My return home from India in February 2008 will be one of both rapturous joy and absolute uncertainty. Lauren has offered something that only the most generous of sisters would: for me to move in with her, Craig, and Zach in Monterey Bay, California, a city by the sea. I accept gladly. Zach is now a full-fledged toddler, and he and I make up for lost time by doing everything together. We visit playground after playground and have deep conversations over sushi about why restaurants make their tablecloths white. I can run multiple errands at once without getting fatigued. I don’t trip when walking on uneven terrain. I don’t trip at all. I take only a few medications. I feel free as a bird.
I will also survive a handful of lows—medical tests that shake my confidence, reminding me I’m not invincible; coming face-to-face with fears about my life and my future; and continuing to struggle with being patient and kind to myself, which still doesn’t come so easily. The doctors think that I’m likely over Lyme, but still consider me an experiment. No one knows what to do with me or how to ensure I’ll retain all the improvements I’ve gained.
In July, almost six months after I left, I return to India—my beloved nemesis and best teacher. Both the hospital and I look different. The lobby has gotten a serious face-lift—modern black faux-leather chairs have replaced the old wooden furniture, and the rickety reception desk has been upgraded to a sleek modern one that is double the size. As for me, my hair is a new and darker shade of blond and I am now comfortable wearing only minimal makeup. I have also gained twenty healthy pounds since my first trip here, which does not go unnoticed. “I like this. I reaaaally like this!” O.P. keeps repeating through his sparkly teeth. The sisters run toward me, spin me around like a doll, and puff out their little cheeks. “You look fattened!” Sahana shrieks, then quickly follows with, “This sooooo niiiiice!”
In many ways, this trip echoes the first. I take more antibiotics to protect my cells, my emotional and physical stability is sometimes questionable, and India continues to teach me my greatest lesson—that every day is a swinging pendulum between saving your life and enjoying it. It also delivers added improvements: clearer cognitive abilities (I finally have the concentration to read an entire book!), less light and sound sensitivity, more strength, and increased endurance.
When I bid my last farewell three weeks later at Indira Gandhi International Airport, I intend to let my ten-year visa lapse and never choke on the city’s pollution again. It is a chapter closed. But the assumption that I have kissed India good-bye for a final time only proves my stupidity. If there is anything India has shown me, it is that it will do with me what it pleases.
The remainder of the year is a heady mix of emotions and adjustments. I have no real place in the world. Everything needs to be re-created. I can see so far ahead, and yet not anything at all. Sometimes I revel in the freedom of being able to float without direction . . . there is nothing to do or be right now. But then the vast emptiness of it becomes luminous and scares me.
Instead of allowing this emptiness to intimidate me, I decide to say yes to filling the space of it. I think that’s how rebuilding is done. So it’s exactly what I do: I start saying yes.
My first yes comes during my birthday month of September when I drive back toward the life I ran away from and ask Jay to join me in attempting some version of closure. It doesn’t feel right to close this chapter on illness without letting him close it too. We head back to my favorite town of Ojai, with its abundant trees and rose-colored sunsets; and the place where I believe I was bitten by that tiny tick. Since our breakup, the strain and sorrows between us have been heavy; so much so that we hardly spoke while dividing up our belongings and differences. But on this day, as we stare at the deep, sprawling crevices of a strong and sturdy symbolic oak tree, it is all unity. Jay photographs the moment and cheers while I sprint around it, as many times as I can, leaping over bushes with an energy all its own. Bob bounces behind me the way dogs do, unsure of what he’s celebrating but joining in for the pure love of it. I see Jay wipe his eyes behind the camera as I stomp all of those unpleasant memories back into the earth, as hard as I can, and put them to rest.
