What We‘ve got Here is a Failure to Communicate

Since many people are spending time with family members today (Thanksgiving — US), some of whom you may disagree, I thought it would be good to write a post about every detail of my current and past political views. Just joking. I’m sure you are tired of reading about all the clashes between liberals and conservatives. But I do want to write about how much it sucks when you can’t communicate.

Do you remember that famous line — “What we’ve got here is a failure to communicate” — from one of my favorite films, Cool Hand Luke?

I always think of that line when I have trouble getting my point across, although obviously not because I’m feuding with a hard ass warden. No, it’s more that I think of the line as a metaphor which pertains to my trouble communicating and the poor communication in our society as a whole. The inability to communicate with each other while failing to make any kind of progress is obviously an issue in the US and around the world right now, but it’s also a problem I’ve dealt with in my personal life. And I don’t mean I have been forced to live with people who have strong opposing political views, although I’m sure there are many people in that exact situation with the current political landscape what it is today.

For the last three years I’ve been unable to speak. At times I have spoken short sentences, but for the most part, particularly during the 18 month stretch from January 2015 to July 2016, I was unable to speak at all. With this disability came a frantic search for alternative, nonverbal forms of communication. I have used a small whiteboard with letters to spell out words, I’ve traced words on people’s hands, and I’ve essentially developed my own sign language to communicate with my friends, family, and caregivers.

No form of communication is perfect or even guaranteed to be effective, and my nonverbal communication has been especially flawed. But it’s all I have. It has, quite often, left me and the people around me exasperated with each other while trying to play a twisted and cruel game of Charades or Hang Man or Wheel of Fortune or any number of games that share similarities to how I communicate. These games are meant to be fun, and as many people know, trying to communicate something that isn’t being received is not fun; it is maddening, even heartbreaking.

This is to say that it is incredibly frustrating when you are trying to communicate and it feels like you’re just wasting your energy. I frequently find myself staring at the person I’m communicating with, thoroughly bothered, as if they should be able to read my mind, or more realistically, automatically know what my makeshift communication means. This is just instinctively how I react. To me it’s as if I’m talking, so how can someone not understand my words? We both speak the same language — English — but I guess I forget that I’m not actually speaking, I’m gesturing. So I probably come off as an asshole sometimes, at least by my body language, but it’s only because I’m trying so hard to communicate and only exhausting myself.

This is something that people with limited energy, particularly those with illnesses like mine, know all too well. It is something that we experience while doing the simplest tasks. So imagine how it feels to try to make a significant change in the world. It’s nearly impossible, if not entirely so. With the US and many other countries so divided at the moment, I’m sure everyone can relate to this in some degree. I imagine everybody has been involved in a political argument, either online or in person, during the last year or two. And seeing how this is the first holiday season with a new president in the US, I’m sure there will be plenty of arguments to come. I certainly have had my share of these disagreements. In doing so I felt a familiar sort of frustration, as if what I said was not registering with whomever my comments were directed towards. In some ways this is just how it goes, especially right now. We have to pick our battles wisely and surrender to the fact that our message isn’t always, or even most often, going to be understood. In the form of political debate, we may not change anybody’s mind. And that’s okay. There is only so much that we can do and control. One thing we can control, however, is how we react to the frustration we feel in these situations.

A few days ago I was trying to ask my caregiver to bring me my daily medications. It had nothing to do with politics, thankfully, but it was a prime example of how easy miscommunication can happen.

Because I couldn’t speak, I used a hand signal for “pills” that I’ve been using for at least two years now. My caregiver hasn’t been working with me that long, but she has certainly been here long enough that the signal should be engrained in her mind. And if nothing else, there is a cheat sheet nearby with my hand signals written on it. But for one reason or another all of these efforts seemed to break down and she couldn’t figure out what I wanted. This type of thing has happened countless times during my time as an aphonic person, yet it hasn’t gotten easier. Over the years I have tried and failed to develop a zen-like mentality that allows me to transcend these cringeworthy moments. Instead, I usually resort to showing my caregiver a different hand signal which means, “Please step out of the room,” and no, it’s not my middle finger. Then, once she has vacated the area, I reach for the lightest, cheapest object I can find — preferably one that will make a satisfying crunch when driven into a hard surface. Then, finally, channeling all of my rage and frustration, I fling it at the wall.

