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Wrestling with ‘Fabulous’ - When Cancer Goes Against Your Image

Mar 12, 2021 12:06:29 PM

Gloria was my surrogate mom and a role model. For a time.

                                   

Upon even casual consideration, it was so clear that her name was the perfect moniker for such a force of nature. But then she amplified it. Gloria claimed a nickname for herself that would live in infamy. If you knew her, it would be neither surprising nor a bridge too far. “The Fabulous One” and mom were best friends. My mother was fun in a dignified, more conservative way, while Gloria was flamboyantly “living out loud” and boldly unapologetic about taking up space in the world. Long before any of us had access to easy-peasy genetic testing, Gloria had claimed her African ancestry proudly and loudly, and just in case anyone was confused by her light-bright complexion. The fact that she performed in community theatre was such a natural extension of her personality that it was redundant. Gloria was a character. She never, ever left the house without looking like she had a date with destiny.

 Gloria wasn’t the life of the party, she was the party. Her go-to style was festive but regal. She was consistently decked out in generously flowing kaftans made of bright colored fabrics and usually in African or Indian motifs. She didn’t just walk, she pranced and glided and promenade. Whatever she happened to have on would gather around her, flappling and flowing in joyous movement while trying to keep up with her. Accessories were all but unnecessary, but she was never seen in public or in her own home without wearing a pair of earrings likely acquired from a festival which some local artisan had handcrafted. She believed in supporting fellow artists. In all the years I knew her, Gloria also wore prominent headwraps at least fifty percent of the time. When her head wasn’t covered, she rocked a short ‘do’ that was dramatic in itself at a time when most women were trying to emphasize length. Her style consistently included statement bangle bracelets that made noise. Her hands, that were in constant motion if not in a dramatic pose, were always adorned with at least one ring each.

 Gloria Davis Hill had a distinctive way of calling the house and asking to speak to mother. And it always brought a smile and a snicker. And her cadence was “extra” also, making certain that Dad or I would be. The fact that we recognized her voice was beside the point. “This is ‘The Fabulous One. Is your mother available?” I fondly remember Dad and I laughing at all the drama, The “extra.” But we all had come to relish her effervescent eccentricity. To quote one of my favorite song lyrics, she brought the sun out to light our lives up. I can dedicate that sentiment to both my mother and her best friend. And ironically, both of them were Black women who taken too soon in the prime of their lives. My mother’s health problem was chronic and spanned decades. Gloria’s disease was apparently known only to her and hit the rest of us like a bolt of lightning.

But, when the long distance phone call came from her daughter, I thought she was using gallows humor and making a morbid joke. I teased back and basically told her it was . Understand the fuller context of who Gloria was, but understand that I was quite literally waiting for her to arrive in New Haven by train. That day. I was to be picking her up from Union Station so that she could lead a series of cultural storytelling the following day during my portion of the International Festival of Arts & Ideas for which I had been chosen as an artist-in-residence. Gloria was slated to be a featured artist in my installation celebrating New Haven’s Sister Cities program. But Kimberly was not calling to say that her mother was running late. She was calling to say that “The Fabulous One” was dead.

 Wait.... WHAT!?!

 No, there hadn’t been an accident. It was not foul play. She asked me if I’d known that her mother had breast cancer. Because she hadn’t even told her daughters. Did I know?

 Wait...WHAT?!?

 There was an investigation opened as a result of someone (I forget who) finding her lifeless body. Medical officials quickly theorized based on visual examination that she died of breast cancer that had likely metastasized. It appeared that she had not sought treatment. It also appeared to have been the more aggressive form of invasive breast cancer. She had rebuked all forms of standard medicine, anyway. As the information evolved, it was clear that Gloria had not accepted what would be considered standard insurgery, radiation or traditional chemotherapy that would seem almost obligatory for anyone who loved life as much as she did, and who had as many loved ones in her tribe as Gloria did. It will always be impossible to reconcile her decision to suffer in silence. The pain she must have suffered as the masses in her breasts grew is absolutely unfathomable. The fact that she did it her way is an absolutely classic Gloria move.

