I’ve started writing nine blog posts in the past week. I’ve finished zero.  All of them had something to do with the “good” that has come from dealing with the debilitating eye disease I have faced the past three months. But the words just aren’t jumping onto my paper like they normally do. It feels forced and fake.

I keep trying to write about what I have learned through this experience, and how it has changed me for the better. I want to share how I now see the world clearer with a laser-like focus on what’s important.

But I believe in always writing with authenticity and with truth, and the truth is, I’m struggling to make sure this experience — this experience that was painful and scary and the lowest time in my life — doesn’t change me for the worse.

I have always been in awe of people who face adversity with courage and grace. The ones who can see the beauty in life through the pain, who don’t get angry for their bad fortune in life, who find a higher purpose despite the indignities they face.

I am not one of those people.

I was selfish.  I wondered why this — this awful illness that took half of my vision and kept me away from the people and life I loved — was happening to me.  As someone who believes deeply in karma, I wondered what bad deed I committed in my past that deserved this fate. I even started questioning my faith.

Then I got angry. Each day that passed seemed to be worse than the one before it, and doctors’ visits became slaps in the face instead of discussions of progress. The constant stream of bad news weighed heavily on my psyche, and hope became a four letter word. A bitterness I had not felt since facing infertility a decade before crept slowly up my soul like bile in my throat

So I cried. A lot. I cried like a baby in my husband’s tired arms, on my mom’s weary shoulders, or through the phone to dear friends who were trying to hide their fear. More tears stung my eyes as I heard my children leave through the door in the morning or when I knew they went to bed, knowing that their Mom couldn’t care for them, or sometimes even walk to their room to kiss them good night.

Shame came next, and came hard. Shame for losing my gratitude, losing my optimism, losing myself. This disease was not fatal, How selfish of me for complaining about my eyesight while I watched friends and family deal with cancer, traumatic brain injuries or unfathomable accidents.  I felt shame for wasting the grace and generosity so many people afforded me, shame for not seeing the beauty in the small moments I did have. How could I not see the painfully wonderful good that was coming out of this situation?

I wanted to be strong, courageous and grateful, but it was just too damn hard.

Then I would feel good for what felt like a second. One good moment when I felt something, anything, like the person I was before my world turned upside down. And you try to go on and believe that everything will, just maybe, be okay.

I have learned that there is no right way to handle adversity. When the shit hits the fan, all bets are off.

When I one day look back on this time, I hope that I see there is strength in vulnerability and courage in letting yourself break down during the tough times.  While this illness that shook me to my core did not always bring out the best in me, I certainly watched it bring out the best in others, like my husband, friends and family. That may be the good I am so desperately seeking.

What I do know is that every situation, every road bump in life, is different, and every — every single one of us who are suffering through our own battles no matter how large or how small — deserves compassion. It is okay to break down and it is okay to need help.

I’m not sure where I am in this chapter of my life story, but I I am thankful to once again be able to exchange my fear of the unknown with optimism that I will find my new normal. Each passing day my body gets stronger and my heart weighs less. I no longer need to rationalize the why’s of this, and can focus more on the what’s next.

How has this changed me? What have I learned from this experience?  It may be too early to tell, but this I know:

I am broken.

I am human.

I am a survivor.

And, one day, whenever that may be, I will be better person because of it.

On April 17, three and a half weeks after my first symptoms, I was diagnosed with acanthomoeba keratitis. Acanthomoeba is an amoeba that invades the cornea of the eye and may result in visual impairment or in some cases, blindness. In the United States, it is often associated with contact lens use. 

%d bloggers like this: