I got this from my mother and father. Unbeknownst to them they carried the gene that they passed along to me. Although it was not the gift they were looking to present me with, I have learned to embrace it. In the end we all have something.
As a member of the affected community, I have a privileged vantage point that makes me privy to certain sensations and intelligence allowing me to reflect on this thing, this sickle cell disease. Since the beginning, we have somehow managed to navigate the circuitous road of therapies that sometime impales our progress. We have and still do hope, no pray for the cure that will deliver us from this incessant suffering, the tortuous pain that pits us against implacable providers of relief who dole out miniscule amounts of analgesic. We want to call ourselves by our names and define our situational crises as we see fit. We want to have a say in what is written about us. We want to critique our critics and allies before misleading comments are committed to paper in medical annals forever shaping the version of who we are and what we do, however well intentioned. We praise the indefatigable healers who slay the dragons that make us slaves to uncertainty. We want a holistic approach to our healing. We want to do well, be well and live well. Mostly for me I want the affected community, to speak out, speak up and lead the way to our cure instead of being marginal participants in the cause.
When it takes a mother five years to get a 504 designation for her child from the school district, we have a ways to go. When we have individuals forever maimed because help hasn’t come soon enough or been complete enough, we have a ways to go. When we have a dearth of knowledgeable providers standing at the ready, we have a ways to go. When doctors have that look in their eye signifying there’s nothing left in that black bag, we have a ways to go. When the hospitalist sweeps into our room, casually announcing that we have avascular necrosis or chronic kidney disease, we have a ways to go. When children undergo chronic blood transfusions in order to prevent stroke, we have a ways to go. When children don’t even bother envisioning a world filled with untold possibilities, we have a ways to go. When transition is still a word bandied about in medical circles instead of a true pathway, we have a ways to go. When we have precious few veins left to puncture and the phlebotomist keeps sticking anyway, we have a ways to go.
When individuals with the disease see themselves as imperfect, we have a ways to go. When individuals fail to demand a better future, we have a ways to go. When insurance carriers refuse to write policies or if they do charge an exorbitantly outrageous premium, we have a ways to go. When individuals can’t have a career because the disruptions come hard and heavy, we have a ways to go. When individuals don’t exercise their power in collaborating with their health team, we have a ways to go. When research is competitive, tied to how many suffer and what is the potential for monetary gain, we have a ways to go. When depression is one’s constant companion, we have a ways to go. When medical staff gives you that look, you know the one, “drug seeker”; we have a ways to go. When the pain was 10 yesterday, is 10 today, and was 10 back when Herrick wrote his famous paper back in 1910, we have a ways to go.
When we don’t know what the next second will bring, and there are 86,000 a day, we have a ways to go. When it takes hours waiting in the emergency room before relief is rendered we have a ways to go. When virtually the only place you can go for deep doo-doo pain is the ER, we have a ways to go. When fear shadows us, we have a ways to go. When the legions of people with sickle cell disease are a bedroom community to AIDS, cancer and heart disease we have a ways to go. When states haven’t the courage to authorize legislation that may ameliorate this dreaded infirmity we have a ways to go. When Google does not list the cure, we have a ways to go.
I have a monkey on my back; I’ve been carrying him since my conception. Sometimes he perches on my shoulders quietly but there are occasions when he wraps his prehensile tail around my throat swinging back and forth, squeezing gently letting out an unearthly screech to remind me that I’m not the ringmaster of
this Barnum and Bailey life. I think that may be the most difficult thing for us--having to relinquish control without consent.
I have a room in misery’s mansion. I check in unannounced, unscheduled. No booking is ever required; I have a permanent reservation. I used to check out rather quickly after a short stay. However, bout after bout has taken its toll. It takes more effort and more time to recover and rise above the depths of my temporary incarceration. Nevertheless, I do eventually get out.
Poverty of vigor, unimpeachable fear and crucifying pain are the hallmarks of this disease. We all know this. It is the hurricane within for those of us which SCD. It is the storm-ravaged landscape, unrecognizable, unfathomable. I was talking with my friend Eric Kirkwood who is assiduously trying to stay ahead of the game. Eating nutritious meals, getting enough rest, using holistic measures, and exercising in moderation are a part of his plan yet he is still tired as Winnie the Pooh’s Eyore. We can do all the right things at the right time and still have erratic stability.
I’m angry that I have to use two hands now to count my friends who have gone over to the other side. I’m angry that some of them died alone. I’m angry that managed care is in all actuality mangled care. I’m angry because it takes several denials before people are approved for social security disability. I’m angry that white coated wonders still wander the halls of hospitals dispensing their own personal brand of insensitivity. I am angry that my compadres remain in the closet and haven’t “come out” to dispel the myths promulgated by various media. I’m angry that there isn’t a ground swell of collective energy directed towards the eradication of this inherited disorder. I’m angry that my blood cells only last 10 – 12 days. That’s not enough time to get to know them and have an intimate relationship. I’m angry that I have to fly with oxygen—it’s just one more inconvenience that comes at a price. I’m angry that we are so complex yet we get homogenized treatment. I’m angry that fewer doctors are signing on to care for us. I’m angry that most people still haven’t heard of SCD and we can’t seem to do anything about it. I’m bitter that race still plays a role. I’m angry that there’s so much work to do and we’re all so tired. However, I’m emboldened that we forge ahead despite the setbacks, roadblocks and grim reaper who lurks around the corner waiting to claim its next victim.
This pain slowly descends into molten hell, the crystalline pain boomeranging off my bones seeps into my limbs and joints rendering them useless. This lava that completely encapsulates my body unleashes a tyranny temporarily suspending my sanity. No amount of morphine or dilaudid or anything can exact total release from this stupor. Although our pain is a corporate experience, this is my individual definition. This is my personal devil. It is my master. I am its slave. I do not know its point of impact or final destination. I groan internally, feeling like I disappear a little. My world goes black. There is no question on the score: Hoxi 0, pain 1. I firmly believe there is always some compensation in every trial; however, I just haven’t figured it out yet.
I was wondering why grief counselors aren’t mobilized for people living with SCD since our lives are a comic tragedy laced with melodrama. If life is a stage, I vote for a new script. And since I haven’t been crowned queen of the universe I’ll just live my life like it’s golden, savoring each moment as it comes, even the ones that are dark and dreary because the incredible lightness of being always follows and that’s what I’m searching for.
Therefore, as I stride along, gazing at this world of chaos where the view is unpredictable, I repeat my new mantra, faith it, that is F-A-I-T-H until you make it.The foregoing expressions do not represent the sponsors or funders – just merely the musings of a black woman with sickle cell anemia. Thank you for the opportunity to speak and remember I am not invisible, we are not invisible, we are you!
-J. Hoxi Jones
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