My next yes comes in December 2008, a year after my first trip to India, when Dr. Harr asks if he can test me again to see if I am now Lyme disease–free. “Yes!” I say. The test comes back after two long weeks of waiting, and when it does, it replies, “No.” No, you are not clear. No, you are not perfect. The test is positive for Lyme disease. And even though all the doctors tell me not to panic, I do. They explain to me that sometimes this happens when your body finally recognizes a disease and is fighting it. This could even be a good thing, they reassure me. But the panic isn’t because I may not be free of Lyme disease. The panic is because I have to tell this to a lot of people—all the people in my life and all the people following my story and my blog. I want to hide this new information, let nobody see me naked in this way, and bury the test results very far down somewhere deep in the ground. But instead, I do the opposite. I tell people. I write it on my blog. I bare my soul. I say yes to being human, and doing it publicly. It’s the hardest thing I’ve ever done in my whole life and will take much practice for me to become comfortable with it. But what I realize at this point is that maybe I’m not destined to be a Lyme disease superhero or a stem cell poster child or any kind of inspirational figure at all. Maybe I’m here for what we’re all here for: to show each other that it’s okay to be human.
Next it is time to say yes to the fact that adjusting to being healthy is harder than I thought it would be. This is all I’ve wanted, yet the feat of rejoining a world that I’ve missed out on for so many years is overwhelming. How can I catch up now? What’s next? How will I get a job again with such a huge gap in my work history? Where will I live when I move out of my sister’s guest room? How will I ever afford it? Can I find a partner who will accept all of me? I want to stretch out completely into the world, yet I am still tied to a brain that’s acclimated only to a life of illness. The doctors’ voices are in my head, telling me not to get stressed or catch a cold or the flu, because it could cause me to relapse—a common occurrence with Lyme patients. Am I safe? Can I enjoy this luxury and freedom of my improved health? Will it all slip away when I’m off having fun and not looking? What if it happens again? What if it is already happening again and I just don’t know it yet? I am always either afraid of life with illness, or afraid of life without it.
But I think it’s important to look at every stretch of time in our lives as a whole, and to identify how we feel most about it, most of the time. When I add up everything that happens during this stretch of time after India, including when things aren’t total perfection, I can still identify my primary feeling about it: thankful.
My final yes for 2008 comes when I am asked to speak about my stem cell experience to a roomful of resident doctors at Stanford University. All eyes are on me in my high heels (yeehaw . . . heels without tripping!), tight jeans, and silk button-up top. With the lights above me humming, my nerves take over and I forget the opening line of my speech. What comes out of my mouth instead is this: “I wish you could have seen me one year ago today.” It is this moment that will kick off a grant project, created to study the benefits of stem cell treatment in Lyme disease patients. While the grant will never end up being funded and approved, the invitation to work on the project will take me back to India the following year for one final yes.
It is during my third trip to India in March 2009, full of street smarts and feeling like a native, that I convince myself it’s perfectly fine to eat a succulent tandoori shrimp lunch from a food cart. It turns out I do not have the stomach of a native. When I am predictably struck down with Delhi belly, I am forced to extend my trip for another five days, staying at Nutech Mediworld at the insistence of Dr. Shroff. This city was not done with me yet.
A few days later, down in the physio room, I am finally just a visitor and no longer a patient. It’s there, amid the loud Hindi music that is beating through my entire body, that I see Charlotte for the first time. Her brown curly locks are peeking out from under a Kelly green baseball cap. She is visiting her mother, Janet, a sweet British woman I had met while recouping at the hospital. Janet is around fifty years old, and almost doll-like, with fair skin, pink cheeks, and lilac-painted fingernails. She has ALS (Lou Gehrig’s disease) and is here hoping these stem cells are the miracle she needs. For the past few mornings, I have been visiting with her as she excitedly counts down to Charlotte’s arrival. Janet adores Charlotte and has promised me that I too will fall in love with her. She paints a dreamy picture of us jaunting through the city together, lunching, and forming a fabulous friendship.
