Not If, When : Lyme Disease in Verse

Written for anyone who has been affected by the invisible yet wildly destructive path of chronic Lyme disease, this collection of poems is a ray of sunlight to be basked in on the most rageful and grayest of days.

Even the most integrative, supportive doctor can only do so much for an individual during the worst period of healing from Lyme. The process looks different for everyone, but a patient must feel significantly worse before they begin to recover. When Lyme bacteria (or other coinfections) are first attacked by antibiotics, herbs, or other treatment, they release toxins into the body quicker than they can be dispelled. This is called a Jarisch-Herxheimer (Herx) reaction, and it can often include panic attacks, brain fog, paranoia, depression, pain, affected vision, racing heartrate, dysfunctional thyroid, disrupted digestion, severe confusion, and amnesia among many other symptoms. Herxing, in other words, is a complete—and sometimes seemingly unending—nightmare.When you’ve fretted about that frustrating doctor all night and Herxed all day, these autobiographical poems may go down smoother than a pill. Arranged chronologically in the order that they were written, they move from devastation to determination, addressing the various frustrations and dynamics of living with chronic Lyme disease—the isolation, the trauma, the fear—and also providing a voice of solidarity and inspiration for those suffering from this devastating illness. Written as a love letter for Lyme patients who are running out of patience, as well as for their family and friends, Not If, When is a clear-eyed, defiant, and poignant exploration of what it means to live—and sometimes even thrive—with Lyme.