and recognition of some very special people in the HD community.
Dr. Jan Nolta, “Bench to Bedside”
After opening remarks by Katie Jackson (president) and Katrina Hamel (vice president), Dr. Jan Nolta, Director of the UC Davis Stem Cell Program and Institute for Regenerative Cures, opened the day’s presentations with “Bench to Bedside,” a talk about PRE-CELL, her stem cell research that she hopes will produce a therapy for HD. PRE-CELL is funded by CIRM (California Institute of Regenerative Medicine), and Nolta’s team has applied for bridging funds for additional short-term studies that the FDA (Food and Drug Administration) has requested before approving human clinical trials.
Nolta’s lab is focusing on producing “paramedic” mesenchymal (MSC) stem cells that will deliver Brain Derived Neurotrophic Factor (BDNF) to the brain. BDNF is very low in people with HD, and so the paramedic cells, which are mature cells derived from healthy bone marrow donors, are engineered to deliver BDNF to the brain. The goal of the research, said Nolta, is to “slow down striatal degeneration and hopefully coax the new striatal neurons to replace those that are dying.” Nolta noted that in her research, they’ve been able to measure in the HD mice that receive BDNF a reduction in anxiety, a regeneration of striatal volume, and a 15 percent increase in lifespan.
In October, the FDA required that Nolta’s team try the therapy in pigs, so they are looking for additional funding to purchase the pigs and are hoping they will then be ready to move into HD-CELL, the human clinical trials later this year. According to Dr. Nolta’s website (www.jannolta.com), her team is seeking an industry partner to help take the MSC/BDNF platform to even more patients, outside of their planned initial Phase 1 clinical trial.
Jimmy Pollard, “You Are a Part of the Change”
Jimmy Pollard, a popular speaker for CHDI who lives in Lowell, Massachusetts, opened his morning presentation with the theme of “Families Keep Telling Their Stories.” His brief history of HD began in East Hampton, New York, where a young doctor named George Huntington saw families with this “curiosity” and continued to Oklahoma in 1888, where Nora Ball and Charly Guthrie had four kids, one of whom was famed singer-songwriter Woody Guthrie. Nora Guthrie developed HD, and Woody moved to Brooklyn, where he married dancer Marjorie. As Woody developed symptoms of HD, Marjorie began to tell her story. Doctors told her to find other families, so she put an ad in the newspaper, found other families who were living with HD, and founded CCHD, the Committee to Combat Huntington’s Disease, which is now known as HDSA, or Huntington’s Disease Society of America.
Pollard said, “Families told stories, organized, partnered up with doctors and researchers, and now we have pharmaceutical and biotech companies interested in HD.”
He noted that Marjorie always talked about the ripple effect of the pebble being tossed into the pond and said that’s what happened and continues to happen in the HD community because, “Families keep telling their stories.” Without those stories, he said, there would be no change. Equally important, according to Pollard, is that families continue to participate in clinical trials.
Participant Lisa Mooney said, “I loved Jimmy Pollard’s presentation. It was such a thoughtful addition to celebrate families moving science forward with participation in studies.”
Morning Panel: “Update on Clinical Trials and Studies in HD”
After a short break, a three-person panel presented updates on the progress of current clinical trials and studies. Dr. Ben Cadieux, Senior Director of Clinical Development at Raptor Pharmaceuticals; Dr. Victor Abler, neurologist and Global Medical Director of Teva Pharmaceuticals; and Dr. Peg Nopoulos, professor of psychiatry and pediatric neurology at the University of Iowa shared research and results with an audience that ranged from scientists and medical professionals to HD patients and their caregivers.
First up, Abler talked about three drugs that Teva currently has in the pipeline. The first clinical trial he spoke of is Pride-HD, a Phase 2 clinical study of pridopidine to see what effect it has on movement, thinking, and behavior, compared to placebo, in people with HD after 26 weeks of use, one tablet per day. Abler pointed out that it is not for chorea, but is for other physical motor symptoms. Researchers believe that the drug may have an effect on some of the symptoms of HD that depend on dopamine. He also spoke about the Legato-HD trial, which seeks to measure the effects of laquinimod, an immunomodulator that has already been in clinical trials for multiple sclerosis. Legato-HD is currently enrolling and is for people with little or no motor symptoms. The third study, SD-809, often referred to as “the next generation” of tetrabenazine, is currently waiting for FDA approval for the treatment of chorea. According to Teva’s website, SD-809, or deutetrabenazine, reduces dystonia as well as chorea and has fewer side effects than tetrabenazine.
