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I Might Have My Shit Together

It’s funny how people talk about “getting their shit together.” It’s like, does anyone reach that point of, “Hey guys, you know what? My shit is together. There is nothing more to be done here.” But after this year I feel like I’m pretty damn close. I may in fact have my shit together.

Pictured: a person who probably has her shit together. Photo by Tim Savage from Pexels.

I don’t know why this is coming up for me now. My emotions don’t alway process in sync with dates and anniversaries. But maybe it’s the approach of Rosh Hashanah. Maybe I’m hurtling toward a time when last year, I didn’t think I would make it to 2019, and wasn’t sure I wanted to. Maybe my body knows something I don’t.

A year ago I was terrified I would never feel happy or have any quality of life again. My brain was under constant assault. I described it to my dad as “traumatic stress disorder.” There was no “post-“. The worst fate I could imagine at that time was going through another day as bad as the one I’d just had.

In some of my absolute lowest moments, where I could not function cognitively enough to read a book, listen to a song, or play a computer game, I somehow managed to come up with the idea of hiring someone to coordinate my health care. I was scared that answers to my predicament might be locked inside me, and it would take some serious organization to pull them out. My dad found someone fitting the specs and now I have a patient navigator working for me.

Around the same time, a serendipitous discovery resolved my most distressing symptoms – not enough to work or exercise, but enough to not feel like I was being tossed in a washing machine at all hours of the day. Armed now with a few usable hours, I used them carefully, setting about what my friend Bethany calls “constructing a mental prosthesis.” I used the 7am-8am window to plan the rest of my day, since my brain could not function enough to make decisions the rest of the day. That very simple model grew on itself until I was generating daily to-do lists of upwards of 30 or 40 tasks…and going to bed with them all done. I started developing a detailed complex of protocols to make decisions for me throughout the day, with regular engineering to minimize “crashes” (which were just any time I had to make a decision on the spot, exhausting my reserves).

With a trashed working memory, I made it so the only things I really needed to remember were: look at to-do list app for what to do. Look at “Unscheduled Time” protocol if there’s nothing planned in the app. Write any new ideas or desires in the Notes App – my to-do list app scheduled regular time for me to look through these. For the first time in my life, I was following up on every new idea I had, sorting them into lists that I actually utilized. I was writing regularly. I was listening to new music every day. I was contacting a different friend or family member every day. My calendar every day was full of new adventures, albeit often very small ones that accounted for my frequent inability to comprehend a five-minute video. I learned that doing a very small thing is better than despairing that you can’t do a large thing.

And here you thought people won’t work unless they have to in order to eat.

I stopped getting trapped in wishing for what could be. I stopped wishing I was someone else and focused on learning to draw out the gifts I did have. I learned how to break the cycle of decision paralysis, though I often forget. The point is at least knowing how. I’ve learned lessons that I won’t soon forget.

I got in touch with all the people who I was scared my life was too lame for, and made sure everyone knew they were important to me.

I learned to ask for help once I needed help, rather than asking in a way that let on that I already knew the answer. Among other things, this led to actually asking writers to look at my work and to co-writing a play with my aunt.

I realized I could be as proud of the work I put into taking care of me as I had been of my work as a research assistant in the past. I asked my patient navigator to give me a co-author credit on the presentation he made about me for a conference. He said yes. I had, after all, essentially taken my own history for it, putting something like ten to fifteen hours into that part alone. All of a sudden, when I was at social gatherings, instead of saying I had been “working on my health” as usual, I could say I’d co-authored a scientific presentation. About myself! How cool is that?

I quickly found like-minded and like-bodied patients online and dove into that community, and was repeatedly overwhelmed by their kindness and ingenuity. I was surprised and amused by the access I had to prominent advocates I had admired from a distance. “Remember that filmmaker and that author I like?” I tell friends. “I talk to them every day now.” In fear and wonder I started properly nerding out about my medical condition instead of running from it. I fought self-stigmatization telling me not to identify with a life of illness, and wondered how people that brought me so much laughter and validation could be considered a problem.

