Chronic Illness

When Doctors Couldn’t Help Me, I Saved Myself

Doctors couldn't explain Coshandra Dillard's sudden seizure, but a lifetime of health literacy helped her heal herself.

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That March evening, in the East Texas household where I am a single parent to three boys, started falling apart this way: I’m enthralled in a phone conversation with a colleague, when, without warning–blam!–my whole body starts to convulse. My eyes roll back inside my head. I am having a seizure.

Minutes later, I am sitting upright on my couch in a post-seizure daze. Why are these uniformed men standing by my front door? Who is this strange man crouching over me, looking hard into my eyes? It’s my neighbor, as it turns out, and he has already called the ambulance.

I’m at the beginning of an assault on my body that continues for three months, and which remains unexplained, even to this day. 

My Unexplained Illness

In the days and weeks following the seizure, I think I am dying. I develop excruciating, dizzying migraines. To distract myself from that steady pain, I watch TV in the dark, wearing my off-brand Mary J. Blige-esque shades; I’m that sensitive to even glimmers of light. I cringe at the sound of a refrigerator door closing or feet shuffling because it felt as though those sounds were hammering  the nerves in my head. I eventually lose sight in one eye. I’m not eating.

During those months, I endure three week-long hospital stays. This is where it gets interesting. There are brain lesions. Doctors suspect an autoimmune disorder, but rule out multiple sclerosis and lupus.  An infection? Cancer? Tests indicate neither. My neurologist is almost sure it’s neurosarcoidosis, a severe and life-threatening disorder that affects the nervous system. But more tests show that’s not the case either.  

During the worst of her illness, the author didn’t even know if she’d live to see her son graduate.

I’m taking high doses of prednisone–a steroid doctors use to calm inflammation and/or when they don’t know what else to do. I spend hours Googling the potential side effects of this drug, terrified by the possibility of the onset of diabetes, immune system suppression and weight gain, among others.

By June, though, the migraines finally subside. My sight seems fully restored and just in time to see my son graduate. But I’m still extremely exhausted and weak.  

At some point during this extended episode of not knowing, I began to open up to, if not welcome, death. I am in pain. I am tired. Tired from being poked and prodded throughout that spring season. My claustrophobic self endures multiple MRIs and CT scans, and a couple of traumatizing spinal taps.

Much of the time, my nursing care in the hospital is subpar. A serious miscommunication nearly results in kidney failure. I was given metformin–a drug used to prevent a spike in blood sugar that can occur when taking prednisone–following an MRI that include a contrast agent injected into my veins. They were supposed to wait 48 hours before giving this drug again because of that interaction risk.  And one night, I was almost given a drug I’d already taken.  

The Importance Of Health Literacy

I spent eight years as a journalist on the health beat, so I understand doctor-speak. I subconsciously use my interview and research skills to ask educated questions and make recommendations for my own health care.  So I survived the hospital.

Unfortunately, this is not the case for everyone. Many Americans aren’t able to discern when something is amiss, which questions to ask or how to participate in decisions about their treatment. According to the National Assessment of Health Literacy, only 12 percent of adults are health literate. That is, the majority of us don’t know how to manage our health or absorb the information needed to make decisions about health care. There are several reasons for this lack of health literacy, including cultural factors, socioeconomic status and education.

The majority of us don’t know how to manage our health or absorb the information needed to make decisions about health care.

I don’t know it all, so I put forth an effort in life, and as journalist, to take charge of my health. I want to believe that being health literate also saved my mother’s life a few years ago. While hospitalized for pancreatitis, her nursing staff and doctor overlooked a pulmonary condition that could have been fatal. By the time they finally gave her an x-ray, to my urging, she was in serious enough condition to be placed in the intensive care unit. If I hadn’t said anything, I wonder if she’d died from pulmonary edema–an excess of fluid in the lungs.

Just this past week, my mother was rushed to the hospital again. This time for a suspected heart attack. While she brought a list of medications and doctor’s summary from her last primary visit, she left out key medical history details that a cardiologist was grateful to hear from me in order to better assess her situation.

We have to be informed, and share with doctors what we know.

And when the doctors don’t know? We have to do our best to figure it out for ourselves.

Escaping The Stress That Was Killing Me

Doctors still don’t know what was wrong with me. I’m now on the other side of my health crisis, but I’ve written enough stories to have a theory: I’m convinced that it was stress. Namely, the daily stress of single-parenting on the brink of poverty, coupled with a nerve-wracking job at a daily newspaper, made me susceptible to a physical breakdown of my body.  

Stress can kill. Again, I’ve written enough stories about stress to have known this, but it took a serious breakdown of my body–and my spirit–to take heed.

It was a blessing in disguise, though. I built an emotional and mental fortitude I never knew I had. I start to fight back. I learned about things I reasonably can do to avoid future attacks on my body. This meant taking inventory of my stress.

Stress can kill… but it took a serious breakdown of my body–and my spirit–to take heed.

I refused to hold onto anything that didn’t serve me well. If it stresses or frustrates me, it goes on the chopping block. Instead of complaining or holding grudges, I needed to learn to let go.

From there, I found a path that allowed me to leave the job I hated. To de-stress, I worked on deep-breathing rituals. I started eating a plant-based diet. I exercised. I got plenty of rest. I tried to open my mind to things outside of my comfort zone and aspire to be kinder. 

The author today, feeling healthy.

So far, I’ve lost about 20 pounds, shedding some during my illness. I’ve since gained muscle, flexibility, and healthy sleeping habits. I count this new lifestyle as a big feat.

As an experienced journalist, I’m taking on non-news clients who like the content I produce. I am pursuing my dreams as a freelance writer and magazine publisher. I’m doing what I love.

I‘m at peace about this new grind of mine–peace of mind I never had before I decided to take a leap to save my health. 

My small army of physicians has yet to figure out why my body turned against itself. It’s a mystery, they say. “Let’s just watch and see,” says my neurologist, otherwise granting me a clean bill of health.

But I’m not going to wait and see. I won’t let “what ifs”  keep me from reveling in my everyday blessings, in the little things: Walks through my city’s walking trail; reconnecting with old friends; having zany, brainy conversations; my sweet Shih Tzu; and, more than anything, time spent with my sons.

I live life as if it could be gone tomorrow. Because tomorrow is not promised. All we have is today. 


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