This Is How I Save My Life: Searching the World for a Cure: A Lyme Disease Memoir - Softcover

Über die Autorin bzw. den Autor

Amy B. Scher is an award-winning and bestselling author of four books about human’ing and healing. She’s been featured in The Washington Post, Daily News (New York), Cosmopolitan, CNN, CBS, the Los Angeles Review of Books, The Rumpus, and more. Scher was also named one of The Advocate’s “40 Under 40.” Amy’s books have been translated into thirteen languages and endorsed by notable authors such as Elizabeth Gilbert (Eat, Pray Love); Vikas Swarup (Slumdog Millionaire); and Sanjiv Chopra, MD, MACP, Harvard Medical School (Brotherhood with Deepak Chopra). Amy lives in New York City with her beautiful wife and bad cat.

Auszug. © Genehmigter Nachdruck. Alle Rechte vorbehalten.

This Is How I Save My Life

1

Guts

DECEMBER 2007

WELCOME TO DELHI, INDIA—IF YOU DON’T PAY ATTENTION, YOU MIGHT LOSE A LIMB. A sign with these words is not posted anywhere upon our arrival, but it should be.

I could have also used a sign that offered GOOD LUCK! or, equally appropriate, one that read, HAVE YOU LOST YOUR ACTUAL MIND? In fact, the signs I need at my first point of entry into the country are endless.

I am twenty-eight years old when I arrive in magnificent India. I am here with my parents, an updated vaccine record, and a visa, searching for something I cannot find at home: a cure. In a tiny hospital on the outskirts of Delhi, a female Indian doctor is offering experimental embryonic stem cell therapy to patients from all over the world. That is what I have come for.

For the past seven years, my body has been falling apart, sometimes via a slow decline and sometimes like an avalanche. It has been my full-time job to try, mostly unsuccessfully, to put it back together.

My medical diagnoses seem too many to fit in my petite, five-foot frame: inflammation of the heart, autoimmune thyroid disease, brain lesions, chronic fatigue syndrome, encephalopathy, arthritis, chronic inflammatory demyelinating polyneuropathy, fibromyalgia, hypotension, adrenal fatigue, connective tissue disease, leukopenia and neutropenia, endometriosis, and, finally, the reason for them all: late-stage Lyme disease.

But the formal names assigned to my suffering do not begin to convey the actual experience of it. Over the years, there have been hundreds of symptoms, some visiting for only days at a time and others making a permanent home in my body. Each of the symptoms has had a part in destroying not only my physical self but the rest of me as well: fierce, full-fledged body aches making it difficult to move and unbearable to stay still; exposed nerves in my limbs firing with pain and no rhythmic pattern to warn when the worst would come; extreme upper body weakness that kept me from lifting my arms above my shoulders; bottomless fatigue so heavy it was too much effort to move my lips and speak; dangerously low blood counts forcing my immunologist’s insistence that I not leave the house; unexplained night sweats that drenched my bedding; cognitive impairment causing me to jumble my words; joints so painful and swollen that lowering myself to the toilet or rolling over in bed put too much pressure on my hips, and was impossible to do alone; light and sound sensitivity that made me afraid of the world; unrelenting headaches that drill through every space in my skull; bouts of labored breathing that had me gasping for air to take just ten steps; patches of skin so sensitive that it felt as if I were being dragged across asphalt naked; and debilitating, painful menstrual cycles triggering dangerously heavy bleeding. No organ or system of my being has been spared.

The intensity of my symptoms has ebbed and flowed, altered by slight relief from treatments and sometimes inflamed by them. They have risen and fallen as tides, knocking me over and stealing my breath, or sometimes, in their gentle mercy, lapping against me with only mediocre force. But always their presence is an undertow; a more subdued reminder that it is never safe to take my eyes off the unsteady shore, off my defenseless body.

I am missing a chunk of my left thigh from a muscle biopsy taken to study my nerves, have faithfully swallowed forty-four pills every day, have listened to the sound of doctors chiseling through my bone marrow to look for clues, have seen all the best experts at the top institutions in the United States—from the Mayo Clinic in Minnesota to Northwestern in Chicago to the University of Southern California, and beyond—hearing the dreaded words over and over: “We don’t know how to fix you.”

I have suffered through experimental IV medications, rigorous physical therapy, almost a hundred hyperbaric oxygen treatments, self-administered daily antibiotic injections, countless medications, far-reaching alternative approaches, and life-threatening side effects worse than the original symptoms. Doctors often refer to me as a mystery.

By the time I land at Indira Gandhi International Airport in India, for what I believe is the very last thing on the very last list of things to try, I am thankful to be a bettered version of who I once was, during my worst days on this earth. Just two years before, I was mostly bedridden with pain in every inch of my body, in a semicomatose state from heavy-duty medications, and dependent on near-constant care by others.

In my somewhat rehabilitated stage, I feel a little bit repaired, like the first time after an epic cold when you are grateful just to breathe from at least half of one nostril again. I try to be thankful for what I do have. I can function at the most basic level of taking a shower and leaving the house, but I haven’t been able to work in years. My life is small and square. Still, I am living. In order to do so, I need a constant barrage of narcotic medications, nerve stabilizers, and antianxiety medications to try to control the symptoms that remain: excruciating systemic nerve pain, paralyzing fatigue, a broken immune system, heart complications, and the weight of an illness that feels heavier than my whole body. I have perfected the dosing and rotation of my prescription medications as a temporary way to experience a fragmented life—even, at times, a joyous one. I try to convince myself that where I am now is “good enough.” I keep my eyes glued on the bright side: that I am walking, talking, and driving again; that I live on my own; and that, even though things are not perfect, I am better than where I’ve been before. But the real truth is that I’m still a mother-freakin’ mess. Although looking at me, you might not know anything has ever been or is still so seriously wrong. I style my wild, curly hair every single day, I paint on my makeup, and I fake being seminormal in the very best way I can.

Inside the places that no one knows but me, my heart is split in a million pieces because I am a human being who is lodged in the in-between—in between living and dying. I want to be better than “good enough.” If I don’t move the goalposts for my own life, who will? I want not only to stay alive, but to be alive, to lead a life. I am more afraid of living in this condition forever than I am of dying from it.

I am also alone—partner-less—for the first time in eight years. I am struggling to adjust to life without Jay, the man who took care of me, but also to whom I carelessly gave away all of myself.

Because of all this, I am here in India. I am ready to let everything go and trade it for a life. I am here to get the cure. I am also here to gather the things I have no idea I need, but that is totally unknown to me at this moment. I am here, maybe somewhat irresponsibly, to risk my own life to find it.

It was only three months earlier, as I inhaled the sweet smell of sugarcane in Maui, that I first heard about this highly controversial treatment, which might give me the life I was looking for.

I had just finished a grueling Lyme disease treatment in Chico, California, a small Northern California college town dripping with greenery and hippies. That’s when my parents sat me down on my brown tweed rented couch, next to my rented TV in my newly rented apartment. After I’d left Jay and, with him, almost everything I...