Across the Border

For you there was no conscious departure,

No hurried packing for exile.

You are here, anyway, in your own minor archipelago of pain.

Do what every exile does.  Tell stories.

Remember things back there

as simpler than they ever were.

As I begin to write this story for the Floxie Hope community, I think of the lines from a poem, “Across the Border,” by Karen Fiser.  I met her as a student when I was eighteen.  She had a William Stegner fellowship to teach and to write. She expressed a quiet and unhurried compassion that felt as integral to her as the brisk professionalism that I might have expected from another in her position.  Her poems wove together strands of her life, moments of breaking both open and apart.  She was describing the passage of her mind through her life experiences, addressing physical disability and pain.

Less than a year after that class, I took a long and high dose prescription of Cipro for recurrent Strep throat.  After those pills, different parts of my body were damaged over a prolonged period of time.  I could not adequately explain or identify why my body and mind were under such extreme pressure.   It was 1993 and I was nineteen.  I left my university within weeks of being poisoned. I did not know how to heal.  I was completely unprepared.

In the first week after completing the course of Cipro, I experienced a sort of panic attack that is beyond any level of physical terror that I can describe.  I felt like I was dying and facing an oncoming truck at the same time.  That was an extreme physical experience.  Then I found that I could no longer handle normal stress.  Whatever my body had done to maintain balance was no longer working, and stress became unbearable. I described what was happening to a doctor at the student health clinic, but I was told that I was experiencing “normal stress.”  My ears had begun a loud high-pitched ringing that did not subside.  I couldn’t stop shaking my legs at night and it was difficult to sleep.  During the day I experienced a kind of exhaustion that came in inexplicable waves.  The muscles in my arms began to tear.  Soon I could no longer carry my own books or even wash my hair without pain.  The muscles in my legs felt stung and ripped.  It was difficult to walk. I limped wherever I had to go.  After the physical exertion of walking, another wave of fatigue would descend.  I found it difficult to concentrate or study.  My breathing felt impaired.  My available bandwidth of attention for everything and everyone was smaller.

In 1994, the idea that an antibiotic could induce serious and wide-ranging ongoing damage, after its use, seemed impossible.  I looked at every new symptom as a separate problem.  I quickly left college, then home, and I began work.  Conditions that would have already been challenging, became more difficult to manage.  My intelligence felt diminished. I was also physically depressed, not just in my mind, but in my cells. My appetite decreased and over the course of a year I lost thirty pounds without thought. I could make it through work, but then I was completely wiped out.  When I was a nanny, there were hours in which I could barely stay awake. I sustained extremely painful muscle tears in the joints of my arms when I carried the baby.  When one of my employers “casually” untied the strings on the back of my dress, I found it difficult to tolerate.  I began a job as a waitress. My muscles were still burning with pain when I worked at the restaurant, but I was making progress.  It was easier to walk than it had been before.  My arms were burning when I carried trays and then sore to the touch after work. Then five months after my fluoroquinolone poisoning had erupted, a disturbed young man raped me.  That experience worsened my symptoms or I could surmise that being poisoned by Cipro amplified the experience of trauma. It became extremely difficult to sleep.  For months, I had vivid waking nightmares about being assaulted again and I would scream in my sleep, then sit up with a huge jolt of adrenaline.  I was afraid to fall asleep again because I was afraid to dream.  I blamed myself for struggling, and other people did, too.  Love was withheld.  Physical and emotional pain felt like one big loop that fed upon itself.  Some nights I dreamed that I stepped out of my childhood window and flew above everything without any burdens.  During the hours when I reached my breaking point, I saw the side of my existence that would be called suicidal.  Then those hours passed.  I wanted to forget.  A year after my initial poisoning with Cipro, I went through four months of fatigue that were so overpowering that I could not function.  Over a period of weeks, a large amount of my hair fell out.  I did not feel grateful, hopeful, strong, or worthy.  I no longer felt my age. I was a teenager and then turned twenty.  I could not summon or find my life force and stamina.  I had to contend with the feelings of being shattered, disoriented, and lost. In those first two years of Cipro poisoning, I recalled the words of “Across the Border” and they represented a kind of reflection of where I was internally.  I was, in all honesty, just trying to get through each day.