I set tough boundaries with people around me. I stopped fearing being too much. I let myself be difficult and a handful sometimes. I realized that I was still easier company than the people running my country who made everyone in the world deal with their shortcomings. I stopped lying about how well I was and letting those lies hurt me and confuse others.

I watched my country and planet start the descent into fascist mayhem. I despaired over my government’s indifference to migrants and needed to do something. But unlike in my college years, I didn’t put disproportionate labor on myself in order to get activists to include me. I accepted that giving money can be the most strategic and sensible thing, if not the most gratifying.

I got my family relationships in order and taught my immediate family how to support me with my illness. We started replacing hurt feelings and resentment with humor, organization, and acceptance of conflict. I instituted weekly meetings for us to tackle the ins and outs of my medical care, and it turned out that my care is so much work that this was really warranted, probably from the beginning. I kept weekly assignment charts, and by my count we’ve gotten *forty-five assignments* done since our first meeting on June 14. The medical system is good at creating work for us! So is my body.

I learned that I am not synonymous with my feelings. I learned that objective observation can yield answers if you let go of the outcome you’re attached to. I stumbled upon mind-blowing insights by accident, in a spirit of science. I developed a “spidey sense” and sussed out problems in my medications and environment one by one. I gained my parents’ support as they saw that my suspicions were often correct. I let my body make the rules when medicine didn’t have a clear-cut answer. My body became the boss.

It’s just hitting me how proud I am. At my worst moments in 2018 I remember clinging desperately to a voice I thought I heard from the future that said, I can’t believe how well it turned out. I’m brought to my knees. I don’t know why I was spared. I know I can be a bit of a cheeseball about these things. But I really do make an effort to not exaggerate what happens to me medically. And I know in my bones that whatever I lived through last year was unutterably, intolerably bad.

I feel blessed and pinch myself every day and want the world to know. And yes, I am disabled and I need to bitch about it a lot. Both are allowed to be true. In fact, I think the latter allows the former to happen.

I came away from hell with the intimate knowledge that the human spirit in me, what makes me me, cannot be destroyed. It is worth protecting and caring for. And it also has its shit together.

Nora Helfand is a writer and former research assistant. If you like this blog, support her on Patreon here and follow her on Twitter at @nhelfand.

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Shout Your Pain!

Photo by Pixabay from Pexels

On May 2, I was offered some rare hope that a pelvic pain condition I had struggled with for many years could improve. My doctor put forward a solid plan for what we would try, with the option of nerve block injections if more conservative treatment didn’t work.

I felt tremendous relief when she told me this. She took the condition seriously. She acknowledged that it was a major concern for me. She knew I had had years of physical therapy with disappointing results. So of course, I left with more pain than before I came in.

Wait, what? Yes, I believe that offering hope to a patient in pain can amplify the pain temporarily. It’s pain that one has become resigned to, and blind to. To exist in a body in pain can cause you to downplay it after a long enough period of time. Action and struggle have failed to liberate you, and they only serve to pain your pain, add alarm to alarm.

An unfortunately common camp of pain treatment attempts to pathologize our very normal reaction to the onset of pain. We are listening to our somatic alarm system and trying to convey its message, only to be accused by those claiming to help us of over-focusing on pain and thus perpetuating it. The accusations are rarely so agitational as I’ve laid out. They come with a saccharine, compassionate face, making them all the more maddening. “Poor thing, so stressed,” they muse, veiling the judgment that you’ve somehow stressed yourself into a medical fiasco. “You’re so much better,” they cheer, as your tissues move to their satisfaction and you grimace from the pain that is blacking out your ability to respond.

It is very easy to convince someone that they are at fault for their situation, even simply by omission. Our evidence-based treatments have been applied, you’re still in pain; well, what’s wrong with you? Didn’t you love all that science? Are you being anti-scientific? Get your mind off the pain and get back to your life.

“But, Nora,” the pain whispers. “I’m still here. I matter.”

