Nicholas Conley radio WSCA True Tales Alzheimer's audience

True Tales: Past the Horizon Line

Back in February of 2016, I was honored to have the opportunity to share a true story on the radio station WSCA 106.1 FM, and in front of a live studio audience.

That story, which I called “Past the Horizon Line,” was about my real life experiences working in a nursing home, and how my friendship with one particularly amazing Alzheimer’s patient had a profound impact on my life.

As longtime readers know, much of my writing — including my novel Pale Highway (which deals with Alzheimer’s), as well as Clay Tongue: A Novelette (which deals with post-stroke aphasia) and my upcoming book, Intraterrestrial (which deals with traumatic brain injuries) — has been based on my experiences working in healthcare, but it’s not often that I get to share too much about what those real experiences were like, and how they shaped the person I am today. For that reason, I’d like the share this clip with you all, where I tell my story, “Past the Horizon Line.” Thank you for watching.

 

 

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Something in the Nothing: Listen Now!

I’m happy to say that the world premiere of Something in the Nothing on WSCA was a rousing success! From beginning to end, it was an exceptional production, with fantastic ambiance, sound effects, and the talented cast of Erika Wilson, John Pearson, Jessica Rainville, Jessie Duthrie, David Phreaner, and Suzy Manzi.

Something in the Nothing - Nicholas Conley

Something in the Nothing – Nicholas Conley

But don’t just take my word for it: listen to it yourself!

For those of you who weren’t able to tune in during the premiere, don’t worry: you can now listen to Something in the Nothing online. Either listen to the Audio Theater archive for 08-23-2016 on WSCAFM.com, or just use the video file below:

 

Huge thanks to everyone at WSCA for putting this show together, particularly directors John Lovering and Jon Nash, the latter of whom is pictured here on the right.

Something in the Nothing - WSCA - Erika Wilson, Nicholas Conley, Jon Nash

Something in the Nothing – WSCA – Erika Wilson, Nicholas Conley, Jon Nash

 

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The cast of WSCA’s premiere of Something in the Nothing: A Radio Play includes John Pearson, David Phreanor, Jessie Duthrie, Suzy Manzi, Jessica Rainville, Erika Wilson

 

 

 

The Huffington Post: The Reality of Nursing Homes

For today’s update, I’m thrilled to share some exciting news with everybody: this morning, I have a piece up on The Huffington Post!

Read it here: The Reality of Nursing Homes

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My feature, “The Reality of Nursing Homes,” is a new examination of a subject that, as you all know, is very close to me, and I’ve taken this opportunity to write about my personal experience, the many serious problems with the nursing home system, and where we go from here.

But the truly agonizing thing about nursing homes is the facelessness of the system that all of these residents live in, locked into a bureaucratic structure where the bottom dollar matters more than human individuality, and where countless people spend the rest of their lives inside tiny shared rooms, hoping for a day where they can finally go back home. A day that, for too many, will never come.

The reality of nursing homes in the 21st century is something we should face as a society, together, and find productive solutions for. Especially as an aging society, with a massive wave of Baby Boomers racing toward a point where huge decisions will have to be made sooner instead of later.

I’m excited to have the chance to share my thoughts on The Huffington Post, and with all of you as well. As always, thank you for your support, reading, and comments; I can never express how much I appreciate all of it.

Cheers,

Nicholas

Excerpt from Pale Highway

Hello everyone! Hope you’re enjoying the daylight on this beautiful Monday morning, and enjoying a coffee to go with it. As for me, I’m getting some work done on my various writing projects today, and looking forward to sharing more about my upcoming radio play Something in the Nothing very soon. In the meantime…

Excerpt from Pale Highway

Available now on Amazon!

Gabriel woke up in bed. He stretched out his stiff, aching arms, feeling years of trivial injuries, hey-this-will-get-better-soon wounds, and supposedly healed muscle tears ripple throughout his entire body. The years went by so fast. One day he was young, strong, and athletic, and the next, he woke up in a place like— Wait. Hold on. Where the hell was he?

A sky-blue curtain hung on his left, blocking off the other side of the room. A bulky television set was suspended from the ceiling. The walls were the same color, and he caught the faint stinging odor of antiseptic. To his right was an open door exposing a hallway, from which came the sounds of sirens, loud voices, and beeping.

He carefully rolled over onto his side. His aching muscles resisted the turn, and his bones weren’t much friendlier. His back immediately felt as though it had been exposed to dry ice. He realized that he was wearing a bare-backed johnny gown instead of his usual pajamas.

