By: Kymberly Amara
The numbers are grim when looking at the data regarding Black women and health outcomes. It’s no wonder there has been increased criticism of the healthcare system and calls for Black women to advocate more for their own health. The research is clear. Black women are more likely to be dismissed and mistreated, resulting in higher mortality rates, delayed diagnosis, and an unfavorable prognosis across the board. Despite these profound healthcare disparities, Camille Jackson is choosing to share her story to help empower Black women to better advocate for themselves. Heart&Soul recently spoke with Jackson to share her story and how she continues to manage her new normal amid uncertainty.
Everything changed for Jackson when she had a freak household accident that caused a traumatic brain injury while reaching for something in her bathroom. Jackson recalls the fateful day that has since changed her life forever. “I was in the bathroom doing my hair, and there was a glass medicine cabinet that was open. I was reaching for stuff, and my dog came in and brushed in front of me. I bent over to pet him, and when I raised my head, I hit the glass medicine cabinet, which slashed my scalp.” Jackson was at home alone at the time she sustained her injury. She says that despite blood being everywhere, the only thing she felt was the impact itself but no actual pain. Jackson didn’t feel like it was an emergency, so she went to urgent care. The doctor stitched up Jackson, and while he was concerned about the amount of blood she had lost, he never questioned her about how she felt to determine if she had sustained a concussion. And while Jackson didn’t present with symptoms of someone who had a concussion, the doctor failed to assess her further and ask those pertinent questions that possibly contributed to her long journey in getting an accurate diagnosis.
About 18 months later, “all hell broke loose.” Jackson said, “I started getting these dizzy spells that came out of nowhere. You hear about people with vertigo that [feel like] the room is spinning around; I didn’t have that kind of dizziness. I had severe drunkenness like I was in a bar or if you’ve ever been in a carnival fun house or roller coaster. I had that kind of feeling, and it was episodic. I would be driving, and I’d park my car, and then I’d go into the store, and all of a sudden, while in the store, I couldn’t focus, and when I would go back out to try and get back in my car to go home and I couldn’t get home.” Jackson’s symptoms were intermittent at first. Things got worse one day while trying to back out of a parking space. After turning her head forward, she felt like everything was shaking, her eyes were jumping around, and she felt nauseous. Believing she was having a stroke, she finally called 9-1-1. After being examined, she was all clear and discharged home. Unfortunately, Jackson’s intermittent symptoms progressed to where she experienced episodic dizziness daily.
By this time, Jackson began seeing a doctor to find out what was happening with her. After multiple brain scans and other tests, she still didn’t have a diagnosis, and her doctors began assessing her for lupus after her blood work showed that she had the disease markers. Jackson says that they discussed her possibly having lupus for quite some time. They eventually ruled lupus out, but then Jackson began thinking she had multiple sclerosis, and eventually, her doctors began evaluating her mental state, believing that her symptoms were psychosomatic. After enduring uncomfortable conversations about her past grief and anxieties, Jackson still didn’t have a diagnosis. Doctors even suggested that she might be experiencing a bad migraine. With no diagnosis, Jackson began looking into organizations that dealt with head injuries, brain injuries, and other head trauma. She stumbled across the Neuro-optometric Rehab Association and contacted one of the doctors, Dr. Jacqueline Doerr, MD, on their referral list who worked for Kaiser at the time. After undergoing a rather hectic eye exam, she completed a series of tests and finally got an accurate diagnosis. Jackson shares this is where she also learned the difference between eyesight and vision, “Vision is how your brain processes the information that comes in through your eyes, and based on my exam, she told me I had post-concussion syndrome.” Jackson had never been diagnosed with a concussion despite her many doctor visits. Still, her doctor advised her that she had a concussion that didn’t heal correctly and had also developed a vestibular, oculomotor dysfunction that resulted in her brain, not processing motion. She scheduled her to have an MRI. The entire process took almost four years before Jackson finally received a diagnosis.
Before receiving her life-changing diagnosis, Jackson had a very successful career as an attorney and an award-winning foreign policy professional. She worked in diplomacy for almost ten years traveling to 20+ countries for international meetings and projects with embassies. Her diagnosis has since left her unable to read and mainly function on her own. That’s a drastic change for a woman with three degrees who passed the bar exam. The debilitating and persistent dizzy spells that she was experiencing are medically defined as post-concussion syndrome, vestibular-oculomotor dysfunction; persistent postural perceptual dizziness (PPPD); abnormal spatial orientation, and binocular vision dysfunction. She cannot drive due to multiple risks of her becoming car sick. She is unable to work due to her limited ability to use screens. Jackson also has memory issues and feels nauseous if she tries to read word for word because her brain always thinks she’s in motion. Jackson’s body is entirely out of sync as her vestibular, ocular, nervous, and somatic functions are misfiring and not working together, subjecting her to dizzy spells that can last for upwards of a week straight. She’s developed a sensitivity to light and loud sounds.
Today, Jackson relies on a combination of willpower and therapy that she says has given her some semblance of order in her life by helping strengthen her gaze and eye movement. She must also take medication to help suppress her nervous system because it is over-stimulated, and she sometimes relies on a cane to walk. Jackson wears an eye patch and glasses and plugs her ears to filter out the excess noise and movement from being in a public environment. Jackson recently got on a plane for the first time in almost eight years to celebrate her 50th birthday.
For almost four years, Jackson endured symptoms that many would think should have been caught sooner but were not. Today, her future remains uncertain, and she must grapple with her new lifestyle as she attempts to reconcile it with her former self. She deems this as an “ego trip.” “I’m in this cohort of people who went to school, are highly educated, and we’re trying to get the good jobs and got the degrees. Everybody in my cohort and age group [now] are VPs, Secretaries, Presidents, or CEOs, and I’m sitting here like I can’t do jack.” Jackson shares that she is still trying to make sense of it all and often questions what this was all for and has gone through the gamut of emotions as she continues to navigate her new life. “My future prognosis is unknown. I think I’m better for having gone through some therapy, but I’m not done, and still, every day, I have some level of dizziness, which varies in intensity.”
Now, the question becomes, what does one do when you can no longer exist in a space you’ve occupied for so long? With so much focus on self-care and living life to the fullest, it can be challenging to accept life-altering events that permanently change our discourse. Like Jackson, many women have encountered circumstances that instantly changed them forever. And while loss is inevitable and something that we must all deal with at some point in our lives, perhaps one of the most challenging things is accepting the deficits you now possess and adjusting to a new normal while still grieving one’s former life. Jackson incorporates prayer, has taken a life of minimalism, and is much more focused on doing what’s best for her. To stay calm, she avoids specific triggers like logging onto LinkedIn to avoid thinking about the shoulda’ coulda,’ woulda’s, and she’s also learned how to celebrate the small achievements in her life.
While the road has been tough, Jackson understands that she must find a way to deal with her “ego trip,” especially coming from a high-powered background and residing in a place like Washington D.C., where all people do is compare resumes. She hopes to empower Black women by sharing her story, so others don’t suffer and go through what she did. Jackson also wants to encourage women to be more aggressive when covering healthcare costs as she is currently battling her insurance company for reimbursement for her brain/vision therapy, which has helped her tremendously but is very costly at $150 per session for six days a week. She attended these sessions for about seven months. Despite the losses that she’s undergone, whether it is financial or social, and the countless functional limitations, Jackson is committed to finding new opportunities. She currently volunteers with the Vestibular Disorders Association and is looking forward to sharing her story with Dr. Bryce, O.D., a Neuro optometrist, and Concussion expert.