Holiday Gift Ideas

For People With HD/JHD & Their Caregivers

By Lauren Holder

Figuring out what to get someone who has Huntington’s disease can become more and more difficult as the disease progresses.As promised, here is a list of great gift ideas for a person with HD/JHD, as well as some ideas for the caregivers! Happy Holidays!

Lauren’s Favorites

  1. This coupon is good for a free foot rub, or
  2. A free hair wash and style,
  3. A free nail-coloring session,
  4. An afternoon walk,
  5. A picnic lunch,
  6. A reading from a favorite book, out loud,
  7. An afternoon ride to the ocean (lake, park, etc.)

Other Great Ideas

  • Chapstick (a good stocking stuffer item!)
  • Slipper socks with ‘treads’ on the bottoms
  • Funny, colorful socks
  • Handwarmers
  • Gloves, winter hat, and/or scarf
  • Nightlights
  • Purifying Salt Lamp
  • Essential oil diffuser
  • Motion detector lights inside and outside the home
  • Electric toothbrush
  • Memorabilia from favorite sports team(s)  (i.e., jersey, t-shirts)

***Most of these were found on https://parkinsonsnewstoday.com/2018/11/21/parkinsons-christmas-gift-ideas-loved-one-grabber-bar-smartcane-kindle-neck-wrap-bathrobe/

For the Caregiver

  • Gift certificate to a local cleaning service
  • Hire a Virtual Assistant for an hour or two every month to help with staying organized.
  • Create a break for the caregiver! Schedule it, make the plans for them, oversee the help (i.e., getting a manicure or having lunch with a friend).
  • “Host the holidays” – Decorate the inside and outside of the home, take care of the planning or the cooking, etc.
  • “Tickets of Love” (See above.)

***Please check out https://dailycaring.com/the-11-best-holiday-gifts-for-caregivers/ for these and other ideas for caregivers!***

You can also listen to Help 4 HD’s archived program about gift giving on BlogTalkRadio. Listen to Katie Jackson and Lauren Holder’s discussion at http://www.blogtalkradio.com/help4hd/2018/12/12/gift-giving.

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Help 4 HD Announces Huntington’s Disease Awareness Month Programs

Help 4 HD Announces Huntington’s Disease Awareness Month Programs

By Sharon McClellan Thomason

“We are excited this year about our programs we will be launching in the month of May for HD Awareness Month,” says Katie Jackson, president and CEO of Help 4 HD International Inc. “This year, we spent a lot of time thinking of things we could offer our community during the month of May.”

Beginning today (May 1), we are making available to the HD/JHD community, free of charge, an    “a-WEAR-ness” package. The package includes wristbands, buttons, a keychain, a window decal, and brochures. We are also offering a set of six communication boards. You may order all or any portion of the package. Items will be shipped at no cost, but because of the prohibitive cost of international shipping, the package will be available only in the United States.

“We started creating projects like communication boards and window decals to bring awareness about what Huntington’s disease is to first responders and the general public when approaching a car with one of our loved ones in it,” Jackson said. “We do hope that our community finds value in the items that we came up with.”

The window decal alerts first responders that there is an individual with Huntington’s disease on board and lists some of the symptoms that might occur with that individual.

A-WEAR-ness items can be ordered at https://www.research.net/r/Order_Form_May_2018.

Something we are extremely excited about offering for the first time is our long-anticipated award-winning JHD documentary, The Warriors: Fighting the Incurable Juvenile Huntington’s Disease. In exchange for a donation to JHD research, you may receive a DVD or a download of the documentary. Levels of donations are:

  • $15—receive a DVD of the documentary
  • $10—download a permanent copy of the documentary
  • $3.99—download a copy of the documentary to keep for 48 hours

To make a donation and order your copy of the documentary, go to https://help4hd.org/events/the-warriors-fighting-the-incurable-juvenile-huntingtons-disease-is-now-available/.

Another feature of HD Awareness Month is a special radio program every Wednesday in May. Programs air live at 4 p.m. Eastern/1 p.m. Pacific and may also be heard in our archives. To listen, go to www.blogtalkradio.com/help4hd.

