Gone, But Not Forgotten

I know.  It’s been a long time.  When I wandered over to my WordPress account yesterday, I was surprised to learn I hadn’t even logged on in over six months.  But recently, a fair number of people have asked me about my blog, and each time I’ve felt a little tug to return.

Since my last post, No. 1 and I have been to India for a third round of treatments, rented out our house, and moved twice.  More than seven years after he first got sick, my husband’s neurological symptoms are still a big part of our daily lives.  And though there are sometimes entire months that he continues to feel extremely ill and days in which he must force himself to get out of bed or off the couch, he has improved.  Dramatically, actually.  Just in the last year, we’ve picked up yoga and surfing, he’s playing the guitar, and we’re even taking dance lessons.  We had a few extra days in India after his scheduled treatments, so we traveled 18 hours round-trip by train and spent Diwali in the Himalayan foothills.  If you’ve watched the Amazing Race, you know what train stations look like in India.  These things wouldn’t have happened two years ago, or even one.

Whether he is still fighting residual bacteria or rebuilding the parts of his brain that were damaged by those bacteria, or both, is unclear.  The stem cells he’s received in India should be able to help his body do both, but it seems reasonable that they would be more effective with fewer tasks to divide among them.  At home, we are attempting to support his body’s immune system and natural healing abilities as much as possible, including juicing, vitamins & supplements, lots of yoga and long walks sprinkled with a little surfing and basketball, meditation, herbal antibiotics, a gluten-free and mostly vegetable-based diet, and so on and so forth, seemingly forever.

There is so much more I could say about our journey, but the reason I came back now is because I was reminded yesterday of this spectacular testimony for Lyme disease patients and their care in Pennsylvania.  It was given in 2011, but the information remains extremely relevant, especially this month, as Pennsylvania prepares to host the ILADS sponsored Lyme and Tickborne Disease Conference, and the state senate sends SB177 back to appropriations.  While awareness is growing, the information Dr. Smith has to share should be common knowledge worldwide.  Birds and insects migrate, and people move pets across continents, so it’s silly for any nation (except maybe the Antarctic) to think Lyme isn’t already affecting its citizens.  Lots of people like to tell you Lyme isn’t in their area.  We heard that a lot in India, actually, and patients here on the West Coast hear it all the time.  But statistics like this report say otherwise, and if it’s made it to a totally isolated continent like Australia, which it has, I’m just gonna throw it out there that perhaps it isn’t so much that Lyme hasn’t made it to countries like India, yet, but that too many doctors there don’t know what they’re looking at.

Anyway, I would like to encourage everyone to take a few minutes and listen to Dr. Smith’s testimony and maybe even share this and help me spread the word about one of the fastest growing diseases on the planet.  ‘Cause it doesn’t have to be like this.  It really doesn’t.

Home again… I think.

“Did we really go to India?  For two months?”  It’s five days since we’ve been home, and I still catch myself asking No. 1 the same questions several times a day.  Our trip already feels like a long, beautiful dream, and I often catch myself trying to pull the details of the time we spent there from my fuzzy, sleepy brain.  Still feeling like my head’s wrapped up in a soft wooly blanket from the jet lag, I spend most of my time in a daze not knowing what to do with myself.  Even as I write these words my brain is whining at me.  Tired doesn’t even begin, which is weird because I don’t remember being this tired when we got to India, but then that may be because we were too busy being sent out for tests and trying to find our way around for either of us to notice.  The start of our trip, while we were still learning to navigate our way around Delhi, seems like the first days of high school did when we were able to look back as seniors- a million years ago.

 

Tiny and beautiful.

I miss it already: the sounds of our neighbors greeting the nurses first thing in the morning, the smell of incense burning and peanuts roasting on the street vendors’ carts, the constant harsh-sounding chatter of a language we couldn’t understand surrounding us, the vibrant colors and sparkle of the fabrics that wrapped loosely around nearly every woman from eight months to eighty years old that walked past us, dinners spent in the hospital lobby with our friends, late-night walks to the Mother Dairy cart for an ice cream cone, flowers and fruit stands on every corner, random temples and shrines in the most unlikely places, hopping in a dilapidated tuk-tuk for a dollar or two whenever we wanted to get across town, the daily festivals, and a thousand other details that made up our experiences in a country I will not soon forget.  Both No. 1 and I feel that India changed us in ways we never expected, and we’ve returned home with a new sense of appreciation for, well, everything.  Long, hot showers, quiet mornings, hot dinners, clean air, clean and softened clothes, sleeping together in our own comfy bed, family, friends, and our two little fuzzbutts top the list.  But, then, when you’ve watched whole families bedding down on a street corner in the middle of a busy intersection for lack of anywhere else to go, it gets a little easier to appreciate even the smallest of comforts so many of us take for granted.

