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. One who would sit for hours on end devouring books, writing poetry -- and only drawn away from those things by the compulsion to help someone or something in need. 

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 inhaling 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 seventh  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.

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 during those years. We both shared an unrivaled passion for words, 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 still 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 perfectly 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.

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.

'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 will not, cannot, adequately explain for you the train wreck 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.

When No One Answers

Reposting something I wrote years ago, in honor of National Adoption Month:

I've been trying to reach the orphanage via phone for days. It's either a busy signal or incessant ringing that I get in response. The frustration of reaching out and reaching out and getting no one at the other end makes me feel hopeless. And then I realize, this is what these kids in the orphanage feel every single day of their lives. They spend their whole childhoods hoping someone will answer the call of their heart, and nearly one hundred percent of the time, no one does.

No one.

Imagine wanting something as simple as someone answering your phone call. Imagine trying to reach that person for days on end with no result. Frustration sets in. Maybe anger. Sometimes that nagging feeling that the world is against you. Know that feeling? We all have experienced it at one time or another, right?

Now imagine wanting someone just to love you. Wanting someone to care enough to choose YOU. Reaching out with your heart in prayer night after night, like my daughter did, asking for God to bring you a mom or a dad.

No one answers.

The line is busy or it simply rings incessantly for years on end. People are too busy to answer you call, or too scared, or too distracted, or too caught up with their own lives, or………..something.

Tonight when I made my thirtieth attempt to reach the orphanage by phone, I was flooded with a sense of what these kids feel every day of their lives. The helplessness. The hopelessness. The deep and utterly inescapable knowing that you are forgotten. Invisible. Unloved.

My prayer this day is that more of you who have considered adoption pick up the phone. Say yes. Go out on a limb. Be brave. Say to one of them,

'I choose YOU.'

I'm not Quitting, I'm Just Quiet

My girls, swinging.

I want to write, folks, I really do. But for the past year, really, I've felt such a draw inward, it's hard to push against that and write down what doesn't want to come out at all. Have you ever experienced seasons of life like that? Even defining it is difficult, but I guess the best way is to say I feel like I've transformed from an extrovert to an introvert. I don't find joy in the same things anymore. I don't like being out in public much and would much rather read for hours or meditate and pray or - no lie - do dishes than go be among people or be social in any way or form. And it's not that I'm depressed - I certainly know what that feels like. It's just an overwhelming desire to go inward, to be silent and listen, and to observe. I think I've visited this season before in my life, but never with this intensity.

But -I have immense guilt when I go long periods without writing here. I feel a responsibility to stay in communication with those who have read my blog, some for many years. These are the same people who supported me when we took that leap of faith in 2010 and moved to Russia for several months to care for Anya. Many of you wrote me beautiful, heartfelt and helpful letters when my adoption of Daniel failed. Others cheered me on throughout hosting Dasha, adopting Matilda, or a million other things I've tried to get through in one piece. I could never communicate the depth of my gratitude - I really don't think it's possible at all.

So I'm trying to understand my own self these days - a self that used to crave  sharing here; a self that was passionate about writing; a self that was very outwardly focused. That's not me anymore. I struggle to find words that define what I'm feeling. I used to sit at my computer and find that I couldn't type fast enough for the words that wanted to come out. Now I can't find words at all, and expressing myself here feels awkward and, even, painful.

I'm not quitting. This isn't a goodbye post. But I felt like I owed people reading here an explanation. I still do the same things: parent Nastia and Matilda, support as many of the girls in Russia as I can, teach Shakespeare, pray and talk to God incessantly, and try to be a better human being each day. But whereas before these things felt like fodder for blog posts, now they don't. Maybe it's writer's block, but I don't think so. I just think my soul has decided to close ranks and be still. My soul is having 'down-time' and wanting nothing more than stillness, simplicity - and authentic communion with God and others through that stillness. Does that make any sense?

I hope so.


I'll keep stopping in a posting little updates, because that's only fair. I know I'm fairly devastated when my favorite bloggers are silent for even a few days. I'll do my best - but it won't be half as passionate or interesting as it used to be. At least not right now.