You can also go to our website and download a copy of a Proclamation establishing May as Awareness Month. The Proclamation can be customized for a particular city, county, or state. We encourage as many people as possible to consider doing this for your hometown, county, or state! The template can be found here: https://help4hd.org/events/request-a-proclamation-from-your-city-or-county-for-hd-awareness-month/

Finally, a new article will run in The Huntington’s Post each Friday in May. The articles will offer information and insights into rarely talked about symptoms of HD and JHD, including gastrointestinal issues and hypersexuality.

A couple of years ago, Katie Jackson came up with Help 4 HD International’s motto, “Help 4 HD International is in the trenches with the people because we are the people.” Jackson says, “We are your community, living in homes that are impacted by HD every day. We love our community and want to bring as much support and resources as we possibly can. We are your grassroots organization started by families and continue to be run by families. We hold tight to our grassroots values and know that we are fighting to be the last generation to live with Huntington’s disease and Juvenile Huntington’s disease the way our generations and past generations have been forced to do. We hold tight to the hope that one day soon a viable therapy or the cure will be found. Till that day, we continue to fight beside you, proud to be a part of a community as compassionate, resilient, supportive, and strong as our Huntington’s disease community.”

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Choosing Death with Dignity in Huntington’s Disease

Choosing Death with Dignity in Huntington’s Disease

  by Sharon McClellan Thomason

Alan Pfeffer is a retired attorney in New York state whose first wife died from Huntington’s disease (HD) and whose 37-year-old daughter resides in a nursing home, slowly dying from HD. Alan is leading the fight for laws that will allow those like his daughter to choose a peaceful death rather than suffering the ravages that HD inevitably brings in the end stages.

Those of us who have lived with HD have seen the suffering. We’ve seen loved ones who can no longer swallow, talk, sit, walk, or attend to personal hygiene. We’ve seen our loved ones reduced to a decimated body, curled into a fetal position. We’ve seen our loved ones throw up repeatedly, unable to keep down any food or liquids. We’ve seen our loved ones refuse feeding tubes and starve to death, painfully. Perhaps worst of all, we’ve seen our loved ones, like my brother-in-law, resort to suicide, often violently.

While there are currently six states with Death with Dignity laws/statutes (California, Colorado, District of Columbia, Oregon, Vermont, and Washington), none of these laws provide relief for those who are suffering from HD or Juvenile Huntington’s disease (JHD). Based on the Oregon model (the first in the nation to pass Death with Dignity legislation), the law requires standards that are impossible for someone with HD to meet. In Oregon, the following criteria must be met:

  • The patient must be at least 18 years of age.
  • The patient must be capable (defined as able to make and communicate health care decisions).
  • The patient must be diagnosed with a terminal illness and within six months of death, as certified by two physicians.
  • The patient must make two oral requests to his or her physician, separated by at least 15 days.
  • The patient must provide a written request to his or her physician, signed in the presence of two witnesses.
  • The prescribing physician and a consulting physician must confirm the diagnosis and prognosis.
  • The prescribing physician and a consulting physician must determine whether the patient is capable.
  • If either physician believes the patient’s judgment is impaired by a psychiatric or psychological disorder, the patient must be referred for a psychological examination.
  • The prescribing physician must inform the patient of feasible alternatives to DWDA, including comfort care, hospice care, and pain control.
  • The prescribing physician must request, but may not require, the patient to notify his or her next-of-kin of the prescription request.
  • The patient must be able to self-administer the medication by swallowing; if the pills are dropped or regurgitated, or if the patient regains consciousness, there is not a second chance.

(http://www.oregon.gov/oha/ph/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/Requirements.pdf)

In order to make sure patients with HD may avail themselves of the mercy intended by these laws, Alan is filing this month to present an argument to the NYS assembly at its Public Hearing on Physician Aid in Dying (PAD).