One thing we haven’t taken for granted, however, over the last five years is health.  Before Lyme invaded my husband’s body, I don’t think either one of us much considered what it would be like not to have health.  But once he lost it, getting that health back quickly became our main- if not our only- objective.  It’s been a long slow haul trying to find a way for my husband and I to get back to our vibrant selves, and our trip to India was a big step toward our ultimate goal, not to mention a giant leap of faith.  And while we’re not 100% of the way there yet, we can feel it getting closer every day.

Not unexpectedly, since our return, everyone wants an update.  “Are you any better?” we hear over and over.  And though it’s still very early in the game, I’d like to think that the small changes we’re seeing are enough for us to shout out a resounding, “YES!”  Though he still has a long way to go before he can be declared well, better sleep (though jet lag has thrown this improvement for a bit of a loop), greater appetite, and small blocks of time each day (or every other) in which the fog lifts a bit are all signs that the twice daily injections, IV’s, and physical therapy he received for two months are beginning to work their magic.

Before and After SPECT scans

More dramatic and visual proof, however, that No. 1 is on the mend came just a few days before we left Nu Tech in the form of a follow-up SPECT scan.  A brain scan that would normally cost us $5000 in the US was a mere $270 in India.  So we got two.  The first was performed the day after we arrived in New Delhi and showed us what we pretty much already knew.  No. 1’s brain was riddled with dark orange, purple, and blue splotches, indicating all the areas where the Lyme bacteria were cutting off blood flow, and therefore oxygen.  It became glaringly clear after seeing the first set of images why the poor guy has felt hungover and depressed the last five years.  His brain has been literally starving for air.  Lyme bacteria hate oxygen and have done everything they could to protect themselves, nestling ever deeper and cozier into his soft brain tissue.  But, eight-and-a-half weeks and millions of stem cells later the second scan showed a much different picture.  Throughout his body, the stem cells have done their work and will continue to do so for another six to nine months as they continue to seek out the damaged areas and grow and divide, making their repairs.  His second scan shows that his brain now looks much more vibrant, with many of the dark spots having disappeared completely, and displays an overall improved brightness.  All this added brightness indicates that blood flow is returning to normal and bringing with it the oxygen that his brain so desperately needs.  After the follow-up scan the doctors at Nu Tech sat down with No. 1 and congratulated him.  The new pictures showed a ‘normal’ brain (though I don’t know that I would go THAT far ;)), and it wouldn’t be long, they assured him, before he begins to feel the changes that we now had proof were happening inside his head.

We are both extremely excited, to say the least, but the need to be patient remains.  The damage to my husband’s body was not done overnight, and it would be unfair to expect the repairs to be done any faster.  Bones do not knit in a day and neither do brains.  In six to nine months time we will know more fully how much the new cells have affected his healing and will then be able to decide if we need to return to Nu Tech for a four-week follow-up dose of additional stem cells.  But, until then, we wait, we remain grateful for all we have and all we experienced during our adventure, and we keep close the friendships, the hope, and the perspective that we gained in traveling halfway around the world.

There are so many details, so many additional stories of places we went and things we saw while in Delhi, that I hope to be able to share with you.  But I think right now it’s time for me to see if I can get a little more oxygen to my brain and try to adjust to this crazy 13½-hour time change with a very much-needed nap.

 

lYEZVIV$VxlV

Rhythmic India

Today is Friday, and I am sitting in our room in India, waiting for No. 1 to return from one of the ‘procedures’ that he will receive while he is being treated at Nu Tech.  Today’s is called a Deep Spinal Muscle procedure, or DSM, and is a relatively simple injection into the muscles in the back of his neck.

 

Lying back for awhile.

 

Forty million stem cells will then (hopefully) travel into his brain, where they have the most work to do, and continue their job of breaking down and repairing the areas that have been damaged by the Lyme bacteria that have been living there the last five years.  Other patients have been through it and have assured us that it’s really no big deal pain-wise, and that the anticipation of the event is worse than the event itself.  Afterward, he will be brought back to the room and required to lie still for an hour.  He’ll have one more round of ‘physio’ this afternoon, and then he’ll be free to rest or take a walk or join me for yoga or whatever it is he wants.

Aside from the DSM, today is just another typical day here.  In fact, the schedule is so regular that some of the patients and their caregivers began joking that they feel they are living a live version of the movie Groundhog Day, as each weekday (especially by Wednesday or Thursday) begins to blend into the one that preceded it, and we all start to lose track.  And it’s true.  Without arranging to get out of the hospital to sight-see (which the staff is more than happy to help you do), the only events that might help one to keep score is whether or not yoga will be held in the basement that afternoon.

 

Hurray for the ice cream man!!