Cadieux spoke about Raptor’s drug RP103, a cysteamine bitartrate that was approved for another disease (cystinosis), not HD, but is believed to be a potential drug therapy for HD. Cadieux explained that the drug has antioxidant properties and that HD mice improve motor symptoms and survive longer when placed on RP103. He said patients are currently enrolled in long-term trials in France. Using the total motor scale for HD to measure the effectiveness of the drug, those receiving early treatment do 25 percent better than those receiving later treatment, and completers who are on the drug for a total of 36 months do 35 percent better than non-completers. He said they are currently developing Phase 3, a multinational clinical trial in which they hope to include patients in the U.S., something that Huntington Study Group (HSG) is working on with the FDA. Raptor’s website says that, “The potential clinical benefit of RP103 in Huntington’s disease is reinforced by preclinical studies supporting three proposed mechanisms of action: 1) increased synthesis and mobilization of cysteine resulting in increased levels of glutathione and reduced oxidative stress, 2) inhibition of transglutaminase and induction of a heat shock protein (HSP) response, which assists in promoting proper protein folding and reduced proteolysis, and 3) enhanced gene transcription and increased expression and secretion of brain-derived neurotrophic factor (BDNF).”
Nopoulos, who is the director of Kids-HD and Kids-JHD studies at the University of Iowa, shared some of the goals and findings of her research. She said that brain development in humans continues through the age of 25, and in Kids-HD, they are trying to determine if there may be subtle signs of HD even in childhood. Thus far, research has shown that the higher the CAG repeat, the lower the striatum development, and so the cerebellum compensates by enlarging; however, with CAG repeats between 45 and 59, there are subtle symptoms in childhood because the cerebellum is not quite compensating. Nopoulos said that Htt (the Huntingtin gene) appears to be evolutionary because the more repeats, the better the brain development as evidenced by a higher IQ and a bigger brain. Nopoulos’s studies are funded by grants that pay all travel costs for the family of a child participating in either study, plus there is monetary compensation for the child. As a caveat, she added, “Kids have to want to do it and to understand about HD and that they’re at risk.”
Nopoulos noted that the DeNovo study has shown that a CAG repeat of 30+ is more unstable, particularly in males, and that in rare cases, their kids can develop HD.
Several attendees noted that it was good to hear about the programs at University of Iowa because they really didn’t know much about JHD research.
Dr. Vicki Wheelock, “Pre-Cell: The Path Forward and Findings Along the Way”
Wheelock, director of the UC Davis Center of Excellence, talked about Pre-Cell, an observational study at UC Davis that is managed by Terry Tempkin, ARNP. The trial to develop “the best therapy possible” began five years ago and studies adults at six-month intervals. Wheelock said 42 patients were screened, and 32 were admitted to the trial which includes a study of behavior and movement, brain imaging, and biomarkers.
Wheelock said the MRIs have shown slow, subtle changes, and the Unified HD Rating Scale has shown a slow progression in members of the trial. The trial also identifies problem behaviors, does an E-Cog rating, and measures quality of life. Spinal fluid that’s drawn is sent to Mass General for analysis and has shown plasma BDNF to be very low.
“We have developed measurement tools to be shared with the world,” said Wheelock. “Good science takes time.”
Dr. Kyle Fink, “Gene Therapy in JHD”
Fink, who is part of Nolta’s lab at UC Davis, explained his research that he hopes will lead to clinical trials for Juvenile Huntington’s disease. He’s working on gene modification or correction, targeting the DNA that is the root of the disease. His research with JHD mice has shown the CAG repeat to collapse down to approximately 16 CAG repeats and has produced mutant gene silencing.
Fink said his study is looking for the best way to deliver the therapy to the DNA. “Htt [the huntingin gene] is expressed throughout the body,” said Fink, “so where does it [the therapy] need to be delivered?”
They’re not sure yet what will happen if one area is treated and not another. Fink added, “Htt is critical for development, so the embryo won’t make it out of utero with a total absence of Htt.”
He said that JHD research may help scientists understand how other genes affect the development of the disease, but, he emphasized, “The bottom line is that we need funding to continue.”
Dr. Peg Nopoulos, “The Neuropsychiatric Disorder”
In addition to directing the Kids-HD and Kids-JHD studies at the University of Iowa, Nopoulos is a psychiatrist. She explained, with the use of slides, that the striatum (a part of the brain known to be affected by HD) is highly connected to the frontal lobe; thus, non-motor symptoms controlled by the frontal lobe often appear years before motor symptoms appear. She explained that while psychiatric and cognitive symptoms are the most disruptive for individuals and for families, they are also highly treatable.
Nopoulos pointed out that depressive symptoms decrease as the disease progresses, and are probably more situational than organic. According to Nopoulos, research has shown that major depressive syndrome has about the same prevalence in the HD population as in the non-HD population.
“The suicide rate,” said Nopoulos, “is higher right before (23.5 percent) and right after (21 percent) diagnosis.”
Nopoulos explained that the striatum helps control frontal lobe symptoms, so impairment of the striatum increases frontal symptoms. An increase in agitation and irritability are probably the most common and often contributes to the difficulty of getting placement into and retention in a care facility. Other problematic frontal lobe symptoms include impulsivity and disinhibition, a lack of insight and unawareness (anosognosia), and apathy.
“Apathy,” said Nopoulos, “is more common than depression and, unlike depression, progresses with the disease. The world becomes very small, and the person with HD becomes isolated.” Nopoulos pointed out that this is often more of an issue for the family than it is for the patient, urging that families and doctors ask the patient, “What is your quality of life?” If the patient is content with his/her quality of life, then the isolation is more of a problem for the family than for the patient.
Nopoulos also explained that the cerebellum is also very connected to the striatum and when affected causes increased chorea, difficulty with balance and swallowing, cognitive impairment, and an increase in psychiatric symptoms. Drugs that modulate the neurotransmitters change the brain chemistry: too much dopamine results in chorea, psychiatric symptoms, mainly agitation and irritability. Nopoulos pointed out that treatment of psychiatric symptoms is the same as treatment of psychiatric symptoms caused by other conditions, such as bipolar disorder and schizophrenia. She said the psychotherapy can be helpful in the early stages and encouraged consultation of The Physician’s Guide to the Management of Huntington’s Disease, published by HDSA.
Terry Tempkin, ARNP at UC Davis, Honored
An emotional tribute to Terry Tempkin, who is loved by many families who attend the clinic at UC Davis Center of Excellence, began with a video of colleagues saying their goodbyes as Tempkin prepares to retire. With barely a dry eye in the audience, Tempkin, who works with over 500 HD families, said, “It is about the families. It’s an extraordinary partnership.”
Judy Roberson, president of the Joseph P. Roberson Foundation, presented a certificate to Tempkin, noting that she is the ONLY privately funded ARNP. Roberson said Tempkin is “a visionary, energetic, has heart, and is compassionate.”
Tempkin, in accepting the award, said, “I can think of no higher calling than to come together to help other people.”
She noted that the clinic began with eight patients and today serves 500.
“I’m leaving UC Davis,” said Tempkin, “but I’m not leaving the HD community.” She challenged everyone to reach out to other parts of the world with far fewer resources.
Joseph P. Roberson Person of the Year Award
Judy Roberson began with Margaret Mead’s famous quote, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.”
Roberson said that when her brother-in-law Joe was diagnosed, there was no one in northern California who knew anything about HD. He started the foundation and contacted Dr. Ira Shoulson, with HSG (Huntington Study Group). Shoulson told Joe he needed to find eight people for HSG to open a Huntington’s Clinic. At that time, there were only two in California. Joe found eight people, a clinic was opened at UC Davis, and Dr. Vicki Wheelock became the director. Now, the clinic cares for 500 people with HD. Terry Tempkin came up with the idea to honor one person each year, someone who showed courage and strength in their battle with HD.
Laura Gagnon, announced Roberson, was chosen as this year’s honoree. Gagnon, who lives in Woodland, California, and is a patient at UC Davis, is active in studies and trials and is the third person in her family to receive the award. She was a registered nurse for 40 years in maternity and lost her dad and brother to HD.
In surveys collected at the end of the symposium, one person answered the question, “What could be improved upon?” with this comment: “Nothing, except for a box of tissues on each table!”
Jimmy Pollard, “Hurry Up and Wait”
The afternoon closed with Jimmy Pollard teaching the audience what it feels like to live with HD, what it feels like to think with HD. Through hands-on activities and the use of volunteers, Pollard demonstrated what it’s like to experience slow thinking, the difference between recognition and recall, the difficulty trying to focus when there’s distraction, the difficulty in trying to plan, organize, and sequence, and the problem with impulsivity—“I can’t wait!”
As the audience tried to write their names ever-so-slowly, Pollard noted that fluency decreases, distractibility increases, and the “inner cheerleader” disappears. These things, he said, are the “seeds of misbehavior.”
In an exercise of trying to draw from memory the picture on the face of a penny, Pollard demonstrated the difference between recognition and recall. Recall, he pointed out, is a much more difficult task than recognition.
Through use of the Stroup Test (color names are printed in different colors; i.e., the word “red” might be printed in green, and the person must read the name rather than saying the color), Pollard demonstrated what happens when there’s cognitive interruption.
Finally, Pollard blindfolded a volunteer, turned her round and round, then asked her to find her way across the room to a designated spot, then asked another volunteer to count backwards from 100 by sevens. Both exercises demonstrated the frustration that occurs when there’s difficulty in organizing and planning.
“When skills start to erode,” said Pollard, “you just want to do things; others get judgmental, saying things like, ‘He could do it if he wanted to.’” But as tasks begin to take extra concentration, it becomes fatiguing, and people with HD just don’t want to continue. It takes more effort to recall, to answer hundreds of questions in a day, and it just becomes harder to stay focused.
One survey respondent commented, “I loved Jimmy Pollard because of his delivery style.”
Wrapping It Up
End-of-symposium evaluations reflected excitement about the day’s events: “I enjoyed the interactions between clinicians, scientists, patients, care partners, industry. The set-up of the meeting was conducive to a more intimate dialogue!”
As one respondent summed it up, “I enjoyed the talks, but I especially enjoyed the level of professionalism. From the appearance of the speakers and the coordinators to the wonderful food, it let me know that HDers are cared for and important and valuable.”/* Custom Archives Functions Go Below this line */ /* Custom Archives Functions Go Above this line */