Play & Book Excerpts
Because I Deserve It
(Avocet Books)
© Kenitra W. Dominguez
The optometrist told me to see an ophthalmologist immediately and helped me schedule an appointment within a couple of days. After my exam, the ophthalmologist told me that I likely had IIH and handed me some flyers about the condition. Then she said, “Now, I need you to go to the emergency room today.”
That caused a flurry of deep concern. I had so many questions. “Do you think something’s wrong, or do you know? What is actually going on?”
She said she was confident about the IIH diagnosis, but added, “Well, to be frank, we still need to rule out other possibilities, like a brain tumor.”
That stopped me in my tracks. She kept talking but I wasn’t listening. What she was saying seemed impossible. Brain tumor? I don’t have a brain tumor. I feel fine. But she insisted that my diagnosis constituted an emergency because I could lose my vision, and I had to go to the emergency room right away.
I sat in my car and cried, then drove to the hospital, where my husband met me. In the fall of 2021, COVID-19 restrictions were still in place in California hospitals. No one, not even my husband, was permitted to enter the hospital and be with me. For most of the night and early into the morning, I went through test after test, waiting alone in a cold room. I felt very, very alone. At one point, a nurse came in, glanced at my chart, and blurted out, “Oh, someone else came in with the same symptoms a week ago, and they had a brain tumor. But don’t worry, they were able to remove 90 percent of it.”
Seriously? As if my night couldn’t get worse.
Actually, it could. To get an MRI done I had to walk outside to another building. The technician who walked me said, “It’s nice to talk to someone who isn’t on drugs or belligerent,” which offended me. Everyone around me in the waiting room was a person of color. I could tell the staff hadn’t expected someone like me. It was clear in the reactions, as if being a clearheaded, educated Black woman didn’t fit the picture they had in mind. That realization stung. It didn’t matter what degrees I held or what my socioeconomic status was. No one at the hospital asked for my resume. I was just another Black woman who had shown up in the ER, and I could feel how quickly assumptions were made. Once I began speaking and people heard how I communicated, some of those assumptions seemed to shift. But that thought stayed with me. What if I hadn’t been able to speak for myself? What if I had been unconscious or too overwhelmed to advocate? I knew exactly how I might have been treated.
The technician’s comment stoked my preexisting fears about not being seen for who I was, not being understood or taken seriously, and that’s exactly what happened next. The ophthalmologist had insisted that my MRI be done both with and without contrast dye, which can help detect abnormalities like inflammation, tumors, or increased pressure more clearly. The neurologist who was on duty did not think it was necessary. I insisted the contrast dye had been ordered. I pressed them to call the ophthalmologist—I remembered she was on call—and they eventually did. She confirmed exactly what I said. I had to go through the same scan three times before they got it right. Why does getting the right care have to be this difficult? Why? Why does this have to be so hard?
As I waited between tests, I frantically researched on my phone what each test was for and what it might reveal. Are they the right ones? Are they doing them the right way? What if they still can’t figure out what is wrong with me?
The last straw came when a doctor told me he wanted to conduct a lumbar puncture. This procedure, which can be both painful and dangerous, involves inserting an eighteen-gauge needle into your lumbar spine and withdrawing a substantial amount of cerebrospinal fluid. I said I had to have my husband with me when I went through the procedure. The doctor told me that I could not, because of COVID restrictions. We got into a battle of wills. I told them I would not authorize the lumbar puncture without my husband present. They said they couldn’t discharge me unless I agreed to the procedure. I said I would do the procedure the next day as an outpatient, and they said they couldn’t release me from the hospital until I completed the test. This went on for three hours until a new doctor came in and said, “It sounds like the problem is you want your husband to be here.”
Exactly. But I was thinking, Seriously? Why do I have to fight so hard for what I need? I didn’t fully grasp that I was at the beginning of a journey that would require me, time and again, to fight for what I needed and what I deserved.
They finally allowed my husband to be present, which turned out to be a good thing. During the procedure, I became lightheaded and disoriented, and my body went limp. I would have fallen off the table if he hadn’t been there to catch me. Early in the morning, the hospital released me and told me I could safely drive myself home. That was exactly the wrong advice. After some of my spinal fluid was removed the pressure in my brain had changed, which could have caused real problems. I should not have been allowed to drive. I made it home safely, but I felt awful for days because no one had explained how I should have cared for myself after the procedure.
The whole experience made me angry. Sitting by myself in that cold hospital room, scrolling through articles about IIH on my phone so I could understand enough to protect myself from a possible medical mistake, the frustration kept building. I had every advantage they say should protect you, education, access to resources, familiarity with the healthcare system. None of it changed how I was treated. I was still dismissed, still made to feel invisible. How are other people treated? And why is my care so poor? I thought, I don’t know how to navigate this new ocean, but I am going to learn because nobody facing a chronic condition diagnosis should have to go through this kind of experience or feel as disempowered as I have felt.
I had heard horror stories about what happens inside the healthcare system, but until now, I had never lived through something so overwhelmingly terrible myself. While I didn’t wake up from surgery missing the wrong limb or suffer a life-threatening reaction to someone prescribing the wrong medication, I did get a clear enough taste of the dysfunction within the US healthcare system to know I would have to steer my own ship. I was determined to use that experience to help others.
That caused a flurry of deep concern. I had so many questions. “Do you think something’s wrong, or do you know? What is actually going on?”
She said she was confident about the IIH diagnosis, but added, “Well, to be frank, we still need to rule out other possibilities, like a brain tumor.”