I hope that's okay with you, reader.

Taking First Steps

credit: Tiny House Listings

I have dreamt of downsizing into a tiny house for at least a decade, if not longer. I am on email lists for every tiny house company out there: this one,and this one and this one, to name a few) and I scour pinterest and bookshops for every resource on tiny houses I can find. I've worked on downsizing for years, but mostly with an eye towards getting rid of clutter - not with the intention to truly clear everything out. But this change keeps calling me.  There is not one reason that feeds this decision, but there are a few primary factors:

1. I hate/despise/loathe our materialistic, hoarding, junk-accumulating society. I am depressed every day by the waste. It hurts my heart. I don't like the message it sends my kids either - that anything should be just tossed aside for the newer, brighter version, that clothes must stay 'up to date' for one to fit in, so one must buy. buy and buy more every season. Ugh.

2. The disparity between the haves and have nots in the world is a constant ache in my heart, and I am part of the problem if I'm not trying to be part of the solution. I want my life to be a reflection of my deepest convictions and beliefs, and it is not right now.

credit: Tiny house Listings

3. I want to free up my money, time and resources so that I can better help Anya and the other girls in her shoes throughout the world. A tiny house means less time tending to 'stuff' and more time to pursue worthy endeavors. A tiny house means less money spent over time on SO many things: books, toys, furniture, heating, electricity, clothes, and a million other items and resources. That money saved can help SO MANY PEOPLE!

4. It gets me closer to living a more authentic life - one with an emphasis on people instead of things. A life that forces us outside more. A life that encourages engagement more. A life that requires me to rely on libraries more than bookstores, experiences more than distractions, others rather than self.

So I'm taking a tiny step forward. I signed up for an online course taught by someone involved in the Tiny House Movement. It's a course developed for those of us who want to transition to tiny from a typical home. Its an eight-week guide to downsizing, de-cluttering, and living smaller and with less. I'm very excited about it. My realistic goal is to be moving into a tiny home within 5 years. I wish it were sooner, but I'm trying to be realistic. I need to save quite a but in order to buy one, and that's the biggest hindrance to it happening sooner. I don't have any money to spare, because every extra bit goes to Anya, but I'm hoping to find a way to sell much of what I have, and put all that money towards our tiny house fund.

Credit: Hornsby Island Caravans

And Matilda is beside herself with excitement - don't worry about her. She has known about my dream of tiny house living since she first hosted with us, and she is ALL on board. She has even drawn tiny plans for our house and has dreams of having more time free to travel, since we now have family all over the world!

I'll keep you posted on what I'm learning as the course progresses. And by all means, if you know any tiny-housers, or if you are looking to down-sizing too, let me know in the comments.

DREAM HOME.  Credit: naturalhomes.org

The Requested Update!

You know when thing are good and you don't want to jinx it? That's the story with the long absence here. I'm finding life so enjoyable right now, it's hard to find a reason to spend any time on the computer, let alone type a whole blog post. But I know how anxious I get when one of my favorite bloggers doesn't post in a long while, and how delighted I am when they do post - so I'm humoring the handful of you that still read this blog and filling you in.

Nastia with her Aunt 'M' last week.

Nastia is doing so well I'm almost afraid to write about it. She is loving college and thriving there. I never would have imagined it in my wildest of dreams. She has eight (yes, eight) roommates in a very large apartment in the top floor an old Victorian house. There are two other girls in her room, and then three other bedrooms. It's a mix of upper and lowerclassmen, which is ideal. They have to cook their own food, as there is no campus cafeteria, and Nast is quick becoming the resident chef. The homework is a bit overwhelming for her, but she is reaching out for help there, and she is doing so well in her art classes that she is thus far getting As and high Bs on everything! She just got her braces off this week, so she is really starting to look (and feel) like an adult, and she is acting like one, too! She hasn't missed one class in 5 weeks, and she is really managing her time well for homework, etc. I couldn't be more proud of her.

