The Life I Didn't See Coming

Hello, World. It’s Been a While.

I poured my heart into this blog for many years. I think I started it around 2005 or 2006 - nearly twenty years ago. It became a quiet but vital witness to my life as I raised my children, navigated parenthood, and tried to make sense of the world through words. And then, like so many things, it faded into the background.

I left a quick update in 2018 when my grandson was born, but mostly, I walked away. Life had changed, and I didn’t know how to bring those changes here.

Today I stumbled back -- I'm not even sure how. I just found myself on the Blogspot homepage, staring at a list of my old posts. I clicked on a few and was suddenly neck-deep in a past life. It was overwhelming. I hadn’t realized that in the chaos of those years, I was actually living my version of nirvana - a beautiful, purpose-filled life. Rereading it cracked something open. It hurt. 

Life is so different now.

I don't know how much I feel safe sharing anymore. The world is louder, harsher. And I’m softer, more protective of what matters.

In the past few years, I’ve faced things I never imagined. I survived a heart attack and a stroke. I have a 100% blockage of the LAD (the 'widowmaker') and only a collateral vein keeps things going. It’s not sustainable forever, but for now, it holds.

But the real devastation wasn’t physical. A private trauma, one I cannot detail for safety and privacy, shattered our lives. We were advised by law enforcement to go into hiding for our safety. And we did. We moved to a hidden location, changed our phone numbers, deleted social media, stopped all public engagement. I closed the beloved business I’d run for 32 years. I became a full-time caregiver. We shrank our lives down to the bare essentials. It was survival.

Healing has been very slow and very painful, but it has happened and is still happening. A family member still meets weekly with a trauma therapist, but we are finding a path forward. We have found gentleness in unexpected places -- through the kindness of strangers who have walked a similar path, the loyalty of true friends, and the quiet miracle of simplicity.

We've let go of nearly everything: no car, no Wi-Fi except pay as you go, no tv subscriptions. No traveling, no events, no distractions. Just stillness. Walks. Gratitude. Presence. Love.

I’m not the same person who wrote all those posts. I don’t think I ever will be again. But I am someone who still longs for truth and connection. Someone who is re-learning how to live in peace. Someone who, despite everything, truly believes in goodness.

I’m considering writing here again, though I’m still unsure how. I have to find the line between sharing honestly and protecting the sanctity of my private life. I don’t even know if the people who once read this would recognize me now -- or if what I have to say will speak to anyone at all.

Still, it amazes me that this blog is being read. This month alone, over 5,000 visits according to the stat counter. Most to the adoption-related posts, which makes me wonder if people still find something here that helps. Maybe it’s AI scraping content. Or maybe it’s something else, someone else. If it’s you, if you're reading this now: thank you.

I turned 60 this year. I didn’t celebrate, but I did feel something shift inside me. A kind of inner call to live out the rest of my days in far deeper alignment with what truly matters. I want to forgive what can be forgiven. Release what needs to go. Heal what can be healed. And love others with every ounce of my being.

That part of me hasn’t changed: the part that wants to make the world more gentle, more humane. I want to spend whatever time I have left being kind, being honest, and being present.

And maybe, just maybe, I’ll write some of it down again.

Little Henry Om

Once again, I forgot this blog even existed. One of the last remaining vestiges of Lyme Disease - memory loss. But on the plus side, I've found that memory loss has its advantages. When I re-remember something, I also get the delight that comes along with a new discovery. Like 'Hey! I forgot I have a blog! Wow! I used to write a lot! Cool!'  And thus it goes with each reaquaintance:

Hey! I forgot I have a storage unit! I wonder what's in it!

and

Wow! I forgot I have a P.O. box - look at all that mail!

or

Oops! I found three weeks of voicemail I didn't know I had!

Usually it's positive, but there are plenty of bummers too. Such as:

Damn! I missed my doctor appointment for the THIRD time in a row. I wonder if he's going to drop me as a patient now...

and

OMG! I completely forgot to take my medication all week! No wonder I'm feeling worse!

or

Oh No! I signed up for a yoga class and forgot about it and now its the LAST WEEK OF CLASS!

All of the above are actual experiences I've had since we moved to Gloucester. I have had to learn to forgive myself and just accept this handicap right now, hoping it will get better in time. My doctor says my brain just needs more time to heal,but that it WILL come back. I trust him.