 I was accustomed to Gloria using essential oils, burning sage and using natural aminos in her food. None of those things would have been red flags. A couple of months earlier— which would be the last time I was fortunate to in her presence— we had visited with her in DC and I went in for a heartfelt good-bye hug, I kind of noticed in that moment that one of her arms came across her chest but she hugged me back with the other. At the time, I assumed she was just adjusting the extra fabric of her kaftan. In hindsight, I think she instinctively blocked her chest to buffer the heightened pain she would have endured. In hindsight, that moment was both a “tell” and a profound metaphor. She loved me fiercely, but at the same time, was not about to let me in on this horrific secret. She loved all of us, but she could not bring herself to be seen as vulnerable or sick or dying.

 There is something to be said about doing things your own way. She would not have embraced any pity parties or fawning over her out of sympathy. Ironic, but I reckon that she was impatient with the appointments and side effects that would have been disruptive to not only her lifestyle and schedule, but her very persona itself. Having cancer did not fit in with her sense of self, and living out loud— And whether she was in the deepest denial or her own version of full acceptance will remain a mystery.

 The fact that Gloria did not receive treatment creates more questions. Was she under care but opting out of treatment? Did she lack insurance coverage and was her unwillingness really indicative of her lack of access? Rather than refusal, was it really because she lacked medical coverage? Despite her customary bravado, was she in fact intimidated by white coats and navigating the medical system? Was she cynical about medicine because she had lost her own mother as a child? Was she fearful because of historical abuses that went by the names of Tuskegee and Henrietta Lacks? Was she embarrassed because she felt she could have preemted a late diagnosis had she acted sooner? Was it all about not appearing weak or refusing to play “victim?” So many questions.

 Also this: Was the possibility of enrolling in a clinical trial ever brought up? I’m thinking not. All of the poignancy surrounding this tragedy makes me resolute. You will hear from me. Believe that. I applaud Gloria for maintaining her own agency and respect her for making her decisions without interference. But there comes a time when suffering in silence begs purpose. It will never be my way.

 I am eternally grateful for the beautiful friendship “The Fabulous One” granted my mother. I revere her for the love she showered on me. And the example she set for claiming your space and speaking up. I have also decided that martyrdom is not a good look or a desirable legacy. Denying loved ones the opportunity to know you more fully and in a truthful, balanced way. To rally to your aid. To feverishly help you explore treatment options. To identify patient support programs, to be supportive, and to navigate the unknown waters of clinical trials. To deny loved ones the ability to spend precious time with you and — to hold your hand and express our love for you— is not fabulous. Not in the least. I have learned from that, too.

 

Allison Kalloo, MPH

Written by Allison Kalloo, MPH

Allison Kalloo, MPH is a patient recruitment specialist. She is the founding partner and communication lead of Clinical Ambassador, iParticipate and CliniVIVRE aimed at expanding minority access and broadening diversity in clinical research across stakeholders. She has held a variety of positions in the private, public, and non-profit sectors that span public relations, freelance writing, marketing, patient education and public health, and worked in multiple laboratories as an undergraduate research fellow. She was ultimately compelled by the vast creative opportunities to address disparities in innovative, meaningful ways. With a mission to impact health equity, enhance transparency, bridge cultural divides, and break the engagement stalemate in clinical studies, Ms. Kalloo now leads a team to deliver culturally relevant, patient-centric solutions to make sense of science, support study participation from front to back, and sample the candid opinions of real patients and the research-naïve lay public. Her agency also works with industry to support their clinical sites and enhance protocol integrity from the patient point-of-view. She is now one of newest members of the Medable PAC (Patient Advisory Council). Ms. Kalloo is a graduate of The Madeira School, North Carolina Central University, and Yale School of Public Health. She can be reached at akalloo@clinicalambassador.com and followed on LinkedIn, Twitter, Instagram and Facebook.

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