Charlotte is magnetic, quirky, and energetic, a film trailer editor from London with the most brilliant British accent. Whatever she says automatically sounds a hundred times more special because of the way she says it. And just as Janet predicted, I actually do want to lunch with her. She is the wittiest person I’ve ever met. She is so funny that when she makes me laugh, I involuntarily throw my head back. We go on adventures each day together, for three days in a row. Sometimes it’s just for tea. Sometimes it’s to wander the streets, where we see random peacocks or cows, and discuss the hopes and horrors of India. When she comes back to my hospital room to hang out, I ask her to take her shoes off. I want her to stay awhile. Charlotte is not just a new person to me, but a whole new kind of person to me. As I learn more about her, I only become more enthralled. Her latest work project is Mamma Mia, she lives in an old match factory in east London, she’s gay, The Sound of Music is pretty much her favorite thing ever, and she loves the smell of fresh cut grass. I have never even noticed the smell of fresh cut grass. I find out that she already knows about me, because she has been following my blog. Which means she already knows I’m human. I can’t decide how I feel about this, but it’s too late anyway.
On our last evening together before I go home, Charlotte and I sit on the steps of the hospital, deep in conversation. I am not sure how I will live without our daily walks and shenanigans. I am also not sure how I have become this intrigued by someone in such a short period of time. I want to never stop seeing her. I want to melt into her.
I am in love with Charlotte.
I sit with this for a moment, but I don’t let myself panic. I tell myself I am probably wrong, even though I know I’m not wrong at all. And then I think, No, no, I am not wrong I am in love with Charlotte. This is perhaps my biggest yes, because even though I don’t yet tell her what I’m feeling, I say yes to telling myself the truth right when I know it. It is about time.
Charlotte is my coming home. It is not because she provides for me what I need in order to be happy or what I cannot provide for myself. It’s because she says in every single way, I accept you. And this helps me continue to say it to myself. There are no parameters or consequences. We are equals. That is the story that Charlotte tells me about myself. With Charlotte, I want to love with my emotions wide open, even though it is terrifying.
Some of my family and friends are in shock, asking me, “How does it feel to be with a woman?” and sometimes, “Are you totally positive this is what you want?” But the thing is that this feels like nothing out of the ordinary. It is easy and right. Sometimes these questions make me think that I should be concerned and maybe even go to therapy to figure out what this really means about my past relationships and myself. But thankfully, by some miracle, and in a complete deviation from my usual MO, I end up not making this into something it isn’t. I don’t psychoanalyze the situation. I dig deep for the real feeling inside of me, which is this: It is love. The end. No more discussion. I am not worried, confused, or inquisitive about my sexuality or what this means in the scheme of my entire life or past. Because this is only love. And love, on its own, before we start to pick it apart, is really quite straightforward.
I am visiting Charlotte in London’s bitter cold December when the already dark winter dims the lights on us. Janet is home from India and getting weaker despite two trips for stem cells. I visit her during the day while Charlotte is at work, showing her pictures and videos of Zach, who is three, and growing like a weed. Janet can’t speak at all now, as the disease has progressed to its final stages. I fill the air with long, drawn-out descriptions of what I plan to make for dinner and stories from back home, trying to distract her from what we all know is coming. The last day of Janet’s life feels like when someone is trying to leave a house party, but people keep pulling them back and stalling their departure. She is, unfortunately, not the recipient of the stem cell miracle she had hoped for. No one is ready for her to go, except for her.
It is Christmas Eve and there is snow on the ground when I call my dad from the hospital. Despite his own issues, he is always the person everyone runs to first in any kind of crisis. I think about some of the late nights when I’d called him before: from a road trip I took in high school where I accidentally drove three hours in the wrong direction, from the community college where I took my first night class and couldn’t find the classroom, and from my couch when he didn’t show up for our weekly date night to watch ER (don’t worry, he had just fallen fast asleep in the bookstore). I hear his voice and am instantly relieved. Partly because I need my daddy now, and partly because lately he’s been struggling more than ever. I don’t know how much longer he can take this, my mom has messaged me a few times recently. I feel like he is serious about dying. And by dying, she means taking his own life, because after decades of dealing with this, taking his own life is what he talks about when he’s having a very hard time. This will pass as it always does, I have been telling myself while I’m thousands of miles away. But there is always that one thought: What if it doesn’t?
