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Cruel Summer

My goodness. I feel as if I have spent a summer being tossed around in a maelstrom – losing all bearings or footing, unable to respond in ways other than reflexive fear or panic, and thus threatening to drag others into the suffering with me. As it stands now I have mercifully been deposited into calmer waters, but I remain vigilant as waves of memory pass through me, bob me up and down. I bask in the recollection of what it means to be safe but with wary respect for the power of the water.

The events I’m referring to are in a way so much more mundane and understated than you might expect. No deaths in the family, no conflict or abuse, no violence or accidents, no firings from jobs, no financial distress. No, just six weeks of tapering off a stupid little steroid drug called Uceris that has caused so much more complication in my life than I ever thought possible. Now that I am off the medication, my weak adrenal glands have a better chance of recovering full function over the long term.

I’m really, really proud of myself for getting through it. But I have learned a hard lesson: I could have wasted a lot less energy and time throughout this by having some basic compassion for myself, and the ability to assert my needs to the doctor.

Over this summer, despite feeling a greater burden of anxiety, depression, mental limitation, and moments of abject terror than I have ever felt in my life, I somehow didn’t manage to contact my doctors. Or when I did, I would sometime downplay the impact on me.

Part of this was because I had expected the taper to be hard. My endocrinologist told me in May, bluntly, that this would be the hardest year of my life. Weirdly enough, I found her honestly liberating. Here I had trucked along for nearly seven years insisting that Doing Stuff – school classes, community organizing, maintaining friendships, occasional creative or silly pursuits, attempting to take care of myself – would be the path to feeling well overall. And I do think it was really beneficial in some ways, to not simply suspend everything in order to get well (and I knew full well I wasn’t well).

But something I had noticed throughout college was that important steps would get put off in order to maintain some kind of obligation or event. I was constantly being put on academic warning or probation and didn’t want to push things over the edge. Trying a new medication with possible side effects was too risky with the studying I had to do for this test or the speaking I had to do at this rally, and forget about trying to taper off medications that were doing some kind of harm (yet also helping).

Hearing from my doctor that things would be so much harder helped me give myself permission to take a big old break (which has been possible thanks to a very supportive family). But I sort of envisioned that break as something that could be rejuvenating even as my body struggled with detoxing from some strong medications. I thought it would be an opportunity to take trips to the beach, read for pleasure, catch up with old friends, see movies, and generally let myself off the hook.

I did not realize most of my summer would be so crippling that I could not even do these things and enjoy them.

I became so allergic to my cat that I couldn’t cuddle with her anymore. I got so sensitive to noise and emotions that music, normally a big escape for me, could put me into a panic or rage. I had been enjoying journaling in June and early July to cope with some things – after the taper started, the sight of my journal provoked terror. Same with a book I had been reading and enjoying greatly to learn about my condition (Never Bet Against Occam by Dr. Lawrence Afrin) – a mysterious reaction to a bit of text in it left me wracked with panic any time I tried to read it. My Emotional Freedom Technique sessions with a therapist stopped making me feel better and sometimes left me feeling worse, or stuck. Often I was just too foggy to follow what the therapist was saying. I didn’t contact friends or family much because I usually felt way too altered, agitated, or tired to hang out with them.

I can deal with some level of anxiety or stress; I always have. What I’ve never truly experienced is having nearly all my coping strategies or escapes turn to mush, as they either offered no relief from the dread or made things worse. The anxiety toward “losing” these activities also made it hard to start any alternatives, wondering if I would somehow become intolerant of those too. Sometimes I simply felt so awful there was nothing I could do but close my eyes and breathe deep into my diaphragm, which didn’t make me feel better but just kept me from getting “burned” while attempting to channel my boredom.

Instead of coming to my own aid, I sort of shrank back. I really wanted to believe I could think my way out of this, even as my rational mind (what was left of it!) knew full well this psychiatric mayhem was largely caused by physiological issues. And that it was just way too much to expect myself to handle. The improvement when I finally got the go-ahead to increase my hydrocortisone dose made this manifest. I am still working out what the best course of action is with medications and therapy, as I’m still doing worse mentally than before summer.

The superego harps on us to personally cultivate a calmness and adaptability that has already been stamped out of us by a polluted, sick society. Don’t take a medication, just take on a Sisyphean regime of meditation, gratitude, yoga, unlearning negative thoughts, elimination diets, essential oils, and all manner of things that counterbalance the level of neuroticism and self-curating bullshit you will need in order to actually survive. And that you probably need in order to feel better, as anyone who has tried to get anything done within the medical system can attest.

I’m afraid that this summer I just asked too much of myself and paid a price. It’s still hard to keep going. But I want to. I want to see what life has to offer me. I just need to demand that I get the care and support I need.