In 2013 I allowed myself to be subjected to exercise testing at the OHSU Human Performance Lab. I had been experiencing widespread pain for six months and fatigue for longer. I had to run on the treadmill until I reached maximal effort – a VO2 max – and endorsed that I was too tired to continue. The doctor and his assistant took a blood sample, hooked me up to some electrodes and a blood pressure cuff, and stood me on the treadmill with a spirometer in my mouth. The treadmill was started, and at regular intervals I was asked to rate my perceived level of effort on a scale from 1 to 10.

I said 1 or 2 at the beginning. The speed and incline increased, though I don’t think the pace was any more than twelve minutes per mile. I started to feel uncomfortable. My chest tightened, my muscles burned and yawned, my face flushed hot. I said a 5 or 6. I felt that I would run myself into the ground. The doctor asked if I thought I could go long enough to get just one more reading. I gasped a yes as the room spun. I heard a “Got it!” and then the machine was stopped.

I felt the weight of the workout crash down on me, and the stunned doctor’s eyes on me.

“You said a 5 or 6 when the machine was showing us that your body could not continue any longer,” he said.

I didn’t say anything.

“You are drastically under-perceiving the stress on your body,” he marveled.

Under-perceiving. I had thought for all this time that I was over-perceiving. Others seemed able to accept pain and get on with their lives; why wasn’t I doing that? I guess I was at a 10 and thought I was at a 6. Maybe I also thought everyone else was at a 10.

Every year following that treadmill testing I would receive a new diagnosis – postural orthostatic tachycardia syndrome, lichen sclerosus, vaginismus, adrenal insufficiency, mast cell activation disorder. These were the diagnoses that came up when I barely complained and hid many concerns from the doctor, convinced they could not help. What would they have come up with if I complained a lot? What if I complained in proportion to the problem? Well, I suppose that would mean complaining all day.

I hope I can find the strength to pain my pain more. Let it find its voice. This effin’ hurts and it’s okay.

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Use It And Lose It

Writing and editing this piece revealed to me some defensiveness. There is a strong impulse to tell – my body does this and this is why – and not show. I think I might know part of why. It’s what I felt I had to do, continually, when friends, medical staff, and authority figures repeatedly failed to mirror to me the experiences of my divergent body, to show me that they were real. Perhaps I appeal to an invisible authority in my writing to hand down some explanations, some realness that I was not afforded. The experience of worsening with exertion rather than improving was so primary to me that I assumed everyone knew what I was talking about. I question what is real even now.

Photo by Lukas from Pexels

One thing I wonder if healthy people experience is the sense that activity is actively weakening you rather than strengthening. I have felt before that exercise was eating my muscles or brain.

I started noticing this in maybe my sophomore year of high school. I described it as the “gunk” I would get in my legs after track practice that meant I wouldn’t recover properly from the workout. I knew instinctively that if I rested and avoided running on hills, I would run better than if I did the hard workouts. I remember the almost ill feeling that would come over my legs as I slogged through an interval training session, and the dismay when I would be slower and weaker the next time I ran. My freshest legs and best race times always came at the beginning of the season. “She can run one week, but can’t the next!” my coach once mused.

Why wasn’t I assigned an easier workout regimen? Looking back, this idea seems reasonable. Yet I hazard that it would have run very counter to the culture of competitive running. The standard mantra of athletics (perhaps of society as well) seems to be “no pain no gain”; you push through pain to ultimately achieve resiliency and benefit. You certainly don’t ask for a special exception to be made when everyone else at your level is working so hard. My struggles were easy to typecast as, at best, part and parcel of the painful sport of running – or, at worst, a weakness of character.

When my coaches doubted the urgency of my body’s cries for relief and kept pushing me to do more, I began to question it too. I remember that during my more disastrous workouts, I would write parts of a poem in my head called “The Cross Country Coach’s Lament,” from the perspective of an anguished coach chiding an obstinate runner. “The time that on the clock does read / it matters not to me” is the line I remember the best. “You’ve surest longing in your eyes / yet run so _____ly.” (The adjective never got filled in to my satisfaction.)