Tied to the railing of the bed was a vine-like wire, with a red push button on the end. Oh, no. He was in the hospital. But how? When? Was he sick? Had he gotten into a motorcycle accident?Why couldn’t he remember?

Gabriel panicked, breathing heavily. His heart raced. His skin was coated in a hot, syrupy sheen of perspiration. He struggled to sit upright, but his entire skeleton felt so stiff that it might snap at the slightest strain. He was trapped. He threw off the blanket and examined his body for wounds.

Instead, he found wrinkles. His thin, nearly transparent skin had become a crumpled-up piece of tissue paper. Liver spots. Reticular veins. Painful varicose veins on his ankle.

Oh. That’s right. Slowly, tentatively, Gabriel’s memory volunteered its services to him again. He wasn’t in a hospital. He was in a nursing home in New Hampshire, the same nursing home where he’d lived in for five years. Bright New Day Skilled Nursing Center. Yes, that was it.

He frenetically cycled through his usual checkmark system. His name was Gabriel Schist. That part was easy. The president was Bill Clint… no. George? No, Barack. Barack Obama. Wait. Was that the last one? Well, how about the year? The year was 2018. He knew that, at least. As far as his age, he was… what, seventy-five years old? Seventy-two? Seventy-three?

Well, his age had never been important to him, anyway. As long as he remembered the sequence, he was still okay. That was the most important part, the only way to determine if the gears of his mind were still turning properly.

“Zero,” he whispered. “One, one, two, three, five, eight, thirteen, twenty-one, thirty-four…”

Finally, he felt strong enough to pull himself up into a sitting position. He shivered, his bare feet resting on the cool linoleum floor. He waited for the sharp lines and blurry geometric figures of the world to come into sharper focus.

“Fifty-five, eighty-nine, one hundred forty-four…”

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Why the United States Should Have Universal Healthcare

(Note: I originally posted this on Medium)

In the United States, healthcare has been one of the biggest political battles of the decade. As a healthcare worker myself, it’s an issue that strikes close to home. My years of experience caring for people with dementia, traumatic brain injuries, tetraplegia, cancer, and more has given me a firsthand look into what our healthcare system is like at the ground level, and it’s a different world from the vague concepts that politicians volley back and forth at each other.

Healthcare shouldn’t be a messy political fight to begin with: it’s an issue of basic human rights. And what all too often gets lost in these scuffles are the people most in need.

Our police forces, fire departments, libraries, and even our military are all socialist institutions. Few people would argue for the idea of a private fire department that refuses to rescue people from their home because the fire itself is a “pre-existing condition.” So why would we ever frame the issue of healthcare differently, when it’s exactly the same thing?

I’ve watched patients die from preventable conditions because they couldn’t afford treatment. In nursing homes, sick people are warehoused into less-than-adequate conditions, with families forced to pay insane yearly costs of $90,000 a year to put their loved one in a shared room where they and the 30+ other patients on their unit will be taken care of by only two aides. Because of money issues, people lose limbs that they shouldn’t need to lose. Patients decline when they shouldn’t have to. An increasing number of people don’t go to the doctor, even when they develop terrifying symptoms such as mysterious lumps in their throat, because they just can’t afford it.

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Something has to change. Looking at other countries, the practical solution is universal healthcare — preferably a single-payer system.

Though some politicians might argue differently, universal healthcare isn’t a radical idea. The majority of Americans actually support the concept. In the rest of the developed world it isn’t even an argument, it’s a given. Of the 25 wealthiest nations in the world, the United States is the only one that doesn’t have it. The majority of these countries use single-payer. Even countries like the Netherlands — with its “managed chaos” form of healthcare — are still universal.

The United States has the highest health expenditure per capita of any country. With all that money being spent, you’d figure that we’re all super-healthy — but not really.

In the latest survey by the Organization for Economic Cooperation and Development, which assessed 13 developed nations including Norway, Australia, and the U.K., the USA had the lowest life expectancy, the highest rate of infant mortality, and scarily high rates of heart disease and amputation as a result of diabetes. Of all the developed countries in the world, the United States possesses the dubious distinction of having both the most expensive healthcare system in the world — and the least effective.

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In the past year, taxpayers in the United States picked up 65% of this country’s total healthcare coverage, about $2.1 trillion in taxes. Keep in mind, this is what we’re already paying in taxes. On top of that, let’s take into account how much money each of us also spends on our private healthcare plans every month, combined with how much we have to pay on personal procedures that aren’t totally covered by that plan.

