New Online Platform Brings SCD Community Together

It’s been a while since I posted about my debacle with sickle-cell disease (SCD), a painful and debilitating blood disorder. In the past, I found it difficult to write about this disease from a personal perspective, without some sort of pessimism about the sobering realities sufferers like me face.

Today, however, I want to share positive news of an online platform that will soon be available for SCD patients and their loved ones. OneSCDvoice is set to launch this month, and I am personally excited about how this platform will benefit both SCD patients and the organizations which serve them.

There are two great features I want to discuss here: Trusted Resources and the SMART Social Wall. I’ll start with the SMART Social Wall, where SCD patients can talk about their experiences in an online setting.

I’m optimistic about the online aspect here, since it eliminates the physical and environmental constraints faced by SCD patients who would otherwise have to travel to meetings and events in order to assemble and network with other patients like themselves.

The Trusted Resources feature, which is basically a trove of credible resources and information related to SCD, is also really attractive. The health tech group that created OneSCDvoice, rareLife solutions, has a software that “analyzes” social posts and then culls Trusted Resources for relevant and useful content it can then organically insert into the Social Wall conversations. I think it is always wise when organizations are able to bring the resources to the patient and not vice versa.

Many with SCD find it difficult to get the information they need. Sometimes, we simply don’t know where to look. Other times, the process of getting the information is both laborious and intimidating.

While few have the time and willpower to scour academic journals and clinical studies, OneSCDvoice seems to combine that expertise and scholarship with a bottom-up, grassroots approach that puts the community front and center. We all know that this information is out there, but people need to feel like they are part of the equation.

If you are an SCD sufferer or caring for someone with the disease, I encourage you to pre-register at www.onescdvoice.com, as I did today. You can also check out this news release to learn more.

I know this entire post feels like a sales pitch, but I haven’t been paid a penny to write about this. I am very grateful that someone brought this to my attention, so that I can spread the word to others who, like me, were not even aware of this.

A number of nonprofit groups are involved in this effort and, as I mentioned earlier, I think this platform has a lot of potential to benefit everyone in the equation, from patients to researchers and everyone in between.

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Who ‘Owns’ the N-Word?

I find the idea of a community “owning” a word ludicrous, which is why I oppose the double standard regarding the acceptable use of the N-word.

Before I go on, I want to assure readers that the actual word will not appear anywhere in this essay, even for reference purposes. The N-word is an awful slur, a venomous and emotionally laden epithet that has no place in our social vernacular.

I wish that word could be phased out of the Black community, like the purging of some virus ravaging the body of its host. Perhaps, then we can begin to heal.

Maybe you are already aware of the double standard: the N-word belongs to the Black community. It’s like some unspoken code. Black people can utter it without repercussion. We can say it in barber shop-type settings and in self-deprecating comedy routines and in certain genres of music.

However, the same latitude is not granted to those outside our community. When someone who is not from our community says it, he/she has just crossed the line, even if their intentions were anything but to offend. That word is our word. We own it.

I’d like to dispel that notion. Scratch that. I’d like to beat it over the head with a shovel and bury it in the backyard.

As a black man, I don’t claim ownership of that word. I don’t want ownership. That word has no positive meaning, value, or place in my life. I certainly don’t find it empowering to reclaim a racial slur that connotes generations of pain and prejudice.

There is no double standard. The N-word is not some privileged term that we own. In fact, I wish the Black hip-hop artists and comedians so endeared to the term would relinquish ownership of it, too.

I understand but disagree with the effort by marginalized communities to repurpose, refurbish, or otherwise reclaim disparaging terms. The aim largely is to neutralize the virus: to take this awful word and its awful history and lessen its destructive power by making it exclusively ours. The problem is that instead of letting the virus die, they would prefer to incubate it and create social rules around it, as if hugging the virus closer to our hearts will make it any less dangerous.

I’m also not so naive as to believe that if Black people stopped using the N-word it would suddenly disappear. We, as Black people, cannot control how the word is used by others to denigrate and disparage us, but we are taking control when we choose not to use it. We empower ourselves when we bust to pieces this double standard.

Genuine bigots considering using the term can no longer point to this so-called double standard to legitimize their use of the term. No longer will we have to suffer the tired excuse: “If Black people can say it, then White people should be able to do the same.”

