Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.