We’ve come this far by faith.

Leaning on The Lord.

Trusting in His holy word.

He’s never failed me yet.

Song - “We’ve Come This Far by Faith by Reverend Milton Biggham

 

I have spent many hours of my life in different churches listening to people testify about being thankful to be in the number one more time, telling the tales of tests and triumphs while singing victoriously about how their souls look back and wonder how they got over. My generation is different. We sat in church recognizing the reverence of the altars, but went home and built our own. We are the generation that learned the hymns that the slaves would have been whipped for singing yet helped Kirk Franklin rise on the charts because - when we thought of the goodness of our Higher Power - it made us want to stomp. We understood things that so often seemed to be lost on others in the sanctuary. I am of the age group that has realized and announced that church is more than four walls. We recognize our bodies as temples - not in a way that tells us to refrain from piercings, tattoos, and sex - but in a way that says that temples deserve to be decorated and worshiped. We see the beauty in both the wooden church pew and the stained glass window. We are a crew of “Christians” whose efforts to do the work of the Lord looks like mutual aid groups, community service projects, and practicing a form of activism that evokes trepidation and discouragement from the folks that raised us. Again, my generation is different. A different type of Christian, a liberated kind of believer. Coming into our own as part of a collective that sees church within bodies, who finds holiness in nature, and whose forms of communion and sacrifice are not reserved for First Sundays. 

 

Sacrifice. My generation has learned to sacrifice relationships, jobs, and familial connections in an effort to embrace healing and authenticity. We are a generation that is learning to reject urgency culture, to bask in ease and softness, and to remove the cloak of superhuman strength and invincibility that has been assigned to our people for years. Though many of us have not yet mastered navigating what healing is to and for us, we are making efforts to do so that often take us beyond the confines of the traditional church walls. We are no longer keeping silent about what ails us. That includes the systems that continue to perpetuate harm against us, especially when we are at our most vulnerable. 

 

For most of us, when we are not feeling well, we find ourselves to be more vulnerable and - unfortunately - more susceptible to harm. Women of Color, in particular, recognize that - when we seek out medical attention - we are potentially going to encounter people who have decided that we have an abnormally high pain tolerance and that our pronouncements of pain are not to be wholly believed or trusted. Yet they expect us to trust the advice that we are given and to take the prescriptions that we are offered. Too often we find ourselves unwell and lost in a system where we are dismissed, misdiagnosed, and/or disrespected after having been silently struggling with our illness for days, weeks, or years. We rarely have the luxury of seeking treatment when our body’s whispers of pain begin. There is also our collective trauma and hesitancy in navigating medical spaces with physicians who do not believe us, who overlook us, or who focus on what feels like minor distractions when our concerns are far deeper. Many of us have left doctors’ offices in tears because there were no answers, because we did not feel heard or respected, and/or because we were offered no actual solution to address the very real medical concerns that physicians sometimes disregard.

 

When the match is first lit, we are usually too busy, stretched too thin, and left telling our bodies the same thing that capitalism tells us: There is no time to be sick. By the time we seek treatment, the whispers are screams and the match has led to a five-alarm fire… and some physicians expect us to be thankful for a 15-minute appointment that will cost $50.00+. What if the fire department left a blazing house fire after 15 minutes and only left the homeowners with a bucket of water?

 

With all of this in mind, you can imagine the many thoughts I had about my faith, about the medical system, and about my own personal strength when I truly came to terms with the fact that I was not well.

 

For most of my childhood, any medical issue that I had was attributed to my weight. While being overweight is likely to cause health complications, in my opinion, weight loss was a cop-out and an easy recommendation that allowed physicians to dismiss my concerns and make my body the problem. After hearing so many medical recommendations for weight loss, trying various diets, and swinging on the pendulum between living in the gym and living at McDonald’s, I opted for intervention after the sudden and unexpected loss of my father in August of 2019. By December 15, 2020, I was in a hospital room in Cary, North Carolina recovering from what had seemed to be a successful gastric bypass surgery.

 

In the weeks and months following surgery, I was losing weight and appeared to be becoming extremely healthy, but internally I knew something was not right. It started with numbness and tingling in my feet, fatigue from returning to work too soon, and random gastrointestinal issues. I did not go to the doctor immediately, though I did discuss my concerns with Nurses and Nurse Practitioners. Their recommendation was for me to go to my local hospital. Due to my prior experiences with that particular medical provider and my awareness of implicit bias, I hesitated and ultimately did not go. As the numbness and tingling continued to spread and additional symptoms started to show up, I continued to tell my body that I did not have time for this. After a year, my symptoms were impacting my daily living and I had a growing sense of disappointment because - on the other side of weight loss - I was being hindered in living my best life. I could no longer convince myself that I would wake up and my body would be completely healed. Seeing no other method to determine what was going on with my body, I decided to take and to trust the traditional medical route.

