The Numbing Wall

I suppose I should start by saying that I won my battle with the insurance company! I apologize that it has been so long since I have written. I could blame it on being in grad school. Or on this increasingly frustrating bout of writer’s block. But excuses are futile. I haven’t written because I haven’t known what to say or how to help. I’ve been busy, yes, but mostly just out of motivation.

It happens sometimes – that brick wall that shows up right when you thought things were going so smoothly. And when the only option seems to be to keep bashing headfirst into that same wall, it’s sometimes easier to just ignore that the wall exists. And that the pain exists. Sometimes the easiest option is simply to shut down from it all for a while and be numb to the whole process.

To sum up the past few months…

  1. I won my battle with the insurance company, but only just after I was told I needed eye surgery immediately.
  2. The scar tissue in my one good eye (the left one) had begun to grow into my vision.
  3. The insurance company then sent me on another wild goose chase about paying for the surgery.
  4. I managed to win that battle, too!
  5. The surgery went incredibly well, and my doctor used a new technique that will hopefully keep the scar tissue out of my sight and away from attaching to my eyelid for good.

So that’s my health right now: I’m back on my Remicade treatments, my vision is back to my version of normal (plus my left eye is detached from the eyelid!), and I’ve even been able to start back doing yoga and reading for more than a half hour at a time. Life is going well, even in the statistically average sense.

I have yet to celebrate, though. There’s certainly been several heavy weights lifted from my shoulders, but I feel very calm. It’s not even that I’m waiting for it all to fall apart again, like I usually am when good things happen. No – I’m just moving forward. Step by step. No frustration, no overwhelming joy, and still no anger. To answer my question in the last post, “Where has all the anger gone?” I have to say that it’s been replaced by the numb feeling I described earlier – the one that involves running headfirst into a brick wall repeatedly.

I’ve not talked about this feeling before with others who have autoimmune or other disorders. It’s sort of difficult to describe, really. It’s not that I don’t feel the day-to-day moments of gladness or stress. It’s just that on a scale from 1 to The Story of Us* I really only hit about a 0.5 these days. And when it seems like a 1 or a 2 might be in the cards for a certain conversation, I’ll make a joke to tone it a notch.

I wonder sometimes if anyone else ever feels (or doesn’t) this way. Is it a coping mechanism, or just normal life? Maybe for those of us who know long stretches of intense emotion the day-to-day lack of drama starts to feel like a void when in fact it is just the art of being normal. Statistically average. Except that which may seem statistically average in America is not the same for the entire world. My worries about medication for my RA seem so small compared to the daily worry for much of the world’s population about being able to have food or clean drinking water. Maybe instead I should rejoice in my ability to relish spikes of great emotion, because I live a life where I can have moments of selfishness, where narcissism is a growing problem, and where “entitlement” is a pet peeve of those who drive cars and go to the movies.

I think that perhaps we are all caught up in a cycle of moves based in survival and emotions spent too quickly. On the one hand, we see emotion as a weakness, but is it not truly a privilege? Those who cannot afford to drown in emotion are those whose thoughts must always be on survival. And yet those who act only on emotion often commit the most selfish, self-serving deeds. What is this luxurious set of impulses that separates us from other animals? How do we communicate them to each other through complex words and sentences that are truly what separate us from each other? Why does running headfirst into the brick wall of a problem start to make me feel nothing at all?

I usually like to finish my posts with a positive message of motivation. But this time, I ask instead to hear about your motivations. Not because I need compliments (please refrain from them, actually). Not because I want a pep talk. No, what I want is to hear about what motivates you. What are your coping mechanisms when things are tough? What motivates you when things are normal? Where do you turn when life stagnates?

What is your numbing wall, and how do you get past it?

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Scratching the Surface

The past couple months have been a bit of a whirlwind: moving, birthday, leaving my job, and starting grad school. In the movies, the start of an adventure is much the same. The take-off is rocky, you are introduced to a whole new set of wacky, lovable characters, and then set forth on a life-altering journey! But the movies don’t typically take into account week eight of the journey, where things are harried, the main character hasn’t really adapted yet, and the destination is still eons away.

What I have entered, my wonderful readers, is the training montage.

This is where life gets particularly tricky. Sure, motivation is still somewhat high, the stakes are clear, and the goal is evident, but the path is covered in fog. Or, better yet for my personal metaphor, the lens is still covered in scratches. You see, fog dissipates.

For the past week, I’ve been experiencing a growing headache. Light was becoming a burden again. That glaring friction in my left eye was returning, searing into my pain threshold and blurring my vision. Some of my worst fears were creeping back into view as pain and light sensitivity seeped into my daily routine: Wake up. Lie face-first into my cold, dark pillow for at least half an hour. Take Tylenol. Rinse my eye, and lie there for another half hour praying away the thick pain of a migraine stabbing through my left eye. Get up for a few hours to try and get work done. Repeat.

This has been getting worse each day, and the brutal memory of years lived this way have quickly found their way into haunting my every step. Is it starting again? I think, Is the inflammation back? Is the pain back… for good?

There are so many of us who live this way. Walking to MARTA last week, my knee felt funny, and I worried the rest of the afternoon if the winter would be rough on my joints this year. What if the Remicade stops working? Even on days when life is relatively normal, those tiny worries sink their teeth into our thoughts, raising our adrenaline and heaping on the allostatic load. Cases of adrenal fatigue in patients with autoimmune disorders–really any chronic illness–must be high. For years people have cautioned me to relax, to stop worrying, to take a vacation. And yet, I find it exceedingly difficult to meditate, and taking a vacation from one’s own mind is relatively impossible.

This morning when I awoke, the pain was worse than ever. I had wasted most of yesterday curled up in bed, and the fear began to set in that everything would stay just out of my reach. First career choice? Gone. Chance at a “normal” life? Zero. And now this, grad school, my most yearned-for and inevitable-seeming life goal–would that be snatched away, too? Replaced by another round of years spent hiding from lights behind sunglasses, losing my hair to Prednisone, wasting two to four hours every day to that insatiable monster called Pain?

And then it occurred to me: Change your lens.

Severe scarring on my eyelid means that I have to wear a bandage contact lens to keep from getting corneal scratches. And much like the pain of a scratched cornea or intense inflammation, a small nick in a contact lens begins with the feeling of an eyelash lodged beneath one’s eyelid. Add the uneven surface of my own eye and the ease with which my eyes become inflamed, and that small annoyance can mimic great “discomfort.” Sure enough, as soon as I replaced my bandage lens with a new one, the pain began to evaporate.

Like changing a scratched lens, it can be helpful at times to shift one’s view from his own blurred perspective. Fear of pain, fear of loss, fear of failure, and fear of loneliness are all scratches that blur our vision from time to time. They can create lasting scars and cripple us for life, or we can upgrade our treatments and change out our lenses. Even a scratched cornea heals with time. And–as I saw recently on the streets of Atlanta–even a man entirely blind can find someone to help guide his way, tapping along the sidewalk with her own stick in sync with his and chattering away merrily.