However, when the stakes became higher than running a good race, I was forced to contend more seriously with this problem. At the onset of my severe illness, I became so intolerant to exertion that the effort of standing to watch part of my teammates’ race could mean I missed school for the entire next day. I was sleeping up to fourteen hours a day and was scared to shower, feeling that I would pass out. For someone who used to be able run a mile in under six minutes, this was a big shock. I had been diagnosed with celiac disease and inflammatory bowel disease (IBD), but the people I met in online support groups with these conditions didn’t share my “exertion intolerance” problem. Again I found myself the freak, but now I was even a freak among freaks.

The fatigue improved dramatically with biologic treatment for the IBD, but when I tried to gradually return to running the following summer, something seemed off. A leisurely 2- or 3-mile jog at 12-minute-per-mile pace would spike my heart rate to 180. I would finish with a lightheaded, beat-up feeling, and not experience my previous “runner’s high.” I had built up to this level of activity at what was, to me – a former varsity athlete – a painfully slow pace, having started with just walking one time around the block per day and increasing to two blocks when that got too easy. Why wasn’t I feeling stronger? Was this out of proportion to the deconditioning (medical-speak for loss of fitness after long periods of bedrest) that I experienced when I was very ill?

Life with chronic illness flies in the face of what we are told about our own resiliency. I do believe it’s important to try new things fearlessly as often as possible, but to also trust my body and know that it often worries due to very real past upsets. The various ways I’ve learned to protect my body – certain postures, avoidance of certain situations like standing in line, minimal hair and makeup products, saving mental energy by being a bit “rude” – are all very easily stereotyped negatively unless viewed with an open mind.

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Coming Up For Air

Photo by Engin Akyurt from Pexels

One of the core cruelties of chronic illness is that the condition itself can muffle your ability to describe what is happening to your body and brain. In my worst moments over the past year, I have often spent weeks to months with my powers of expression muted, the words bobbing up transiently for air before disappearing back into a preverbal ether. I was “in there,” but there was no telling what would bring me out.

When significant improvements occur, I can suddenly speak, but by then the problems are often past tense anyway. From an email to my doctors after one such breakthrough: “I woke up feeling ten times better mentally than I ever do in mornings. There was less fog, less low motivation, less depression and anxiety, less weird dizzy or swimming feelings, less hypersensitive emotions.”

I had not been able to arrange those various symptoms into a coherent list for months, except for during small rare bursts of adrenaline. The symptoms would seal me in and prevent me from effectively seeking medical help, let alone support from friends, the actualization of writing down my experiences, the empowerment of learning about my conditions and meeting others who live with them, or really any kind of enjoyment or pleasure at all.

Alone with my infirmities and demons, I was backed into a corner to either succumb or recognize my worth and slowly dig myself out. It was adapt or die. When you spend any period of time so limited that the mental energy to watch a five-minute YouTube video often eludes you, you learn to cut the bullshit real quick. The little embarrassments I had over having such excessive needs just couldn’t be taking my energy anymore. Nor could anger at not having a different situation, someone else’s life. Conflict takes energy, including conflict with oneself. I am becoming better at sensing whether something is really worth my limited resources.

I don’t have a job. I am bored and at home a lot. I don’t do much. But I also do a lot. I work damn hard in ways others won’t see, and that sometimes I don’t see either. And yet, sometimes just existing and knowing your friends and family know you exist is enough.

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Something To Hold Onto

I guess I want to tell you it’s getting better in some way. Maybe there are more superficial ways that will become more manifest in time. The physical therapist who had a plausible explanation for why I have failed over a year of pelvic floor physical therapy and thinks she can help. The fleeting, sputtering moment of clarity where I told my parents that I was relying on the executive functions of a mentally and physically ill 24-year-old with long-standing ADD tendencies to manage the care of a complex patient – the aforementioned 24-year-old – and we regrouped and got some help with care coordination. The unknowable time at which the anhedonia lessened and I could truly enjoy a few things again, for who knows how much more time. The support of parents who allow me to breathe a bit and stop being a full-time advocate who cannot advocate.