Alan asks the question that strikes at the heart of the matter:

So why do people with Huntington’s refuse feeding tubes when they can extend their life? Because it is life they don’t want to continue to live. My daughter watched her mother slowly die and spend years rigid, unable to move any body part, unable to speak, orally eat, painful muscle contractions, no hope for a miracle drug being researched, placed by the nursing home staff in front of a TV all day. My daughter has a health care directive not to prolong her dying. She was a woman of the world, a Peace Corps volunteer who served her country by teaching the children of Turkmenistan in Central Asia English, who worked and lived in Thailand teaching English to children, who volunteered as an English teacher to foster care children in Israel. She lived for 18 months in Argentina; she speaks five languages; she toured the world; and she has made her choices and wants the same right of choice that is being considered for other people dying of things like cancer. Let’s not leave anyone behind.

Alan proposes that people with Huntington’s disease execute an advanced health care directive, while still of “sound mind,” that would request PAD when they reach the point that they no longer have what they have personally predetermined as “quality of life.” Just as people are currently able to execute a DNR (Do Not Resuscitate) order or refuse a feeding tube or a ventilator, they should be able to execute a request for PAD.

My husband would not have chosen PAD. He wanted to live as long as possible, in a nursing home, assisted by a feeding tube, to share in every part of our son’s life possible. His brother was the opposite. He had no children, and he had said from the time he was diagnosed that when it got to the point that he could no longer take care of himself, he would take his own life. Any of us would have taken care of him, but he did not want to live life on those terms.

Another shortcoming of current law is that it automatically eliminates the children who are suffering from Juvenile Huntington’s disease, since they have not yet attained the age of 18.

The whole point to this is that end of life should be a personal and humane choice. To this end, Help 4 HD International has issued an official position statement on Death with Dignity, which states in part:

HELP 4 HD International supports efforts to increase services and support for HD/JHD families, including palliative care from the time of diagnosis through their loved ones’ remaining lifespan.  This includes educating the community about what options are available to them at any time in their journey to retain as much control as they can.

HELP 4 HD International is not a lobbying group and thus does not participate in activities to promote legislation on this issue. Neither does HELP 4 HD International have an official position on what families “should” or “should not” do. We believe, though, that Huntington’s patients should have the right to choose death with dignity by a prior health care directive, a prior appointed agent, and, if necessary, physician assistance in order to enable people with HD to access the mercy that Death with Dignity laws intend.

If you wish to read and/or print out our official statement of position, it may be accessed here: https://help4hd.org/wp-content/uploads/2018/04/HELP-4-HD-Death-with-Dignity-Position-Statement.pdf.

To hear an interview with Alan Pfeffer on “Help 4 HD Live!” click here: http://my.blogtalkradio.com/tools/#/my-episodes/edit?episode=9611851

 

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Finding a New Normal

Finding a New Normal

By Sharon McClellan Thomason

“December 15th will be two years since we lost Cory,” says Stacey Sargent, who lost her son to JHD when he was 21. “Every holiday and special occasion feels incomplete; however, Thanksgiving and Christmas are especially hard. I feel anxious this time of year, trying to remain strong for everyone else in the family, when all I want to do is hide under the covers and cry. It’s exhausting, actually.  I go somewhere and see Christmas lights or decor, gifts that I would have bought him, and my heart breaks all over again.”

As Stacey so poignantly puts it, the holidays can be an especially challenging time for people who are grieving the loss of a loved one. The holidays can also be daunting for those who are still living with Huntington’s and Juvenile Huntington’s disease. Whether it’s anxiety over being around a lot of people, swallowing and choking issues, having a loved one in a care home, dealing with irrational behavior or aggression, or just plain missing someone, holidays can be anything but jolly for people with HD/JHD and their care partners.

So what do you do with these feelings? How do you cope? Can you do more than just “get through” the holidays? The key to surviving the holidays lies in finding a new “normal.”

Stacey says that since Cory passed, “A few close friends give me angels for Christmas, and the fact that others think of him gives me such joy. At our annual family Christmas party, something always happens that makes us all think of Cory, and that, too, brings me joy, though I usually ride home crying at the heartache of missing him so much. Missing him doesn’t getting any easier. I think of him daily; this time of year, it’s just harder to hold back the tears. My husband asks me every Mother’s Day, birthday, anniversary, Christmas for gift ideas . . . the one thing I want, my son, he can’t buy or make or give me in any way. We place something of his under the tree, a pillow that he didn’t get to open or see two years ago. We make donations in his memory. We (Terry and I) release a balloon on his birthday, Angel Day, and Christmas. These things help a small bit, and my faith. I know he is celebrating in Heaven, and try to imagine the party there……”

Others try to carry on traditions started by the loved ones they have lost.

