This is a story about accepting what cannot be changed. About growing older and learning to understand that the minor setbacks of your largely picturesque life pale in comparison to the hardships of others. It’s about embracing what you once detested; being proud of something that historically caused you to blush with embarrassment. A story about learning to be honest rather than hiding behind a veneer that only caused you shame. Buried inside, a story within a story, is a chapter in my ongoing attempt to be open and honest with myself and others, to explore what makes me me, and to bare my soul, as it were, on matters often left unspoken and buried, remorsefully.
Every story has a beginning, and this one too: Michael Jackson. A celebrity that needs no introduction and brings to mind a multitude of stories in name alone. One whose career started young and whose brilliant flame of a personality was stifled too early when he died in 2009, only 50 years old. He inspired—and continues to inspire—countless people with his music; he awed people to goosebumps with his dance moves and iconic music videos; he prompted controversy and incited rage in the wake of repeated criminal allegations.
There are books by the dozen written about the life of Michael Jackson and this story will concern itself with only a fleeting aside undoubtedly mentioned in those works. Namely, Michael Jackson was born with the skin of a black man yet died with pigment as white as his sequined glove. For this he was ridiculed, made to look crazy. “Wacko Jacko! He bleaches his skin!” These claims were refuted by Jackson, and rightfully so.
Because Michael Jackson had vitiligo.
And so do I.
Vitiligo is, to the best understanding of modern medical science, classified as an autoimmune disorder that results in the loss of skin pigment in the affected areas. And by “loss” I mean to say “depletion”, by which I really mean “destruction”. It’s obliterated, marred, blighted, terminated and devastated. I use these alarming words intentionally to contrast against the fact that beyond physical appearance, vitiligo does not instigate any negative health effects. While certain autoimmune disorders have been observed to frequently accompany vitiligo—Addison’s disease, thyroiditis, type 1 diabetes—vitiligo itself is as harmless to ones overall health as a patch of mildly dry skin on your forearm.
It’s an incurable disease with only superficial manifestation. Pause a moment here and join me in appreciating this juxtaposition. Trust me, it’s hilarious.
The word vitiligo is etymologically tied to the Latin word “vitium”, which used in this context means “blemish” or “defect”. The modern word has been used to describe a medical condition since the 1st century CE when Aulus Cornelius Celsus, a Roman physician, wrote about it in De Medicina. And yet the malady was written about much earlier, as described in a 2010 textbook named after the ailment.
Hundreds of years before Christ, vitiligo was present in ancient Indian sacred books, such as the Atharva Veda and the Buddhist sacred book Vinay Pitak. Atharva Veda gives a description of vitiligo […] under different names such as “Kilasa”, “Sveta Khista”, “Charak”. The sanskrit word “Kilas” is derived from “kil” meaning white. So “kilas” means “which throw away colour” […] The term “Charak” used by villagers means “which spreads or is secret”.
Despite its long history, vitiligo has neither a cure nor a consistently effective method of treatment, the two most common of which are controlled exposure of the affected areas to ultraviolet light, and the topical application of steroid creams. Because vitiligo has no negative side effects, research is not well-funded nor deemed a high priority in the medical community. Once diagnosed with vitiligo, you have two choices: accept it or… accept it.
The first unsightly indication of vitiligo graced my skin just below the knee on my right leg. In my memory I was in sixth grade, placing me at about 11 years old. My first memory of it involves sitting at my grandmother’s kitchen table. Mom and Nana are looking at the small spot of white skin, discussing its possible origin. At the time I was living the rough-and-tumble, injury-prone life of many young kids, and knees were a frequent site of scrapes and bruises. While sitting there, I recall one of them suggesting that it could be a scar of sorts. As if my pigment, fed up with the repeated abuse and continual abrasions, simply gave up and went somewhere else.
I have no recollection of the fated doctors visit where I would first hear the word that would thereafter work its way into my identity, but some time later I visited the Connecticut State Capitol with Dad and my sister. It’s a magnificent building, visible for miles around by its gilded, domed tower. We were given a tour of its stately hallways and went home with photos as souvenirs. In the one that sticks in my memory, I’m sitting on the throne-like Charter Oak Chair, a veritable work of art carved of a fallen oak tree in 1857. Dad took the photo, standing perhaps 40 feet away. I’m wearing shorts, and if you look closely enough you can see that first spot of vitiligo, like a drop of bleach that fell onto the photograph and washed out the color.
When Michael Jackson began wearing a single white glove, a token that came to be his hallmark, he too was noticing early manifestations of his own vitiligo. The permanent introduction of the glove to his wardrobe was seen at the time as a fashion choice, though is now understood to have been a prop to hide loss of pigment on his hand. Jackson unintentionally became “The Gloved One” in an attempt to hide his condition.
There are moments in the lifespan of my vitiligo that stand out as starkly as the affected spots themselves. They are often accompanied by conflicting emotions and difficult conversations. Sometimes they were personal realizations, and other times were observations made by others that, for a bystander, would appear innocent but for me were impactful. For Michael Jackson, one such moment would have been the donning of the glove. The understanding that he could no longer avoid pointed questions if he did not make the effort to cover his spots.
