I’m 44 years old, and have walked this path for 14 years. The path is defeat. Defeat is not what you think it is, what Nike says it is, what your parents told you. Defeat is a great fire that rages and rages until you let go.
I’ve been working more hours lately, and my energy is improving. I am grateful for the gradual improvement in my POTS symptoms and my overall health. I am also grieving the many years of self-abandonment that led me into this long and painful process. I suppose this is the main lesson of last year’s crisis: that self-abandonment is self-destruction. I see that remaining in a driven career that was not aligned with my values or temperament set me up to feel permanently off kilter, developing one persona layer after another to try to fit in, to cope. No wonder my body started to block me–or rather, to rescue me.
But there is another aspect to this. It is as if I have lost the last 15 years of my life because I was so maladapted to the role I thought I should play. Now I don’t want to be that person or have that life and career. The false importance of it all, the artifice and emptiness of “fast” culture depresses me. And what confidence and stability did I build during those years? I feel like I’m starting over at 45 with no experience, and by that I mean experience that feels true to my core and my strengths. I know I do have deep experience, emotional intelligence, and talent. But I feel like a tender mollusk trying to form a new kind of shell before I can make my way onto the sea floor with some sense of integrity.
I have been networking and experimenting with vulnerability and transparency. It is uncomfortable to tell people I am meeting for the first time that I am healing from a health crisis and had to take time off work. In most situations I look across the table and perceive judgment and something else that brings up my fear and isolation. My challenge is to remain firmly in myself, to hold the gaze, to stay true to my words and my experience without catapulting into shame. It’s an act of courage and love, and it is so hard.
It’s not easy to give up money and the identity that come from a “career,” even if that career is making you sick. So many cultural norms pull me back into the web of illusion. And the illusion is that it will be different this time, that it is temporary. I have to remember this LIFE is temporary, and it is passing quickly. I must remember this when I start thinking, purely out of anxiety, about going back into marketing to re-stabilize myself financially. I’ve tried to make it work for almost fifteen years. Each time, it works less. I work more. I break. I can’t keep breaking.
I’ve been reading about the ACEs (adverse childhood experiences) study and the relationship to autoimmune disease, so articulately described by Donna Nakazawa in her recent book Childhood Disrupted: How Biography Becomes Your Biology, and How You Can Heal. Nakazawa writes that for every ACE score a woman has, her likelihood of being hospitalized with any number of auto-immune diseases increased by 20%; for a man, it is only 10%. Add on top of this the sensitivity gene, and you have a recipe for multiple chronic illnesses. So many women are suffering from these illnesses related to toxic stress that it seems overwhelming. What can be done? I have to start with the personal lab of my life, my body.
I know that my stress reactivity related to my early childhood and shame is a big part of my illness, and I do my best to take responsibility for my mental health. But I also know that even without my particular wiring, I might not thrive in this era and this culture of overwork, 24/7 availability, and competition. I dream of much more than that for my life. I dream of being connected, feeling a spiritual meaning beyond personal gain in my work. I’m looking for my deepest calling, not security as defined by the mainstream.
In looking for that calling, I keep thinking about joining with other women. Can we as women create new structures of business and community that do not operate on burnout, fear, and an underlying and secret sense of worthlessness? How do we do this so that we are in control of our lives, able to thrive and full of creativity? How do we do this so that kindness, innovation, and a life driven by different values is possible?
I’ve been working part time for about a month. I’ve been curious to see how the dysautonomia/POTS would react to a schedule. I enjoy having purpose to my day, and a light scaffolding of meaning and achievement seems like a good thing for mental health, even if the job is much smaller than others I’ve held. An admin job is about what I can handle right now. It is simple.
But my energy has been extremely low these past weeks. I am following the doctor’s orders, walking 2-3 miles a day, drinking 2 liters of water, meditating, following my pristine diet, yet I feel like I need to sleep all the time once again. I walked to the store on the beautiful 80 degree day this week, and barely made it home, shuffling along like an old woman. What is happening to me? I am terrified. I am terrified. I am terrified. Will it get better? Will I remain in this limping state, only able to work a part-time hourly job with no benefits?
The credit card debt grows. The disability appeal process extends. Breathe, yes, breathe. When I am scared to this degree, all I can do is ask for help from greater beings beyond me. Beings that I cannot see, but nonetheless must trust are there. I wish I could see them and meet them now.
I am 44. I am a trained yoga teacher. I have an extremely healthy lifestyle, and yet, here I am, living with the mystery of this illness. Did I do something to “create” this illness, per The Secret? (I’m back in the “Failure of Will” explanation.) Is it epigenetics, coming from my parents’ emotional turmoil? (Ok, better. There is science emerging around the effects of stress on our DNA. But I’m pointing a finger. Not helpful). The unknown invites a million unanswerable questions.
Only Vanderbilt and Johns Hopkins seem to know much about dysautonomia. I don’t think funding or interest is high for this illness, which seems to be true for autoimmune syndromes in general.
I went to a POTS support group page on Facebook yesterday, as there is no physical group in Portland as far as I know. I was sad to read that a young and vibrant (or formerly vibrant) MIT student and athlete had committed suicide, apparently because of POTS. I was already feeling the fog of dread move in, and this sad news didn’t help. It is so important to have support and understanding in this world. For an INFP like me, the risk is in trying to process it all internally and alone, in the magical inner world.
But the inner world is also at times a confusing death trap. I must remember to go to the outside world too. The glittering trees! The delight of a good book. The little collage project. The cat I adore. The glorious world, just being itself. Oh all things like this, I need your help!
Defeat. Accept defeat.
