Preparing For Russia

In two days we leave for 5 weeks abroad - almost a month in Siberia and a week in London so Matilda can spend time with her bio sisters. I wanted to post more about the trip, but Lyme really has wreaked havoc on my cognitive abilities and reading and writing are very slow, laborious tasks now. So bear with me! I also feel a strange shame that my posts are not nearly as well written and interesting as they used to be. Guess that's my Dad  (the writer) in me. I don't want to disappoint my readers!

Since my mind can't really focus as well, my posts may be all over the place - but maybe the act of writing will help organize my thoughts?

I have equal amounts of joy and terror about this trip. Explosive joy due to the fact that I get to spend an extended time with Anya AND meet my granddaughter for the first time! I can't even sleep I am so excited about that. Catching up with all the kids who aged out of the orphanage is another joy I can't describe. There are at least a dozen of them anxiously awaiting my visit and I will do everything I can to see every one of them while I'm there. Finally, seeing my former Shakespeare students will be another great gift - many of them still live in the Kemerovo area, so I cant wait to get coffee with them and catch up on their amazing lives! Most are still in university now.

The terror comes from several sources. First, Lyme and Bartonella can cause panic disorder and increased anxiety - both of which I experience now. Travelling used to be effortless and easy - now it provokes huge anxiety - the flight, the distance from home, the unknowns. if you've known me for more than a few years, you know I am a pretty fearless person. That's not necessarily the case anymore, which makes me sad - but what can I do? Also, most of our pets are very old - as in "I cant believe that cat/that dog is still alive, Keri!" - something I hear often. I wake up in the middle of the night certain my cat Puck (age 20) won't make it till I return. No amount of self talk seems to help. I've just turned into a worrier - and I blame the Lyme.

But regardless, we leave soon and our trip involves seven flights all told. I will just pace myself and sleep whenever my body says I must. There will be no overextending myself anymore - because I can't recover from that. It means weeks in bed if I do. So this is a slow and steady trip. Think turtles and snails. Think icebergs and continents drifting.Think the slow arc of justice. 

Matilda has started a blog for the trip, and you are welcome to follow along. Hers will likely be far more entertaining than mine anyway. You can reach her blog here.

Lastly - yes, you are welcome to help if you feel called to. Several of you have emailed or FB messaged me to ask if you could send a small donation to treat the kids to something.I can't do what I used to do in terms of helping the orphanage kids, bringing them clothes, meds, toys, shoes, funding feasts and field trips - but I can help in small ways - buying essentials for the kids aged 16-19 who aged out and are living on their own. I can likely bring donations to one of the baby orphanages, but that's about it. I no longer even have the account set up for the orphanage since it closed last year, but I am happy to help the aged out kids ( Nastya k, Ksusha N, Natasha C, Ivan L, Daniel S, Sveta, and all the others you might remember.) If you want to treat them to anything, just send your donation via paypal and specify what it is for - or even who it is for in some cases. My paypal is linked to my email: kericahill34(@)gmail (dot)com. This is only for those who have asked for a way to help. I am not in need of any funds - but I am happy to reach out to any of the kids on your behalf.

I will try my best to post daily starting on May 8th. I hope you enjoy our travels as much as we hope to!

The beautiful Tom River in Kemerovo - can't wait to see it in person again!

All Moved In!

Although Anya finally won her court fight for a government issued apartment over a year ago, it was only this week that she finally moved in! She was given the keys to the apartment in late October, but it was literally just an empty room with no furniture - no stove, no fridge, no curtains or flooring - nothing but 4 walls and a tub and toilet!

Slowly, over the past five months, friends have helped me to help Anya by sponsoring a new couch/bed, fridge, stove, washing machine, and flooring, wall covering and simple curtains. Today I received the sweetest photo - Sasha readying her corner of the bed for her first night's sleep in her new home. 

Anya says Sasha loves it there and is already making herself very much at home. It is the first time in Sasha's little life they will have a home of their own! No more moving from friend to friend, couch to couch. They are home. And I couldn't be more happy, if I had won the lottery. 

Sasha making her bed.

In May we head over to spend a long-awaited month with them. This will be my bed for the month of May, and it is better than a five-start hotel - bc I'll be sharing it with Sasha. (Anya, Nastia & Matilda will be camping out on the floor.)

This photo warms my heart. I can't stop looking at it...