That stopped me in my tracks. She kept talking but I wasn’t listening. What she was saying seemed impossible. Brain tumor? I don’t have a brain tumor. I feel fine. But she insisted that my diagnosis constituted an emergency because I could lose my vision, and I had to go to the emergency room right away.
I sat in my car and cried, then drove to the hospital, where my husband met me. In the fall of 2021, COVID-19 restrictions were still in place in California hospitals. No one, not even my husband, was permitted to enter the hospital and be with me. For most of the night and early into the morning, I went through test after test, waiting alone in a cold room. I felt very, very alone. At one point, a nurse came in, glanced at my chart, and blurted out, “Oh, someone else came in with the same symptoms a week ago, and they had a brain tumor. But don’t worry, they were able to remove 90 percent of it.”
Seriously? As if my night couldn’t get worse.
Actually, it could. To get an MRI done I had to walk outside to another building. The technician who walked me said, “It’s nice to talk to someone who isn’t on drugs or belligerent,” which offended me. Everyone around me in the waiting room was a person of color. I could tell the staff hadn’t expected someone like me. It was clear in the reactions, as if being a clearheaded, educated Black woman didn’t fit the picture they had in mind. That realization stung. It didn’t matter what degrees I held or what my socioeconomic status was. No one at the hospital asked for my resume. I was just another Black woman who had shown up in the ER, and I could feel how quickly assumptions were made. Once I began speaking and people heard how I communicated, some of those assumptions seemed to shift. But that thought stayed with me. What if I hadn’t been able to speak for myself? What if I had been unconscious or too overwhelmed to advocate? I knew exactly how I might have been treated.
The technician’s comment stoked my preexisting fears about not being seen for who I was, not being understood or taken seriously, and that’s exactly what happened next. The ophthalmologist had insisted that my MRI be done both with and without contrast dye, which can help detect abnormalities like inflammation, tumors, or increased pressure more clearly. The neurologist who was on duty did not think it was necessary. I insisted the contrast dye had been ordered. I pressed them to call the ophthalmologist—I remembered she was on call—and they eventually did. She confirmed exactly what I said. I had to go through the same scan three times before they got it right. Why does getting the right care have to be this difficult? Why? Why does this have to be so hard?
As I waited between tests, I frantically researched on my phone what each test was for and what it might reveal. Are they the right ones? Are they doing them the right way? What if they still can’t figure out what is wrong with me?
The last straw came when a doctor told me he wanted to conduct a lumbar puncture. This procedure, which can be both painful and dangerous, involves inserting an eighteen-gauge needle into your lumbar spine and withdrawing a substantial amount of cerebrospinal fluid. I said I had to have my husband with me when I went through the procedure. The doctor told me that I could not, because of COVID restrictions. We got into a battle of wills. I told them I would not authorize the lumbar puncture without my husband present. They said they couldn’t discharge me unless I agreed to the procedure. I said I would do the procedure the next day as an outpatient, and they said they couldn’t release me from the hospital until I completed the test. This went on for three hours until a new doctor came in and said, “It sounds like the problem is you want your husband to be here.”
Exactly. But I was thinking, Seriously? Why do I have to fight so hard for what I need? I didn’t fully grasp that I was at the beginning of a journey that would require me, time and again, to fight for what I needed and what I deserved.
They finally allowed my husband to be present, which turned out to be a good thing. During the procedure, I became lightheaded and disoriented, and my body went limp. I would have fallen off the table if he hadn’t been there to catch me. Early in the morning, the hospital released me and told me I could safely drive myself home. That was exactly the wrong advice. After some of my spinal fluid was removed the pressure in my brain had changed, which could have caused real problems. I should not have been allowed to drive. I made it home safely, but I felt awful for days because no one had explained how I should have cared for myself after the procedure.
The whole experience made me angry. Sitting by myself in that cold hospital room, scrolling through articles about IIH on my phone so I could understand enough to protect myself from a possible medical mistake, the frustration kept building. I had every advantage they say should protect you, education, access to resources, familiarity with the healthcare system. None of it changed how I was treated. I was still dismissed, still made to feel invisible. How are other people treated? And why is my care so poor? I thought, I don’t know how to navigate this new ocean, but I am going to learn because nobody facing a chronic condition diagnosis should have to go through this kind of experience or feel as disempowered as I have felt.
I had heard horror stories about what happens inside the healthcare system, but until now, I had never lived through something so overwhelmingly terrible myself. While I didn’t wake up from surgery missing the wrong limb or suffer a life-threatening reaction to someone prescribing the wrong medication, I did get a clear enough taste of the dysfunction within the US healthcare system to know I would have to steer my own ship. I was determined to use that experience to help others.
|
Kenitra W. Dominguez is the founder of Bay Equity HR, a consulting practice that helps purpose-driven organizations and social impact businesses build equitable, people-centered workplaces. She advises nonprofits and start-ups on leadership transitions, culture strategy, and fair compensation, always centering rights, dignity, respect, and equitable pay. She serves on the Advisory Board of the California Black Women’s Health Project and previously served on the board and executive committee of Workplace Fairness. Her work bridges values-driven leadership, equity-focused systems, and care-based workplace cultures, with a special focus on supporting Black women navigating work and wellness.
Kenitra is a certified mediator, an avid traveler, and a newly certified open-water scuba diver, and she finds healing, joy, and creative inspiration by exploring coastlines, cultures, and quiet places. She holds a master’s in Work Law and Social Justice from UC Law San Francisco (formerly UC Hastings College of the Law). Her work has been featured in The Washington Post, HuffPost, and Teen Vogue. Follow Kenitra on:
|
Kenitra Dominguez
Photo Courtesy: Kenitra Dominguez Find a Q&A with Kenitra in our August Community Compass.
|