A film crew recently asked one of my caregivers “Where does he get the strength to throw things?” This is a valid question. After all, I can’t even hold a glass of water, how the hell can I throw something across the room? Well, it’s a very strategic (and cathartic) process. I’ve learned through trial and error that throwing something light is the only option. I can’t throw a glass or, say, a book across the room. But I can throw sunglasses or pens or pill bottle caps. Also, these cathartic outbursts do not go unpunished. I use valuable energy that puts me at a further deficit as I go about the rest of my day trying to take care of my needs. Not to mention, the arm I used to throw is always rendered essentially useless for the next couple days. And still, to be honest, it’s usually worth the pain.

After the latest failure to communicate with my caregiver, I moved on and figured out a way to get my needs met, but by no means was it easy or did it come without stress. And therein lies the metaphor for the current political discourse we as a society are subjecting each other to on a daily basis. It’s stressful and difficult and rarely is it constructive, but we will keep moving forward and we will figure out a way to get our needs met.

I’m not going to sugar coat anything and tell you to be grateful for this or that, but I do have some advice. If you find yourself arguing with a relative over the state of the country this holiday season, if you can, try to let cooler heads prevail. It is wiser to maintain your sanity than to lose your shit in front of your entire family. And if you must let your anger out, like me, wait until you’re alone, find the cheapest breakable item in the room, and then hurl it at the wall.

A few things before we part:

1. Thank you so much for reading! This is my 100th post, so hey, that’s something!

2. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would be very grateful!

3. If you would like to donate to support this blog I would be equally grateful!

This is What it’s Like for a Canadian to see a Doctor in the US

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One of the most memorable events in Serena’s life after she entered adulthood began by sliding down a set of stairs on a mattress. Children do this for fun, sure, but Serena was 18 — an adult — and by no means was she having fun. She was trying to see a doctor.

After getting the mattress downstairs with her nearly motionless body atop, Serena’s parents transferred her to a wheelchair. From there they wheeled her outside to an RV waiting to take the severely ill young woman from Vancouver, British Columbia to see a new doctor in California.

Following a referral from her general practitioner, Serena decided to make an appointment to see Dr. Steven Harris, a physician specializing in Lyme disease located in the San Francisco Bay Area.

But first Serena had to, without walking, ascend the steps to get inside the RV. She sat on each small step and, with her parents lifting her at the waist, painfully ascended the steps one at a time, gingerly lifting her hips to the next step until she eventually made it to the hard floor of the RV, which Serena struggled to crawl along. She finally made it to the back of the RV and collapsed into the vehicle’s built-in bed.

Because Serena’s condition — a sinister concoction of Lyme disease, myalgic encephalomyelitis (chronic fatigue syndrome), and other associated conditions — made her extremely photophobic and sensitive to sound, she was unable to travel by plane or regular automobile.

Knowing the delicacy of her condition, for months Serena thought of possible ways to travel to see the new doctor. Serena heard of a woman who was just as sick and lived not far from her In British Columbia. The woman had to be driven in an RV to a special Lyme disease clinic in Kansas.

Serena decided to attempt her own version of the woman’s journey and that traveling in an RV was her best shot. Seeing the doctor in person was, after all, the only way to get the treatment she needed.

“I just figured, this is what I need to do. This is what I want to do . . . And this is just how I’m gonna have to do it,” Serena confessed in a video she posted on YouTube several months after the trip.

Serena asked her parents to rent the RV, which cost $2,000, plus another $600 for gas. But the money was worth it; the spaciousness and amendities of the vehicle made traveling manageable for her. But still, the trip was far from a vacation.

Serena spent nearly the entire time in bed. She remained mostly horizontal because she suffered from postural orthostatic tachycardia syndrome (POTS), which makes standing or even sitting up extremely difficult.

Serena’s mom slept on the RV’s pull-out futon and her father in a small bed above the driver’s cab.

The RV may have had the essential amenities for a severely ill person to travel, but it was not conducive to good sleep, especially with three adults sleeping within a few feet of each other. If one of Serena’s parents woke up and moved around in the RV, its weight bounced around on its tires and shook everyone else awake.

Crossing The Golden Gate

The only time Serena left bed was when the RV crossed the Golden Gate Bridge in San Francisco. As the large vehicle crossed the historic landmark, Serena asked her father to pick her up out of bed and carry her to the front of the vehicle. There he positioned her on a wedge pillow so her upper body was at a 30-degree angle (the only elevation she could tolerate for any prolonged amount of time).

Other than taking in California’s majestic Golden Gate, Serena stayed in bed the whole trip. She didn’t even get up to go to the bathroom. She couldn’t. Instead she used a portable commode in her bed and washed her hands in a bucket of water.

Serena also maintained her hygiene by using baby wipes, more buckets of water, and hand sanitizer to keep clean and free of body odor.

Before making it to San Francisco, Serena and her parents crossed the US/Canada border in the RV without much delay, but this was in late-2015 when, although President Trump had yet to take office, his plans to tighten border security were floating around the political landscape. This concerned Serena. Regardless Serena remained undeterred in her mission to seek proper medical care.

After more than 1,000 miles navigating along the Pacific Coast, with a couple overnight stays in $100-a-night campgrounds along the way, the RV arrived at Harris’ office. Serena was eventually brought into a room. There she was laid on its examination table with two types of noise-canceling ear protection on. For her eyes she wore sunglasses and a hat to block out natural and artificial light.

Unable to see or hear, Serena had to trust that her parents would accurately describe her condition to Dr. Harris’ physician assistant. Her parents described her symptoms as extreme pain and fatigue, as well as dizziness, brain fog, and fitful sleep.

Serena’s doctor back in Vancouver had given Dr. Harris a heads up about how sick she was and how far she would be traveling so he decided to pop in and introduce himself — something he, nor most doctors with physician assistants typically do on a patient’s first appointment. But Serena would be returning home shortly after the appointment and it remained uncertain if she would be able to make such a lengthy and complicated trip again.

“We’re going to get you better. I promise,” the doctor told Serena.

What may have been a cliché coming from a doctor who likely said something similar to all his patients, was heartfelt to Serena.

“I felt he was genuine in his concern,” Serena said recalling her first meeting with the doctor.

Next Serena had her blood drawn for numerous lab tests. Then she was given an antibiotic injection, which her father watched closely because in the following months he would be tasked with giving her the injections back home in Vancouver.

Returning Home

After more than three hours in the doctor’s office, Serena made it back to the RV. She was done — both accomplished and exhausted. She didn’t speak more than a few whispers for the rest of the day, only to ask for food. Then she developed an intense migraine, which only worsened when her family stopped at a campsite for the night and the people next to them sent campfire smoke wafting into the RV.

Her migraine eventually went away and she finally returned home. She soon started the treatment protocol from Dr. Harris — a hodgepodge of traditional methods like antibiotics and alternative treatments like herbal tinctures.

Specifically, Serena was prescribed Nystatin and Diflucan, two antifungal medications. The antibiotics she was given were for her small intestinal bacterial overgrowth (SIBO). She was also given anti-parasitic and anti-malarial medications to treat babesia, a parasite that showed up in her blood work. Most recently she requested a more holistic approach to her treatment focusing on using herbs and detoxing her body, although she is sticking with the anti-parasitic medication and has added low-dose naltrexone (LDN), a medication commonly used for drug and alcohol addiction in higher doses, but is also used in low doses as an anti-inflammatory agent to treat some chronic illnesses.

Now, nearly two years since her trip to California, Serena’s health has improved — she can walk again, albeit gingerly. But her condition continues to fluctuate. And while she is grateful for her improvements, she says they are less than her doctors expected and perhaps even promised her. This, as many chronically ill patients know, is the curse of any truly compassionate doctor — the promise of something improbable, if not entirely impossible, in order to lift the patient’s spirits.

While Serena would like to maintain her treatment from Dr. Harris, and she most likely will, she is unsure whether the gradual improvements to her health have been because of the doctor’s aggressive treatments or whether it was simply a matter of time before she felt better — her body eventually healing on its own.

Serena has no plans to make a return trip to California anytime soon. Serena is worried that the additional treatments Dr. Harris wants her to try will leave her too ill to return home. In such case she would be stuck as a tourist in a country that as of late hasn’t been kind to foreigners.

Mostly Serena and her family don’t want to make the trip because of the political tension in the United States — the protest-related violence and threat of nuclear war are major deterrents, and understandably so. For now, Serena is content with her improvements and the treatment protocol she continues to take with Dr. Harris’ prescriptions.

But just as there’s no way of knowing whether the treatments have worked, there’s no way of knowing what the passing of time will hold for Serena.

Serena (real first name) asked that I omit from this post her last name and any photos that might reveal her identity.

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Nobody is Going to Take Your Guns Away, but Mass Shootings Have to Stop

My friend, Erica Verrillo, recently posted on Facebook about the mass shooting in Las Vegas. She wrote, “… how many of the angry white men who have been riled up by Trump will decide to ‘snap?’”

She was, of course, referring to Stephen Paddock, the man who opened fire on a concert crowd of more than 20,000 people in Las Vegas on Sunday. I’m not sure snapping is a decision; I think it’s a reaction, often instinctual, but as she pointed out in her post, the Las Vegas shooter, as well as pretty much every person who has carried out a mass shooting, did not “snap,” as the media portrayed him doing.

This man bought an arsenal of guns that was so far beyond the firearms used by “militia” and mentioned in the Constitution’s Second Amendment. What’s more, this man devised a plan that included renting a large hotel suite and an adjacent room, both with windows serving as the perfect sniper’s den overlooking a music festival full of people. He didn’t snap, he premeditated. Snapping suggests that what he did was not premeditated, but it, as most mass shootings have been, was entirely premeditated. It was, in fact, more than premeditated. It was strategic and tactical, and, as far as horrific acts go, it was ingenious. But it was the kind of cleverness that, throughout history, has only resulted in a victory for evil — the same cleverness that let the Nazi’s dupe the world at the 1936 Olympics and then go on to carry out the Holocaust; the same cleverness that saw a man dressed as the Joker open fire on a movie theatre full of people only a few years ago.

After the many mass shootings in recent years, there has been public outcry for stricter regulations on the sale and purchase of firearms. Still little has been done in the way of legislative measures. This is because many supporters of the Second Amendment fervently oppose changing existing gun laws.

Following the Sandy Hook and Newtown shootings, firearm sales skyrocketed because people were afraid guns would somehow become illegal and be taken off the market. Now gun company stocks are experiencing a similar boom.

Some of the people behind these trends are scared. Not necessarily that another mass shooting will occur, but scared that their guns will be taken away. They fear that the government will actually enter their homes and confiscate their guns.

The truth is that will never happen. Nothing even remotely close to that will ever happen. Even if we had the most liberal president in office, that would never happen because the Constitution says it can’t happen.

The Second Amendment is somewhat ambiguous about the right to “keep and bear arms,” but its antiquated language cannot and should not be interpreted as a justification for owning an enormous cache of weapons, which, in Stephen Paddock’s case included 17 firearms, many high-powered rifles converted to automatics, and countless rounds of ammunition.

The shooting in Las Vegas should be the catalyst for increased gun control. We can’t outlaw guns or take existing gun purchases away, but we can make it so that if a madman like Stephen Paddock devises a plan to open fire on a crowd of 20,000 people, he will have fewer and less powerful weapons. And unfortunately, given today’s political landscape, that’s about all we can hope for.

If the evil man perched on the 32nd floor of the Mandalay Bay had, say, two guns, and none of them were even close to automatic, and he had limited ammunition, many lives would have been saved. And isn’t that worth more than some Average Joe being able to buy a gun only our soldiers (militia) should have? Isn’t even one life worth more than someone having an arsenal that has no purpose other than to provide an adrenaline rush at a shooting range, or in Stephen Paddock’s case, kill more than 50 innocent people and injure more than 550 others?

Jimmy Kimmel did a monologue following the shooting and among the many things he said was one call to action that stuck with me: “Love and prayers aren’t enough.” All the luminaries in the world can offer their prayers, and the president can give his “warmest condolences”, but that isn’t going to prevent the next mass shooting, and it certainly isn’t going to bring people back from the dead.

Lastly, because we all could use a laugh, here’s a bit of satire in an incredibly dark time.