by Amy B. Scher
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 what
ever 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.
