I'm Here

Its been a long while. I've changed. So very much has changed. 

I'm not sure if I'm going to write again here or start a private blog. Still contemplating. But I feel like writing tonight and I still can't hold a pen for more than a sentence or two, so here I am. 

Tonight I have been contemplating the changes my brain has undergone from Lyme. If it weren't so upsetting, I'd find it fairly fascinating. I am no longer an extrovert. That's been a hard transition. I miss the old me. The new me wants to be alone most of the time. The new me craves immense solitude. The new me still can't handle being in public for very long. The new me avoids people, events and parties. The new me is perfectly content to be alone for hours on end. I think the only way to really deal with this is to accept it and adjust. I'm trying. 

A Very Long and Overdue Update from Russia

I wish I could go back in time and post something for every day we were here thus far, but no such luck. We've already been here 14 full days and this is the first moment I felt I could write. The trip started out very rough, because I had no clue that the flight would cause such a flare-up of my Lyme symptoms. I had to spend the first few days mostly in bed. Then I picked up Sasha one too many times and my back gave out. Back to bed. When I was finally on the mend, we experienced a mini-catastrophe in the form of a flood in Anya's brand new apartment. No time to blog when you are literally hanging on by a thread. Let's just say it was a few days I'd rather forget. I can't bear to see Anya cry (and it is a VERY rare occurrence) so it was a heart-breaking few days. I was mortified to have to reach out online and ask for help once again, but when it comes to Anya and my other Russian kids, I just can't NOT ask. I love them too much to let my pride get in the way. I HATE asking but I LOVE that I have such a supportive group of friends to help. Most of them know I have done or would do the same for them. 

 

So, I guess I'll just share some highlights:

Meeting Sasha was a dream come true. Anya, my friend Polina and little Sasha surprised us at the airport at 5am. Sasha immediately ran to me and wanted me to pick her up. I held her and she snuggled into my neck and said "Baba, Baba.." Sweetest little words. I cried, of course. Seeing Anya again was wonderful too, and it was fantastic to see her walking so much better on her bad foot. Last time I was here she could hardly walk with it - now it's just a limp.  Meeting Anya's next door neighbors was another highlight. They are a brother and sister that share the tiniest apartment you've ever seen. Their names are Katya and Kolya, and katya's 7 year old son Sasha lives there too. The whole place is about 10ft by 10ft, plus a bathroom. They all sleep together on a tiny couch - I have no idea how they do it. Sasha doesn't even have one toy, so of course I gave him a few things. The building Anya lives in was build specifically for kids who aged out of the orphanage and destitute people who have no home. All the apartments are about the size of a small American bedroom, but they all seem delighted with what they have. The sad part is, this place was really thrown together haphazardly, and already everything is falling apart. Why? It drives me crazy. Anya already has to replace the tub faucet in the bathroom and the door handle as the cheap plastic they used broke after a few days' use. The front door handle is already falling apart - and every single apartment is like that. the part that makes me so mad is that there are dozens of articles in the news about this 'amazing' project and basically how great the local govt is for creating them. I wish those same govt officials had to live in one for a week!

Because of the flood and the size of Anya's place too, we opted to rent a small apt in Kemerovo via Airbnb for half the trip. Matilda and I are staying here (with Sasha half the time) and Anya and Nastia get their 'sister time' at Anya's. It is working out well. The week we spent at Anya's was hard because just our suitcases alone took up half the space. Getting anything done proved impossible. Try sitting on the edge of an air mattress to prepare dinner - on the floor. And no one can move while you do it or things become impossible fast!  Another highlight was meeting the girls' birthmother. I'll try to write more about it at some point, but for now I'll say it was so meaningful to meet her and I really really like her. Poverty destroyed her AND their family. With even a few dollars a month, they could likely have stayed together, but the girls were starving and she was losing her mind over it. What I didn't know was that her first trip to jail was for stealing food for them. I had heard it was their father who did this, but it was Oksana. She truly loves her girls and is trying to make up for what happened 20 years ago. She is funny, bright, intense and very very outgoing. We got along great and talked for hours.

The most recent highlight has been spending quality time with Daniel - the son that Putin took away from me. I don't talk about him much these days because it is honestly too painful, but while I am here with him and happy, I will share. Daniel has not changed (except in stature and maturity) . He is the same sweet, kind, gentle, sensitive boy I first met. He and Matilda get along GREAT and he watches over her like a big brother. He stayed last night and is coming back tomorrow. " I want to spend as much time with you as I can" he said " because maybe I will not see you for three years again.." He acts very grown up out in public and with others around, but once Matilda went to bed, he curled up with his head on my lap just like he used to as a little boy, held my hand and fell asleep. He still needs and wants a mom. He still dreams of coming to America. He still hopes we will be together in one place someday. If only.

Last highlight is that I'm also spending time with my former student and wonderful friend, Olya! Olya was one of my Shakespeare students here back in 2010. We have kept in touch and she came to visit me in the US in summer 2014. It is WONDERFUL to see her again. Matilda is in heaven, bc she ADORES her. Olya translated for us today while Daniel and VAnya were visiting.  My hand is cramping so I need to go for now. I'll try to add some photos. More soon, because tomorrow we spend the day at Olya's dacha!  

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.