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.

Advertisements

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.”

‘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:

Police Slayings: Our Pain Becomes Our Poison

After Police Slayings, One Asks: What is Our Night?

Editor’s note: This column, written in response to the 2016 murders of police officers in Dallas and Baton Rouge, was originally published July 27, 2016 in the York Daily Record.

Imagine waking up to a fog of pure blackness. It’s 8:30 in the morning, and there’s night all around. You’ve risen from bed and stand ready to charge ahead, toward another workday, expecting daylight to brighten the skies just as it did the day before. Yet, there is only the curtain of night.

Only in The Twilight Zone could such an unimaginable scenario become imaginable. Those familiar with Rod Sterling’s surreal anthology know of the rich trove of allegories. From Death posing as a hitchhiker to an accident victim (“The Hitch-hiker”) to a witch hunt unfolding in a suburban neighborhood beset by small-town hysteria (“The Monsters Are Due on Maple Street”), Sterling’s catalogue explores the depth of man’s fears and the magnitude of his faults. Of all the entries, “I Am the Night—Color Me Black” is my favorite from the collection.

For those who haven’t seen this episode, I strongly recommend that you do. The narrative follows the final days of a condemned man convicted of murder. On the morning of the man’s execution, darkness replaces daylight in the small town. The town’s newspaper editor arrives at the sheriff’s station to interview the murderer – a self-described “bad guy” – who has no regrets about taking the life of a racist tormentor.

A crowd of eager spectators show up to witness the execution, including the newspaperman and a town reverend. The reverend, a black man, speaks to the condemned man, who is unrepentant even in his final moments. “I know it all too well,” says the reverend, searching the man’s heart. “You’re guilty.” The man rebukes the reverend for siding with the majority opinion. Recognizing that injustice cannot be repaid with injustice, the reverend laments: “the minority must have died on the cross, 2,000 years ago.”

color-me-black-screengrab1
A reverend (Ivan Dixon), left, and a newspaperman (Paul Fix), right, speculate about the source of the town’s night.

When he is finally hanged, there is no solace. There is no satisfaction in schadenfreude and little comfort in revenge – only horror. Talking to the speechless gawkers, the reverend explains the source of their night. “It’s the hate he felt. The hate you felt. The hate all of us feel.” As more darkness smothers the town, the townsfolk begin to realize that they are the night. Hate, like personal poison, can never be contained. It festers inside us, bubbles to the surface and darkens our vision.

Returning to the station after the execution, the newspaperman, the wearied sheriff and his deputy contemplate the day’s events. As they turn on the radio, they realize that night has also descended upon other places of hate around the world: West Berlin, Vietnam, Birmingham, Chicago, and in Dallas. Dallas, at the time, was where an assassin’s bullet claimed the life of a charismatic president. The wounds of history would be reopened decades later, in much the same way, again in Dallas.

It seems, sometimes, that night is followed only by night; hate reciprocated by hate. But in the deluge of darkness, eyes cannot discriminate between black and white, or, I dare say, black bodies and blue uniforms. In the deluge, we seek only the outline of our fellow man. In the deluge, our own insecurities become abundantly clear to us, as we fumble and seek the touch of others. “In the darkest times,” tweeted actress Rashida Jones in response to the shootings in Dallas, “we must love even harder.”

It might be more reassuring if there were some mystical explanation. Perhaps, the darkness would be more tolerable if it were the act of a divine power or the result of some incursion by extraterrestrial forces. Instead, it so happens that we are the source. We are all hurting over the loss of black lives as well as the loss of blue lives. It should suffice to say we grieve the loss of all human life. As we wrestle with our pain, we guard it just as well, because suffering is no great leap from hate. And hate, when it boils and brews, spills into our streets and byways, with malice like that displayed in Dallas and, most recently, in Baton Rouge.

That is the nature of our country’s unprecedented “crisis,” as hailed by cynical pundits and a certain presidential candidate. However, these challenges, while doing nothing to diminish the emotional toll, are not unique to our time and certainly not unconquerable. Our country has faced racial tension and violence. The 1920s, with the explosion of organized crime fueled by Prohibition, was one of the deadliest decades for law enforcement, according to the National Law Enforcement Officers Memorial. In that same decade, our country also witnessed the resurgence of the Ku Klux Klan and the spread of its “Invisible Empire.” The challenges of today, as painful as they are, must be treated with caution and perspective, as to not inflame the wound.

