Falling Up

By Elyse Knight

The first time I could get on a plane after 9 /11, was in September of 2011. I had reluctantly agreed to fly from Westchester County Airport in White Plains, New York, to West Palm Beach, Florida, with my partner, Dennis. He was able to convince me to do this despite years of my being incapable of getting on an airplane. 9/11 had, for all practical purposes, shattered all my perceptions of safety, of objective truth, the competence and trustworthiness of government, airline pilots, air traffic controllers, and airplane mechanics. I distrusted my own sense of safety, and my ability to assess risk. Years later, I would be given a diagnosis of PTSD, but, between 2001 and 2011, I thought my aversion to airports and planes was a perfectly rational reaction to the state of things, as I perceived them.

The flight to Florida was uneventful. Dennis had me doing children’s puzzles, and he held my hand through most of the flight. This was a big deal; I was traveling again after 10 years never leaving the safety of the ground. For several of those earthbound years, I had no idea I couldn’t fly. I thought it was a choice. I didn’t see that my habit of cancelling travel plans last minute, or, finding reasons why I needed to stay home instead of visiting family during the holidays, going skiing in Utah with my brother, or vacationing anywhere except Cape Cod, might be related to anything other than being ‘too busy to travel.’ It did not become clear to me until I had spent years on the ground, and finally was confronted by a therapist with my long-term pattern of avoidance.

Thanks to those baby steps initiated by Dennis, and that flight to Florida, by 2019 I had fully returned to plane travel, despite still experiencing discomfort. I’d been to Colorado for work, to Portland, Oregon for the holidays, and home to Los Angeles for a wedding, and again for a high school reunion.

Then, in November 2019, while in Portland for Thanksgiving, I became seriously ill. By January, hemorrhaging and dangerously anemic, I finally went to the ER in Montefiore Nyack Hospital, New York. I was misdiagnosed there and by other doctors, subsequently for 10 months, until finally, after waiting for “elective” surgeries to be permitted again post Covid shutdown, I had a hysterectomy on July 20th. On August 6, 2020, I finally received a correct diagnosis: my harmless ‘fibroid’ had been a very rare and aggressive form of cancer: Uterine Leiomyosarcoma. I was designated Stage 4 because I had nodules in my lungs where the sarcoma had metastasized, as it will often do, if left too long to fester, as mine had done. I began to seek treatment, and was told by 2 mainstream ‘standard of care’ oncologists that I needed to do chemotherapy. However, the regimen they proscribed had only a 20% chance of delivering a 30% reduction of tumor size. I found out there exists no dedicated course of chemo that will work for what I have, and yet, still, the doctors told me that their chemo was my only choice. The first doctor advised me to “enjoy my life” after he told me that I would likely be dead in a year without his treatment, and dead in 5 years anyway if I did do the treatment. I couldn’t shake a conviction that he was talking about somebody else, that he didn’t know me, and had no right to tell me when I was likely to die. I got angry. I began to seek other options. I did tons of research. I learned that chemotherapy only addresses symptoms, and eventually can cause the cancer stem cells to get stronger, and cause more metastases. Even the doctors would smilingly admit that after several courses of chemo, I would probably die from the toxic side effects, not from the cancer itself. Eventually, I found an ‘integrative’ oncologist in California, who offered, among several outside-the-box treatments, a course of low-dose, insulin-potentiated chemotherapy, or IPC for short. She looked at the list of chemo drugs I had been offered and said, “I don’t think this is going to cut it.” She then looked me in the eye and said, “I can help you.” She gave me hope that we could successfully treat this disease.

As the date of our flight to California got closer, I was in a state of full-blown anxiety. I was afraid as usual, of flying (the plane might malfunction and crash). I was even more fearful of being exposed to Covid, raging out of control at home, and at our destination in Los Angeles. I was absolutely terrified of chemotherapy, low dose or not. Add to the mix that the treatment path I had chosen was not covered by insurance, being deemed “experimental,” and that I had just enough money in my retirement account to cover the cost of treatment, along with $57,000 worth of credit card debt, due to not working for the past 12 months. Fear of becoming homeless and bankrupt was very much on my mind though only slightly less intensely palpable than my fear of getting on that airplane with a bunch of Covid-denying, airplane-trusting passengers.

