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