“I think Janet’s gonna die soon, Daddy,” I sniffle into the phone, trying to shelter my whimpers from the nurses’ station beside me.
“Do you know what it’s like when someone dies?” he asks. “I can tell you if you want so you’ll be ready.” I shake my head no because I can’t speak through the knot in my throat, but he feels my answer.
“Death is not bad, baby,” he says. “It’s usually slow, less dramatic than you’d imagine, and it’s one of the coolest things to ever witness—to watch a human being’s suffering become peace.” These things he tells me are all I need. I am ready. Death is not bad, baby.
Shortly after, Janet lets go. That’s when I realize that, for maybe the first time ever, I did not do what I have always done: fight against the current of what is, or search around for one more eleventh-hour cure. Instead, I trusted that death is not bad, baby, and when she let go, I let go with her.
We bury Janet just days later under sheets of pounding rain and black umbrellas. It feels like the darkest day of winter because she is gone, but also like the verge of summer, because she is free.
I am still in London in the new year of 2010, when I feel the rumbling of an internal earthquake. I begin to have pain and tingling in my feet and waves of fatigue; my heart races, the deep and constant whole-body aches of my past return, and I’m nauseated no matter what I eat. These are the same symptoms that appeared in 2005, at the beginning of my career as a full-time sick person. I’m also having a flare-up of endometriosis, a diagnosis that came long before Lyme. I’ve already undergone five surgeries for endometriosis, and still survive my menstrual cycles only with narcotic pain medication and trips to the ER.
At first, I try ignoring these signs of my world shaking. Ignore and it does not exist. But the earthquake persists. And a few weeks later, because I am finally learning that ignoring things just never works, I go to the doctor. He admits me to the hospital, and after two days of tests releases me with those infamous words: “We don’t know how to fix you.” After that, I find out that I have an unrelenting case of Epstein-Barr virus, my food allergies have returned, and the complex coinfections that often accompany Lyme disease are back. The Lyme itself is absent—for now—and I am nowhere close to where I once was, but I’m definitely headed in the wrong direction.
This is the elusive relapse I’ve been running from, even though I refuse to call it that. Because no Lyme was detected, I’ve convinced myself that it is not a relapse at all. But alas, something has finally caught up to me. My heart falls into my stomach. I am flooded with fear, consumed by overwhelm, and mad as hell. The doctors are worried about what to do for my menstrual cycles that are causing more pain and fatigue with each month, my immune system that is depleted and dysfunctional, and my body as a whole, which is on a rickety trajectory. But there is only one question that I am concerned with right now: How in the world did I end up back here again?
• • •
Dear Daddy,
It seems silly to write in your obituary guestbook, as if you are reading it. But I can hear you saying, “How the fuck do you know I’m not?” so I’m gonna roll with it. Being without you has been, in some ways, the hardest time of my life. Every time I want advice, I almost pick up the phone to call you. Every time I learn something new, I reach again. Every time I just miss you, I have to figure out another way to make you hear me. Oh, this is going to take a lot of practice. . . .
There were so many things that made you one of the most incredibly special people in the Universe. When you asked someone a question, even just a “How are you?” you asked it with true curiosity. When you did something, you did it well no matter how many hours or repeats it took to get it just right. After you learned something interesting, you couldn’t wait to share it. You tinkered with little things none of us would bother with. You reached out to strangers without hesitation. When something was funny, you told the story over and over, laughing with your big belly laugh as if you were experiencing it for the first time. When you loved someone, you told them.
Although I have struggled immensely with hating that you had to suffer so much in your life, tonight I finally came to something that brings me complete peace. Because of, and in between, your times of suffering, you experienced a level of joy that most never even touch. The good days were better than life. When you smiled, it illuminated the entire space around you. And when you loved, you made people feel it better than anyone else I know.