I reached the crisis point when, standing with Dennis outside the Newark Airport entrance doors, putting on the N95 masks I’d ordered online, I completely lost it. The N95 masks I’d brought did not fit his face. My fear became absolute terror, as though I was standing outside of the World Trade Center watching a giant airplane deliberately crashing into the North tower. I was screaming at Dennis, cursing, crying, completely losing my shit, and absolutely unable to enter the building. I could feel the stress hormones raging in my bloodstream. My leg tendons were taut, ready to snap. I was sweating buckets and needed to use a toilet. I could barely breathe.

After several raging, impotent moments, and seeing Dennis’ distress at my distress, I went into MacGyver mode, and figured out a way to double mask him, using two different kinds of masks, to satisfy my standard of ‘safety.’ By now under pressure to make the flight, along with a very realistic fear of not getting treatment for my cancer, I calmed myself enough to pick up my bags, put on my mask and face shield, and headed through those doors.

Needless to say, we survived. The plane did not crash, and we did not get Covid. I started treatment.

I have since learned that chronic exposure to stress hormones can make us very sick. I now believe they provided the fuel for whatever went wrong with my immune system to allow cancer to bloom in my body. About a month into my treatment in California, unable to sleep more than a few hours each night, I received a book on Buddhist teachings, How Things Exist, by Lama Zopa Rinpoche, from a dear friend back home in New York. I already knew that my fight to survive needed to include sleep, and calm. I needed, not only to reduce the causes of stress, but also to change my habitual reaction to it. I began reading the book, and found that meditating on detachment and emptiness had a calming effect on my nerves. Ah ha! Detachment! My new friend.

I had been told by my therapist that my PTSD wasn’t my fault, (duh!) but not within my control, (WHAT?) that it was not a psychological problem solved with talk therapy, but an incurable injury to my nervous system. As a result, I had come to believe that PTSD was going to define my existence for the rest of my life. No successful therapy has been developed for it, much like the rare cancer I was now trying to cure.

Lying awake one morning at 4:00 am, I decided that I needed to take charge of my situation or I would fail. I needed to believe I had the tools to heal myself, and to eliminate fear from my life. I started meditating on each fear dominating the landscape of my mind: Death, Pain, Painful Death, Losing My Hair, Losing Everything. I realized that I was, so far, surviving intimacy with all of those experiences. What was there to fear? What did I have left to lose? What is the point of fear anyway? To help us navigate danger? Maybe in a healthy person, but my fear was making me really sick.

I get that PTSD comes from unprocessed trauma. I get that events in my childhood set me up to be vulnerable to it. I respect it, and the traumas I endured. But like the beautiful song by India Arie says,

I am not the things my family did

I am not the voices in my head

I am not the pieces of the brokenness inside

I am light

So I went to work. I worked on giving up my attachments, including attachment to self, while expressing gratitude for my body every day. I started to pray. I blessed everyone in my life. I forgave everyone in my life. I thanked God for each day. I found that though I was not able to completely eliminate my fear, in the attempt to do so, it became less powerful. I learned how to talk myself out of it when I could feel the cold stab of it in my gut starting up again, and, to trust myself to know how to walk it back. Eventually, I was able to shift the negative energy of fear to the positive energy of gratitude, even while my hair was falling out. I felt such gratitude for my life, and my experiences, the people in my life, the beauty of the world, even if now it would all be ending sooner than I had expected. I started getting up each day saying, “I’m alive, thank you, I can breathe; thank you.”

Today is August 6, 2021. It is a year since I received my diagnosis.

I am still here.

I am still breathing.

I fear nothing.