But I feel I do myself and others a disservice by romanticizing. For months I’ve been wandering a weird mix of trauma, hypersensitivity, depression, aggression, and brain fog, such that I often cannot even remember enough to describe how my day went but know in some vague sense that it was bad. I weather weird assumptions about my quality of life based on physical symptoms or labels, wanting to scream that I would cut off all my limbs if it meant I get my brain back. I have learned what it means to spend hours of a morning wracking ones brain for how to do a morning routine, then 10 minutes of that morning trying to attend to a 101-level lecture online, then the rest starting to go to the gym but being so agitated I have to get out. I have learned that maybe it’s ok that this is the first time I’ve felt able – as in, focus-wise, genuinely capable – to write a blog post since the last one. I have learned that even the fogginess isn’t so bad when your mind and body remember how to be calm. It seems not so long ago that mine truly did.

I have wielded diagnoses as a Something To Hold Onto, validation from a mystical board. Of course I don’t feel well, I inform you. I have celiac disease, Crohn’s disease, postural orthostatic tachycardia syndrome, lichen sclerosus, secondary adrenal insufficiency, and mast cell activation disorder. All of these are real; laboratory tested. Yet it’s an armor against how none of this explains what is going on; why I sometimes find even good and pleasurable thoughts torturous, like fingers raking into lava veins of nerves; why I feel worse and worse mentally despite no major demands on me, some improvements in physical conditions, and few other life stressors; why I scream threats at loved ones and then minutes later am relaxed and joking; why I haven’t truly slept through the night since December; why even gentle medications or supplements often lead to agitation and dysphoria. I haven’t had a single break from reality through all of this, always excruciating awareness that I sometimes wish I had some escape from. I don’t want to see myself behaving as I do. I don’t want to see others wanting to reach out and to not have the heart to tell them that lately, company often makes things substantially, critically worse. Harder. On. Me. Not. On. Your. Ego. Insistence on what I know I need, attunement to a soma trying perversely to protect me, becomes paramount.

I both hope I remember and forget this time at some point. At times I’ve looked back at my early days of illness through Facebook memories and feel generally what I should; compassion for the person involved but great relief and wonder that I am not her anymore. How odd that now I would gladly trade my current situation for hers.

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Schedule Your Worries

I read some article a few months ago about scheduling your worrying. That is, if you’re a compulsive worrier, try this: schedule a time slot like 6-7pm that is allotted to worrying, and get it all done then. If you find yourself worrying outside of that time period in a way that does not need to be addressed now, you say, “Hey, it’s not time for that yet. I’ll do it later.” It’s like the worry equivalent of no snacking between meals.

I thought I might try this today, specifically with worrying about my health. Until my allotted hour this evening – with the exception of remembering necessary steps like calling the pharmacy or messaging a doctor – I will not research my health issues, I will not research treatments, I will not read online support groups or post in them, I will not express worries to my parents about my health, I will not plot my next medication or lifestyle changes.

My instinct is to say that writing blog posts outside of “worry time” is ok, since this is a positive connection to friends and the outside world, whereas worrying about health is typically isolating, obsessive, and rarely as fruitful as one likes. I also think that activism and reading about issues facing patients and doctors more broadly is likely ok.

I’ve been doing this experiment for roughly an hour and I’m humbled by how difficult it is.