 

I started off with baby steps, seeking out advice in casual conversations with my OB/GYN and my Primary Care Physician because they are Black women, because we had existing relationships, and because there is a trust that exists between Women of Color behind the closed door of an examination room. From there I went on tour to see a variety of specialists, had a ridiculous number of tests, and spent an absurd amount of money in the name of being cured of what ailed me. I saw Neurology, Urogynecology, Rheumatology, Hematology, Nutrition, and my surgical team. The Neurologist referred me for an electromyography (EMG) evaluation to rule out large fiber neuropathy, tried me on two different medications that made me dizzy and nauseous, and begrudgingly offered me what he considered an unnecessary skin biopsy to confirm his diagnosis of Small Fiber Neuropathy. Guess what we learned? That the numbness and tingling in my feet was not Large Fiber nor Small Fiber Neuropathy. Despite multiple tests showing normal vitamin levels, the Neurologist was determined to label my medical concerns as neuropathy due to a vitamin deficiency and to continue to push pills at me. After the experiences I had with the first two medications, I flat-out declined any similar prescriptions. (Shout out to the Hematologist who called said Neurologist and advocated on my behalf because no test results supported his diagnosis.)

 

I had some particularly awful medical visits. One of the most difficult visits was with a Urogynecologist who seemed to care more about how different I looked from my MyChart profile picture than she did about the spasms and random UTI and bladder infections that I was experiencing. I rarely get emotional, so you can imagine how overwhelmed and lost I must have felt to be on the verge of tears in the office of a specialist who was telling me there was nothing she could do except prescribe a medication that would address one issue but exacerbate others. (I was even more upset when I had to return to the same specialist to be evaluated for Interstitial Cystitis and left with a dismissive diagnosis of Overactive Bladder, the prescription for the medication she had mentioned at prior visits, a bladder diary, and a pamphlet about participating in a research study for her office.)

 

I know what you are wondering: Yes, she is. No, I will not.

 

One of the best and worst things about me is that I do not live in my feelings for long. I am a firm believer in taking action, in finding solutions, and in doing what is necessary to improve a situation. These tendencies make me a great advocate. My advocacy skills have been mentioned in my academic admissions essays and in more job interviews than I can count. I do a really great job of advocating for others. My emotions surrounding this medical circus that had become my life required me to adjust my advocacy lens, forcing me to learn to advocate for myself. 

 

And what does any great advocate need? Evidence to support the outcome that is deserved or desired. I desired healing and I deserved to feel my best. I determined that I had to stop passively googling different symptoms and start Boolean Searching my ass off to find the right words to describe my symptoms and suggestions about what my next steps should be. I created a Google Document that housed pages and pages of notes, links, questions, and referrals to request. It was color coded, highlighted, and detailed. (Note: I am a Leo and a Social Worker with a background in the law. This is the only way I know how to function in a crisis.) If Luke 4:23 was a Google Doc, BAYBEH, this was it.

 

After compiling a list of possible diagnoses and trying to avoid any references to debilitating or incurable diseases, my next step was seeking out specialists that did not require referrals. I began seeing a Chiropractor and a Pelvic Floor Therapist. While they both made diagnoses that we worked to address, my body was still rebelling against me in some very real, very loud, and (what I considered to be) some very embarrassing ways.

 

Based on my research and observations I developed the sneaking suspicion that many (if not all) of my symptoms may have been connected to food. Several specialists dismissed my theory, simply cautioning me not to rely on “Doctor Google.” These dismissals caused all kinds of emotional spirals for me. I had been an emotional eater for years prior to gastric bypass. I thought I had worked through my issues with food, but recognized - as I began snacking and making not-so-great food choices as part of coping with the stress that I was feeling due to my health -  that some things were just habits and that the re-routing of my internal organs had not only decreased how much food my body could hold, but also how many of my feelings I could eat without becoming physically ill. Changing the direction of your gastrointestinal organs does not always change your coping skills. Decreasing the size of your stomach does not decrease the emotional voids that you may be trying to fill in not-so-great ways. This particular realization was triggered during a Reiki Session in 2022 when the practitioner asked me - in the absence of the foods that I could no longer eat - what I was using to comfort and to nourish myself. This question would also lead me to enlist a Therapist to help me with my feelings, coping skills, and boundaries.

 

My sneaking suspicion was confirmed after a bout with food poisoning and an intensifying reaction to gluten/wheat. Enter Gastroenterology, an Allergist, testing for Celiac’s Disease, allergy testing, and the SIBO Breath Test.

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Read Part Two: The Weight We Carry

Read Part Three: Learning How to Breathe

Read Part Four: Having the Last Word

Find additional posts and resources here.