Amy B. Scher’s “This Is How I Save My Life” is the true story of a fiery young woman diagnosed with late-stage, chronic Lyme disease whose journey takes her from near-death in California to a trip around the world in search of her ultimate salvation. This excerpt coincides with the book’s release in paperback from Gallery Books, an imprint CBS sister company Simon & Schuster.
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 disease, brain lesions, encephalopathy, arthritis, chronic inflammatory demyelinating polyneuropathy, fibromyalgia, 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, each playing a part in destroying not only my physical self but the rest of me as well: exposed nerves in my limbs ring with pain and no rhythmic pattern to warn when the worst would come; 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; joints so painful and swollen that rolling over in bed put too much pressure on my hips, and was impossible to do alone; unrelenting headaches that drill through every space in my skull; patches of skin so sensitive that it felt as if I were being dragged across asphalt naked. 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 on the unsteady shore, on 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. 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. Just two years before, I was mostly bedridden with pain in every inch of my body, in a semi-comatose state from heavy-duty medications, and dependent on near-constant care by others.
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. 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 semi-normal 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.
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.
Amy B. Scher’s “This Is How I Save My Life” is the true story of a fiery young woman diagnosed with late-stage, chronic Lyme disease whose journey takes her from near-death in California to a trip around the world in search of her ultimate salvation. The above excerpt coincides with the book’s release in paperback from Gallery Books, an imprint CBS sister company Simon & Schuster.