I realized there was a bit of a non sequitur in my last post. It may not have been immediately clear to the reader – or myself – if/why it was connected to the rest of the piece. I wrote:

“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 believe when I wrote this I was trying to yell back at the part of me that still (wrongly) blames myself or my attitude for my current situation. This is the part of me that turns to woo, magical thinking, and hopes of spontaneous remission when things are going very poorly, and then typically ignores those things once things are going well for reasons that usually don’t seem tied to any of the woo. Rather than approaching care for the holistic body-mind as a good in itself that can bring benefits for health, but not Solve Everything, I tend to get drawn in by marketing language that suggests cure or remission. It’s a little odd, because if a medication or procedure doesn’t work for me, I don’t blame myself for that. No drama there; it just wasn’t for me. Yet if a special diet or “brain-retraining program” doesn’t work for me, I must not have been trying hard enough – at least, this is often the irrefutable rhetoric of their vendors. (Note that I haven’t actually splurged on one of the brain programs. The funny thing is, my guess based on reviews is that the most beneficial thing they’d do is help me to do is to calmly cope with limitation, not make limitation disappear as they claim.)

So I don’t wish to bash meditation or yoga or anything that keeps you calmly rooted in your body. I wish to bash any time I have told myself everything is in my head and under my conscious or unconscious control. I wish to bash the times I still tell myself, “That healer I saw would have helped me if I just stuck with it for longer.” I wish to bash the times I’ve told myself, “That therapist was the only person who could have helped me.”

That “blaming” or “fixating” part of me does another similar thing. It insists that any time not spent researching treatments or doctors is a wasted opportunity. It’s that constant nag that freelancers know, the “If I am not working on work, something is wrong.” The gaping reality here is that most of that researching happens when I am in too much of a fog or state of worry to garner real help from it. While I am glad to be empowering myself with knowledge, I might as well be doing 1 solid hour per day of this empowerment/worrying and it would probably have a similar positive impact to 6 hours – without the same damage to my personal relationships, sanity, and balance.

Right now, things feel so far out of my hands. I have had so much drama this week that one would think I would worry more. But I have caring and listening doctors, something that has made all the difference in the past years. I’m taking a step today to let them worry a bit. Not me. I’ll be over here with my heating pad.

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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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On Certainty

Last time I wrote about how when I was horrifically ill in my senior year of high school, I developed compulsive fears based on the notion that I had caused myself to be sick. While the fear and anxiety appeared during the illness, the core belief driving them had existed for longer. When I was healthy, I believed on a certain level that I had caused myself to be healthy.

I never would have said it so bluntly, and maybe would never have become conscious of this belief had it not been so rudely challenged. But there are reasons we value our health and view it as something we don’t want to lose.

For me, the thing I most feared losing was the ability to run, competitively or for leisure. In high school, endurance sports were my passion. I ran cross country and track and I cross-country skied in the winter. These activities were hugely beneficial in my life. Growing up I had been prone to occasional Very Bad Moods where my thoughts would turn dark and angry and I would become sullen. After I started running regularly the mood episodes disappeared; I remember maybe a single incident, but otherwise I was calm or cheerful nearly all the time. Further, I gained new mental abilities that I had never had before at all, chiefly flexibility. Before I started running, tolerating a change of plan or being spontaneous was not at all in my wheelhouse. I feel that vigorous exercise “balanced the chemicals” so that I could exist more in the moment. I received comments from friends on how despite being one of the top students in my class, I never seemed stressed or worried.

Cross-country skiing on Mount Hood.

Additionally, running gave me a sense of community. Yes, I made lifelong friends on my teams, but beyond that I felt a sense of shared purpose that transcended whether I liked each individual or whether they liked me. Whatever squabbles or drama might have occurred, as a squad we were united behind our race strategy and our dreams of success. I developed a kind of wolfpack mentality, that I had everyone’s back and they had mine.

Given all the benefits running had for my life while I wasn’t doing it, and how darn good I felt while doing it, I did not want to believe that it was something I could lose. It had become a way of being, an identity. When teammates had to retire their careers due to injuries or medical conditions, I didn’t want to fully see it. I didn’t want to believe it could happen to me.