But then Canada, which has a single-payer system, pays almost the same amount in tax funded dollars: 70.7%. In other words, the United States already pays the same amount of money that could fund universal healthcare — we just aren’t getting any the benefits. Although Canada’s system certainly has flaws, Canadians still overwhelmingly approve of universal healthcare as a whole, with 94% calling it a source of collective pride.

That’s not all: if we want to get serious about cutting the deficit and don’t want to rip Medicare to shreds, many studies by economists such as Dean Baker have shown how a single-payer healthcare plan would actually be a great solution.

Some point to the idea of “free market healthcare” as an alternative option, but in practice this would price out the poor. This is a very real issue, because if a working class person with a relatively low income — say, a mechanic — comes down with brain cancer, the cost of treatment would greatly exceed their income level, leaving that person the option of either begging their friends for tens of thousands of dollars, or accepting that they have to die without receiving treatment.

In a free market healthcare system, unregulated health insurance companies would be financially rewarded for not accepting sick customers, and punished if they did accept them. Healthcare companies reap profits every month when their customers are healthy, and lose money when their customers are sick. This means that a healthcare company that’s looking to profit will refuse applications from customers who are already sick — in other words, patients with “pre-existing conditions” — exactly the people who need healthcare the most.

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Let’s not forget the pharmaceutical industry, which is a whole other can of worms. The United States is the only developed country in the world that allows drug companies to set their own prices, which is why last year Turing Pharmaceuticals was able to jack up the price of Daraprim from $13.50 a tablet to $750. Unlike other countries, where prices are set as part of a bureaucratic process, the US system opens the door for these companies to step in and maximize profits, as if a lifesaving drug was comparable to a pair of jeans.

But healthcare shouldn’t be about profit. It deserves the same priority in our society that we give to the police, the military, and the fire department, because healthcare isn’t like buying a flat screen TV: people don’t want healthcare services for their enjoyment, they need them, and a person should not be thrown into bankruptcy because on one unlucky day an icicle dropped onto them from a rooftop.

Ideally, the entire purpose of government in the type of democratic society that we have today is to serve the needs of the people. As a healthcare worker, I can’t possibly see how this principle doesn’t apply to health. I’ve been there when people died, seen people suffer when they shouldn’t have had to, all while corporations mark down record profits from the suffering of human beings. So yes, I do believe that “healthcare is a right, not a privilege,” and I’m not alone. The evidence shows that the various universal healthcare systems that exist in every other developed country are both less expensive and more effective than what we have in the United States.

Again, this shouldn’t be a political battle. It’s an issue of basic human rights. So when will we get with the program? Hopefully soon.
Nicholas Conley - Pale Highway

Alzheimers.net: “Why I Wrote a Novel about Alzheimer’s”

Nicholas Conley - Pale Highway

Nicholas Conley

In the image above, you can see a younger version of me. A bit less scruffy, wearing my scrubs. In physical years, this picture was taken just a few years ago, but in my mind a lifetime has passed since those days. Back when this picture was taken, I was still working fulltime at the job that would one day inspire Pale Highway.

The people who I took care of back then have remained with me, forever becoming a part of my inspiration to be who I am, do everything I do, and help people whenever I’m able to.

On that note, I’m posting today to announce that I have a new feature up on the official blog of Alzheimers.net, an amazing online community that seeks to educate, advocate and support those with dementia. In my article, I answer a question that many have asked me in the last few months: why I wrote a novel about Alzheimer’s.

Pale Highway - Nicholas Conley - Alzheimer's

Pale Highway – Nicholas Conley – Alzheimer’s

To truly care for someone with Alzheimer’s disease, one must first understand them as a human being, and give them the freedom to be who they are without fear of judgment. Through experience, I learned to be there for the residents of the nursing home, to talk to them about their life stories even when the stories got mixed up, to hold the hands of people who were dying, and take care of them until the end. Working in a nursing home, Alzheimer’s is something I became familiar with. Understanding the quirks, the common trends, the progression… to a caregiver, all of this becomes second nature. When someone reaches those later stages, having a good caregiver is more important than I can possibly express.

Thanks to all of you for giving it a read, and a big thank you to everyone who has already finished reading Pale Highway, and taken the time to tell me your thoughts and feelings about the book. I can’t even express how fantastic it is to hear this feedback, and it absolutely makes my day every time sometime talks to me about their impressions of the story.

For those of you who are still awaiting the release of the paperback, don’t worry!  It’ll be here next week.

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In other news, the Pale Highway blog tour has been proceeding fantastically! I’ve been interviewed by Lisa Haselton, as well as Live Laugh & Love Books. I’ve also been honored by a wonderful review from Ste J of Book to the Future, who says the following:

With a growing elderly population, this book serves as not only a character study on one man’s fight against his own mind and body but also to highlight the continuing need to help the older generation and try to understand before it is our turn.

And finally, to round it all off, I also have a guest post up on BigAl’s Books & Pals, where I discuss a certain moment in my nursing home experience that made a deep impact on me:

Working second shift in a nursing home, the last half hour is when exhaustion finally sets in. After eight hours—or often in my case, sixteen hours—of working with all of the residents, racing from call bell to call bell, and getting everybody comfortably settled in bed, this is the point where the workers can finally sit down for a moment and finish documenting about the events of the day. It’s also the moment where the body’s aches and strains finally make themselves apparent. The lights are off, most of the residents are asleep, and everyone is getting ready for the overnight crew to come in with bags under their eyes, and tall cups of gas station coffee gripped in shaky hands.

Pharmaceutical Nightmare

Beware for the rant ahead:

At this point, most of us have heard about the Daraprim controversy, but for those who haven’t, Daraprim (pyrimethamine) is a 62-year-old drug that is used as the treatment for a life-threatening infection called Toxoplasmosis. Toxoplasmosis is especially dangerous to people with compromised immune systems, such as chemo or AIDS patients, and also helps to prevent malaria.

Then Martin Shkreli, CEO of Turing Pharmaceuticals, bought the exclusive rights to Daraprim – and immediately jacked up the cost from $13.50 per pill to $750, overnight. This changed the treatment plan from $1,130 to a crippling $63,000, leaving long term patients such as those with HIV crushed beneath an annual total of $634,000.  Shkreli’s less than charming response was this: “There’s this expectation that drug companies should act differently from other companies, because you have to buy their products. That notion needs to disappear.”  Examination of his Twitter feed — now private — revealed a luxurious lifestyle most people couldn’t dream of.

Angry yet?

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Well, so were many others. Obviously, the disgusting greed of this CEO’s decision speaks for itself. Yes, people DO view drug companies differently, and we have every right to.  We should view them differently. A company selling luxury furniture has every right in the world to charge whatever it wants, because its success is then dependent upon consumer choice: will the customer buy our beautiful leather armchair, or will he/she choose a cheaper/better/alternative model?  Same thing with candy bars, cars, silverware, and clothing. It’s a free market.

With drugs, this isn’t the case.  When a person’s very life is dependent upon a certain chemical combination that one company holds the rights to, when that person has no choice but to pay $634,000 a year — or die, if for some strange reason they don’t have billions of dollars tucked beneath their mattress — then we have a big problem, and it’s not going to go away unless people speak up about it.

Luckily, that’s exactly what’s happened. Since this hit the news, the massive outrage that has blasted out across social media has made it clear exactly how people feel about this kind of greed.  All over the internet, Turing Pharmaceuticals’s name has been dragged through the mud.

But now, there is some good news.

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The good news is that on Tuesday night, Shkreli came back with his tail between his legs. The outrage has caused Shrekli to announce that the price will be “lowered.” What he didn’t specify was how much they’ll lower it.

So now, that’s the first problem: until they announce how much they’re going to lower the drug’s price, there’s no guarantee that it’ll be anything affordable for the people who need it.  The second problem is this: how do we still have a system where such greedy profiteering in the health sector is even possible? 

The United States is the only developed country that allows drug makers to set their own prices.  Last year, Shkreli did exactly the same thing when he jacked up the price on a different drug, Thiola, from $1.50 to $30, bumping up the annual cost from $2,700 to $54,750. In 2011, Gilead Sciences more than doubled Sovaldi, a hepatitis C drug, to a cost of $84,000 for the 12-week treatment.  There are many more examples of this, if one goes digging.

What happened here with Daraprim isn’t something new: what is new is the media attention that this story has drawn to it, and that can only be a good thing.  The more outrage that this sparks in this country, the better chance that more attention can be paid to correcting this toxic system, and working together — on all sides of the debate, with all people — to fix problems like this, find better solutions, and build toward a better future.