Try, Try Again

Do you ever wake up and just think, “Not today”?

For those of us with chronic illnesses (or even difficult habits), finding a way out can seem like an impossible task. After years of trying, the trying itself can become a monstrous chore. I know I have certainly had moments where giving up looked like the best viable option. Except, I would remember, giving up means getting worse.

There’s an anxiety that undergirds every new treatment. What if it doesn’t work? How much money am I wasting? How much time am I wasting? How much time do I have left, anyway?

Today I’m going into the eye doctor to be fitted for scleral lenses. Essentially, they’re large, hard lenses with a reservoir over the cornea to keep fluid on the eye. The hope is that this will ease inflammation and keep my eyes from growing scar tissue in an effort to protect the cornea. Sounds fantastic! Frankly, I’ve been hoping to get these for a few years now, but the expense wasn’t an option until just now.

Yet there’s still that voice in the back of my head – the one that reaches down and twists my stomach into knots. What if it doesn’t work? the voice asks. What if this was all for nothing, and you go blind anyway?

It’s a ridiculous notion, really. I’m in no danger of going blind anytime soon. We have several other options before that even becomes a worry. And yet, it remains my worry.

When my anxiety is high like this, I often turn to friends to vent. A simple text message at midnight to my sister will calm me, even if she doesn’t have the chance to respond until morning. For me, it’s about getting the words out of my head and sharing them with someone who cares. Other times, I might find it helpful to talk to a friend who makes me laugh or to watch something funny. I’m proud to say I own every episode of Monty Python’s Flying Circus, and it never fails to take the edge off.

My last resource, as a left-brained “Virgo”, is to plan. I plan what I would do if I did lose my sight or my ability to move freely again. I am instantly grateful for my vivid imagination and my dreams, for regardless of my physical condition, those have remained untouched. I have always loved writing and storytelling, and that has been my solace.

When I was first rebuilding my life in 2008-09, I happened upon a film that changed my life. The Diving Bell and the Butterfly is based on the memoir of a man who has a stroke and loses everything but his ability to blink his left eye. Through months of calculated blinks, he shared a story that gave me strength in that first year.

I actually haven’t thought about his story for a long time until now. Perhaps, if the appointment this afternoon does not go well, I will come home and read his book again. I can find hope in the powerful story and gratitude for my ability to read. Then tomorrow, I can research something new to try.

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Where has all the anger gone?

With the vast popularity of shows like CSI or Law & Order, we’ve grown accustomed to hearing common criminal justice terms like “mandatory sentencing” or “contributory negligence.” One term has always struck me as odd: “victimless crime.” I have never been certain whether a crime could ever truly be victimless. Is the person committing the crime not harming himself? The term further begs the question: Can there be a perpetratorless crime?

There are several stages of grief that a person undergoes after losing someone dear. Likewise, there are stages a person undergoes after experiencing a trauma. Both can involve stages of anger, denial, numbness, fear, guilt… The list goes on. In my experience, I have only understood the stages after I’ve passed through them — sometimes years afterward — and their passing has never signified a decided end to the experience. Instead, the overlapping stages have become almost cyclical, and still usually only recognized after-the-fact.

Last week, I went in to see my doctor after experiencing acute eye pain, which turned out to be excessive scar tissue growth. In one month, the tissue went from being stable to threatening the vision in my one “good” eye. The disappointment was staggering, coupled with a dizzying nausea at the thought of yet another painful surgery. It will be somewhere around my 15th eye surgery since 2008, and I am none too pleased that it comes so soon after nearly a year of promising eye stability. No, this quick change for the worse has come not from my own negligence, but from insurance denial of my RA treatment’s medical necessity.

I know what most people’s first reaction would be to this: anger, denial, fear. Mostly anger, to be sure. After years of inching forward, it would only make sense that I be furious with this company for denying my much-needed treatment, thereby threatening my vision. Yet while I certainly feel some fear and anxiety, anger has long been a difficult emotion for me to conjure. Yes, a doctor prescribed the medication that started all of this; her intention was to help. Yes, this surgery is unplanned, unwanted, and greatly frustrating; I have walked this path before. Yes, the insurance company is a clear villain in this difficult scenario; the friendly representatives have not caused me personal harm.

What does one do, exactly, when there is no clear perpetrator to an egregious crime? Who deserves my fury? Where might I lodge insults and create calamity? When is it appropriate to unleash my grief?

Grief requires anger. Emotional trauma deserves reparation. And yet, no single person seems guilty. And no fury fires in my gut.

I have read quite a bit on the stages of grief and of trauma, and I find so little to be said of those who push past and move forward. Not all who move forward have also moved on. There’s so little to be said for those with no clear demon. Not all who fight have a well-defined foe. And so little has been said of those who fight inside the lines. Surely not every battle must be bloody and public.

For now, I turn to the cogs and file a complaint with the appropriate department (the insurance commissioner’s office). For now, I wait within the delineated rules and continue moving forward. For now, I ignore the dragonless void that leaves me swordless, and I hope the democratic system I love will not fail me.