There is no doubt I will continue to miss you every single day, but what you have left me with says more about you than perhaps anything else. I have the most incredibly strong, fun, and loving mother in the world, an example of marriage and love that has made me settle for nothing less, and siblings I could not imagine being without. Life will be different without you in it. But it does not have to be all about what we lost when you left. What I have gained from being your daughter are genuinely the most beautiful gifts of yourself.
And for the times I need a little more of you in my life, I have your beautiful treasured camera, which I will constantly pull out, taking more pictures than any one human might need of a single thing, just to get the right shot.
Love,
Your Favorite
• • •
CHARLOTTE AND I are living together in our waterside apartment in Los Angeles when I write these last words to my dad. It is early 2011, a few days after his death and one week before my mom’s sixty-fourth birthday. We decide not to cancel the dinner party we’d planned at her favorite Indian restaurant, because life is still going on and we have to remind each other that we need to go on too.
The day of the birthday dinner, I make a quick run to Hallmark to find the most special birthday card out there—the one that attempts to make up for your husband dying and your kids possibly bawling through your party. When I leave the house and the safety of our family vigil, I feel raw to the real world. The grief of losing a parent feels like far too much to be contained in any human’s body. The sadness is coming in currents that pull me under, even though when I sit and do what I always do—identify my primary feeling for every stretch of time—it is still relieved. Dad is no longer suffering.
When we head out to the party that evening, on the way to the car I see blackbirds circling high in the sky. I watch them just as they did when they stopped us in our tracks at the Taj Mahal, and again, more recently, when the coroner came to take Dad while the rest of us huddled in the backyard to shield ourselves from the sight. He is gone, but I can feel now that he is also here for it all. Mom stretches her arms out to the sides, as if walking on an invisible balance beam, unconsciously spreading her wings. It feels like the most vibrant pieces of her that went missing when Dad got sick have already begun to return. She is already going on.
As for me, I’m still in limbo.
The episode with my health in London has turned out to be a shadow of what used to be, showing up once again. So I am doing more of what I’ve done before—taking tinctures and supplements—even though it’s clear by now that it isn’t a very effective long-term solution.
At the same time, my periods are continuing to get worse. Each month brings days so painful that I’m doubled over and can’t function. The fatigue is all-consuming and lasting more of each month. My doctors not only worry that this is causing stress on my immune system, but they tell me it’s a deeper message from my immune system. Something is not right. Because the impact of my periods is posing such a risk to my body as a whole, I have decided on something drastic: a procedure called endometrial ablation, which will destroy the lining of my uterus and cure this disease so I never have to face it again.
But there is still the rest of my body to deal with.
While I am not as sick as I once was, I see at this time that I am not healed either. And what I really want, no, demand, is to be done with illness and go on with life.
I have trekked halfway around the world, gone to the best experts, drunk every concoction known to man, allowed healers and specialists to place their miraculous hands upon me, and spent hundreds of thousands of dollars that my family so lovingly scraped together for me. I eat organic foods, protect myself from toxins, and am hyperaware of everything and anything that could impact my health. But this has simply not been enough for complete and permanent healing.
This harsh realization leads me to an epiphany so grand that it almost blows my head off: If treating the body doesn’t resolve the problem, then maybe the body alone isn’t causing it. Which means maybe, just maybe, the problem isn’t my body . . . it’s me?
That’s when, from somewhere in my brain, stored in a folder labeled Come Back to One Day, those once-resisted words of Dr. Shroff’s show themselves to me. The words are lit up. They are on-screen. They are in all caps. They are: YOU CAN HEAL YOURSELF. This is no longer just advice from a doctor. These words are truth.
And just like that, I decide I will try, try! as Rohit always encouraged me to do. It is time. I put the tinctures, supplements, and medications away. I cancel my planned endometrial surgery. All the treatments have only bought me time. I have to save my own life.
This idea terrifies me—but instead of ignoring it, instead of running away, I listen. Because running away—from my feelings and often away from the truth of my life—has to come to an end. It has to come to an end because I finally understand that this is what’s been making me sick.