Yet in my senior year of high school, plagued by fatigue and post-exertional malaise, I had to face my greatest fear head-on. It could happen to me. Letting go of my participation in sports, not knowing whether temporarily or permanently (it has been permanent so far, but I have been able to do varying amounts of exercise over the years), was extremely tough. But what was tougher – and indeed, hasn’t really happened for me – was letting go of the need to know, to be certain. The need to be able to pack what I saw in the world into neatly labeled boxes that would rest easy in the dusty attic of my brain.

When I was a kid, I thought doctors were certainty. I remember one time around age 8 or 9 when I got some vague illness, with a stomachache, fever, and fatigue. I remember my only real concern being whether I would throw up, since throwing up scared me so much. Seeing my distress, Mom took me to the doctor (I think it was the ER), and I had it in my head that this doctor knew whether whatever I had was going to make me throw up or not. I don’t remember what the doctor said other than that I was probably going to be fine, but somehow in my mind I twisted whatever she said as a reassurance that I was not going to throw up – because who would care about anything else? Knowing this stuff was the doctor’s job, dammit. I didn’t realize that Mom’s concern was probably more along the lines of “Is my child going to develop meningitis and die,” but this would have seemed more trivial to me.

After that ER visit, I was still sick and tired and would remain so for a couple days, but my distress and fear was entirely lifted. I had projected onto the doctor this certainty that in reality she could not possibly have provided, because nothing in life really can.


istockphoto

My health will be good was one thing I probably used to think was a certainty – again, even if I wouldn’t have said this was true, I acted as if it were true. Another more specific thing I had learned was when I get sick, I know I’ll get better. This was just true based on experience – every time I had come down with some kind of problem, it never lasted too long. Even my longer-lasting medical issues had never been stumpers – usually easily treatable issues like anemia or molluscum.

But as weeks turned into months that fall of 2011, life exposed to me the lie of I know I’ll get better. For the first time in my life, I truly didn’t know and nor did my doctor, though she had an educated guess. I was one of her more severe cases of IBD, and, not understanding my treatment options very well at that time, I could not say if I would ever hold a job or attend college.

Having done both now (though never full-time on the job front), maybe you should feel reassured reading this. What I was able to do was somewhat adapt to the changes in my abilities, and ask that my college and employers adapt with me. What I never can predict with much accuracy is what those abilities will be – next minute, next hour, next day-week-month-year-decade. I step into uncertainty the moment I wake up – but boy do I fight acceptance of the unknown. I do not want to keep guessing at whether I will be strong enough to make dinner tonight, whether I will be able to focus enough to enjoy a book or write a blog, whether the next treatment I try will be a game-changer. To this day, I demand a certainty from my doctors that they are unable to give. I want them to tell me they know I will get much better, so much better, and that they know exactly how to do it. Reassurance and hope are definitely something they give me, and it is appreciated. But they will never give certainty. All I can do is contemplatively step into the questions, and sometimes I take great spiritual comfort in letting go of the need for an answer.

But boy, isn’t that a pain in the ass to have to do all the time?

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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.

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Everything Changes

I took the Mayo Clinic art tour yesterday. Yes, you’ve read that right. It turns out that in addition to their renowned coordinated medical care, the Rochester, MN clinic’s buildings are home to an impressive collection of paintings, sculptures, and glasswork rivaling many museums. According to the pamphlet accompanying the tour, “Mayo Clinic has always believed that restoring the mind and spirit is an important part of making the body well ­­— and that art and science together play a role in the healing process.” Over the years, benefactors have supplied a collection that includes the Auguste Rodin piece Jean d’Aire, a Flowers series by Andy Warhol, a massive glass sculpture collection spread throughout the Gonda Building featuring works by Dale Chihuly, and many more artists who I would name-drop if I were cultured enough to know which ones to name-drop. Some of the contributing artists or benefactors were treated at Mayo or have family members who were.