Katrina Hamel, who lost her mother to Huntington’s five years ago, says, “Thanksgiving and Christmas remind me so much of my mom and her holiday spirit. She dressed up, she decorated from top to bottom, she always invited everyone over and always cooked a feast, for as long as she could. This year, I will channel her. I have invited family and friends, I will cook, I may dress up, but most definitely, I will decorate! I choose to give the best of myself to others because it makes me happy!”

Holidays can be hard not just for caregivers but for those who have Huntington’s, too.

“I find that Christmas is the best and worst part of the year for me,” says Cameron Wedge Howard. “I absolutely love the holiday decorations, watching my kids open stockings and presents . . . there’s no better feeling. But at the same time, we’re busy with extended family, and that’s overwhelming. Also, my impulse control is horrible, so I lose myself in buying presents. I’m not fond of stores, so I pretty much shop online. It makes it easy to go overboard.”

Dealing with all the emotions, the excited chaos, and grief can mean it’s time to find a new “normal.” For someone who is struggling with impulse control, that may be as simple as handing over the credit and debit cards to a trusted family member so that spending doesn’t get out of control. Another possibility is to provide the loved one with a pre-paid card that limits what the person with HD can spend.

Since anxiety is such a huge part of Huntington’s disease, anticipating and avoiding the things that cause anxiety can go a long way toward making happier holidays for everyone. This, too, can be part of creating a new “normal.”

“Planning to serve the meal at the regularly scheduled time may be helpful,” says Ginnievive Patch, who has a husband and two sons with HD, “and minimize extra noises (no TV or music), since family is noisy.”

Limiting holiday outings and limiting the number of people sharing holiday meals (immediate family vs. extended family) can also help to ease anxiety. For the caregiver, allowing others to help prepare the holiday meals, ordering food from a restaurant, or even going out to eat at a restaurant are all possible alternatives to wearing yourself out by trying to juggle cooking and caregiving. Again, finding a new “normal,” one with new traditions that can provide everyone with the most enjoyable, stress-free holiday possible, is important.

If your loved one is in a care home, you might consider taking the holiday to the person rather than bringing him/her home. Nursing homes and assisted living facilities are usually willing to let the family have the dining hall or a conference room for a celebration. I can remember when my daddy (non-HD) was in the hospital after suffering a stroke. We took a small tree, presents, and our traditional holiday meal to the hospital and had Christmas there.

Depending on the temperament and care needs of your loved one, you may be able to bring him/her home for the day. When my husband was in a nursing home, a family member would bring him to his mother’s house for the holiday, and then one of us would take him back.

Jacki Harrison, who lost her husband, Ken, two years ago, says, “I was a married widow for ten years, so he was gone way before he left this earth. After a while, it was difficult him going to our friends’ anymore for Thanksgiving. He would sneeze at the Thanksgiving table, and the saliva would reach people’s faces. He would growl, groan; he would need to go to the bathroom and needed help doing so. He would try to talk, and people would get impatient, although [they would] be polite. This was the point we realized it was better for him to stay home. He was much more comfortable being at home, even alone for one or two hours, and then in later years with [his sitter]. The first couple of years, I felt bad for him, but I understood how much better it was for him to be at home where he was comfortable. Also, even though I felt bad, it was much easier on me, too.”

Jacki says that she and her children go to visit Kenny at the cemetery and say prayers during Thanksgiving. Her daughter talks privately to Ken, and she talks to him, telling him her heart. Their son reads prayers from the Jewish prayer book. This has become their new “normal.”