 

And even then, you may just end up opening your laptop to check because (at least for me) time in India has such a unique way of both stretching out and speeding up at the same time, making hours feel like only moments in time and whole days feel like several.  Remember when you were a kid standing in the middle of your summer vacation, and you felt like you’d been off for a while, but there were still several weeks of swimming and sleepovers and cookouts to go?  It’s kinda like that.  Only not.  I don’t know.  You may have to come and experience it for yourself to know what I mean.

So, what does a typical day here look like?  Well, in the morning, it’s always busy.  We adjusted really well to the time change and wake up almost without fail at around 7:45.  Between eight and eight-thirty breakfast arrives (always two poached, boiled, or scrambled eggs for each of us or a simple omelet).  We eat, and before nine one of the ‘sisters’ (read: nurses) comes to give No. 1 his first injection (or occasionally an IV drip).  Maybe we have time to Skype with a parent or two, and then No. 1 heads down to the basement for physical therapy by ten.

 

No. 1 at 'Physio'

 

While No.1 is in physio, I am either down with him, taking pictures, or cleaning up our tiny 10’X12’ space (folding up my bed, washing dishes or a small load of laundry, ordering our meals from Rita- one of the many warm and smiling faces at the hospital), receiving packages, returning emails, and updating facebook.  I have to work quickly because, by the time No. 1 gets back, Rita and the ward boys are also waiting to wash our floors, empty the trash, change the sheets, and clean the bathroom.  (They are always so efficient and quick, I’m beginning to wish I could take one of them home with me!)  Anyway, after morning ‘physio’, No. 1 comes back upstairs for a short rest, another quick Skype session, or a visit from one of the doctors, and before we know it, lunch is here.  All of our meals are brought to our room.  Lunch is always Indian food, which we have come to look forward to it despite having only tried it once before coming to this country.  Even for hospital food, it is really, really good.  And after a few weeks now, we even have favorite dishes that we are always excited to see on that day’s menu.  Our faves so far?  Butter chicken, chicken in yogurt, dry curry chicken are a few (Seeing a theme here? There is a lot of chicken served here.  No beef, but we have found that we like the lamb and mutton here, too. It’s not gamy at all like it can be at home.).  Immediately after lunch, it’s time for ‘physio’ again, and so it’s back to the basement for a half-hour.  But after that, and until No. 1’s evening stem cell shot, we are free to make the day our own.

 

Tomb of Iltutmish

 

On most days, as with most of the patients who are here, we play the afternoons by ear.  Stem cells will take their energy from No. 1 first, and sometimes that means that he’s wiped out and needs to rest.  This is normal and expected, and so, when he feels like resting, that’s what we do.  Some days, however, like yesterday, we try to get out, whether that means taking a walk to Green Park Market that’s just a block away or renting a cab to the mall or one of the nearby tourist sites.

 

History in Motion: Dancers at Qutab Minar

 

Though a tuk-tuk is far cheaper, ‘cheap’ here is a relative term.  For ten American dollars, we can rent an air-conditioned cab to wait for us wherever we go for up to four hours.  We have found a wonderful driver at the Taxi Hut (literally a dilapidated kiosk where the boss waits for customers and the drivers wait outside on cots under a makeshift overhang for the boss to put them to work) named Gyan who told us he is from Nepal and is bound and determined to take us to Agra to see the Taj.  We told him that won’t be for a few weeks, but with a bright smile on his face and a very excited demeanor, he tried to convey to us that it didn’t matter as long as we didn’t use anyone else.

 

Qutab Minar among the ruins.

 

Yesterday afternoon we had him take us to the Qutab Minar complex where we marveled at the ruins for hours.  We took a gazillion pictures of the tombs, mosques, towers, and local dance performers, and though the air quality was bad, our moods were very, very good.

Afterward, Gyan mumbled some kind of question about whether we wanted to see something else, and without asking for clarification we agreed and soon found ourselves being ushered into a basement shop in a narrow alley that carried the most beautiful silk and cashmere rugs (from Kashmir, no less) and other handcrafted items.  They showed us how the rugs were made on an old wood loom, sat us on a white leather (or was it pleather?) sofa, and served us a delicate and aromatic tea they sold on site in a beautiful China tea set.  All the while, they rolled out carpet after carpet, working (very well, I might add) on the hard sell.  Had we known what a deal they were offering, we might just have bought one.  But as we hadn’t done much price comparing and had no idea what a rug should cost us in India we bought a few other items (an elephant sculpture made of camel bone, a purple- and red-striped pashmina shawl, and a walnut box made in an unusual hut-like shape) and skedaddled outta there.  We probably will go back, though.  They had so many beautiful things, and we think we got a good deal on what we did buy.  There are a hundred other markets to see before we leave, though, so we’ll have to wait and see.

