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.  ❤

Our Nu Daily Life at Nu Tech

Waiting out the rain.

It rained in New Delhi today.  In fact, it has been raining pretty steadily now for the last three days.  And since No. 1 and I didn’t really bring the right shoes for trudging through garbage-y sewer mud, we decided to stay inside until this storm lets up. According to weather.com that will (hopefully) be Sunday, which is great because Sundays are the one day a week in which we are pretty much free to do whatever we want all day-no ‘physio’, just an injection in the morning and another at night around dinner.

We’ve settled quite well into the daily schedule of life at Nu Tech, starting our day at about seven when the wild pack of dogs outside start barking at who-knows-what.  Then the honking horns of the traffic downstairs returns, and we’re up.  Somewhere around 8:30, one of the kindly porters (who seem to speak next to no English but are very sweet) bring a tray of scrambled, fried, or hard-boiled eggs to our room, followed by one of the many lovely nurses (who are also ridiculously kind) with No. 1’s first round of injections for the day.  Shortly after that, it’s time for ‘physio’, and No. 1 heads down to the basement physical therapy room for (so far) about a half hour of stretching and weights.  It’s different for him down there than for others who are working so hard just to regain function in their bodies.  We consider ourselves very lucky that my husband’s symptoms never got so far that he lost motor control or had to deal with the excruciating pain that many Lyme sufferers must face.  So while ALS, and spinal cord injury patients around him are fighting hard just to have a little more movement in their necks and limbs, No. 1 works on rebuilding strength and muscle mass.

Hanging out in 'physio' with Derek

Even children are treated here from all over the world, and one of the most beautiful things I’ve seen here in India is the smile of a tiny little boy who had managed to hold up his own head for just a moment and grin at himself in the mirror- seemingly an enormous success in his thus far very short life.  It is incredibly humbling for us both, and at times can make No. 1 a little self-conscious about his less critical status (his symptoms are there, believe me, but just not always that visible to the naked eye), but his drive to get better is stronger than any fear or uncertainty, and meeting all of the incredible people who are living here is all the push he needs to get better so we can both turn around and give back everything we’re receiving and more.

Soup's On! Come and get it!

Anyway, after ‘physio’ at ten, we come back upstairs for a shower, a little rest, and before you know it, lunch arrives.  Some people have asked if the food is good, and the best answer I can give is, “It varies.”  Today for lunch, we were served chicken in a completely addicting butter/tomato sauce that was just lovely, poured over the fistfuls of rice that are served with just about every meal.  I can’t say I was as excited about the okra (though I did have a few bites) or the soupy/slimy/yellow curry/lentil thing, but hey, whatever.  We’ve got snacks to last us days and family members who have already promised that organic peanut butter and other delights are on their way.  It’s difficult to complain when you don’t have to think about where your food is coming from every meal and which of you is going to cook it.  For me especially, having someone else cook and set my meals before me is the ultimate gift of comfort.  And after such a tough five years, we can make do for a few more weeks.  We are however making a list of every food we would like to have when we get back, and I can tell you that In ‘N Out, Kahuna Grill, and a homemade BLAT are at the top of the list.

It hasn’t been added to the schedule yet (probably tomorrow), but after lunch, No. 1 will have an additional ‘physio’ session at 1:30 in the afternoon followed by what we have designated as Nap Time.  This is essential because even without the extra PT in the afternoon, No. 1 generally describes his status as exhausted.  This is nothing new, as Lyme will do that to you, and it has robbed him of most of his energy since his symptoms first started in February of  ’06.  It really is not a fun disease.  But the stem cells need energy from his body, too, in order to grow, repair, and divide, and so they take that energy from (you guessed it) him, just as they would if No. 1 were pregnant and feeding similar cells in his uterus (if he had one, but I’m reasonably sure he doesn’t).  So, if we are not meeting with another doctor, or being sent off for another round of tests, we rest.  And believe me, it is as good for me as it is for him.  Up ‘til now, it’s been a long road for both of us, there is a lot of lost sleep to catch up on, and I’m taking the opportunity while I have it here in front of me.

No. 1's First IV Injection

After our nap we try to get out of the room, either visiting our new friends in their rooms or going out for a short walk just to see what there is to see.  Before we know it, dinner is being served or the nurses are waiting to give No. 1 his evening shot or both.  (Tonight, No. 1 received his first IV shot of stem cells.  Up until now, the rest have been subcutaneous.)  We eat dinner, maybe watch a little TV, try to Skype with one or two of you at home, update Facebook, and next thing we know, the day is done.

Now, as I listen to the sound of the rain against the darkened windows, it is just about that time again.  We are both sitting at our computers- me on my little fold-out futon/chair/pad on the floor and No. 1 sitting up in his not very comfy hospital bed (about as cushy as the bed in every elementary school nurse’s office, minus the sterile, crunchy paper) and rotating yawns.  Lights will go out soon, I’ll put my sleep mask over my eyes to block out the light that seeps in under the door, and India will slip behind our dreams.

Time for sleep.

A Care Partner’s Theme Song

I saw Catherine Feeny with a friend the other night at Zoey’s Cafe, in Ventura. I found the concert by happy accident, only recognizing this one song from her website, but instantly falling in love again. Her gorgeously simple lyrics and gentle harmonies make the perfect the theme song for every couple struggling with chronic disease. She’s just as lovely in person, too. Thank you, Catherine. You rock.

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.