I start with just that, even though it is only the tip of an iceberg that I can’t sense the size of. It is enough for the moment. The many things I discover next won’t come to me all at once, in a tidy package delivered by the Universe the way I want them. They will come slowly, intermittently, like stops on a train where miles and bends have to be conquered first.
I begin by reading, researching, and soul-searching. The pain of missing my dad is often overwhelming, distracting, deep, and inconsolable. I want him here so badly now, to have conversations about what I’m learning, to ask him what he thinks; but mostly, I want to know if any of what I need to know now is the same thing he was always missing.
What I discover is this: Our physical bodies are the sum of our lives. Our lives are the sum of our thoughts, beliefs, and emotions. When we suppress our emotions, it can create stress on the physical body, causing emotions to show up as physical symptoms. This is how our body communicates with us, by using its very own language.
I also learn that when we change things that aren’t working on the inside, the outside will change too. Yes, I am thinking. Yes. There is no mind, body, and spirit as separate entities. We are all mind-body-and-spirit. I have mostly come to this conclusion not by some vast willingness to subscribe to it, but by a basic process of elimination. It’s the only truth left.
This is when I begin to see my body as more than the rebellious, resistant deterrent to my hopes and dreams that I took it for. My body is the ultimate secret-keeper of what’s going on inside of me. In fact, my body is perhaps the only bold-faced, consistent truth teller in my life. And the truth my body has been speaking through all of its symptoms is this:
You are not being you, therefore this home is not for you. Get out. Please leave. You are Goldilocks trying to live a bear’s life. Nothing fits and nothing is working because you are not a bear. Find the real person who lives here in this body, this home, and bring her back. Then I will be happy and so will you. Goldilocks could not live happily ever after until she found her own place in the world. And neither can you. Find the real person who lives here in this body, this home, and bring her back.
As if someone is slowly unblindfolding me, I begin to understand why I have not been the real me.
I have been afraid of so many things. I’m afraid I’ll never really be well (and that it’s not up to me anyway). I am afraid that I will be totally well (that it’s all up to me). I am afraid of trusting myself. I am afraid of making mistakes. I’m afraid of people being upset with me. I am afraid to relax. I’m afraid of my own truth. I am afraid of living in a world that feels too big and scary to protect me.
I am afraid of a million other things.
But mostly, I’m afraid of showing my feelings. I am afraid of my feelings. I am buried under them. And this has caused me to stifle my humanness—which, it turns out, is 100 percent of what I am made of.
It is impossible to be me, like this.
What I realize next is that I have needed illness. I have needed illness because it has protected me from all the things I don’t feel brave enough to say, feel, and be. It’s easier to be sick than to say no when that’s what I want to say. It is easier to be sick than to try to be perfect. It is easier to be sick and buried under emotions than to feel them. This is perhaps the hardest reality I’ve ever had to accept, because who runs around the world looking for a cure if they really don’t want it?
Me.
At first, I worry that this means that being sick has been my fault. But the truth is, illness is not my fault, and even if it is, who cares anyway? Because if I want to get better, it has to be my responsibility.
Being sick does not come from failing, or from any failure on the part of those around you. It comes from being human. And sometimes, shit just goes sideways. We get cracked. But it’s clear now that I’m going to have to find the glue for all my cracks. I’m going to have to learn to feel all the damn feelings when I need to feel them. And I’m going to have to learn how to let them go.
Yes.
The process of releasing all the old emotions and unhealthy patterns that have been entangled in my body becomes a journey of its own. It will not be quick, but it will become the turning point for everything I’ve been working toward.
I start with some of what I already know from India. Nam myoho renge kyo Nam myoho renge kyo Nam myoho renge kyo. I am chanting to bring my wise self, my inner Buddha, out. I am chanting for miracles. I also discover some new methods so that I can release stuck emotions from my body, such as the Emotional Freedom Technique, working with my chakras, and clearing unhealthy patterns from my subconscious mind (it turns out it was pretty muddy in there). I even create some of my very own tools. I do whatever I can to let everything out. What I’m doing is working. All of what I’ve been holding on to is falling out of me. It is sometimes painful, but it’s not difficult or complicated. (P.S. I tried yoga again. Still hate it.)
