Under the Delhi Moon -OR- Honk If You Love India

Nervously sitting in LA traffic.

Racing to the airport in bumper-to-bumper traffic, I thought driving in L.A was crazy.  The 101 was jam-packed, and we were running an hour later than we wanted to make our 11a.m. flight to Chicago.  We made it.  Barely.  As soon as we arrived at LAX, we leapt out of our friend’s minivan, blew kisses to her three adorable girls, and ran to check our bags.  ‘It always helps to ask’ seems to be my motto lately, as it saved us from missing our flight when I checked with the baggage handlers to see if we really needed to wait in line behind all those other people.  It turned out we didn’t, and we were ushered straight toward security, putting us on the plane just before the final boarding call.

"Tequila will help me sleep on the plane, right??"

Four hours later, we sat in the Chicago/O’Hare Airport Chili’s and tried to eat one last hamburger before leaving for the Land of No Beef.  We were so tired though, that I think the margarita got the most attention, and it wasn’t long before we were back in the air.  We spent the first two hours watching Sex and the City 2, and then it was lights out (or at least an attempt at such) for the next 12 hours or so.  Every time I woke up I thought, maybe I should do something- read, write, watch another movie, or play a game- but I could barely see straight, and my head would swim at the thought of turning on the overhead light, and then I would fall back against the pillow for another two-hour ‘nap’.  I dreamt of my sister who was talking about books instead, which was some of the best comfort I could hope for.  Going on three hours sleep from the night before, there was no way my book or my blog were going to get any attention.

Leaving LA in the morning and then back in the air by early evening, we watched the sun throughout the day until it set.  Then a few hours later, while somewhere over Santa’s Workshop or Greenland, we watched the sun rise and then set again shortly before we touched down in New Delhi.  Fat stripes of orange, maroon, and purple replaced the brightness of the sun as it fell, and the first star of the night hovered over the wing of the plane, while we both hung suspended under the Delhi moon.

1st batch of stem cells!!! 😀

It seems impossible now that we’ve only been here less than 48 hours.  (I actually had to ask No.1 to count back with me because I really didn’t think I could be right.)  Yesterday feels like sometime last week.  In the small amount of time we’ve been here, No. 1 has had a SPECT scan, an ECG, an abdominal echogram (sp?), a urine test, two blood tests, a chest X-RAY, two physical therapy appointments, several meetings with his new doctors to discuss anything and everything regarding his diagnosis, symptoms, and treatments, and THREE stem cell injections.  Anyone want to take a guess at how much time, money, and aggravation it would have taken to get all of that done in the States?  A lot.  On all counts.  I promise.  Just making an appointment for some of the tests we’ve received would have taken MONTHS!  And your results?  At home you might get them in a few weeks.  Maybe.  Not here… Done and done.

Walking through the busy streets of New Delhi.

At this point we’re both completely wiped. No. 1 was so tired tonight after a walk around the neighborhood and his third injection, that he passed out before he was able to eat.  His food was still waiting for him when he woke up, but he was more excited about the walk he had taken around Delhi in his dreams.  In one, he said, he could remember very distinct music, and the same unknown man showed up twice- once as a diner in a restaurant, listening to my husband describe his experiences here, and again later as a street musician who turned around to look right at No. 1 as he approached.

