This is a four part series that will be published throughout July 2020.
I was recruited into the world of Invisible Illness by a tick. Yes, a tick. Before a tick bite ended my military career, I had been an Air Force Officer and fighter pilot with over 21 years of honorable service to our nation. I’m also a proud wife and a doting mother to nine-year-old twins. Prior to my complex illness, my personal life and military career had been nothing short of extraordinary. I am a combat proven F-15E fighter pilot, I commanded an Air Force Fighter Squadron, I had flown as a pilot with the U.S. Air Force Thunderbirds (the first woman pilot to do so), served as a White House Fellow, and was an advisor to the First Lady of the United States. I had even run a marathon while in good health. I was physically fit, mentally fit, and emotionally fit… and then it all unexpectedly came crashing down. A tick bite changed my life forever.
I can remember the exact moment I knew something was very, very wrong. In the summer of 2012, I’d seen my doctor about a growing rash on my right hip. At the time, nobody discussed tick borne illness, nor had I ever heard of it in a substantive way. I was given ten days of antibiotics and a topical cream. Within a month I was having fevers, a general feeling of malaise, and some painful paresthesia. A few months later the neurological symptoms began to manifest. I distinctly remember that day and I want to share it with you: I was leading a formation of F-15E fighter aircraft back from a training mission over the Atlantic Ocean. It was a beautiful day, not a cloud in the sky, and we were proceeding with the routine approach back to our home base in North Carolina. Despite the crystal-clear conditions, and my feeling perfectly healthy that morning, I was overcome (in an instant) with an overwhelming sense that my aircraft was turning left, though it was not. We are trained on how to handle vestibular issues which we know can manifest during flight through weather or at night. It made no sense that I would be experiencing vestibular issues on a perfectly clear day and during straight-and-level flight. As I tried to process what was going on, the air traffic controllers were calling me on the radio. I could hear them telling me which direction to fly and to change altitude, but I could not activate my radio switch to answer them. I literally could not get my hands to activate the same switch I’d activated thousands of times, including during high stress situations like combat. After what seemed like an eternity, and follow-up radio calls from the air traffic controllers, I managed to get my hands to work. Once the switch was activated, though, I could not speak. It was a simple radio call for a heading and altitude change, but I could neither find my routine words, nor get them out of my mouth. Lucky for me, I was the commander of the fighter squadron and this was an all-Instructor formation. I passed the lead to my experienced wingman who led us home. For good measure, we had the Instructor Pilot in my jet perform a back-seat landing that day. The next day I returned to my doctor quite scared by what I’d experienced. This would be the start of my medical odyssey, one in which me and my family found ourselves desperately in search of a diagnosis and treatment.
Repeated doctors’ visits yielded no answers, no diagnosis, no treatment, nothing. Prior to my telltale erythema migrans (EM, or “bullseye”) rash in June 2012, I was perfectly healthy. Within weeks of the EM rash, my health would begin to decline, thus beginning a year’s long journey of neurological deterioration. Following a subsequent documented tick bite, and a CDC positive Lyme Disease diagnosis in August 2013 (14 months after my first EM rash), my medical issues grew exponentially (in spite of treatment) and sprouted to impact every single system in my body.
It would be 1,525 days between my first documented rash in June 2012 and my accurate diagnosis of late stage, neurologic, Tick Borne Illness in August 2016. This equates to 4+ years of suffering from painful and debilitating multi-systemic issues. I saw 24+ doctors across eight specialties and received multiple misdiagnoses along the way. My misdiagnoses included ‘potential’ Multiple Sclerosis, Autoimmune Diseases, Endocrine Dysfunction, and Fibromyalgia. I endured countless needless, painful, and costly medical tests. By the time of my accurate diagnosis and start of treatment in August 2016, I was unable to speak intelligibly, I could not read or write, I could not walk more than a few steps safely, I was bedridden on average 22+ hours a day, and I had major problems with my cognitive function, to include severe memory problems, confusion and dementia-like symptoms. I was unsafe to be left alone. I could not play with my children, care for myself, or interact with my husband—who had to be both caregiver and single parent during the worst of my illness. While I am grateful that I was never suicidal, there were times I would have welcomed death. I thought I was tough as a combat-proven fighter pilot, but tick borne illness destroyed me, brought me to my knees, and ruthlessly broke me.
I would spend two years in intense treatment, including IV antibiotics, high dose oral antibiotics and antiparasitic medicine, vestibular rehabilitation and physical therapy, all to climb my way back to the level of independent function I have today. During this recovery period, I was predominantly bedridden for the first nine months of it and mainly housebound for another year. I was rather unceremoniously medically retired from the military in the midst of all the medical chaos. My career was literally ‘gone in the blink of a bite’. Overnight I lost my career as an Air Force Officer, I lost my identity as a fighter pilot, I lost my means for providing for my family, and I lost my independence. Along the way, I lost a lot of ‘friends’ and most of my social network disintegrated before my very eyes. To the outside world, I had literally become Invisible.