In March of 1995, I was a vibrant young 14 year old who ran cross country, competed in martial arts, an active girl scout and was skilled in primitive camping.

Lead up

At age 14 I decided to train and run my first full 26.2 mile marathon with my father. Yet my luck would have it that it was the same year we experienced the worst of weather here in Los Angeles. I ran the marathon continuously for 4 ½ hours drenched from torrential down pouring rain and freezing winds. I already had what I thought was a mild cold and was certain that as I crossed that finish line I would have pneumonia, something I agreed to myself was worth it. But what hit me was much more devastating and life changing. Exposed to all sorts of foreign bodily fluids of over 20,000 people during and after the race, porta potties and water stations proved to be a huge mistake.

Symptoms

About a week after the race and as my muscles healed from the trauma of the marathon, I began having flu symptoms. High fever struck me, body aches, and then profuse vomiting.  Seeing my rapid decline my mother took me to the emergency room where they dismissed my situation as ‘not urgent’ and told us it would be awhile before I was seen. My mother pleaded that something was urgently wrong, noticing that I was becoming more and more discombobulated and weak. I eventually lost consciousness while waiting in the ER to be seen.

What came next was a horror story and the experience of physical, mental and emotional torture. My symptoms intensified. Confusion, mental fog, extreme fatigue, severe headache, non stop cyclical vomiting, unbearable abdominal pain, my throat inflamed now unable to swallow my saliva without intense burning, and excruciating pain with touch that ran through my body like fire when sensory neurons/pathways were glitched (hyperesthesia/allodynia). Even the hospital gown or a gentle touch was too painful to bear. I began slipping into a coma, long periods/ days without consciousness. My personality changed during my time in the hospital, my speech affected (aphasia), and debilitating fatigue.

I would wake in random sporadic moments, days in between, in and out of coma, I would scream from the sudden rush of pain burning my body. Paralyzed and unable to move, attempting to scream through my swollen throat, I was helpless-trapped in my body from my glitching mind with pain. Many times it was a nurse touching me to simply draw blood, or adjust an IV or feed tube, even a gentle breeze from the air conditioning was excruciating.

Eventually after a spinal tap revealed Epstein Bar Virus and Herpes Simplex Virus encephalitis, they sent me home. Just as simple as that. I was discharged without any instructions, they only suggested brain biopsy which my family declined.  My father prepped the house for wheel chair accessibility and made adjustments to the furniture arrangement. He wired my bedroom to have a bell that would ring throughout the house anytime I woke and needed anything, since I could at least manage lifting my finger to hit the button when in a waking state. My family tended to me round the clock, especially my mother. My sister was in her senior year of high school and struggled with what was happening to her little sister.

I had decided mentally to fight back. I rejected the virus and the hospital’s prognoses. I visualized that I would walk and talk again no matter how difficult it would be given I was wheelchair bound and still lost in cognitive confusion. I instructed my parents with my slurred vague speech to not assist me with walking even if I fall and asked mom to give me a pair of her heels, to make the moment even more challenging. Slowly and eventually within days, I was able to take a stand without falling and when I was able to walk and not crawl to the bathroom on my own it was a celebration! One week later I walked for the first time at my classmate’s funeral. I then returned to school the next week, caught up on months of classwork and homework and was promoted to the next grade level. I had to teach myself how to process, retain information and learn again – all alone at 14. The next year, I ran my next 26.2 mile marathon – a form of determined self healing to recover psychologically from the journey endured. I promised my family if it rained, I would not run. I crossed the finish line strong and with the warmth of the sun’s glow.

Today, I still live with the emotional effects of cold hospital treatment, the heartache and feeling of abandonment from not receiving any medical aftercare, memory and learning difficulties and struggle with relationships not understanding my ‘silent’ life condition because ‘I look just fine’ – yet I give myself grace and continue to educate myself about encephalitis and heal through it. Now at 45, I recently wrote my memoir called, Life Stories Of A Modern Kushite Mystic to prove to myself despite what challenges I have that others do not see, I can do whatever I put my mind to and to know my journey is mine. I hope in sharing my story, you find additional strength and be encouraged to maintain the will to fight.

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Story published November 2025