I had no formal healing regimen.  I ingested no probiotics, no vitamins, and minimal food.  I rested because I had to rest.  I waited because I had no choice.  I could not will the experience to end. I didn’t know if it would end.  I couldn’t categorize it.  The fact that energy and health came in waves that then receded made me feel mentally ill. I couldn’t put what was happening into words or a structure that held together.  Even if I had, no one would have known how to interpret it and that in turn leads to misinterpretation.

During those early years, I accidentally happened upon hours of grace.  I began to notice that I found peace when I was walking, breathing, and looking at trees.  I didn’t know how to forgive myself.  I walked, I breathed, and I loved the sky and the trees.  I loved the bare winter branches that broke one after another into spring and summer leaves against the changing sky.  When I opened myself to loving even one aspect of the world, that love touched my life, too.

In the years that followed, this advice would have helped me:

Imagine yourself as a small boat trying to leave that archipelago of illness and the sense of separation from who you were before.  You’ll feel the weight that people cast in your direction: the harsh judgements, the confabulations, the speed with which people can negatively compartmentalize each other, and the incredulity.  That pressure can push you back onto that island of pain, so even if it feels like a leap of faith, you are going to have to learn how to let it go quickly. Trust yourself.  You’ll need to learn to relax.  Don’t underestimate how important this is.  Find it in yourself to relax amidst the challenges.  

The first two years of Cipro poisoning were the most severe.  When I regained enough strength and energy, what felt like normalcy, I studied at a university with lower tuition so that I would not waste much money if I became ill.  The worst of the Cipro poisoning was over, but I was frightened of becoming ill again and I’d lost hope.  Most of the relationships that I’d had before being poisoned were damaged irreparably.  Relinquishing who I had been before, and what I had hoped to do in my life, had happened incrementally. I didn’t know if I would be able to concentrate, or whether I would suddenly lose the ability to handle normal stress.  I learned to be o.k. with not knowing.  Although my muscles were vulnerable, I felt generally capable.  My arms ached and burned after I worked.  My hands hurt while I took notes in classes.  It could sound funny, but it was very difficult to sit on hard seats.  It caused my legs a lot of pain.  It was hard to last through an entire lecture, so I carried a cushion with me.  During the remainder of my twenties, I experienced periods with severe muscle injuries involving tendons.  Several times these injuries were so debilitating that I had to quit the jobs that I had in order to give the affected tendons enough rest to heal.  For the worst injuries, it took about six months to recover.  As my twenties passed, and I lived through my thirties, I realized that I had been experiencing what felt like a process of reverse ageing.  I had felt physically fragile and weak in stamina as a young adult.  Over the course of a decade, all of my symptoms faded.  I was able to run in my thirties!  I gave birth to two completely healthy children.  I cared for my daughters full-time, carried them constantly, and worked long hours on my feet.  I laughed with dear friends.  My body felt entirely younger than it had in my twenties.  I thought my forties would be even better.