I think she’s saying, “Accept death.” That’s what it feels like to me across the circle, as I’m sobbing wildly, my torso heaving uncontrollably. She’s clearly gotten to me this time, beyond my defenses, because I’m disintegrating in public, burning up and out of control. I’m dying. The circle is quiet, except for me. I am invisible and on stage at the same time, flying and underwater. Mucous streams out of my nostrils, evidence that I’ve melted from within, liquid seeping out as part of my final something.
And then, I quiet. A great silence envelops me after the defeat. My head is a two ton bowling ball, so I move carefully on the rickety frame of my body to keep it from snapping under its weight. I am still alive, the group is rapt and with me as I return. I’ve gone into the darkness again, the terrifying place of falling and knowing nothing, struggling and screaming on the way down, and I’m somehow alive, doing the normal things again. My butt burns on the floor. I push my hair back.
A year ago today, I was sinking quickly. I knew the feeling from so many prior jobs over the past fifteen years. Fifteen! It shocks me to put the number down on paper. The sinking feeling is what comes when bargaining with the life force isn’t working. The deal I’ve tried to hustle looks like this:
“Please just let me get through this stressful self-abusing period so that I can achieve some financial security. Some spiritual security. Some physical security. So that I can have something I’ve never had from my family. Something solid, reliable. If you will, Body, help me keep going, I will be able to get us out of this mess.”
“When?,” Body replies impatiently.
“Really soon. Like maybe later this year.”
“You always say that,” Body says, slumping away. No trust.
This month last year, my days usually started with a heavy dread, A cup of coffee to boost my confidence might help, yes? It will push me on, help get me there. Be like the rest. Normal, high-functioning. Ambitious.
Up the elevator, and the masks are firmly in place. Fear rules the game, everywhere, driving, competing, dominating, out-strategizing, out-politicking. Jokey, fake and casual while you’re doing it—even better. I keep talking to myself, several dialogues going at once. “My sincerity, intelligence and integrity have a purpose. I am here for a reason.” But I can’t connect. No one says what they mean. I’m calling upon all of my meditation training just to get through my meetings, but a clammy acidic sweat tells me I’m in fight or flight all day, from the minute I board the bus and start checking my phone. I know I am strung out, trying to get clarity about what my boss wants. She has assigned me a huge project. It’s not in my job description, but then again, I’ve never had one. I’ve never done anything like it before. I try in my caffeinated sweaty nervousness to teach myself how to approach a project of this type, but realize the wise course is to be honest about my limitations, propose some solutions, and ask for help. I imagine it is what a secure, well-adjusted person would do, and I want to be that person: aware, healthy, unafraid of vulnerability. I envision the Universe rewarding this display of trust with actual help, delivering me from hell.
Asking for help is the perfect red flag to indicate my weakness, to allow them to begin eliminating me. As the days progress, I realize I am being set up. I overhear my boss telling my soon-to-be new boss that I am not a good project manager, that she doesn’t really know where there is a place for me. I’ve just completed a year-long brand strategy project for this company. I put in the extra hours, the evenings and weekends. I received praise for my work, but something is wrong now. My worst fears are externalized, on the phone, through the door, feet from me, by my boss, with her mask of hyper-competence, workaholism, insane, manic dedication. Is it sanctified mental illness? Every female boss I’ve had is in a desperate sprint that is really a death marathon. I watch her craft her martyrdom and heroine status. She does not eat. She does not drink water. She boasts not going to the bathroom all day. She boasts starting her work day at 1am. Emails from her prove the dedication. She is our heroine. She jokes about needing heroin, and I see the desperate girl running like mad under this grandiose façade. It makes me sick. I feel sorry for her and she is part of my destruction.
I am sick to my stomach again. The bowels roil in agony. I take time out to get calm, approach the situation with maturity, centeredness, which I have to imagine because in my body, it is not my state. I will fake myself into a different state of being OK. My body is rebelling again, shutting down, creating chaos, reacting—goddammit—in that sensitive way. Called delicate flower, mockingly at my old job. I hate you, body, for the way you force me to show my weakness through my sweat, my smells, my shit, my flushing, my shaking voice. If I sit too long, you make my muscles seize. Now if I dance or run, you make me collapse. You are my fat billboard of advertised weakness, my fucking genetic albatross! Weak mother and father, collapsing cells, lack of resiliency. Why was this genetic bundle allowed to continue this long? Thank God I’m the end of this line. I’ve failed. A billion trips to the ashram and mantras to the powerful can’t help me now. Accept defeat.
The truth of my body is the only clarity I have now. The defeat is the solid NO coming from the body, which forces a decision. It doesn’t matter what the mind says, or what I try to force myself to do. The body is collapsing. The body doesn’t want this lifestyle, this abuse. It occurs to me that it might simply quit, unless I accept what it is telling me. I cannot continue this way or I will die. Defeat is a blessing ready to take me out of hell. But the price is giving up whatever image I thought I could obtain through this sacrifice. Fitting in. Being a “warrior” worker or an insane person or a successful person. I don’t even know what the image is, but it involves manic martyrdom. Being overwhelmed and insanely busy is a status symbol, as Brene Brown says. What if I lost my status? But sick isn’t a status symbol, and I’ve crossed over into that murky realm.
My fatigue is growing just as I need energy to stay alive here. I’m that deer that is at the back of the herd, struggling to keep up. Prey. I struggle to stay alert and awake at my desk, though my heart races out control, a bizarre set of contrasting symptoms. Am I dying? I, too, want a version of heroin, relief from this madness. No more running. Impossible with this feeling of overwhelming, oppressive heaviness. I want to sleep, must sleep.