 

Nu Tech @ Night

 

The end of the day is always the same.  Dinner is brought to our room.  No. 1’s second injection is administered around the same time. We spend a couple hours reading, writing, Skyping, or hanging out downstairs with our new friends on the patio, and before too long, it is time for bed.  By ten or eleven o’clock we are snuggling down under the blankets- No.1 in his hospital bed and me on my foldable chair/bed on the floor- and quickly falling asleep.  Outside, the noises on the street finally start to settle, and the dogs take up where the cars left off, creating a wholly different form of traffic that is all their own.

Tomorrow will be much the same as the day before it.  But the rhythm here is becoming a part of us, we like it, and we’re finding health, hope, and happiness inside India’s steady beat.

Lyme is a Heinous Carousel

Photo borrowed from http://mentalcigarettes.wordpress.com/

Lyme is a heinous carousel ride.  From the start, no matter where it is you begin, there is a cycle of ups and downs that never seems to end.  Many don’t remember even getting in line for the ride in the first place.  There is no memory of a tick, its bite, or the dreaded bull’s-eye rash that would indicate the beginnings of the disease.  A deer tick can start out as small as the head of a pin, and if it were to feed on your scalp or back, you may never know it was even there.  Once it’s had its fill of your blood, the tiny insect will easily remove itself, engorged and enlarged, and move along its happy way.  And so will you, or at least most of you might.

Nasty little bugger.

Each year, however, more and more people like No. 1 are completely unaware that they have suddenly become host to one of the nastiest bacteria around- one that, eventually, if it is allowed to do enough damage, can kill.  But first, this tiny, spiral-shaped bacillus will find a nice place to lodge itself in the body- generally soft tissues like cartilage, major internal organs, and the brain (these bacteria may even go dormant for awhile, happy to sleep and hide in your system until some stressful event in your life stirs them up again).  Some might notice some joint pain, aches or weakness in their muscles, headaches, or other flu-like symptoms and simply write these symptoms off as signs that they are getting older or working too hard.  This was the case with my husband.

The Teal Monstrosity

When we moved into our little house eight years ago, we knew it would take a lot of work to get it the way we wanted.  The previous owners had done some renovating in the kitchen, but the bedrooms were rinky-dink, and the fifteen-foot retaining wall in the back needed some major help. The top third of the brick structure leaned in so far over the backyard, that I was afraid for anyone who might be standing near it.  Two sets of buyers before us had pulled their offers off the table due to the enormity and potential cost of the project.  But No.1 really wanted to get into the housing market before it got any crazier, and, being the super-smarty-pants engineer that he is, he decided he was up for the challenge.

We noticed ticks around the property, on the cats, and even in the house from time to time but thought of them more as a gross annoyance than a personal danger.  And so, we didn’t think much about protecting ourselves once work got started up on the foothill that was pushing its way into our backyard.  During the twelve months or more that construction continued, we never found a single tick lodged in our bodies.  (Obviously, we know now that this doesn’t mean much, but people do ask us this question a lot, and so, no, we never saw the tick or the bite.  Is it possible he was bit somewhere else entirely, like back east or in the Northwest?  Absolutely.

Almost done!

But since he has no memory of ever being bitten by a tick and has been living with them in our midst for the last eight years and working in the grassy, tick-infested sagebrush of the Ventura County foothills for almost two, we believe he was bitten at home.)  When the work was complete, we invited all our family and friends over to marvel at No. 1’s ingenuity and craftsmanship.  Five years later, the new wall continues to look beautiful and stand strong.  Unfortunately, No. 1 did not fare so well.

In the fall of 2005, shortly after work had been finished, No. 1 was offered a new job.  It was a position with a biotech startup company, and a former coworker was eager to bring him on-board as one of the lead engineers.  If the company did well, the potential was limitless, and No. 1 started at his new job excited and honored to try to help design a machine that had the potential to make a big impact in the field of cancer detection technology.  It didn’t last.  Just a few months later, during our Valentine’s dinner date at Chad’s (the same restaurant where he’d proposed nine years earlier), the first symptoms began to surface, looking like the flu.  Looking back, it is likely that the high-stress at work (even if completely exciting) and very long hours brought the spirochetes out of hiding.  But we can’t really blame the job or the extra hours.  The same might happen to a person trying to plan a wedding, finish a degree, or have a child.  Whatever it is that can put extra stress on the body has the potential for shaking things up and creating the perfect habitat for Lyme to come out of hiding and thrive.

And so, without ever realizing it, No. 1 stepped onto the carousel- his least favorite ride of all time.  In real life, even before he became ill, carousels have made him dizzy and nauseous and put him out of sorts for the rest of the day.  The same has been true of his Lyme infection.  In the ups and downs of treating his disease, he has been robbed of his personality, his energy, his self-assurance, and his beautiful smile.  For a time, I was terrified that it might rob him of his life, too.  So miserable was he, I wasn’t entirely sure that he wouldn’t give up this fight.  But he didn’t give up.  He held on to that damn gyrating horse, kept his eye on the horizon (admittedly with the help of some amazing Lyme-literate docs, his family, and myself), and held on for dear life.

