My Sudden Sight

eyes2Last night, I watched the movie Cake, which stars Jennifer Aniston as an ill-tempered woman dealing with chronic pain. Seeing her move slowly and robotically, small gasps with every effort, brought back some difficult memories. But also a clear sense of strength and of hope.

As anyone with chronic pain can tell you, it becomes so much more than a physical nuisance. As hours turn into days, days into months, and months – sometimes – into years, even the smallest discomfort becomes a nagging, petulant child. It sears through your every thought and bears down, constantly testing your emotional capacity to function like an average human being.

For me, waking up has been the hardest part of my day for 7 ½ years. Right now, I wake up sluggish, but with minor discomfort. The dryness in my eyes is easily cured with a drop or two of TheraTears and some eye-rolling to work the solution around. It didn’t used to be so easy. Immediately after the hospital, before I started wearing soft lenses to protect my eyes from the rough scars on my eyelids, I would wake up to near unbearable pain. I would spend an hour or two just praying to go back to sleep so I didn’t have to open my eyes.

The room at my grandparents’ was dark, its single window shaded, and I had a bathroom to myself. Most mornings I would get up, use the bathroom, and start getting ready to walk downstairs without opening my eyes. It was still painful, but not as painful as having to open my eyes. Certainly not as painful as blinking or walking into the main part of the house where the harsh sunlight pelted me with rays like acid.

After each surgery, things seemed immediately worse, then better, then worse again. The pain pills masked the abating pain for a week or two, and the high doses of Prednisone kept the inflammation at bay until I had to taper down. I quickly discovered that pain pills work best when you stay on schedule, even setting an alarm to wake you up in the middle of the night. Otherwise, you wake up crying out loud from the pain – in my case, tearless.  There are still some days when I hit a rough morning, take some acetaminophen, and wait another 30 minutes for it to kick in before opening my eyes and starting the day.

Regardless of whether or not I wake in pain, the fear of that pain lingers. After a year or so, thick scar tissue grew across my right cornea, and I eventually convinced my doctors to let me wear the soft lens in my left eye full-time. The pain lessened, and there were even some days that I felt in control of it. But the fear of that pain remained. With each slight discomfort came a wave of adrenaline and the frantic thoughts of how to stop the pain before it started. There was one year where every Wednesday, it seemed, I would come home and have to lie in a dark room for an hour, forcing my eye open with my fingers to put in drops every so often until the pain became bearable. It was like a timed migraine radiating from my left eye socket. They came untimed, too, forcing me to lay my head down on the desk at work in between customer service calls, covering my face with my arms to block the florescent beams.

But that was four years ago. I have come so far since then. If had you told me then that I’d still be fighting to recover, but functioning on a much higher level now, I’d have shed liquidless tears of joy and unrelenting dread.

Pain is more than nerves firing to tell your brain something isn’t okay. Pain is a trigger for reaction – bodily and emotionally. Pain that returns again and again is the harbinger of a fear that sits deep in your thoughts for maybe the rest of your life.

In the face of all that pain and fear, it can be difficult – impossible – to find hope that it will ever end. Four years ago, I did give up hope. I told myself that the pain was my new life, and I would just have to learn to deal with it. Without that hope, the pain overwhelmed me, and I nearly drowned in the worst depressive episode I’ve ever experienced. I wish I could say there was a moment where everything changed and suddenly my passion for life revived! It was, instead, a slow and grueling climb back to some semblance of normal.

There was, however, a moment that gave me the first taste of hope I’d savored in a long time. In May of 2011, I saw a new surgeon in Miami whose procedure (briefly) gave me sight again in my right eye. The surgery didn’t take, and the scar tissue grew back. The pain lingered, and the depression got worse before it got better. And yet, there was this one week were I began to recognize the faces of my loved ones again. It was enough.

I believe, now, that is what I meant when I started this blog and named it “SuddenSight.” It is that moment of hope, that brief flash of light from a tiny hole to world of “normal.” Removing the bandages and correctly counting the nurse’s fingers with my right eye for the first time in three years – that was my sudden sight to hope again.

What’s yours?

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.