Relapse-Remission
Long-term illness is defined by its cycles. There's always some event that sets the stage. A flu upsets the autoimmune balance.
Relapsing–remitting is a medical term referring to the crest and trough in a condition's wave, its cycle of symptoms. It's one of those turns of phrase that both makes me freeze and makes my blood boil. Beyond any diagnosis, relapsing-remitting is the phenomenon of change, the pendulum swinging back and forth between two brief technical terms.
Remission is the state of lessening of disease activity, with the possibility of its return.
Relapse is the term used to describe returning symptoms of the disease after a period of remission. Relapse is also the word used to describe a return to abuse/addiction. It's a form of recidivism. Medical language is saying that I'm addicted to disease.
Can I deny it? Stability has none of the rush, the stress, the spice of searching after solutions to illness. You'd think my body enjoys going out of balance just to see how I'll react. Relapsing–remitting describes the fragile balance of the dance I’m in.
In the relapse-remission merry-go-round, only hubris could lead me to think that I am "cured," because "cure" implies the total healing of a condition that will never return (allegedly).
It's easy to assume remission is complete and perpetual when years go by without a single sign or symptom. I've been using the word remission for 3 years because I know the possibility of relapse is a real potential.
The cycle has revolved before, it’s never stopped spinning. My body's habit is illness. Remission is that which returns to its origin—am I returning somewhere, or is this entirely new ground?
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In April, I attended a Somatic Communication training with Nita Little at Wildheart Arts Center in the Hudson Valley. I was at the peak of my physical health and fitness. A few of us got sick.
During the haze of the oncoming flu, I entered deep into a trance lying flat on the studio floor. When I awoke, the women in the group were sharing their stories of birthing, of bleeding. One of them reminded us of a Qigong practice I'm familiar with. Lying on my side, I breathed with the earth. In-breath, sending attention deep into Mother Earth. Out-breath, Qi up into myself and distributed throughout the body. After a number of breaths, I sat up. My world suddenly imploded. I was filled with heartfelt grief and compassion for all of life. I sobbed, and sobbed, and sobbed.
When the group gathered after a break, I explained that I had been open to their stories, and that the energy and emotion in the room rushed up into my heart. I could only respond by bursting into tears. In other words, I was open to change, to being easily moved by love.
The next day, I fell severely ill. A fever took my being into rapture for the better part of 24 hours. I missed part of the workshop, of course. It's a long walk towards one's own nature. It takes major shocks to wake us up. I'm still reeling from this event last April.
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Being chronically ill turns out to be an addiction. While a major part of me knows what to change, a major force keeps me in the cycle of relapse-remission. I’m addicted to psycho-emotional chaos, and it shows up physically.
In physics, the word remission carries the connotation of reflection. Remission is the change of direction of a wave returning to its origin. Remission is a reflection of matter, bouncing back in the direction from which it came. Remission is present in seismic waves and ocean waves. In acoustics, remission causes echo. The ghostly repetition of sound coming back around.
It's easy for me to forget it's not the first time. It's easy to write off ages of 12-18, where symptoms were zero, as a fluke. I could say that ages 19-25 were the “real” illness, and that total remission began in 2022. But I’m at my mom’s place this week. I was looking at photos of my first year of illness, age 5. Things were much, much harder the first time around.
Just like the ecosystems in which humans are embedded, our bodies are in a careful equilibrium. Life finds a way to maintain itself, even when chronic imbalance develops. It becomes the new normal, a familiar long-term condition. This state becomes so familiar that we eventually forget it could be another way, until another major change washes over us.
It only took me 3 years to forget what it's like to depend on external help and to devote many weeks to the process of regaining a stable footing. But change is the major constant of life, and any fixed view of health is always a temporary illusion. The past month has held a noticeable resurgence of symptoms that I have associated for the past 25 years with bleeding.
This time around, I can decide what to call my condition. By its allopathic name, chronic immune thrombocytopenia? Or name the signs, according to the Chinese medicine I've learned, as damp heat in the blood? How about according to my emerging understanding of Ayurveda—rakta Pitta and excess Vata?
The gift of this moment is the opportunity for learning. What is my body trying to tell me? What is different now than it was before? How can I keep my heart open to the world, how can I remain porous?
While there is no clear pathway for healing Immune Thrombocytopenia, I am blessed to have the concepts and tools I have now. I know (more or less) how to live in order to appease these Ayurvedic imbalances, how to nourish my Blood and Qi.
The main pitfall to avoid now is to resist the urge to change everything everywhere all at once. I’m attempting to listen to what my body needs. It's always about returning to the basics: food, sleep, energy conservation.