After just several months, I begin to sense a sturdiness inside of me that I’ve never had. I am less afraid than I’ve ever been. I am more relaxed. I start being kinder to myself. When I make a mistake, I forget about it. When I call myself a name, I stop. When I am upset, I share it, even though showing my insides is still not easy for me to do. Maybe most important, I am getting so good at being with my feelings. I do not ignore and persist. I listen. And I do it without too much judgment.
I am becoming me. It’s getting easier.
Yes.
My physical symptoms start to fade ever so slowly over time. My periods start to get better and I decide to keep my uterus indefinitely. My legs are strong and never tingle. I have more energy. I can eat every kind of food again without any allergies. My lab tests come back with less and less wrong and more and more right. I catch a cold and do not relapse as doctors warned I would. I am not swallowing pills or running around the world to make this happen.
And then, one day, all my lingering symptoms are healed. I am keeping this boat steady . . . for real this time! I may never be pristine and perfect, but I don’t care. There is no more hiding me. I frequently skip wearing makeup, change my hair color and style with my mood, and allow myself to cry more easily and more often than I have ever cried in my life. I say no when I want to (at least, most of the time). Sometimes I eat too much pizza, lose complete Zen-like perspective, and forget everything I’ve learned. But I am healthier than ever before, because I do being human so much better now. In fact, I am finally not just doing it, but embracing it.
It is true what they say, that you can never go back in time and change your life. But you can always go back and heal anyway. Little by little, I found myself and I brought her back. I aligned her fully with my heart and all the ways I knew I was meant to live. I finally saw that all my struggles turned out to be more than just years of suffering; they were a metamorphosis into that which I was always meant to be.
The actual stem cells have become a smaller part of my story than I ever imagined they would be. In the end, they were not the singular cure, but the catalyst for my ultimate healing. They led me to India, where I had to struggle in ways I never had, in order to grow in ways I didn’t know existed. I needed to feel alone in order to find my connection to myself and who I was in the world. I had to be misunderstood so I could learn detachment from how other people received my expression. I had to be forced away from obsessively focusing on my symptoms so I could see how life shifts as you shift your focus. Somewhere in between the time I arrived in Delhi and the time I left, I went from an existence committed to killing Lyme to an existence committed to healing me. I had to acknowledge the parts of me that were saved when I stopped fueling the war on Lyme—for I was throwing the energy of that fight into my very own body. I had to learn to squeeze my eyes shut tight, feel safe in the dark of my life, let go, and trust. And I needed to go to India to collect those words from Dr. Shroff so I had them when I needed them most. Arguably, this was just as important for me as any kind of treatment.
All of this was unseen while I was deep in the valleys of illness and despair; but when at last I found my way to the peak, and the dust of my own trek settled, the entire picture became unmistakably clear.
My beautiful, bold, life-changing adventure in India could take me only so far. The rest was always up to me.
Yes.
• • •
IT IS IN the hammering rain of October 2011 that I glide down the aisle in my white lace wedding dress. My feet are bare and my toes are painted sky blue. From the deck of this old red barn, you can see the rolling green hills of Massachusetts dotted with the radiant hues of fall—scarlet, crimson, and mustard. Mom and I cling to each other as we make our way toward David. He is standing at the front to officiate the ceremony, fulfilling the honor that Dad had planned to do. Zach is the most handsome ring bearer, and his little sister, Emma, our new niece, is the perfect flower girl.
I turn and face the crowd to see Charlotte coming toward me, escorted by her aunt Val. Charlotte’s blue Converse sneakers pop out from under her dress and match the polish on my toes. Bunches of simple lavender, Janet’s favorite, are wrapped in burlap for our bouquets.
Inside the barn, twinkle lights and dinner are waiting, while a henna artist paints the spirit of India onto our guests’ hands and feet.
“Hey, Mama, did you miss Dad tonight?” I ask her, holding a blueberry beer in my hand. And because we are safe in each other’s truth, she doesn’t have to think about it.