The 'Not-Feeling-Good Face' I've come to know so well.

Relentlessly, he has spent the last five years searching for a treatment that would cure him.  He tried one therapy and the next and the next, sometimes moving forward by inches, other times hitting a plateau that eventually led to enough anger that he would punch inanimate objects and (much to my frustration) break them.  Sometimes, after a couple of good days, or even a week or two, he would crash-land so hard, I could see it breaking his heart all over again.  This was not my husband, but who can any of us say we would become when we are robbed of our former, enjoyable selves.  I couldn’t feel what he felt- the headaches, the sleeplessness, the depression, anxiety, exhaustion, fogginess, dizziness, loss of memory, and on and on.  And what would it help for me to get angry with him for being angry anyway?  Instead, I asked what else he had considered trying.  Garlic?  Acupuncture?  Counseling?  More antibiotics?  We tried dozens of therapies and treatments, some very conventional and others very not.

At this point (oh, come on now, at any point), I would say that India is one of those treatments that is ‘very not’.  Some people think we are crazy or stupid for going through all of this and have even gone so far as to say so, and that’s fine.  We can only respond that we have done all the research (two straight years worth) that was necessary for us, and believe (especially now that we’re here) that we are absolutely in the right place.

Today marks the end of our second week at Nu Tech Mediworld, and while we still have several weeks to go before we come home to show off any miracles of our own, miracles are visible here everyday.  In the short time we’ve been here, we have spoken with spinal cord patients who are feeling again and seeing movement in parts of their bodies that they were told would be forever dead.  We have seen Lyme/ALS patients go from barely being able to sit up in bed to walking down the hallway to our room for a visit.  We’ve seen comparative SPECT scans that would blow your mind and will blow the minds of the patients’ doctors at home.  We have met with Dr. Shroff’s own mother who was treated for stroke, is fully recovered and completely delightful.  We’ve spoken to patients who don’t remember what it feels like to be sick anymore.  They are home now, have been for a while, and plan never to come back except to visit the family they have gained while staying in this tiny little hospital, tucked away in a (relatively) quiet corner of New Delhi.

Our Saturday Night Dinner Group at Nu Tech

This morning, Drs. Shroff and Ashish held a meeting in the lobby for all the patients and caretakers to introduce themselves, describe their afflictions and progress, and ask any questions they might still have had about the stem cell treatments they’ve been receiving.  It was unlike anything I’d ever seen or imagined I would see in any hospital in the States.  Everyone was completely open about who they were, what was wrong with them, and what were their losses and gains.  Throughout the meeting, but especially during the question and answer period, there was a sense that we were all in this together (doctors, nurses, patients, caregivers, really everyone), that healing was a team effort, and that nothing was closed to discussion.  We could ask anything (minus how to make our own stem cell soups at home), and the doctors gave everyone ample room and time to speak.  It felt like healthcare should, like actual care.

Tomorrow we enter week number three unafraid that No. 1 will suffer any ill effects, nor that he will go home without major improvements.  We believe wholeheartedly that we stand at the frontier of such enormous medical breakthroughs that the world may soon be a very different place, and we can’t wait.  So, if you have been unsure or afraid for us in the past, we ask you not to be now.  It is no longer necessary.  And when we get home, and can finally step off this damn carousel, you will see that for yourselves.

I am getting my husband back in India, and we are finally ready to get on a different ride.  I’m voting for the Tunnel of Love.  ❤

Ch-ch-ch-changes…

We are coming up on another anniversary.  People who know are even beginning to ask.  How long has it been now?  Two years or three? And I have to admit that even I am surprised by the answer.

Four years.

Four, as a number, seems so innocuous and small.  I have more digits on my right or left hand.  Pick one.  A four-pack of most grocery items feels like a rip-off, which is why I believe that just about everything- except tires and wieners- comes in multiples of six, instead.

Any mother will tell you, however, that the tantrum of the right four-year-old is proof of just how grand the number four can be.  Have you ever tried to argue with a really angry four-year-old?  Well, don’t.  A Terrible Two wouldn’t have a chance against one of these guys.  In the same amount of time that it takes to learn to walk and talk, graduate from high school or get a degree, families are built and torn apart.  Monsters and mistakes are made and revealed, and some lives come undone or turn around.  In terms of years, the number four can seem a lifetime.

So here we are, my husband- my No. 1[i] and only- and me- writer, care partner, part-time wardrobe stylist, and anxious mess- four years into life with Lyme disease.  Weeks of treatments have turned to years, wreaking havoc through nearly half of our decade-long marriage and turning our vibrant, active selves into something that would seem unrecognizable in contrast.

