‘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.

Thursday, August 06, 2015

A Thimbleful of Hope

Because Lyme and the co-infections I have are primarily wreaking havoc in my brain, it is doubly hard to write and form sentences at times. Even that last sentence - It had 7 typos in it and word order problems and I had to rewrite it several times, and take a break mid-sentence due to the damn vertigo. I used to write my blog posts in one fell swoop - barely editing them, and rushing to get the words out as fast as my mind thought them. Not anymore. This is the symptom that most devastates me. I will never accept it or give up trying to fix it.  The vertigo is so bad some stretches that I must crawl on all fours to reach my own bathroom, and yet I would rather have vertigo for the rest of my life if I could just have my brain back.

Aside from that, my greatest sorrow is the loss of my ability to help others. Gone are the days of sending packages to the orphanage, starting fundraising campaigns, making treks to Russia. I have yet to even meet my beautiful granddaughter Sasha (Anya's daughter) because the dr said a trip, and to Russia no less, would set me back months in terms of healing.  I'm sure my posts will be all over the place, because that is the brain I live with now. There is no way to focus my thoughts anymore, and my memory is long gone. I used to have most of Shakespeare's plays memorized - the first word to the last. Now I cannot recall a line of Shakespeare unless someone prompts me with the first few words of it.

And yet on good days, I can seem relatively normal. On good days, I get my words back (a few), I get my ability to walk normally back. ON good days I don't stutter, transpose words. On good days I don't have too crawl to the bathroom or hold the walls as I walk. On good days, there is no facial paralysis, no clawed hand that looks like I had a stroke. On good days I don't hallucinate from petit mal seizures. All of this may sound outrageous, but it's all exactly what I am living with. And it is hell and I hate it.

Even on the good days, however, I deal with enough frustrating and painful symptoms to make a grown man cry: tingling, shock-like and burning sensations that travel to different areas of my body, horrible joint pain, dizziness, memory loss, patches of numbness on my legs and face and arms,  severe heat sensitivity,vision problems,hair loss, sound and light sensitivity,  and exhaustion on the level on a mono infection. And yet none of that shows on the outside, so people often do not 'get' that I am sick, and that poses another huge set of problems.

[Right in the middle of that paragraph I had to stop for 20 minutes, because my hand seized (looks like a seizure, but just in my hand) It cramped up so tightly it hurt terribly - like a really bad charlie horse.]

Btu, believe it or not, i don't want to just vent about my woes here. I do want to share about them to inform people and also take some weight off my shoulders, but I also want to speak more broadly about Lyme as a disease and how it is treated in this country. I want to speak about the loss of people you thought were friends when you have a chronic illness. I want to talk about the guilt at having to watch your kids deal with it. And, on a good day, I want to take about possible gifts in all this. I'm not seeing them today, but I know they must be there.

Need to go back to bed now. That's another crappy part about Lyme - the need to sleep 16-22 hours a day. For a typically 'go-go-go' person like me, its just torture. I feel like the world is racing by me, and I can't go along for the ride.

If you are reading this and have Lyme, please comment. It's good to know we're not alone. We need to grasp hope wherever we can, even if it's just a thimbleful.

Spirochetes - the enemy that invaded my brain and body.

Tuesday, August 04, 2015

'She's limed, I warrant you.' ~ Shakespeare

I have been remiss. I stopped writing. Well, I stopped a great many other things, too. When you are in pain every day, and when even your own brain won't work with you, it's hard to do much of anything.

But I'm back. A shadow of my former self, but still a soul wanting to connect with the world and share her story.  This won't be the same blog anymore. In fact, I'm pretty sure all my former readers have up and moved away months ago. I can't imagine many will want to read what I have to write for the next few months, but I need to say it - regardless of recipients on the other end. If i'm going to survive this disease, I need to WRITE. Writing has always been my solace, but I stopped doing it because I was ashamed of how damaged my brain was. I didnt want to sound stupid or senile. Well, I honestly don't give a crap anymore - so I am writing for whomever out there decides to listen.

I have Lyme Disease.

Those words might not adequately explain for you the trainwreck that I experience every day, but ah well. I have had Lyme Disease for several years, most likely. But it has progressed to a point where some days I cannot walk, nevermind drive. Some days I cannot find my way from one room to another. I am a SHELL of who I was. Am I angry? Sad? Rageful? Guilt-ridden? Horrified? Lost? Yes, ALL of these.

I have so much to say about this disease and the havoc it has wreaked on my body and my brain, and my family, but it will take time to share it all. Even know, though I want to write, my hand is seizing and making it difficult to type. I think this is all I can type for today - but I will be back.

PS: With this disease comes horrible cognitive disfunction. I could waste my time spell-checking, but I'm not going to. There may be many typos and missed words to come, but it is not a reflection on my innate intelligence - it is a reflection of the damn disease that has ravaged my brain. Please be understanding, and kind.