So, now that I've rationalized my long absence, I'll gush. :)

I'm a Nana. 

That bears repeating: 

I'M A NANA!

Nothing nothing nothing compares to waking up to a newborn every day. It's honestly better than any drug. It's a very powerful antidepressant that just floods my life with goodness. I'm in love, truly madly, deeply and I still wake up incredulous that he's here and he's ours.

Nastia is an amazing mom. I didn't expect that. I expected she'd be overwhelmed and frustrated and, honestly, whiny. She is none of those things. She is a new happier, more patient and loving version of herself. She utterly adores Henry. He is in her arms all his waking hours. Between the three of us girls, I don't think his feet will ever touch the ground! He is so loved.

I'll try to post more about him soon, and about his wild entrance into this world. it involved 27 hours of labor and an emergency c-section after almost four hours of pushing. But they both made it through, and Matilda and I were right there through it all. He was 9 pounds 13 ounces and 21 and a half inches long. 90th percentile in height and weight. And if they gauged adorability, he'd be 90th percentile in that, too. :)

Well, here are a few photos for your perusal!

Henry, 5 minutes old, with his Nana

Henry, 3 weeks old

Henry, one month old, with his Mom

Henry, 7 weeks old, with his Auntie M -
on an unseasonably balmy day last week!

This December Day

The waves are fitful outside my window - the wind is working them up into white froth. The cat is snuggled on my bed, the dog curled up in a tiny circle on her pillow. The girls are in their rooms - one reading, one watching anime. You can guess which is doing which. :)

I keep feeling a compulsion to write, but never do. I always open up this blog, sit and think, and then close it, because I think 'to what end?' To whom am I writing? For what purpose? 

But this afternoon I offer myself a challenge to write whatever comes to mind, for no purpose but that I feel like doing so. Imagine it is simply a small glimpse into my current life.

We live somewhere else now. A tiny riverside cottage in a much more rural area than we were in Marblehead. We love it here, especially me. It's quiet and oh so beautiful. There is a great horned owl in the tree outside my window. There was a great blue heron in September and October, but he seems to have moved on. There are daily sunnings of cormorants, a few very devoted seagulls who claim our pier as home. There are more bunnies than I have ever seen outside of a Beatrix Potter book. There are red-tailed hawks and ducks and foxes and, sometimes, a coyote. They, the coyotes, live at the rocky start of the peninsula on which we live now. We are at the far end - the fingertip - so we don't see them much. We are surrounded by a mature grove of oaks, and the house is perched on a beautiful outcropping of smooth rocks that act as a boundary between us and the river. It's heaven.

Matilda took awhile to adjust. She really missed her friends and the busy-ness of a typical suburban life. Knowing she truly has the soul of a writer and needs solitude, I imagined she'd adjust. She did. Now she can't fathom living that old life, this one being so rich in nature, quiet, and generous time to think and paint and write.  Nastia seemed ambivalent at first. She could take it or leave it. She missed easy access to supermarkets and the Russian store, but otherwise seems just as content her as at our old home. They both love that we are closer to family here - cousins around the corner and other cousins just a block away. Seeing them more has been just grand.

Nastia's baby is due in the next two weeks. We are ready. Our tiny home is chock full of baby things - pack and plays, carseat, bouncy-chair, bottles, bibs, and the rest of the required gear. I think he's coming early, but that may just be wishful thinking on my part. 

Nastia's fiancé should arrive by February, God-willing. We applied for his visa in July. They talk on the phone for a good four hours every day. They are both handling the separation better than I would in their shoes. 

We still miss our beloved Henry (dog) and Puck (cat) who both died this year. Both lived long happy lives, but it still aches to have them gone. We talk about them daily. Anya and Sasha remain well, relatively speaking. Daniel, too. I have some great friends supporting them while I remain unable. I still talk to Daniel weekly, but Anya not so much. She is not as accessible, for whatever reason. But I do still get photos of Sasha and send care packages when I can - a Christmas one is going out this week.

What is going on in your lives? How have they changed? I'm grateful to those of you who emailed me after my post on Nov 19th. I didn't know commenting had been turned off. I think I fixed it. Let me know.

Happy advent to all. Christus Venit.

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.

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.