Honestly, I am surprised that No. 1 didn’t dream about honking horns.  They never stop here but for a few hours in the middle of the night, when there aren’t enough vehicles on the road for any two to have to pass each other and announce their positions.  It is so unlike it is at home.  Here there seem to almost no rules of the road.  It’s every man for himself, and yet there seem to be very few accidents.  This may be because no one can move fast enough to create much of a mess when two cars do collide.  But unlike Los Angeles, the cars actually do get to move, and no one ever sits for long.  The idea that a vehicle would stay in something as silly as a painted lane is ludicrous.  They are merely a suggestion, but you are welcome to make any move you’d like to bring you a little bit closer to your destination.  Honking is a required part of letting people know where you are in relation to them and where it is you are likely to go next.  Instead of the grand FU we intend when we honk at home, here it is more a friendly greeting, a quick “Here I am! Coming through!” for those around you.  It’s a courtesy more than a warning, and some vehicles even have the words ‘Honk Please’ painted brightly on their backs- so different from the warnings of death we see pasted on the back of every big rig back home.  (You know, the ones printed with the words “Passing Side” and “Suicide”?)  Intersections are hilarious, and I’ll try to get a video at some point during the trip because I am pretty sure any description I give here will not do them any justice.  On our walk today, crossing the street was not at all unlike playing a live version of Frogger, but we figured, if they don’t hit each other, it’s unlikely they’ll hit us.  So, as Elizabeth Gilbert loves to say, Attraversiamo! (Let’s cross over!)  Because, like a lot of things here, driving with your horn blaring is just another example of the ordered chaos that seems to exist everywhere.  But somehow, it works.  I just thank the moon and the stars above that, while we’re trying to sleep at least, so do ear plugs.  😉

Taking a walk around Green Park Market, Delhi

What is Love?

In honor of Valentine’s month, I offer you some thoughts on love I wrote at the 2008 SB Writers Conference after listening to Ray Bradbury speak on the subject:

What is Love?  Love is learning what is special to someone and then honoring that thing with your whole heart.  Love is creating, singing, and dancing in the name of another.  Love is finding ways to make the days easier when they are having a hard time, even if that means asking what it is they need or being silent.  Love does not make you feel guilty or ashamed.  It lifts you up.  It is smiling in the face of hardship, offering reassurance in the face of fear, and facing every challenge united.

What is Love to you?

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.

The Fine Line

The following is a journal entry from early 2007, about one year into our journey with Lyme:

“Are you ok?”

Leave me alone. “I’m fine.  Why?”  I’m not really fine, but how do you say I’m thinking about something I don’t want you to know about right now, so f— off? I just don’t think that would go over very well.

“You seem quiet.”  Duh.

“Is that bad?”  This is probably the seventeenth time he’s asked me if I’m ok this week.  I suppose I can’t blame him, seeing I am in a funk, brooding all over the house all day long like some live-action rendition of Jacob Marley, rattling my chains and moaning about.  I suppose I’m not really trying to hide my misery, but if he asks me one more time…

I’m not even really sure what that means anyway?  OK.  Quite frankly, I don’t think I’ve been ok since my dad sat my sister and I down and told us, while mom did her makeup in the other room, of course, that “we” were getting divorced.  “We” being the word of the day, as if my four year-old sister and I agreed this was the best course of action and would be asked to sign the paperwork before it was all said and done.  But that’s an entirely different story.

Today I’m fine.  Really.  That, or I’m really not fine but would like for everyone to stop asking me if I am and then tell me that I seem sad.  Sad?  Sad!

“I’m sorry.  I’m just thinking,” comes my usual response, but in my head I’m still talking.  I’m sorry that you see me as sad…Can’t I be sad?  Sad should be ok during everything that’s happening.  So let sad be ok for five uninterrupted minutes, will you?  I know you rely on me to fill the empty space, that you usually can’t shut me up.   I’m sorry that I’m sitting here thinking and not filling every spare moment of breath with words to distract you from your own thoughts.  I’m sorry that I can’t tell you what I’m thinking.  At least give me that little bit of space.  You don’t really want to know anyway.  It’d break your heart, baby, and I’m not ready to do that.  I don’t ever want to do that.  I’m sorry that I’m unhappy, but it should come as no surprise, really.  I’m just too tired to talk to anyone about it right now.  Please leave me alone.  I need peace.  I need to cry.  I need…  I don’t know…  Just please don’t ask me if I’m ok…

“You’re sure you’re ok?”  Aaaaaaggggghhhhh!  You have got to be kidding me!

“Yes, honey.  I’m fine.  I’m just thinking about my writing.  Now, let it be.”  I want nothing more than to be out of this room.  Out of sight, really.  I need time to crawl into the fetal position and cry my eyes out.  I need time to mourn.  I need to mourn and there’s not enough time and there isn’t a soul to mourn with me.

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!