When I was forty-one I had a suspected UTI.  It was December of 2015 and I was given a a three day course of Cipro, 500 mg/day.  Within a week of the antibiotic, every hour of my life became struggle.  The symptoms began with my losing the ability to walk without increasing tendon pain.   Soon I could not sleep without awakening from huge jolts of adrenaline and shock.  My ears began ringing loudly.  My clothes and bed sheets were soaked with my sweat. I could no longer regulate my body temperature. Then I experienced the same type of panic attack that I had at nineteen.  I have only experienced this one time before in my life, and both times it occurred within a week of my last doses of Cipro.  I felt like I was facing an oncoming truck and like I was dying at the same time.  The level of sheer terror and stress is indescribable.  Then I found that I could no longer regulate the sensations of stress and anxiety.  Before long I could barely walk.  My tendons felt like they were going to rip with each step.  It seemed that almost every part of my body developed some level of tendinosis.  I could feel where each tiny tendon in my hand worked for the first time in my life.  Even the smallest move caused burning pain and lasting injury.  I could not hold a book or use a pen without injuring my hands.  I carefully moved my arms so that I would not create painful tears in their joints and sockets.  It was difficult to hold my head up or to sit in a chair.  I injured the tendons in my arms and wrists when I lifted my drinking glass, so I had to do it with a lot of care and effort.  Muscles randomly twitched deep inside their mass.  Neuropathy and pain circulated around my body and then settled into my arms, legs, and back. I could no longer feel hunger.  I had to force myself to eat.  For the first four months, I felt the sensation of struggling to get enough air.  My eyes couldn’t handle strong light.  I was in a state of total exhaustion.  I alternated between complete rest and magnesium baths.  I also sought an expert acupuncturist’s evaluation and took Te Xiao Zao Ren An Mian Pian, “Sleep Peace,” by Guang Ci Tang.  For the first six months, I would not have been able to sleep solidly without taking both magnesium glycinate (Pure Encapsulations) and “Sleep Peace.”

In 2015, it was not hard to find out that I had been poisoned by Cipro.  I was able to rule out all other possible illnesses such as Lyme’s Disease and to confirm with a neurologist that I had Fluoroquinolone poisoning.  She had, incidentally, also experienced achilles tendon damage from Cipro.  Over time, I understood in a new light, with words and a comprehensive structure, what I had gone through as a young adult.  The symptoms were more severe than they had been in 1994, but my body and mind were deeply familiar with this situation. After I was poisoned as a teenager, I had already experienced a process of confusion, denial, anger, grief, and acceptance.  I didn’t have to do that again.  I needed all of my energy for healing.  In a sense, this second poisoning was a continuation of being poisoned.  My body and my entire being carried a background of lessons.

I did not know how my poisoning would progress, but I understood that I had to get through one hour and one day at a time.  I knew that I needed to fully let go of the hardship of each day, to let go of the residual fear from it.  I understood that this was crucial to my ability to stay open to life, and to feel alive in today and tomorrow.  Rest was a job.  Healing was a job.  Eating was unpleasant work, but I had the opportunity and the privilege to make that meaningful work.  While the present was often physically excruciating, my body already knew how to just surrender to living.  My life centered around a newly heightened balance of forces: the passage of time, the conservation of my energy, optimal nourishment, adaptation to disability, and attunement to the dynamic shifts in what works and what doesn’t work.  One month I could barely walk, the next I could walk a few blocks before sustaining debilitating injuries.  My body was undergoing a delicate process of healing equilibrium.  There was a tremendous amount of equilibrium to be restored.

The experience of waves of anxiety completely ended after the first four and a half months.  I will dare to credit this to beginning Wahl’s Protocol within days of being poisoned by Cipro.  I followed Dr.Terry Wahl’s regimen to the letter (https://www.youtube.com/watch?v=KLjgBLwH3Wc&vl=en).  That included fermented foods, probiotics, and bone broth.   Kelly Brogan also has a compelling healing regimen that parallels Dr. Wahl’s diet (https://kellybroganmd.com/about/bio/).  Magnesium glycinate supplementation was calming as well.  I wouldn’t wish the adverse reaction of anxiety and its accompanying emotional vulnerability on anyone.  It is one thing to handle the pain of torn muscles and immobility.  It is another to be unable to find the breaks for the sensation of stress and emotional pain.  I needed to experience these episodes by the hour instead of categorizing them as having occurred for entire days or months.  The episodes felt like something in my body temporarily could not right itself.  Stress control that normally might take seconds, took hours.  I wouldn’t say that I was depressed during this second Cipro poisoning.  I have and still do sometimes feel weariness, maybe the way that a beaten animal would feel weary.