“No,” she says, with slight surprise. But I don’t miss him either—I think because he is here.
When the last guests have been kissed good-bye, our family sloshes through the wide-open flooded field and out to a massive stretching tree. The moon lights the way. Under that tree, with its hovering branches and strong, solid trunk, we blow Dad’s ashes from our damp hands into the air and I watch them float for a long moment.
My life feels as wide and high as the sky.
As we gallop back to safety, to warmth, and to our new version of family, I feel my feet sinking into the wet grass. My heart is beating so hard it is in my throat. My beautiful wife’s hand is wrapped around mine, and the laughs of our favorite people are echoing all around us. In this moment, and in a million different ones that will come after, we will continue to remind each other that life goes on, and we do too.
In the years to come, with my bride beside me, these strong feet of mine will travel to many extraordinary places—to the blissful beaches of Mexico, back into the sacred hills of Ojai, across the roaring red sand of South Africa, and through the sun-drenched cobbled streets of Italy. Sometimes Dad will travel with us. The dust from his ashes will gently drift from a bridge over the neon Las Vegas strip, settle beneath a tree outside his favorite camera store in San Francisco, and slip through the gates of Buckingham Palace in London. One day, David, Tatiana, and Mom will carry him back to India and set him free in the holiest of all places: the Ganges. From a small boat off the banks of the river, they will participate in a traditional Hindu ceremony where the ashes of the deceased are released so their souls can be transported to heaven. But that will not be his only resting place in the land he loved so much. He will also be memorialized outside Nutech hospital on a concrete wall containing an imprint of my mom’s hand and a pinch of his ashes. Mom’s love of India will remain strong, bringing her back there six more times, with who knows how many more trips to come.
Little did I know that my trip would also inspire dozens of Lyme patients to follow my footsteps to Delhi. For some, the improvements would be vast. For others, there would still be much more work to do.
What I could never have imagined is that today I would be sharing with so many others what I traveled so far to learn: that you can find parts of what you need in a million different places, but you always have to come home, to yourself, for the cure.
People ask me the hardest questions I’ve ever had to answer. Now that you know what you know, could you have healed without antibiotics? Without stem cells? What would you say to someone who is just starting?
There is no perfect answer, but my truth is this.
In the end, you can’t dissect your life and pick out what you could have lived without. The epically hard and beautifully brilliant moments I experienced in my search for a cure could not, for me, have unfolded in any way but exactly as they did. I didn’t need any of it, but I also needed all of it. I was so comfortably uncomfortable in my life that nothing inside of me would have changed until it felt like the whole world was caving in and no one was left to save me except me. The growing and stretching and sometimes wailing into the dark black sky had to happen for me exactly as it did. It laid the sacred groundwork for the rebuilding of my soul. India was not the beginning and it was not the end. India was only the place that I collected more of the pieces.
Saving my own life was not a single act of courage nor a random act of desperation. It wasn’t even, in the end, about attaining perfect physical health. It was a long, slow, burning, uncontrollable yearning to simply meet myself once again.
Sometimes you make healing happen with the strength and sheer will to survive; and sometimes you do it in the quietest moments when you feel like you are doing nothing at all. You do it by saying yes to the ugly parts of you that you wish you didn’t have, reminding yourself to let go let go let go, harnessing your inner Ganesha when obstacles arise, telling yourself all of the truth all of the time, repeating the I’m good enough story when you feel otherwise, extinguishing your brain on fire, trusting that when you know you know, and remembering you can always get off the mat and begin again. Sometimes, if you’re lucky, you’ll even find some surprise inflatable chocolate cake to get you through. There will be days that you’ll prevail as the hero of your own story, and nights when you’ll barely scrape yourself up off the floor. But you must take it all as necessary steps and proceed.
Keep asking the questions that point to the truth of who you are. When you hear the answers, listen. This is how you own your story. This is how you transform who you think you should be into who you really are. This is how you become the path you’ve been waiting for. This is how you do it. This is how you save your life.