Kevin Jess, whose wife is in a nursing home in end stages, says that as Jehovah’s Witnesses, he and his family do not celebrate the holidays, however, “My wife, Sheila, always celebrated it. In her current condition, it is not possible for her to do things such as gift shopping or baking, etc. She also prided herself on an incredibly large collection of village pieces that took up an entire room. She enjoyed the smell of turkey roasting and pumpkin pies baking, and yes, she enjoyed the music which drove my son and me crazy. However, since I also love turkey and pumpkin pie, as well as giving and receiving of gifts, I usually gave gifts at other times of the year, when I could afford to do so, and when it wasn’t obligatory. I also do cook a turkey and all ‘the fixin’s’ once a month. She always thinks it’s Christmas, and during the holidays, I make her a sock to rummage through, and I turn on her holiday music that she loved as it stirs memories that she cherished.”

Preparing a holiday meal that is both palatable and easy to swallow for those with dysphagia (swallowing disorder), can require some real creativity to find a new “normal.” In the Nov. 14 issue of Today’s Caregiver e-Newsletter, Bobbi Carducci shares the following recipe for “A Dysphagia Thanksgiving”—her creation for her father-in-law who wanted “real” food:

Turkey – I tried pureeing both dark and white meat turkey and found it too grainy so I used a well-known brand of junior baby food and pureed it further to remove all lumps.

1 cup homemade stuffing – Place in food processor with 2 tablespoons of homemade gravy. Puree until smooth, making sure all the lumps are removed. (Add gravy one teaspoon at a time as needed.)

½ cup mashed potatoes – mash or puree to remove all lumps.  Add gravy to the potatoes for flavor.

½ cup creamed spinach – puree until very smooth

For dessert – remove crust from one slice of pumpkin pie, top with whipped cream.

The measure of the meal’s success was her father-in-law’s comment that, “This is just like my wife used to make.” (https://caregiver.com/articles/thanksgiving_w_dysphagia/?utm_source=Caregiver+Newsletter&utm_campaign=844894ef8d-Caregiver_Newsletter_10_10_17&utm_medium=email&utm_term=0_8c5d5e6a5e-844894ef8d-94190545&mc_cid=844894ef8d&mc_eid=ce0f1754d1)

Thanksgiving this year was an opportunity for me to practice finding my new “normal.” My son suffers from extreme, isolating anxiety and did not want to be with anyone on Thanksgiving; he emphasized, though, that he wanted me to go and be with people I love and have a good time, that it wasn’t going to bother him to be alone and miss all the festivities. I had to fight back a lot of guilt in order to do this, but since plans had been made a month before my son decided he couldn’t go, I went ahead and joined family and friends. Was it hard knowing that Randy was home alone while I was off having fun? Yes. Was he happier not having to leave his comfort zone to socialize with people? Yes. Would he have enjoyed Thanksgiving if I’d prepared dinner at our house and invited people over? No. This goes against everything I’ve always believed about celebrating holidays, but this is our new “normal.”

I suspect I’ll get to try it out again at Christmas.

 

Tune in to “Help 4 HD Live!” on Wednesday, Dec. 6, at 4 p.m. Eastern/1 p.m. Pacific, to hear Katie Jackson’s interview with Dr. Bonnie Hennig-Trestman, a clinical therapist providing teletherapy.

 

 

The Huntington’s Post is made possible by grants from Teva Pharmaceuticals and the Griffin Foundation.

 

 

 

 

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“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.

Look Up

Conclusion

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.

Love,

Mickey Davis

 

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….

 

No!!

 

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/.

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“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.

Look Up

Part Three

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’m okay.”

“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.”

“Actually, it’s….”

“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

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“Look Up”: Part Two, a Short Story by Brent J. Walker

Welcome to Las Vegas

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.

Look Up

Part Two

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.