Five months into my recovery, when a large amount of my hair was in the process of falling out, my endocrinologist helped me to identify that I was probably experiencing telogen effluvium.  His own mother had been negatively impacted by Cipro, and he understood that I had been poisoned.  He emailed me, “It typically lasts for around six months and it almost never involves greater than 50% of your hair.  It almost never represents loss of hair follicles, so new hair should grow back in time.”  It was a delight to just have a name and description for that predicament.  In just a half year, I had shifted from finding joy in running, to finding real delight and heartfelt gratitude about learning a name for a type of hair loss.  My dear friend bought me a t-shirt that said, “Everything is hurting and I’m dying.”  He brought me a stupendous bouquet of freshly home-grown kale, and he kept me laughing while I tried out eating the soft parts of organic chicken feet.  My daughter drew me a picture of a Darth Vader-bunny as a Wahl’s Protocol warrior.  Life brought gifts and I felt them to my core.  By six months, I was able to take care of my children again.  It was a struggle to get all the way through each day, but I was already shifting to dealing with less severe neuropathy, stamina limitation, tinnitus, and muscle vulnerability.  I was disabled and I had one of the best summers of my life.

Three years on, all of the damage continues to slowly decrease.  Symptoms flare and then recede.  I am left with wide spread tendon vulnerability and frequent cycles of neuropathy, lowered stamina, tinnitus, injuries, and soreness.  From month to month, I don’t know what level of health challenge or ease I will be managing.  There is an analogy of health to a cup of water.  When my body is in a normal healthy state there is a buffer, so that mild illness won’t upset the balance.  My body after Cipro poisoning is already working at its highest potential to function at normal health.  So small triggers and additional health burdens can tip my glass of water, and symptoms flare.  My body’s need for enough rest, stress management, and thoughtful nourishment are non-negotiable.  I adapt my choices and self-care to that reality as it evolves.  I am, in a sense, doing everything that I can just to keep my cup from overflowing.  I know that I am living in a weakened state.   I intuit that my body is again going through another decade long process of reverse ageing.  In this third year, I have found that I cannot walk more than a few hours before muscles are injured and my source of energy is emptied out.  Topical Arnica gel has been effective with pain reduction after a normal day of movement.  Vitamins have never been a straightforward prescription or investment for me.  Sometimes they make me feel remarkably worse.  Dr. Ben Lynch has a helpful perspective on some of the more difficult vitamins for me to tolerate, such as methylated folate (http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26/).  He states, “a supplement enhances your biochemistry and physiology – and once complete – stop. If you continue to supplement beyond completing or enhancing your biochemistry, you are going to push it beyond where it needs to be.”  This means that I have to make my decisions over my health from the inside out.  I cannot follow an externally prescribed daily supplement routine without stopping to feel and interpret the signals from within my own body.  For better or worse, I find that I have no viable shortcut to giving my body the support that it needs through food.  I feel the best when I follow Dr. Wahl’s diet (https://www.mindbodygreen.com/0-25961/what-i-eat-in-a-day-functional-medicine-doctor-terry-wahls-tells-all.html).

Both as a reminder and an instigator, my central question throughout this second poisoning has been, “what are you here for?”  Yes, Cipro poisoning shouldn’t have happened.  But this is the only life that I have.  I never get this time back.  Years ago, when my grandfather was in the final weeks of his life, he likely said goodbye to a number of people in the same way.  If there had been hesitation or doubt lingering for him before, I couldn’t find it.  The last time that I was with him, he looked at me and he pushed his thumb very deliberately into the palm of my hand.  I felt that he was pushing ALL of his love into my hand.  The magnitude of that love, I can’t explain it.  I just know that I am here because I am not finished being with whomever I am here to pass that on to.  I’ve had to accept that my body, even more after this second round of poisoning, will not relent in telling me to let go of draining situations, and to make the necessary sacrifices, so that I can be who I came here to be.

Each of us has our own unique story, body, personal circumstances, and healing trajectory.  Please know that I will read any comments with respect and care.  I can’t imagine being able to give advice for how to go about reclaiming your life in the midst of being poisoned, but I am wishing you happiness along the way and a full return to health.

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, affect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.