The Broken Things

Editor’s Note: This selected work is from my new chapbook, The Groundwork of Realization, available on Amazon ($0.99).

The Broken Things
By Thorne McFarlane

Angels fall from the perch they were graced,
Oversized crowns fall from the heads of kings,
The world is a junkyard for the misplaced.
All things lead to a valley of broken things.

High hopes, lofty dreams, inflated egos,
All come crashing down on those below.
Heavy-handed disputes, frivolous pursuits,
Turning men into brutes,
Turning friends into foes,
Sinking the world we know.

So many broken things,
All things are broken.
So many broken things,
All things are broken.

So many broken things,
All things are broken.
So many broken things,
All things are broken.

Broken hearts and broken dreams…
So many broken things,
Greener pastures where angels sing,
Men try to fly with paper wings,
So many people are using broken things.

A vast puddle of broken things…
Success comes at a hefty cost,
For every battle won is a battle lost,
Empty wells, carpets of eggshells,
Personal dungeons are eager jail cells.

Broken things lead to more broken things…
Human beings break other living matter,
Victims battered, innocence shattered,
Now more broken things are scattered.
So many people create broken things.

So many broken things,
All things are broken.
So many broken things,
All things are broken.

So many broken things,
All things are broken.
So many broken things,
All things are broken.

Broken things and empty rattles…
Faceless ground becomes flesh,
Old wounds become fresh,
Winless battles, heavy saddles,
Men try to swim with broken paddles.
So many people are using broken things.

It seems people don’t care about broken things…
A junkyard for the misplaced and the forgotten,
Eyed with suspicion, criticized with no contrition,
Idealistic pursuits, youthful fruits become rotten,
People no longer tend to these broken ambitions.

High hopes, lofty dreams, inflated egos,
All come crashing down on those below.
Heavy-handed disputes, frivolous pursuits,
Turning men into brutes,
Turning friends into foes,
Sinking the world we know.

Angels fall from the perch they were graced,
Oversized crowns fall from the heads of kings,
The world is a junkyard for the misplaced.
All things lead to a valley of broken things.

Life Lives On Lives

Life lives on lives.
We exist to see the world through another’s eyes.

One man does not an island make.
It is with each other we must affiliate.

We co-exist in this world of ours,
Although goodness and hope seems to be devoured…

And until this world goes empty and dries—
You must never forget that life lives on lives.

“I’ll be there.”

The only saving devices.
In the event of a raving crisis,
Only unity can conquer the violence.

The money we hold is only stone-cold.
Bastardized, pocketed, then given away and sold.
Life is more precious than any amount of gold.

As the anger grew, so did troubles brew…
So many human lives it took—
Written from the sun into a lonely book,
The spoils and the casualties of war,
How many did it take to settle a score?
Shallow men guided by the heat of their own tempers,
Wholly consumed and swallowed,
They wallow in the burning passion of their own embers.

For all the innocent blood smudged between the fog and the smoke,
The fed-up peoples stood up and spoke. They piloted a new generation.
Using this occasion, these same men and women rose to fill a rift in the nation.

For every solid shoulder to carry the feeble,
This became the chance to combat a cycle of evil.
Cutting the loop, they took the forgotten names from the lonely book.
Every forgotten voice,
Each misplaced letter was now made to shine. Vivid and vibrant.
America—a mosaic that was once a pool of islands.
We co-exist in this world of ours,
We make precious our very hours.

Never alone, we walk through the land of the misplaced and forgotten.
We place a shoulder of support for the dejected and downtrodden.

Don’t let the fiery haze guide us to our final slumber.
Life is golden; and age is merely a number.

And though goodness would appear to be devoured,
The voice of reason is forever empowered.

And until this world goes empty and dries,
We must never forget,
Life lives on lives.

This poem is inspired by the wisdom of the great Joseph Campbell who, through his writings, taught me that “life lives on life.” Innately, we are all fumbling for meaning, but perhaps it was never there. We must strive and will, chasing our rightful passion, bringing meaning into our lives and thus enriching the world around us.

Essays on the Common Man (Part II)

Food for the Machine

Don’t feed the system, fight it.

Hear the screams?
The voracious fiend,
When it sets its sights on you,
You become food for the machine.

Don’t feed the system, fight it.

The American Dream, the illustrious pie in the sky,
Satellites, the all-seeing eye in the sky,
Supervision, celestial superstition,
Meanwhile, on Earth, there’s terrestrial schism:
Domestic racism, exacerbated, aggravated,
And elevated by increased terrorism overseas,
Distractions from the dismal fiscal rotaries,
Treading over rough waters, like the economy,
Like teeter-tottery,
Homelessness and poverty,
Declining values of property,
Foreclosure forces some into welfare,
And many fall sick on rising costs of health care,
While every other week presents another health scare,
A perfect storm mixing the right cocktail of conditions,
The exotic recipe appeases the system.

The experts rile feathers, push the right buttons,
Politicians, pundits, say things like it’s all redundant,
Party loyalty, constituents don’t seem to matter,
Just another rung on the political ladder,
Cut budgets while their pockets get fatter.
I’m getting tired of these screaming voices,
Outside noises, media personalities trying to influence choices,
The more you watch, the more you step inside the box,
And you might find it too much to handle, constant scandal,
“If it bleeds it leads,”
Tragedy, corruption, greed,
Murders, robberies, rape,
Sound bites, audio, video tape,
And you might find yourself in far too deep to escape,
Far too deep, in the complex of this prison,
You might find yourself in far too deep, in the bowels of the system.

Hear the screams?
The voracious fiend,
When it sets its sights on you,
You become food for the machine.

Hear the screams?
The voracious fiend,
When it sets its sights on you,
You become food for the machine.

Don’t feed the system.

It is said that no wealth equals knowledge,
And no poverty rivals ignorance.
But education is under-funded,
Teacher salaries slashed, resources hashed,
Under-performing schools leaves communities trashed,
Rising costs of books and supplies, student debt,
Tuition, dormitory and rent, all of it spent,
Trying to stay afloat,
Feel those hands around your throat?
It devours everything it touches,
The system has you in its hungry clutches.

Chasing the cheese, dodging obstacles in the maze,
A rat race, the cheese is overrated but every rat wants a taste,
9–5, 24–7 in the work economy, fast-paced, haste,
But it beats unemployment, or it seems,
Dead-end pay, too many blues, not enough green,
Don’t feed the machine.

Hear the screams?
The voracious fiend,
When it sets its sights on you,
You become food for the machine.

‘28 Days Later’ and the Zombie as a Political Metaphor

Some films occupy a special place in your heart. They have a resonating effect. To put it simply, they stick with you.

For me, Danny Boyle’s 28 Days Later has to be one of those films.

In 28 Days Later, a bicycle courier named Jim awakens from a coma to discover that a virus known as “Rage” has swept across England. After coming across other survivors, he must ward off the infected while striving to retain his humanity in a post-apocalyptic world.

The peculiar thing about 28 Days Later is its ability to mix beauty with bloodshed, tenderness with terror. There are moments of sheer hair-raising terror. There are also moments of intimacy, lightheartedness, and deep reflection. It is typically a very difficult and risky venture trying to get these conflicting story elements to mingle.

Conventional thinking is that people who like to be thrilled have very different tastes from those who like to be intellectually challenged. This may be especially true for horror fans, whose palettes often reflect their views of the genre. Some horror fans enjoy the visual gore, while others are fond of horror that appeals to them on a psychological level. Similarly, what is intellectually-stimulating to some is boring to others; the gore and thrills which satisfies the latter audience is base and off-putting to the former. Works like 28 Days Later defy conventional thinking, proving that, yes, there is an audience of people who like to be thrilled as well as stimulated.

The film is often credited with revitalizing the zombie genre, even though many would argue (justifiably so) against this categorization. The infected, after all, are technically not zombies. They are not reanimated corpses with a taste for human flesh but rather living people driven to raging aggression by a viral outbreak. For the purposes of this essay, I argue that the infected are conceptually “zombies.”

I have a particular fascination with zombies as a powerful political metaphor. Zombies are unique in the sense that they occupy plot, character, and setting. Let’s set aside the stereotypical perception of zombies as decaying, shambling, grotesque hordes of tired clichés and overused tropes, and start to appreciate them for what they represent. When we do that, we start to see that zombies are truly terrifying.

Zombies, of course, emblematize the end of the world and the downfall of human civilization. Hence, they provide the rich reservoir from which political allegories can be extracted. In “Metaphor of the Living Dead,” Daniel Drezner explains how zombies are used to contextualize three specific societal anxieties in particular: war, globalization, and pandemics.

More than that, however, zombies represent the subversion of reality. More specifically, they challenge the rudimentary conceptions of life and death. Because they are neither living nor dead, zombies tap into the innate human fear of death, and the uncertainty surrounding it. The idea of absurdism comes to mind, as the characters in a zombie apocalypse are thrust into a world that is fundamentally askew, in which the laws of nature are essentially broken. In a zombie apocalypse, there is no uncertainty surrounding death. In a zombie apocalypse, survivors find themselves in an absurd nightmare, where living futilely is the only way to overcome an overwhelmingly bleak and meaningless situation.

Indeed, at the heart of 28 Days Later is the unraveling of reality, prompted first by Jim’s awakening at the hospital, followed by one of the most haunting and iconic sequences in the film, when Jim dazedly roams the empty London city streets. The protagonist-waking-up-from-a-coma scenario has become standard fare in the post-apocalyptic genre, used to call into question the very solidity of the protagonist’s reality. There are moments in this film that are near-dreamlike, constantly calling into question if Jim is still dreaming. It is thus difficult to discern whether or not the suicide note Jim receives from his parents, in which they tell him not to wake up from his coma, is meant to prey upon the viewer’s suspicions. The surrealistic feel of the film is further aided by its shaky cinematography and John Murphy’s atmospheric soundtrack.

Through this essay, I have sought to outline the ways in which zombies embody meaning far beyond their literal incarnation. 28 Days Later has managed to reimagine the prototypical, Romero-esque image of the zombie while remaining true to its metaphorical meaning. Between the eye-gouging and bludgeoning and a “Rage” virus which unlocks mankind’s brutal inner nature, 28 Days Later is still a wonderfully poignant film. And like all great zombie films before it, it offers sharp insight into human nature, political anarchy, and the potential collapse of human civilization.

For further reading:

Essays on the Common Man (Part I)

I Am the Common Man

I am what you would call the common man, and in hard times you could call me the invisible man.

I struggle to make ends meet, but pressure amounts and the problems never seem to diminish. When it rains, it pours, until I find myself trying to keep afloat in this lake of misery and mediocrity. And if, for the brief moment, I ever forget how to swim, I will surely drown.

It seems that my dire concerns become mainstream only when there is an election to be won; my personal hurdles become another match point, political prostitution and mockery, a blood sport prize.

I am the common man. I am a simple man, so my concerns are not otherwise fashionable. They are rather ordinary, unadorned, like the faded T-shirt and the weathered pair of jeans I wear on the weekends. Or, better yet, like the long-sleeved pin-striped collared shirts and gray pants I wear to work each day. Not at all like the confident cardigan sweaters that I wear on casual Fridays.

My struggles are not to be exploited, worn and shelved and worn again as the situation demands. They are not a pair of shoes to be polished only to then be retired and collect falling dust in the closet. I live with this back-breaking burden every day, like the daily tax for living. My struggles are a plea for relief, a cry to ease the burden that may one day cripple me.

I am the common man, driven by unwavering faith and untarnished optimism, despite these harsh trials. My driving faith keeps others moving. As long as my feet are planted firmly on this earth, I don’t have the option to lift my arms to the unmoving heavens in pitiful surrender. If my children see me weep and bellow in sorrow, they will lose faith in their own futures. If I fail to lift my weary head, they, too, will ignore the opportunities before them. Yes, I am the common man, but to my babies, to my darling wife and aging parents, I am an extraordinary man indeed.

Until the time when my travails become more than a footnote in modern political discourse, I will work tirelessly to ensure a more prosperous lifetime for the next generation. And though I may stub my toe, I will continue to trot onwards, toward fulfillment and happiness, because my uncolored commonness is my dazzling uniqueness. I am strong because I am in the company and fellowship of many other common men and women. I am the overworked, underpaid, overburdened, underrepresented man.

You may otherwise refer to me as the common man.