 

The Plummer Building, Mayo’s oldest building still in use today (dedicated 1928), is basically a work of art itself (I thought that was just my original thought but the pamphlet says “the Romanesque-style building is a work of art in itself, both inside and out”). It’s fifteen stories high, topped with a bell tower complete with a fully functional carillon and surrounding balcony. The exterior of this tower is adorned by stone gargoyles, griffins and, as I learned on the tour, busts of women meant to honor the nursing staff. The interior of the Plummer Building just screams, “We have no idea the global economy is going to crash next year.” Take a look:

Mayo Clinic
Actual doctors work here.

Image from mayoclinic.org

But the piece that gave me and most tour-goers pause was a kinetic piece by Israeli sculptor Yaacov Agam, simply called Welcome. Agam’s son was treated for a heart condition at Mayo in 1975. The tour guide quoted Agam on the tour, and I later found the quote here: Agam meant for the piece to help patients and their families “rise out of the gray of individual worry and respond to life’s ever-changing rainbow of possibility.” A YouTube posting of the sculpture is unfortunately way sped up; I encourage you to watch my 2-minute real-time video of the slowly rotating solid below for the intended effect. My comments will come after so you can form your impressions first.

If a picture is worth a thousand words, then there’s a thousand words for each of the infinitely many iterations this piece begets. So let us talk about the change itself, a process through which Agam makes us sure we’re seeing one thing, then nudges us through the medium of time until we are definitely seeing something completely different, but can’t quite recall how we got from A to B. The timing is gentle enough to give the illusion that we can somehow comprehend the mystery, track it clinically and incrementally; and yet the sum of these small changes creeps up on us, and forces us to reevaluate. We must adjust to a new paradigm that – despite being the result of every small change previous to it – makes itself appear sudden. And yet every attempt at adjusting will again be slowly swept away as the picture changes. Sometimes the picture is incoherent, too busy, too many moving parts. And sometimes the coherent picture can only be seen on a panel that is fading from view.

Watching the piece in person, I felt something awaken in me at the cellular level. My medical problems have of late taken on the labile, ever-changing quality of Welcome. The diagnosis I received at Mayo this week – mast cell activation disorder (MCAD or MCAS) – describes one of the more chaotic and bizarre conditions a doctor might see in his practice. Dr. Lawrence Afrin, one of the pioneering researchers of the condition, writes in his diagnostic guide that “the general presenting motif of MCAS is chronic multisystem polymorbidity, generally of an inflammatory theme and with assorted elements waxing and waning over time, sometimes in synchronization with one another but more often cycling with different periods and amplitudes.” Or in English – the symptoms can happen in any body system – eyes, ears, mouth, lymphatic, pulmonary, cardiovascular, gastrointestinal, genitourinary, musculoskeletal, neurologic, psychiatric, metabolic, hematologic, or immunologic – and they all can wax and wane, independently or not, with no discernible pattern.

 

I have known the “gray of individual worry” of which Agam speaks. Long-term illness drills some fear-driven habits into you that are sometimes necessary when you are very ill, but become maladaptive as soon as the situation changes. Illness trains you to label and analyze everything your body does, to become a bloodhound for potential upset or danger. No longer can you let a stomachache just be a stomachache; it’s a sign, or a data point, or a harbinger – something requiring action and documentation. But with something like MCAS, where symptoms can not only appear seemingly at random but also go away just as quickly, how much use is it for my life to get bogged down in the details?

 

At the same time, it feels hollow to say that when my careful documentation of these symptoms is what allowed me to obtain a diagnosis in the first place. But what I need to work on more is my stifling habit of judging and labeling these symptoms, the now-reflexive projection into the future of “Because I have a headache now, I can’t go to the party that is in four hours,” or “Because I’ve had severe mood swings for two days [something that happened earlier this week], I will feel this terrible forever and won’t be able to write a blog.” This tendency is a relic of a time when my health required so much management that it was often safer and smarter to preemptively say no to everything. But at this time in my life, the answer to change is not immediate judgment but observation and adaptation to rapidly shifting realities. It is time to shed the “gray of individual worry” and step into that “ever-changing rainbow of possibility.” What exactly that will mean remains to be seen. I leave you with the double rainbow that touched down over my AirBnB when I got to Rochester: