Thank you, India

Near Valentine’s, 2006, I sat across a romantic table from my husband of five years and watched him pick at his dinner.  He wasn’t hungry, he said.  His stomach was just bothering him, he said.  Maybe he was getting the flu.  We brushed it off as exactly that and went home slightly disappointed that the evening was ending early.  The woman I am now can look back, smile warmly, and even cry for the two young people who sat at that table that night.  They had no idea what was coming next.

For more than three months after, we were caught in a hurricane of fear and question, our voices lost in the storm.  Doctors who didn’t know what to test for, family who didn’t know how to help, and jobs that still needed tending to all contributed to the wind and noise.  No. 1’s symptoms changed daily, and he was crippled with fear, brain fog, and an inability to sleep.  He said he felt like someone had done experiments on his brain and put it back wrong.  I cried in my car everyday, turning all the possible diagnoses around in my head like marbles in my hand.  Tumors?  MS??  What was this?  I was convinced my beautiful husband was suddenly dying, and I didn’t know how to stop it.  I was terrified of being left alone.

And then I started having panic attacks.  I was a teacher with a lot on my plate, but I was also running my own in-home sales business, and doing poorly at either meant I would be disappointing a lot of people.  In my frantic state, I juggled all of it as best I could and held things together by a loosely tied string.  By the end of the school year, we were both exhausted, but No. 1 had done his research and finally succeeded with the right doctors in identifying his Lyme disease, and I had succeeded in earning a sales award trip to Aruba.

A brave face for a night out in Aruba.

We couldn’t really afford it, but we were so relieved to have a diagnosis and a list of actions we could take now, we took the extra time off from work and flew with an entire suitcase filled with IV poles and antibiotics to a sweet, friendly island where everyone seemed happy but us.  I literally dragged my husband out of the room for meals and walks by the beach under the moon, but in his miserable, nearly catatonic state, I might as well have been vacationing with a ghost.  We had a diagnosis, but he was far from better.

My ghost boy. (Aruba '06)

One of my friends we traveled with admitted feeling guilty about wanting to shake him out of it.  Welcome to my life, I wanted to tell her but didn’t.  When it became unbearable, on the second to last day, to sit in the darkened hotel room a minute longer, I slipped away by myself and into the ocean.  No. 1’s PICC line prevented him from being allowed in the water, and so it was my first swim since we’d been on vacation.  With the water up to my shoulders and happy couples swimming around me- clinging to one another, kissing, and laughing- I stood looking out at the horizon, allowing the current to push and pull me, and imagining what it would be like to be able to swim away forever.  The whole world disappeared in the copper glitter that flashed at the horizon, and I imagined doing the same.

People tell me how strong I am, ask me why I never left, and I would be lying if I said there weren’t times I thought about it.  I did.  So did he.  He told me so, and I thought it was for the saddest and most beautiful reason.  He wanted me to be free.  My husband loves me so much that he would untangle himself and his misery from me so that I could be happy.  (Yeah, he’s pretty great.  Crazy, but great.  How could I be happy knowing I’d left him behind to rot?)  And then I realized recently, I have exactly the same reason for staying.  I love my husband so much that I want him to be free.  Free to live a life that would make him happy, and this…sigh.  This is so not it.

By the end of ’06, No. 1’s symptoms and my panic attacks became too much, and I left my position as a teacher to become a cheerleader, mother, nurse, friend, and so on.  Since then I’ve changed No. 1’s IV dressings, reminded him to take his meds, went with him to his doctor appointments, cried with him, for him, around him, and away from him, dragged us to Vegas to celebrate ten of us turning 30, surprised him with weekend getaways to the beach, gave nightly massages, took my vitamins, started a book, won some writing awards, hired a personal coach, sought myself, hid under the covers, cooked a thousand half-hearted dinners, talked to a counselor, dragged No. 1 in behind me, slept, cried, worked two part-time jobs, sang at Disneyland, walked for cancer, drove to Seattle, made hundreds of new friends, worked out and walked on the beach, had a short story published, celebrated our ten-year anniversary, learned to surf, opened my heart, learned even more of the truth, and even learned to pray.  I’m sure there’s more, but you get the idea.  I have never given up.  And something inside me told me I could not allow No. 1 to give up either.  And if I left, he probably would.  (He told me that, too, but I knew it anyway.)  So, sometimes I pushed, sometimes I pulled, sometimes I tripped and it was only his ability to rise to the occasion that helped us to slingshot each other through the worst of times.  We are two stubborn little humans.

Now we are just a few months away from the end of 2010, and things have been changing for a while.  I began this year looking up from the bottom of a very deep hole.  The holidays with Lyme had been horrendous, and then No. 1 crashed at the end of January, and I thought I would lose my mind.  All of his symptoms were suddenly worse, and then he was experiencing anxiety on top of all the rest.  I walked the beach endlessly, hopelessly trying to breathe and searching for sea glass as though I were picking up the pieces of our shattered lives to somehow try to fit them together again.  I begged over and over in my journal for something to change.  I started to plan out ways we could move back to our hometown, so No. 1 could be closer to work and have more time to rest.  Anything I could do to make things even marginally better seemed at least worth trying.

My breathing space.

And then, one day near the end of last March, my husband and I were walking along an empty, pebble-covered beach around sunset when everything changed.  He’d been thinking about it for months now, researching it longer, and he was convinced.  He was done waiting.  He couldn’t do it anymore- the trying and waiting and failing to see anything good from the next treatment and the next.  He wanted to go to India.  He needed my support.  And he wanted me to come with him.  I kept walking.  I asked all the questions I could come up with, and when he asked if I was ready to turn around and head back to the car, I shook my head.  No.  Then I kept walking some more.  I needed to think.  Could we do this?  Should we do this?  And even more, how? But we hadn’t left the sand before I knew what I would do.