At what point does our pain become our poison? At what point does hate begin to seep into our lives? The hate felt by those cop-killers in Dallas and Baton Rouge was the result of a hurt shared by many in this country. It spilled over and became our night.

I remember the terrifying feeling of waking up to more night, the night after those five officers were killed in Dallas. I have become wary of the night, just as a small child is wary of the unseen monsters lurking in his closet. It is the intimate fear of an imaginative threat. Maybe the monsters will never leave that vault. Maybe the darkness will never fully descend over the waking world. Still, the child will be in a state of constant worry each fretful night, always imagining what abominable beasts may be prowling. Only, it is hate, begotten of suffering and lurking within the soul, which occupies my fears.

Place of Placidity

 

Place of Placidity: Seeking Inspiration and Balance through Yoga

I was never a fan of high school gym class. Sports left me humiliated in a puddle of my own inadequacy. In trying to keep pace with my classmates, I was often left breathless. So you can imagine my hesitancies when I enrolled in a requisite yoga class in college. Standing in the gymnasium with my black roll-up mat, I never imagined that this form of exercise would have such an enduring impact on my life.

Since birth, I have always struggled with chronic and debilitating medical complications triggered by my disease. Sickle-cell anemia is a disease which mutates the body’s blood cells, turning them sickle-shaped. Normal blood cells are donut-shaped, but sickle-cell disease turns these cells sickle-shaped. The irregularly-shaped blood cells do not carry oxygen efficiently, do not survive very long, and can get lodged in the bloodstream, causing constant pain. One of the most frustrating things about this disease is that it presents itself as an invisible disability, leading to a general lack of understanding among the sickle-cell community.

However, I refuse to let this disease seize my life and silence my aspirations. Instead, I hope to shed some light on the disease, while also delving into how I use yoga to cope with the disease’s limitations. The aforementioned lack of awareness about the disease remains an object worthy of illumination in the sickle-cell community. The sad reality is that far too often sickle-cell sufferers overextend themselves in their attempts to remain fit. The disease has been blamed for the deaths of a handful of aspiring athletes. It is an unfair reminder of the physical limitations imposed by the disease.  While there is no danger in recognizing our limitations, there is great danger in being polarized by them. The polarization process is a process of overcompensation, goading us to internalize these limitations until they become ingrained into our very thought patterns.

When I practice yoga, I embrace a consciousness of liberation. I listen to my body and respect its limitations using warm-up exercises. I gradually condition my body to try more advanced poses. It’s a very organic approach to exercise. I don’t believe that there is only one path to fitness; we are all at different stages in terms of our health and conditioning. Sickle-cell anemia causes a deficiency of healthy red blood cells in the body. This description can be shorted down into one word: energy. Those who have donated large amounts of blood can relate to the depleted feeling that may follow. For those with sickle-cell anemia, this energy drain is felt on a daily basis. To counteract this, sickle-cell patients often require blood transfusions to boost their low blood count.

Few things are as demoralizing as not having the physical energy to do the activities that bring meaning and purpose to one’s life. On a spiritual level, it conveys a feeling of helplessness and inadequacy. With yoga, I appreciate the fact that I do not have to struggle to “find” energy. It invigorates me beyond the physical level. Breathing is a core component of yoga, and illustrates the vital importance of energy. Each breath we take should not be taken for granted; it should be used to energize and imbue us with a sense of purpose. Dum spiro, spero.

The loss of energy felt by sickle-cell sufferers brings a sense of imbalance. When your body is starved of oxygen, it becomes exceedingly difficult to maintain physical stability. Even simple tasks like walking up a flight of stairs can leave one disoriented. One of the first poses I learned in yoga, the star pose, helped me to regain balance and physical stability. I have also benefitted from the ways yoga uses the lymphatic system to flush away the body’s toxins.

On a deeper level, balance carries different connotations. Some people struggle to balance several jobs. Others seek balance in what they eat or by what they do. Put simply, balance is difficult. Happiness, Thomas Merton once wrote, is not a matter of intensity, but of balance. One of the most interesting poses, the plank pose, epitomizes this balance. The plank pose is a supine pose that is meant to ease physical tension and mental disquiet. In the course of an intensive workout, the plank prose provides a nice juxtaposition. Reflecting the turbulence of life, yoga takes one from a state of high energy to a state of low energy, representing the duality of activity and inactivity needed to maintain balance. In a society that often equates intensity with happiness, yoga reinforces the importance of stillness. Stillness, however, is not synonymous with latency. It is not a place of absence. It is a place of searching and contemplation.