I won’t get into the start of it all today.  Our early thirties have been hell and our Lyme story, from beginning up until now, is long and complicated.  Anyone who has ever lived with or taken care of a chronically ill friend or family member will remember the patience, fear, sadness, and love that goes into every day while that person waits to get better.  Assuming better is even possible.

Suffice it to say that No. 1 was diagnosed in May of 2006 after four (There’s that number again.) months of losing our minds, not knowing.  Four.  Really.  Long.  Months.  His first symptoms hit during our Valentine’s dinner date in February that same year, and our lives have not been the same since.

Without question, all things great and small are better.  After more than 1,400 days and nights (and counting), we are luckier than many.  No. 1’s energy and mood continue to improve and the neurological symptoms to diminish, though some days there still seems a long way to go.  More tests are a given.  We spend many moments clinging to the small signs of hope that health is returning: the re-growth of hair that thinned around his scalp before he had Lyme; an honest to goodness cold (rare in our world); a few clear-headed moments (even rarer); a bold laugh, deep in his chest; an evening out with friends and without any pain; or just a smile, free of sadness.  It all matters.

Three years ago, when a lot of the world seemed lost to me, I went back to my journals and wrote.  In the darkness, I tried to find some kind of light in my day, and often it was the hours I spent with words that offered me the most comfort.  I wrote to empty myself and read to refill what was gone.  A self-proclaimed, optimistic manic-depressive, I gorged myself on stories of emotional and physical survival like The Road by Cormac McCarthy, The Year of Magical Thinking by Joan Didion, Eat, Pray, Love by Elizabeth Gilbert, and The Glass Castle by Jeanette Walls. I was awed by and grateful for the people and characters brave enough to tell their tales, bringing me into their private, painful worlds.  Throughout the more chaotic periods of my life, stories of courage in the face of solitude always had the unique ability to make me braver, make me feel that I am not always so alone.  It was this gratitude more recently that shaped my decision to stop writing only for myself and be a writer.

My life is full of stories.  My gypsy parents made sure of that.  My sister and I spent our childhoods aware that change was the only constant.  Fourteen schools across Southern California and one in Montreal, Quebec, Canada– from Kindergarten through twelfth grades- have held registration cards in my name.  I think my parents figured, should I live to tell the tale, I would have plenty to tell.  The chaos was all part of the adventure.

But here I find myself, living in the sweet, sunny foothills of the California coastline, where things have remained maddeningly the same.  Little changes are everything in the fight against Lyme, and years can be spent making miniscule adjustments to treatments- adding or removing one element at a time to be certain of what is or isn’t working.  The pace can make you crazy.

Diagnosis was tricky, too.  Somewhere in our backyard, during a yearlong retaining wall project, my engineering, hardworking husband was host to a miniscule tick that no one ever saw.  In the bite of that blood-sucking fiend, a bacterial infection ensued that no one believed could happen in this region of the country.  Doctors shook their heads and shrugged their shoulders for months while tiny, invisible dancers twirled their way into my husband’s brain.  One recommended he drink more water for his swollen lymph nodes to clear a possible sinus infection.  And, four years later, many doctors would continue being about as helpful as a chopstick in yogurt if not for a combination of research, luck, and sheer tenacity.  But then, we are reminded often of how fortunate we were to get a diagnosis for my husband at all.  Some wait decades.  Advocates for people who can’t seem to find a reason behind their deteriorated health are few and far between, and insurance companies are hardly leaping up to cover the bill.

If the medical community struggles to respond to people with chronic Lyme disease where does that leave the rest of the world?  Once a diagnosis is found, it’s hard to tell if and when things are getting better.  How should a patient plan his life when symptoms come and go and relief doesn’t exist?  Where does the joy come from when you suffer the debilitating pain of a Mack truck crushing your head and joints?  When a person can’t sleep, can they be expected to dream?

Spouses and other family and friends are left to scoop out the husks of the souls they once knew and make do.  Many relationships fade.  Without the energy to perform socially, the sick let their friendships fail without much of a fight.  Tired of having calls unreturned and invitations refused, people stop calling.  Perhaps they are disturbing the patient.  Perhaps they’re unwanted.  And not even the patient is sure because he loves you and hates you for your kind words and your life that goes on without him.

Life lived with chronic disease, if it’s bad enough, can be its own kind of purgatory.  To go back and remove the experience is impossible, and to move forward requires health.  The old saying without your health, you have nothing can seem like the only true words ever spoken to a sick person.  And the longer that remains true, the harder it is to see what you do have.  This has absolutely been the truth for No. 1 and I as we’ve clawed our way back to this level of physical, psychological, and emotional health.  Usually, while one of us is feeling low, the other has taken the reins, usually providing enough support to slingshot the other out of the resulting depression that comes with long-term illness.  But not always.  Sometimes what we go through is just hard, and we can only hope for time to pass quickly until something changes.