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The Gray of Individual Worry

In my previous post, I wrote about how worry and pedantry can consume you after experiencing an extreme illness. I want to talk a little more about what that can look like.

In September of my senior year of high school, I developed a very sudden, progressive illness. Over three months I lost tolerance for any exertion, not to mention dropping a quarter of my weight, spiking fevers and night sweats, growing erythema nodosum that ate through my lower legs and made walking very painful, weathering near-constant abdominal cramps and frequent diarrhea, spitting into a cup every few seconds from waterbrash, and enduring vast personality changes with intense depression, anxiety, and weeping. In the month prior I had been quite healthy; cheerfully reading college guides, training with the cross country team, and researching alternative diets.

About a month pre-illness, charging up Steens Mountain.

In late November I had gotten so bad that I was finally hospitalized. In the hospital a surgeon consulted with me about having a colectomy, where my entire large intestine would be removed, as it was so diseased and ulcerated that it may have been beyond repair. Fortunately, a biologic drug rapidly reversed the inflammation. After I was discharged from the hospital in early December, colon intact and symptoms dramatically improved, my parents and I were still traumatized by how drastically our life circumstance had changed in a few short months. They had both had to cut their work hours significantly in order to care for me round the clock. We had been told that this was caused by a chronic condition that would require indefinite management.

It became our mission to somehow ensure that I would never suffer like this again. We wanted a complete cure of something that I had been told I would now deal with for the rest of my life.

And so, the heightened state of alert continued. I kept a symptom diary documenting every food I ate and every bowel movement, which my parents would read and review. I followed the strict Specific Carbohydrate Diet protocol that I had started in October, eating a handful of the allowed foods from the intro stage and only introducing a new food every four days. My mom spent the better portion of her days cooking for me, making homemade yogurt, and sourcing unconventional ingredients. I saw an array of alternative practitioners – an acupuncturist, a homeopath, a naturopath, a psychic healer, a BioSET expert. Any activities or outings with friends were computed well ahead of time in terms of food needs and parental support; I could do almost nothing truly spontaneously.

This is one book cover I’d be happy to never lay eyes on again.

As I slowly regained my stamina (which I’m not sure the practitioners or our fanaticism actually had much to do with), I drove myself mad with worry. During that time, I had a nagging belief that I had caused my illness somehow – perhaps through poor diet, exercising too strenuously, stress, or moral failing. This was my way of feeling in control; if I could cause an illness, I could also reverse it somehow. But this logic also meant that any minor slip-up could be the one that sent me into another 3-month horror show of severe infirmity. If I accidentally ate something not allowed on my strict diet, or if I failed to tell an important detail to my homeopath, or if I overexerted a wee bit and was tired the next day – that mistake, to me, meant a one-way ticket back to hospital.

Additionally, my time in online support groups for illness had overexposed me to New Age, mind-controls-the-body theories – think Rhonda Byrne, Bruce Lipton and Joe Dispenza. I took it all way too literally. I believed that worrying too much about illness would itself make me ill, which trapped me in a bizarre infinite loop. I remember the anxiety would particularly come on at night, and I would sit awake crying to my mom about how scared I was, and getting scared because I was scared. I think it came on at night because the day I had been hospitalized, I had gone to bed feeling stable and awoke screaming and feverish later in the night. The night was the unknown, the leap of faith; I thought I would go to bed normal and wake up with no intestines. And that it would have been my fault.

None of these fears quite ended up coming true. While I continued to weather great difficulties with my health over the next six years, I never once got as severely ill and dependent as I had during that first flare-up. I had to accept that maybe there was no real way I could have prevented this; that the cause was just not known. Or further – that even knowing the precipitating cause doesn’t always mean much as far as how to reverse the illness. (For example, many people who have mast cell activation disorder developed it after an infection like Lyme, but Lyme antibiotics are usually not sufficient to treat the disorder.)

Starting around April of 2012, I gradually returned to a normal diet (except for being gluten-free due to a diagnosis of early-stage celiac). I let myself exercise more, starting with just one lap around my block and building to 3-mile jogs. Although my body did not respond as well to the exercise as it used to (possibly due to anemia), it was clear that I wasn’t doing something harmful. Slowly but surely, the circuitry of fearing my every move broke.

July 2, 2012 after one and a half miles of walking. I was a bit deconditioned.

Yet something had shifted in me by this time that has never fully resolved. Perhaps it was the natural inversion of the “healthy” version of myself pre-illness who still had some very questionable beliefs about what allowed her to be happy, and why people get sick or unhappy. It’s often not the “illness itself” that we fear. It’s what we associate with it; perhaps a loss of identity, a loss of community or friends, a loss of self-expression, a loss of ability to provide for oneself or others. I will address this in a future writing if I am able.