  1. 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.
  2. 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?
  3. She’s probably already got a man anyway, so why waste my time?
  4. 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.
  5. I am sure she wants to be left alone and will just tell me to go away.
  6. What the hell would we talk about? The weather? Isn’t that the world symbol for most boring conversation starter of all time?
  7. I bet as soon as I start talking, her boyfriend will pop up out of nowhere, take offense, and sock me in the face.
  8. She’ll know right away that I am lower middle class. Only a guy with money can get a girl like that.
  9. Shit! I lost my pack of gum, and I have been drinking and smoking all day. I bet my breath is horrible.
  10. 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

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The Patient Advocate: Celebrating the Season of Giving

The Patient Advocate: Celebrating the Season of Giving

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by Katie Jackson, President/CEO, Help 4 HD

I would like to begin this article with some of my favorite quotes about being a patient advocate:

  • “Advocacy: To change ‘what is’ to ‘what should be’”
  • “Strong people stand up for themselves. But the strongest people stand up for others.”
  • My final quote is one that was introduced to me by one of the strongest patient advocates I know, Judy Roberson. This quote is used by Judy every time she speaks publicly, and because of her, it is now used by many HD advocacy groups. “Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.”—Margaret Mead

Whenever I think of the power of the patient advocate, I think about the polio epidemic. This is an event that I have talked about for years when I speak about what a group of patient advocates can accomplish. What Franklin D. Roosevelt, Basil O’Connor, and Eddie Cantor, along with all the powerful advocates, did to combat the polio virus was astounding. A vaccination for the polio virus was the result of their efforts. The world was forever changed because of the March of Dimes advocates.

I started my journey as a patient advocate over ten years ago. I quickly learned that to be a patient advocate, you have to find a cause you are deeply passionate about. One that you can feel deep in your soul that brings out a power in you that you didn’t know you had. You must be passionate, compassionate, persistent, patient, resilient, and strong. You will endure disappointment and pain when your countless hours of work don’t go the way you planned.

The patient advocate knows what I am talking about, but the passion and strength we have make it so that we “won’t back down,” and we continue to fight and push on, even when things don’t go our way. We don’t have time to cry over a blow; there is too much work that needs to be done and too many people that are counting on us, so we push on.

There are those brilliant moments when you work so hard on a project, and it succeeds, and the change happens right before your eyes. These moments are what it is all about—to know all the work, blood, sweat, and tears have made a difference for the families you are serving. There is no better feeling in the world for a patient advocate than when you get to see the world change a little because of your efforts.

The patient advocacy spirit within the Huntington’s disease community is strong. This is a family disease, and families have been advocating for years and years and generation after generation. I have had the honor of meeting HD patient advocates who have been fighting for over 30 years. Being a patient advocate myself, I am here to tell you that at times it is exhausting. That is why I am always in awe when I get to meet the “pioneer” patient advocates. Their persistence and strength to keep going after so many years is truly incredible. Although there are still no therapies and no cure for our loved ones living with HD/JHD, can you imagine where we would be if it weren’t for those early advocates who fought so hard for our families to get support, care, and to find the gene that has affected families for hundreds of years?

Without the patient advocate, change wouldn’t happen.

I am so excited that we are using the month of December for “Help 4 HD Live!” to highlight the patient advocate. They call this holiday season the “season of giving,” and I can’t imagine a person in this world who is more giving than a patient advocate. They are truly the most selfless people walking this earth, fighting hard, not for themselves, but for those who can no longer fight for themselves.

We have decided to name the series of shows we’re doing in December “Celebrating the Season of Giving.” I would like to share with you a little about the four advocates we will be interviewing and a little about what they have done and are currently doing to advocate for our HD community.

 

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Lauren Holder, North Carolina

Lauren is an incredible advocate and person. Lauren has been advocating for our Huntington’s disease community for 10 years now. She has hosted many Huntington’s disease fundraisers. She started her advocacy journey by going to Washington, DC, twice a year to speak on behalf of the Huntington’s Disease Parity Act. She started educating law enforcement after her father went missing for 12 hours, and she was unable to get any help, due to the lack of knowledge about HD.

She has worked with NAMI (National Alliance for Mental Illness) to get CIT (Crisis Intervention Training) in North Carolina for law enforcement. Lauren was the HDSA North Carolina president for many years before she had to step down to help care for her father. In 2004, she was honored with the HDSA Person of the Year award. She has written a book about living with Huntington’s disease and is in the process of composing her second novel.