The first of such moments for me came late in high school around the time that I was becoming intimate with my first serious partner. Vitiligo is a condition which abides no reason nor rules in its slow spread around the body, so you can imagine my dreadful apprehension at explaining to my then-girlfriend what the pearl-white spots on and around my penis were. At a time when the mere prospect of showing your naked adolescent body to another human was embarrassing enough, explaining the presence of an alien mark, a blemish on my most private of parts, was morbidly uncomfortable.
But by the grace of a God I’d by then sworn off, my girlfriend embraced my defect. As we sat on the side of a hill, one overlooking the sports fields at our high school, she told me that not only did she not think my spots were weird, but that she actually kind of *liked them. *At the time I was likely incredulous, disbelieving of her response, and yet through the years I’ve heard the same response time after time from partners that shared intimate moments with me.
These moments, the ones intimate in nature which for me were remarkable and memorable in the extreme, were surely minor footnotes for my partners in the larger story of our relationships. Despite this, they should know how thankful I am, both then and now, for their understanding and reassurance. I hope that Michael Jackson had similar reassurance from people he loved. To be told in adoring honesty that your absolute belief in the adverse affects of your condition is without merit is to learn a little bit more about the world. It is to realize the objective insignificance of things that once paralyzed you.
The second of these substantial memories came midway through college. I was 20 years old, and by then I’d begun to exhibit the first signs of vitiligo on my face, around my eyes. When vitiligo spreads, it arrives gently, like a camera lens coming into focus. Before the stark outline of zero pigment comes a period of fuzzy gradation, like a splotch of pastel watercolor paint. At the time, this was the state of pigmentation around my eyes. So perhaps it was inevitable when one day, innocuously eating lunch in the cafeteria at school, a friend looked me in the face, paused hesitantly, and said:
“Mike, you have a really weird tan around your eyes. Did you get sunburned?”
The building fell down around me. His meaning came swiftly to me. I swallowed hard. And said:
“Oh, yea. I was wearing sunglasses outside this weekend.”
The first white lie, to make poignant use of a pun. The first time I’d make up an excuse to explain the presence of, or rather the lack thereof, pigmentation on my body. These two lines of dialog—one sharpened meticulously on a whetstone, unbeknownst to its wielder, the other a quick sidestep to the left, barely evading a direct blow—set in motion the journey that I am now finishing. The grail at the end of the adventure, so to speak, is this piece you are right now reading.
Shortly after this painful conversation, I began wearing foundation around my eyes. All it takes is a dab, with a few light strokes to blend it in. When I first started this practice, I felt foolish. I hid the fact that I wore makeup from everybody except those who I had no choice but to be straightforward with. I fell prey to the belief that I would ridiculed out of hand as a man wearing a product made for women. In my apartment I would shower and immediately reapply, lest my roommate catch a glimpse of me sans coverup. When I traveled I would steal away to the nearest bathroom at the first light of day, making sure that nobody saw me without my cosmetics.
I still wear makeup—this isn’t the part of the story where I realize my vanity and swear off the shackles of my narcissism—but my understanding of it has changed. I wear makeup around my eyes because it’s easier than explaining my condition when I don’t. Because it’s easier to cover it up then expose myself to second looks and sidelong examinations in my day-to-day existence. If I’m asked about the spots visible on other parts of my body—on the backsides of my knees, the tops of my hands, inside my wrists—I reflect back on the inquirer whether they know the word vitiligo. If they don’t, I give them the abbreviated version of what you’re reading. I’m learning to take pleasure in how I can provide education rather than manufacture humiliation.
Hearing my experience, imagine, if you can, the plight of a celebrity, one possessing fame beyond comprehension, who must decide whether to endure ridicule as a black-and-white man, spots up and down his body, or instead maintain a semblance of normalcy by removing all of his pigment, returning to a baseline of consistency. This is the decision that Michael Jackson, and thousands of others who’ve inherited vitiligo and also possess skin of a darker-than-white tone, must make. Being a caucasian person living with vitiligo has had a profound effect on my understanding of human suffering relative to my own, and not just as it pertains to vitiligo.
I once read an essay written by a black woman with vitiligo. She discussed her job working with kids, one which unsurprisingly resulted in frequent questions from the curious, unfiltered minds of children. “What’s wrong with your skin?” they would ask her. “They’re my spots!” she would reply. “Like a zebra.” The kids would beam. They understood.
It has taken me almost 20 years of life to understand this myself. These are my spots, and like a zebra I have no power over their existence, whether I like them or not. Like my aforementioned partners, I’ve also come to “kind of like” my vitiligo. They, like the children, understood the nature of things that simply are and embraced me for something deeper than pigmentation. More than simply surmounting the visual manifestation of my vitiligo, I’ve begun to see it as a vital part of who I am. Its presence in my life has undoubtedly had a positive impact on my ability to empathize with others and to see beyond the pithy problems of my life as a middle class, heterosexual, white cis-male.
In a sense, maybe this “incurable disease” of mine has been treatable all along. Perhaps it bestowed itself upon me seeking only to help me become stronger. Stronger in the face of hardship, stronger as a friend to those in far more dire circumstances than myself. Maybe vitiligo has taught me that the cure for an incurable disease is the decision to embrace it.