‘What does love look like? It has the hands to help others. It has the feet to hasten to the poor and needy. It has eyes to see misery and want. It has the ears to hear the sighs and sorrows of men …… That is what love looks like.’ - St. Augustine

Sunday, August 09, 2015

What It's Like To Lose Your Mind

I was a precocious child, according to my father; a child with endless questions and observations about the world, and one who would sit for hours devouring books, writing poetry and short stories, -and only drawn away from those things by the compulsion to help someone in need, be it human or animal. My memories of my childhood involve many idyllic hours sitting in my father's office, or by his bedside when he was sick, and just listening to his stories & his philosophizing  - and sucking in his wisdom like air. He would give me books to read - sometimes sparked by something I said, but often even as punishment. 

I remember in vivid detail the day I came home in 7th grade with a C+ on my report card for, of all things, English. My father's fury shook the room, even as he lie there recovering from open heart surgery. He was livid - and not because of the grade itself, but for the neglect it reflected. He demanded I go to a particular bookshelf and get a large, cumbersome hardcover book that seemed bigger than I. It was The History of All The World Religions

"Read that - the whole thing - and be quick about it. You're going to be tested on it when you're done." 

And so I did. At 12 years of age, I sat in my corner bedroom, propped up with pillows, reading a book that could have served as a coffee-table, it was so large. I read about the origins of Christianity; I read about Judaism and Islam; I read about Buddhism and Hinduism, Sikhism and Baha'i, Confucianism and Jainism. Maybe halfway through the book, I actually started reading for the joy of it instead of for fear of further punishment. 

It took me an entire school term to finish that book, and I remember going to my father when I had completed the task and asking for the test, to find he had completely forgotten he had assigned the book in the first place. "Well, good for you for finishing it. Did you learn anything?"  he queried. And  I sat for a few good hours by his bedside, sharing my new passion for religious inquiry.

I share this story because it is one of hundreds just like it that reflect the kind of diligent 'teaching' my father did as I grew up. I lapped up every last lesson he offered in the years I got to spend with him; I was so hungry for knowledge, I would sometimes even fake being sick so I could stay home and learn by his bedside those years. We both shared an unrivaled passion for words, too, and my father would constantly hound me to memorize the dictionary, as an older neighbor-girl had one summer. I tried, unsuccessfully, but until Lyme came along, I had quite a  hefty bit of the "T" section of Webster's Dictionary committed to memory still, since I had chosen to start (and end) there.

All these things are lost to me now. I cannot remember what month or year it is most days, nevermind the exact definition of any word. I can't recall peoples' names - even those I've known for years. My memory and intellect slips in and out like a stealthy pickpocket, robbing me of the treasures I most love. One day I can list off Shakespeare's plays in chronological order, the next I cannot even tell you my own phone number. That is the horror of Lyme.

I miss the old me. I miss being a fount of Shakespeare wisdom, I miss witty banter with friends, I miss reciting poetry to myself on my walks, I miss fascinating discussions with great minds. I can't do it anymore - my mind has been hijacked and no ransom of drugs or treatments seem to win it back.

I know some reading this might think 'but she sounds so normal - she doesn't sound incapacitated at all.' Sure - I can hide much of that from you because you are not in my physical presence. You do not have to suffer through the hours it now takes me to write something like this. You can't be here to see the struggle to even finish a sentence. In real life I have recently developed a stutter. so I hide in my house on those days. I am transposing words at the speed of light, and although it was funny for awhile, it is anything but funny to me now. I have resorted to calling both my girls 'honey' because I so often have days where I forget their names now, or call them something sompletely absurd that starts with the same letter ( like 'Metal' for Matilda or 'Nets' for Nastia, as I did this week.) 

And yet this is only one of a hundred brutal symptoms of this evil disease. There are those that others find more difficult to deal with, but this is the one that is eating away at my small hoard of hope. This is the one that makes me feel cut off from the world, like I don't matter, like I am no longer me.


  1. I hope you feel better soon!

  2. (((((hug)))))

    so, so sorry.

    I really enjoyed hearing your story about your dad and the world religions book, though!

  3. I've been reading your blog for years and have always admired your ability to express your thoughts. I am so sorry you are going through such a horrible time. I am begging you, if you haven't tried already, doTERRA essential oils. They are truly amazing and I know it would help your symptoms. Google "doTERRA Lyme disease" and I know you'll find some help.

  4. Praying for a miracle. :(

  5. so glad to see your blog is public again..and so sorry to hear about all your struggles. i wish i had practical help to offer… we are very mobile...


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