Once More Into the Breach

eyesI’m sitting in a hotel room in Miami, mere hours from the next chapter in what has become a seven-year climb. I suppose I could think of my steady stream of surgeries as a mighty war against the scar tissue that continues to threaten my vision. Tomorrow’s surgery is but one battle of many in a long siege that the guerrillas seem to keep winning. Each time the surgeons believe we’ve beaten back the insurgents, and each time the inflamed warrior rises again to conquer!

I could see this as a mighty war, but no. Instead, I choose to see these trips as tricky crags on the mountain of my life. A mountain I have no intention of quitting, no matter how Sisyphean the task may seem. And Sisyphean the task may yet be…

In May 2014, my Atlanta doctor performed a surgery on my left eye (the one with full sight) to cut back the scar tissue which connected the eye to the eyelid. He stitched a donor cornea over the surgical site, hoping it would act as a barrier to keep the scar tissue from returning to envelop eye and eyelid again. By July, however, the attempt proved to have been in vain.

The tissue has returned in full force by now, and I am seeing Dr. Scheffer Tseng in Miami to try something old, but somewhat new. This time, it is a surgery of my own suggestion – one that I am proud to say Dr. Tseng agreed would do well to calm the tissue. He technically did a similar surgery for me in 2012. Despite medication and attempts to bring back sight in my right eye, the pain of it all was excruciating. Constantly inflamed, the scarring on my eyelids from 2008’s bout of Stevens-Johnson scratched mercilessly against my eye. It was far worse for the right one than the left.

Tseng believed the scratching may well be what caused the inflammation to ruin his remarkable surgery that renewed sight in my right eye for a few months. It had gone well at first! But as has been the case with the left eye, the scar tissue pressed forth – and in the right eye conquered all. So he used cheek tissue from my mouth to resurface the inner eyelid of my right eye, stopping the friction and easing the pain. And ever since my right eye has been blind, but calm.

Tomorrow, he will repeat the surgery on my left eyelid. It is my belief that the scar tissue continues to grow in an effort to protect my eyes from the constant scratching of the scarred eyelid. I hope that removing this friction will mean that the scar tissue no longer has a need to grow. Essentially, I’m negotiating with the terrorists of my body – not unlike the Remicade infusions which calm my RA.

And so, my friends, I go again. Once more into the breach. Once more up the rocky surface, with my fingers strong and my feet steady, hoping to make it past this next incline. Let’s hope for the best!

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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?