Tilly being shy about a photo.

Tilly is also thriving - REALLY thriving. She loves third grade, loves her teacher, loves her new school friends, loves our morning routine and our chatty walk to school each morning. She joined the local soccer team and is learning so much. The assistant coach nicknamed her 'Speedy' the other day, and she was absolutely glowing to hear that. She is very fast! She has also (joy oh joy!) discovered a love of reading, and I have to work hard to keep myself from buying her every chapter book I have ever read as a child. Thank God we are broke from the adoption - we're learning to use the library instead of amazon! She is skyping with her sister every week or so, and her foster mom, too, when the timing works. She celebrated her 10th birthday with 8 little friends sleeping over a few weeks ago. 

I am really, truly enjoying being her mom a great deal. Many of you might remember how difficult my first few years were with Nastia. Her PTSD, trauma history, RAD and autism made parenting her very challenging and I often felt incapable of being the best parent. I tried so hard, I gave it everything I had in me and more - but it was intensely scary and painful. Parenting Tilly is a very different experience. Though I wouldn't trade my experience with Nastia for a million dollars, I am very grateful that this second time around is a little more peaceful. It's just nice to be able to go out and do mother-daughter things so early on - I couldn't really do that with Nast, until she was much older.

As for me personally, my health is not ideal, but I'm learning ever-so-slowly to take better care of myself. I'm trying to make healthier choices more often (like one spoonful of nutella instead of, say, ten…) and I'm learning to slow down. I can no longer work at the pace I used to, but I'm finding ways to make adjustments, and I'm hoping to keep getting better at saying no to anything extra. That's the hardest part of all.

Anya and Sasha

Anya is sadly still struggling with depression, but I'm trying to be more in touch with her. Nastia is finding it hard to balance her worry for her sister with the demands of college, so she is backing off a bit, while I am trying to pick up the slack and be more attentive to Anya and Sasha online.  I wish I stumbled upon some miracle way of getting her here, but it still proves impossible. I also just heard from some people who have been there/done that, that the average wait time for a sibling visa through the US lottery system is over 12 years. so I may be rethinking our plans. Instead of spending so much time and energy trying to get her here, I'm looking into finding a way to more effectively support her there. We still send her a monthly stipend to live on, and I'm trying to be more diligent about care packages. The last two never arrived to her, so I'm trying to find safer ways of getting things to her - I hear DHL is good. If you have ideas, let me know. 

As to the orphanage kids that many of you still pray for - as always there is good news and bad news. Some of the girls that just aged out are already pregnant. Angelina just had a baby, and a few others are due soon. God help them. I'm still trying to keep some of the girls from falling through the cracks by keeping them connected to supporters here in the States. i still have six wonderful online friends sending monthly support to some of the girls there. A few others got tired of the lack of responses from the girls and just stopped sending money. I don't think everyone understands the feeling of hopelessness and self-loathing that accompanies post-orphanage life. two of the girls that stopped receiving support dropped out of school. (But don't worry, I've found someone over there to try and get them back on track.) 

Daniel won a boxing trophy.

Daniel is doing as well as can be expected. We talk online maybe once a month and I have someone bring him $10 a month to buy extra food/treats for himself. He ages out of the orphanage next June. Alot of the kids are now able to access Russian facebook (vkontakte) and post me little messages asking if I have forgotten them, or why no one ever sends letters and socks, etc anymore. I sadly explain that the new director still won't allow it, but assure them they are not forgotten. That's about all I can tell you. Wish there were more...

I'll try to post more regularly, but I honestly am just really enjoying just living our lives right now. I'm sure when winter forces us inside more often, my posts will increase. Love to everyone reading this. Please comment with an update on yourself, if you have time. I'll leave you with my favorite photo of Sasha, whom I still have not met, outside of Skype. But she kisses me through the computer every time we skype, and when Anya asks her 'Where's Baba?" She claps and points at me. Nothing better than that.

Sasha smiling at her visiting Aunt Nastia. August 2014.