I have loved this brilliant and beautiful man since I was sixteen years old.  I adore him.  And he adores me.  And if the tables were turned, as I have so often wished them, he wouldn’t hesitate to do anything or go anywhere that might save me, no matter how scary or expensive.  India, Antarctica, or Hell, it doesn’t matter.  I know this without question.  And so we go.

And so we’re going.

We spent the summer continuing our research on and applying to the Nu Tech Mediworld clinic, and we will very soon both get on a plane headed for New Delhi, India.  It will cost us a small fortune and nine weeks of our time.  We will have to sleep in a hospital, 180 degrees around the world from home, get used to foreign foods, do battle with foreign bacteria, and manage to hold our lives together back home while we do it.  No. 1 will have to endure twice daily injections and the exhaustion that comes from the treatment and accompanying physical therapy.  (I will write a lot more on all of this later.)  But we leave with confidence, taking with us the testimony of one of the preeminent Lyme specialists on the West Coast and other Lyme disease patients like ourselves who are healed or healing, the love of our friends and family, and a renewed sense of purpose, hope, and wonder.

A Midsummer Night's Dream for a Cure

Fresco Feast

A month ago, I began planning a fundraiser to help offset the costs and was amazed at the roughly 200 people who came out to support us.  The Frameworks Caruso Woods Art Gallery provided the perfect space for everyone to nibble on the beautiful feast of appetizers and desserts that was provided by Fresco Café.  (Thank you, Jesse and Jackie!!)   By six o’clock, the band was playing, the room and the patio were packed and the raffle and auction were in full swing.  Family and friends mingled and reconnected.  People we went to school with and hadn’t seen in years brought their smiles and their good luck wishes.  Just days before, we were interviewed and photographed by the Daily Sound (Santa Barbara), and then found ourselves on the front page of Thursday’s issue.  Inspired by the article, even strangers were moved to come to the event and show their support.  One woman handed my mother-in-law a poem and then vanished.  Another man we didn’t know came to ask No. 1 if he had heard of the healing powers of Christian Science.  My good friend, Anna, who had never performed her work in public, wrote and performed a song just for us called The Leap and made us cry. Other dear friends played music into the late-summer twilight while we chatted with loved ones we hadn’t seen in years.  The love and the Two Buck Chuck flowed freely, the raffle and auctions were a success, and we raised $8,000 in one night.  Just  a week now before we leave, we’ve raised a total of $16,000- an enormous sum and a great help toward paying for the $40K treatment- and we know without a doubt that we are extremely loved.

Me and My No. 1 (and only)

For all of you who have had a hand in helping us to take this great leap of faith and to remember that there is health and happiness to be had in this world, thank you.  These two short words make a mockery of the gratitude and love No. 1 and I feel toward you and your families.  We remain devastatingly humbled by you and the depth of your support.  When we get on that plane, we will be taking each of you with us with the understanding that when we are weak or tired, we have those who would carry us.  And on the days we are strong, we have those who would celebrate with us.  That makes you our family.  Chosen or inherited, I don’t know how you thank someone for being family.

One thing chronic disease does to families, though, is separate them.  Pain is not a fun thing to share, and so it is easy to get quiet when things aren’t going well.  We are, however, technically still young and learning.  This year, we’ve learned a lot about speaking up.  People have been interested in our story.  Friends want to know how we’ve been, what we’re really battling.  And other Lymies want to know what we’ve done.  Over the last four and a half years, we have done little to talk about our experiences with Lyme with our friends and family.  We resisted the idea that anyone could understand the daily anger and frustration that is Lyme, a disease rife with controversy in political and medical fields and completely unpredictable in its symptoms and diagnosis.  Quietly, we have limped along, suffering through each day until it was over, and doing it again the next.  We focused all our attention on surviving.  But no more.

No. 1 and I have set our intentions on living again and traveling for treatments in India are an enormous testament to that.  We will no longer be satisfied with just surviving.  Nor will we sneak quietly away to avoid having to tell our story.  We feel no need to justify taking this leap of faith or our confidence in it.  We don’t even ask you to understand.  But we do feel a tremendous responsibility to share what we’ve seen and will see with those who would choose to learn and ask and maybe even lend a hand to those who need one.  With that in mind, I am committing to keeping you all up to date while we’re gone and answering any questions I can about our experiences.  I am still not an expert.  I don’t know everything about anything, and I can be completely honest and tell you I am scared to death about where this could take all of us.  But I do have an earnest desire to share our journey.  And I hope, now that you know a little more, you’ll decide to come along for the ride.

Daily Sound Photo taken by Matt Graves

“Thank U”

how bout getting off these antibiotics
how bout stopping eating when I’m full up
how bout them transparent dangling carrots
how bout that ever elusive kudo

thank you india
thank you terror
thank you disillusionment
thank you frailty
thank you consequence
thank you thank you silence

how bout me not blaming you for everything
how bout me enjoying the moment for once
how bout how good it feels to finally forgive you
how bout grieving it all one at a time

thank you india
thank you terror
thank you disillusionment
thank you frailty
thank you consequence
thank you thank you silence

the moment I let go of it was the moment
I got more than I could handle
the moment I jumped off of it
was the moment I touched down

how bout no longer being masochistic
how bout remembering your divinity
how bout unabashedly bawling your eyes out
how bout not equating death with stopping

thank you india
thank you providence
thank you disillusionment
thank you nothingness
thank you clarity
thank you thank you silence

-Alanis Morissette

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.

---

[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.

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.