But if anything else is true in this world, even when it’s slow and seemingly invisible, it really is that change is the only constant.  I’m starting to see that now.  Anything that seems unchanging can only remain as such for so long.  Even the mighty, purple mountains fall, and our lives are not nearly so unmovable.  No. 1 and I will eventually heal from this mess, and our lives, through small stages of recovery, will continue to improve, however slow that may be.

But here’s the thing.  Change has been coming at much too slow a pace for far too long.  For seven years now, No. 1’s been driving the long forty-five minute commute to and from work, from Ventura to Goleta.  Four out of seven of those years, With the determination of a soldier on the march, he has shouldered Lyme like a pack he only takes off at night.  Ignoring the 100 lb. weight on his back, he keeps moving, not thinking about the strain until he can make it back to camp and rest.  Somehow, he has managed to keep us in our house and off of disability.  When all this started, we were told disability was not an option for us anyway (believe me, we asked), but it is because of him that we have all that we have.  Yes, he is amazing, I know.  And it’s high time he was cut a break.

With that in mind, I’ve been doing some research.  For the first time since we realized we were stuck living in Ventura, it may be possible to leave.  Basically, since we left, we’ve been dying to get back to our old digs in Santa Barbara (a quick ten minutes from work for No. 1).  Heaven on Earth, the American Riviera, whatever you want to call it, we’re ready to call it home again, and I’m ready to make it happen.  I would give anything to give him the extra time to rest.  It’s just a better location for us, overall.  But we have some moderate construction left to do on the house and a pages-long list of handyman-type repairs that need fixing before we can rent out our home and move.   Many times, it’s difficult for us to be motivated to do easy things on a good day.  But after discussing it, we are more determined to move than ever.  I refuse to believe (and I always have) that better is not possible, and moving to a more sustaining environment can only help to make that happen faster.  I have decided I will do whatever it takes, if it means learning how to wire electricity and hang drywall myself, to get out of here.

I mean to see the end of this war.  This is one anniversary I’d like to stop having.  Four years is long enough.  Let’s get on with this thing.

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[i] The name for my husband, No. 1, was given in reference to a) the fact that we never, and I mean never, call each other by our given names, b) one of my husband’s favorite television shows, and c) something my mom said on my wedding day that was supposed to comfort me before she walked me down the aisle but ultimately reminds me of how many husbands I’m aiming for in this life.

There must be something in the water…

[Author’s Note: Nine years after my husband’s first symptoms and a zillion changes in who I am and how I think, I read this post occasionally and consider deleting it. While I would still dearly love to have a family with my husband and experience the wonder of bringing a brand-new life into the world, the panic over when and how that might happen lost its grip on me some time ago. I am leaving it here, at least for now, because this was me at one time, and these feelings put me in a dark place I never thought I would escape. I know that there are other women out there who feel this wound deeply. Perhaps one of them will read this and feel a little less alone.]

That’s what people say when all the women in the office start getting pregnant at the same time.  I’ve heard it a billion times, and each time I want to wipe those sweet little grins off their sweet little faces and demand the exact location of this alternative “fountain of youth”!    It seems that, in any group of women, like penguins diving off a cliff, one woman gets pregnant and soon the whole group is shopping maternity and cooing over Gymboree ads and Pottery Barn Kid catalogs.  One by one, all my female friends and family (even my baby sister!) have succumbed to the apparent thrill of seeing their bodies change while they happily play hostess to an alien invader who changes their sleep schedule and hip measurements forever.  One by one, friends have become unavailable for meeting for lunch or coffee, and long afternoon strolls on the beach with them are a thing of the very distant past.    I sit alone in the pedicure chair wondering what went wrong.  Where did everybody go?  Was there a fork in the road that I missed?  Where was that proverbial memo?

The problem, really, isn’t even that all my friends have kids and I’m too busy working or shopping to bother.  I’m DYING to have kids!  My life has been about caring for children!  I’ve been taking care of other people’s children since…well, since forever!  I began watching my sister at five when my parents needed to run to the corner store and spent every summer from eleven years old on babysitting for all my spending money.  I nannied, taught preschool and elementary school, and am like the Pied Piper when it comes to other people’s children at parties.  If there is a baby at a gathering, you can bet I’ll be holding that baby at some point during the evening.