Recently, Lauren and her father’s story was featured in an article in Good Housekeeping. Lauren is a powerhouse, and we are lucky to have her voice telling her story and educating people about what it is like to live with Huntington’s disease.

 

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Havanna Lowes, Missouri

 Havanna is one of the most brilliant 17-year-olds I have ever met. Havanna visited Washington, DC, for the first time in June of last year. There, she was personally able to speak to four Congressional staff members about HD and the parity act. Havanna spoke to her senator from Missouri, and he signed the parity act in July.

Havanna has spoken at many education days. Just recently, she spoke at the Huntington Study Group meeting in Nashville in November. She is passionate about Huntington’s disease youth programs like NYA (National Youth Alliance) and HDYO (Huntington’s Disease Youth Organization). She has held fundraisers and has given talks about HD to her community.

Havanna says, “Advocacy is about telling your story to your community and getting people involved and informed.” Havanna is an amazing young lady who I believe will go so far in this world and will continue to be a champion for HD.

 

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Marie Clay, New York

Marie Clay has been a Huntington’s disease advocate for 20 years. Marie has educated many people about HD over the years. She has done law enforcement HD education, CIT, firefighter and first responder training, hospital training, and much more. She has spoken to many community organizations, like the Rotary Club, about HD.

Marie has been on Capitol Hill many times to speak up for the parity act, and recently, in September 2015, Marie spoke on a panel at the FDA (Food and Drug Administration) Patient Focus Meeting. Marie was able to tell members of the FDA about the challenges living with Huntington’s disease.

In 2008, Marie started a support group in Virginia Beach and has held many fundraising events.  Marie worked very closely with Sitrin, a care facility in New York state that now has a unit dedicated to HD/ALS. She has introduced many families to Sitrin, and everyone’s hope is that one day we will have more options like Sitrin available to our HD community.

Marie is one of only two employees that have been honored twice with the Volunteer of the Year award by GEICO Insurance. Marie has been fighting for HD families for many years, and we are thankful for all she has done for the HD/JHD community.

 

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Kinser Cancelmo, Massachusetts

Kinser became more involved with both HD and JHD after her daughter Meg passed from JHD after spending four months in the hospital, with doctors unsure about how to help her. Kinser lost her husband shortly after she lost her daughter.

While Meaghan was in the hospital, Kinser enlisted local news teams and radio stations to do programs to raise awareness for JHD.  The local radio station had Kinser on their morning talk show to speak about JHD.

When Kinser lost her daughter and her husband just a couple of months apart from each other, she decided it was time to work on starting a nonprofit business in memory of her daughter, “Meg’s Fight 4 a Cure, Juvenile Huntington’s Disease Foundation, Inc.”  Kinser says, “I was appalled at the lack of medical services and places available for children/teens her age that had illnesses that the medical community couldn’t handle.  Especially JHD.  I wanted to raise money for researchers to continue working on medicines and hopefully a cure for this horrible disease.  A group of my friends, who are now Board members of my business, began working on a fundraiser to raise these funds to send out to UC Davis in California.  The fundraiser was held in September 2016, raising more than $20,000.”

Kinser is a board member of her local Massachusetts Chapter of HDSA.  She is involved in attending meetings quarterly and helping with the HD walks around the state, Education Days, as well as many other events that the chapter sponsors.

Kinser recently took Meaghan’s service dog, Dixie, and finished putting her through a pediatric training therapy class. Dixie passed the test so that she is now an official K-9’s for Kids therapy dog.

Kinser is an incredible woman. One can only imagine how immensely hard it would be to lose your husband and your little girl only two months apart from each other. Kinser is a survivor and is taking what she has learned to help others. We can’t wait to see what the future holds and the changes that will be made because of the “Meg’s Fight 4 a Cure, Juvenile Huntington’s Disease Foundation.”

Celebrating All the Patient Advocates

Help 4 HD International would like to thank all the Huntington’s disease patient advocates out there. Without you, change will not happen. So keep fighting, my friends, for the next generation and all the generations to come. Let’s hope that one day our efforts become a paragraph in a history book of “how they used to live before they found the cure for Huntington’s disease.”

 

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