Good Medicine

     
My days these past nine months seem to be filled with the task of finding good medicine. On bad days, the medicine is fairly easy to find - its a bed, shades drawn in a darkened room, and fitful hours of attempted sleep with muscle spasms, tremors, involuntary twitches and jerks of all kinds. On good days, it can be more complicated - do I try to get caught up on life? Do bills and answer phone calls? Clean my house? Make up missed appointments? Or do I forego all that and call on true soul medicine, like walks in the woods with my kids, an hour of meditation in a quiet room, a movie with the girls, lunch with a friend? 

In the months I was new to Lyme Disease (and its many piggyback parasitic infections I have) I chose the former. I was trying to live the same life - keep up with who I was, and try to appear as pulled together as possible. As the months and bad days accumulated, I learned that this was not sustainable. 'But it has to be!' my old self would scream. 'But its not..' my new self would warn. Old self would ignore and push past all the caution tape my body and mind would wrap around itself, and use every ounce of brain power and physical strength to act normal, be normal. But each time she did, it led to just more bad days. Bad days on a scale so horrible, I wondered, truly, if I'd make it to the next sometimes.

And then about a month ago, God shined a light in my darkened mind, and I let go. 

I let go of the old me. 

I let go of the narrative I had held of myself for 30 years.

I let go of my titles: teacher, blogger, mother to the motherless, helper, advisor,

doer, go-getter, make-it-happen-er, life-changer...

I let go of my need for perfection as a mom.

I let go of all my expectations of what my life was supposed to look like. 

I let go of others' expectations for me.

I let go of my clean house

I let go of my dreams.

I let go. I let go. I let go.

Instead, I started learning to just be. No expectations, just awareness. Just the 'now.' Instead of continuing to grieve over what I had lost, I started opening to what was now. Instead of wishing I could be out in the world 'doing', I learned to spend time with myself, just being. Instead of keeping my business going and growing, I learned to let most of it, nearly all of it, go. And hardest of all - instead of being there 100% for my kids, I learned to be ok with 50%. That part still hurts, but it's getting easier. The good medicine of letting go is working.

This journey with Lyme Disease is the most difficult road I've ever walked. Harder than parenting a child with RAD, harder than building a company from scratch, harder even than the many deaths of loved ones I've endured. I never thought I'd say this, but even the international adoption process  X 4 is a piece of cake compared to this road. And the worst part is, you have to walk it so alone. No one can possibly understand the horror of slowly losing your mind while simultaneously being aware of the loss - unless they have lived it. No one can really hold your hand through it. It is a very lonely disease that not only cuts you off from all that you love, but slowly, stealthily cuts you off from your own self. 

I'm a very different person than I was even a year ago. But I'm also still me. I may have lost much of what I thought defined me in the past - my encyclopedic knowledge of Shakespeare, my ability to remember names and birthdates of hundreds of students from thirty years of teaching, my penchant for reading several books a week, write several blog posts a day, managing my business, while still keeping an open door for anyone who needs me - but I still retain the same heart. I still love fiercely and hope wildly and care deeply. I just do so much more in the present moment, one day at a time,  and with a hell of a lot of naps in between.

All the medications I am on may not heal me in the end - my recovery is not guaranteed and I'm slowly accepting this. But the good medicine of being  present in the now, the good medicine of gratitude over the tiniest most insignificant things, the good medicine of letting go of all that I was, to embrace, instead, all that I am, is taking hold in me. God is good. Even in the darkest moments, God is good.

Russia

Apologies for the infinitely long absence. I'm still battling Lyme Disease and the energy and focus it takes to write a blog post has kept me away. I find I still need to save my energy for day-to-day living and caring for my girls. however, with my doctor's tentative approval, I am headed back to Russia in May. I haven't seen Anya in three years and I simply can't wait any longer. The last time I was there she was pregnant with Sasha, and now Sasha will be turning three this summer. I'm willing to risk the inevitable sickness that will follow, as I'm sure any of you would, too!

Nastia has misplaced her passport and after 3 weeks of looking, we realize we have to get her a new one. Hope to get that done in Boston next week. Our hope is to leave around the first week of May. We will stay a minimum of three weeks, because it is likely we won't get back again for a few years.

Anyway, just wanted to update those of you who still follow our story and have invested in our lives over the years. I'll try to post a more detailed update on all the girls soon. For now, here are photos to enjoy:

Anya and Sasha

Sasha - growing up too fast

Matilda and me last month.

Most recent photo of Nastia I can find - from last summer.

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.