It’s apparent to everyone around me that I should have kids already, and the questions have begun to come at me with more frequency.  “Do you have kids yet?”  That ‘yet‘ rings in my ears all night long.  That three letter word that reminds me of the insistent pounding of my biological clock stomping its foot on the hardwood floors.  Like many women in their early 30’s, I sit on the brink of uncertainty.  While other women are gleefully reveling in their reproductive bliss, I’m left wondering if all my planning to “do it right” was all it was pumped up to be.  Education?  Check.  Marriage?  Check.  House?  Cars?  Check.  Check.  I did it all right!  I did and have everything a girl is supposed to do and have before becoming a responsible parent!  Excuse the tantrum for a moment, but I WANNA BE A MOMMY!!!

I know what most people would say, and it’s not just baby fever, and please don’t tell me anymore that I have plenty of time or it will happen when it’s supposed to happen for me.  No one knows how much time my body might have left, and it’s impossible to know if it’s ever going to happen at all!  If it were a matter of just having a baby, I could go to any of my friends’ and neighbors’ and cuddle any number of babies all day long.  I simply long for the experience of creation…the experience of taking my love for my husband and creating a family.  I want to watch the evolution of the love that the two of us share as it shifts and grows to envelop someone that is a part of each of us.

I am in the unique situation of being completely prepared and able to start a family, with a husband who is as gung-ho about starting a family as I.  So what am I whining about?  In the end, it comes down to something as insignificant as a teeny, tiny, spiral-shaped bacteria.  We’ve been taxiing around on the longest runway ever all because these spirochetes have been swimming around in my husband’s blood stream, and the buggers won’t DIE!  So we wait…and wait…and, oh yeah, then we wait some more!  Every treatment and new medication, hopefully, takes us one step closer to resuming life as normal and moving forward.  He could, potentially, face this condition for the rest of his life.  What does this mean for our ability to reproduce?  No one can say.

So, I have no idea when, or if, I’ll get to start that family.  Maybe I’ll never know the feeling of growth and movement that comes from carrying something that is entirely me and my husband.  If he doesn’t ever fully recover, perhaps we will have to come to terms with adoption as the way our family was meant to come together.  I’m nowhere near that yet.  Not yet.  The truth that I may have some time yet still lingers at the back of my mind, and I am clinging to it with every fiber of my being.

So moms, please be kind.  Please be gentle as you are whipping out photo key chains and gushing over your babies’ latest spit bubbles.  I know you sometimes wish you were kickin’ it at the Coffee Bean with me on a lazy afternoon.  I wish you were there too.  You did leave me behind after all.  (I don’t blame you for it.  I’d have done the same thing!)  But that blended mocha just isn’t the same without you.

I’m a woman on the outside, looking in as if you have exclusive access to the best shoe sale in history.  I can only get a peek at the selection through the window, and the envy is strong.  So let’s make a deal.  I promise not to tell you how late I was in bed this morning if you promise not to detail every tiny moment of bliss you’ve had while watching your baby sleep.  And when you find you’re in the midst of women who swear there’s something in the water, PLEASE get some for ME!

rhyme and reason

I have had an impossibly difficult time trying to decide how to begin this new adventure.

Perhaps, I should start by talking about Lyme disease.  It is, after all, why I’m here.  I live in California, where Lyme disease barely registers on the radar of most health professionals.  Most West Coast residents don’t even know that Lyme is something from which they should protect themselves, much less what it looks like or what to do when they actually get it.  And so, a smart, little, spiral-shaped bacteria found its way inside my husband’s body and changed our lives, quite presumably, forever.  We’re coming up on four years of dealing with the effects of the infection, just in time for our ten-year anniversary, and we still don’t know what the final cure will be or when it will come.  Will I ever have my husband back the way he was?  The jury is still out.  But, then I figure, I have plenty of time for making you cry.  More on that later.

Since our Lyme journey began, I began work on a novel that I hope will help to shed some light on what chronic disease can do to a young, thriving couple. Who and what is left when life suddenly shuts down and reality sets in that the person you promised your life to may be changed forever?

Different versions of the same story are written all over the Internet in chronic disease support groups and chat rooms online.  But it’s the outcome that matters. More often than not, patients who suffer long enough end up alone.  Understanding chronic disease is next to impossible, even for health care professionals. Family and friends can’t help but burn out after of countless cancellations, lack of contact, and the changes in personality that are inherent with the development of life-long pain or chronic disease.  The human instinct is to move forward, move on.  Unlike our more fire-challenged ancestors, people rarely die anymore when they are left behind, but they are still left behind to die every day.

After believing they had everything to live for, and then having it all stripped away, the characters in my book continue to hope.  And, so do we.  But, leave that for the book.  I have to finish it first, and I really like fairy tales, so it could have unicorns in it tomorrow.  I’ll let you know.

And that’s it.  That’s what I hope to offer you as I venture out on the next part of this bold adventure: an introduction to who I am as a writer, a peek into what it means to ‘live with Lyme’, and maybe even a chance to see me in a way you never expected.

I hope you enjoy the ride.  I promise it was bumpier the first time around.