When Lyme Disease Shattered My Vocabulary


We were standing in a queue, waiting to board a plane. People were shuffling around us, different voices chiselling into my ears, hands clutched to my sides.

My sister turned round, “Are you OK?”

“Yes, are we… what…” I stuttered. My sister nodding with patience, “Seats?” she replied. The words barely stumbled out of my mouth. The effort to pronounce each syllable almost too great. And then I realized – I had forgotten the word “seats.”

Lyme disease – noun – an acute inflammatory disease that is caused by a spirochete, transmitted by ticks, that is usually characterized initially by a spreading red annular erythematous skin lesion and by fatigue, fever, and chills, and that if left untreated may later manifest itself in joint pain, arthritis, and cardiac and neurological disorders.

It is also, as many will agree, an incredibly neurologically damaging disease.

When the Lyme bacteria enters the brain, it sparks off inflammation wreaking havoc with a lifetime of neural networks. Its screw-shaped structure is able to move deep inside your most precious organ, hiding and igniting as it goes. Words disappear. Forming sentences is like pulling vocabulary from an ancient language. Meanwhile your general awareness is filled with a thick, heavy and impenetrable fog. But it’s not just your mental abilities that are affected, your entire sense of self. Your happiness and joyfulness, anything that made you, you, is drained away.  You are instead a shell of your former self, a mirage of what you could have been.

Living with brain fog is hard to explain. Weirdly, you become so accustomed to your new way of life. It’s like an old vintage film playing on a loop, right before your eyes, that you forget what it must be like to think clearly. Even explaining to doctors becomes a questionable task as you start to wonder whether those healthy memories ever existed.

Aphasia – noun – inability to understand or produce speech, as a result of brain damage.

When I tried to write, I discovered I could barely string a sentence. My vocabulary had been shattered. I struggled to remember what words looked like, and sometimes what they meant. My speech would reflect this, words muddling and sentences misforming. Reading a book meant living nose deep in a dictionary.

But after years of battling the disease, a diagnosis was finally confirmed, as though I had been handed a second chance at life. Then whilst taking the antibiotics something extraordinary happened. The mist slowly settled and thoughts would form in a logical and sequential way. The lid to my creativity had been lifted and finally ideas started to flow. It was like diving into an ice cold ocean where the visibility was crystal sharp. I could see the waves above and the rocks and creatures below, and I could feel the freedom this knowledge, this clarity would bring.

The dictionary hasn’t left my side, I had to relearn, and regrow. The brain can do that. But this time, I hope, it won’t be lost.

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Thinkstock Image By: Green Apple Studio

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