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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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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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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.