I would have never assumed that yoga would have such relevance in my life. Make no mistake; my goal is not to champion yoga above all forms of exercise, but to encourage others to consider options that make sense to them. Fitness becomes all the more meaningful when it opens up unexpected avenues of self-exploration and consciousness. Max Ehrmann’s influential poem “Desiderata” has always been a source of inspiration in my life. In it, Ehrmann offers this piece of advice: “regardless of your trials and tribulations, keep peace in your soul.” When I practice yoga, I’m not in competition with myself or with others. I am practicing fitness while also seeking placidity.

Note: I do not claim to have any expert, medical knowledge about the disease. I speak only through experience and research I have done on the topic. The South Central Pennsylvania Sickle-Cell Association is a great resource for those with sickle-cell disease/trait living in the area.

 

Handsworth Revolution

Thorne’s Critique:

Steel Pulse’s Handsworth Revolution is a daring, politically-charged album that holds no punches in its bare critique of social inequality.
Rating: 8.5/10

Handsworth Revolution (1978) strays from the typical reggae blueprint of sun-drenched grooves and carefree themes. Breaking free from this mold, Handsworth Revolution is an exquisite roots reggae album by a band looking to establish its musical identity. The album is every bit as raw and contentious as its title would suggest. Don’t let the grungy exterior fool you though, Handsworth Revolution is a diamond in the rough.

Immediately, Steel Pulse establishes the pace with the titular track. “Handsworth Revolution” is a heartfelt yearning for widespread change, coming from the steely Handsworth area that seems to grace the band’s album cover. Confronting racial discrimination, injustice and corruption, the band sings about reclaiming its hometown for future generations. The deceivingly-collected rhythm quickly erupts into a rapid-fire, impromptu spoken-word verse towards the end of the song. “Handsworth Revolution” holds no punches and serves as a solid introduction to prelude the rest of the album.

Steel Pulse follows with the derelict “Bad Man” – a song so primal in its delivery that it almost sounds as though it was produced deep within the jungle badlands. Lead singer David Hinds’ taunts to “leave town” are embellished by guitar riffs and a cacophony of guttural chants from the background singers. Hinds also uses clever metaphors to illustrate his point: there can be no sharing of power, because he is the “badder” man. Make no mistake; “Bad Man” is full of bravado and pretension. However, if one examines the song more closely, there are also subtle signs of weakness and insecurity. “Bad Man” is also a message about slavery. “Four-hundred years” and “strange fruit” are meaningful historical references that give the song its intellectual edge.

One of the more reserved tracks on the album, “Sound Check” is an odd, but thoughtful ode to music and dance. “Prodigal Son” highlights the album, with its foreboding rhythm and highly critical lyrics. The song artfully uses the jeremiad rhetorical device and draws upon the Biblical parable to craft a transcendent narrative of redemption. “Prodigal Son” is a powerful, apocalyptic admonishment of a wayward, materialistic society on the brink of collapse. Finally, “Ku Klux Klan” is every bit as fiery as the title would suggest. The rebellious “Ku Klux Klan” is quintessential Steel Pulse material.

Uncompromising and politically-charged, Handsworth Revolution is an anomaly in the reggae genre. With one foot in the Caribbean roots reggae scene and the other foot in the punk movement in England at the time, the album would eventually become representative of Steel Pulse’s unique sphere of influence.

What makes the album such a gem is that it retains its edginess without losing its feel for the music. A common dilemma among politically-themed artists is getting the message across without becoming preachy. Handsworth Revolution effortlessly avoids such pitfalls. What’s more, Steel Pulse needed only eight strong tracks to accomplish this difficult task. Cries of injustice reverberate throughout the concourses of this album, but the album never loses its cadence. The rhythms, though minimalistic, compliment the band’s evocative lyrics. And though Steel Pulse is noted for its great passion and energy, Handsworth Revolution is entirely focused. Deserving of its critical acclaim, the album not only established the Steel Pulse identity, but also solidified the band as a top-tier reggae talent.