LHON – I Won’t Forget The Day We Met

On September 24, 2013, I met you and you changed my life.

My phone rang. I was a bit annoyed because I was getting ready to go out for the night. I did not have time for any chit-chat. I looked at my phone and It was my Neuro-Ophthalmologist. It was weird. I wasn’t expecting a call from him considering I had just seen him earlier that day.

He had some news. “I have your DNA test results,” he said, “It’s positive.” – he paused for a moment. “I am so sorry you have this, but I’m glad we finally know what’s causing your vision loss.” He also mentioned that you were here to stay. Funny, I don’t remember inviting you here. My doctor finished with some supportive words and we hung up.

I sat there for a moment. Wow. We had been searching for you for 6 months. I wrote down your name and number. I didn’t know you, or why you were here. I had a bad feeling that you were about to change my life.

I walked to the other room and told my husband the news. He didn’t know anything about you either. We didn’t say much more, and within a few minutes, I was out the door as planned.

It was my monthly Bunco night with my girlfriends. The thought of canceling never crossed my mind. Why should I? I wasn’t gonna let you, a complete stranger, get in the way of my wine, women, and fun. But, deep inside, you scared me. You made me feel anxious. Should I be worried about what you were doing to me? 

Sitting in front of two of my closest friends, Robin and Ursula, I brought you up in our conversation. I said, “Okay, so, I just got a diagnosis. It’s a really long name with a number. LH…umm, something. I don’t really know anything about it. I think it may involve my kids too. I don’t know…”. It got quiet. I started to feel numb. Perhaps in shock. As people arrived and the night went on, you weighed on my mind — forcing me to think about you. I kept pushing you away. You just appeared in my life an hour ago for god sakes! Back the f*ck off!

When I returned home, my husband told me that he read about you on the internet. You were my worst fear. I heard the word “blind”. I heard that you could also cause my kids to lose their vision. OMG. Not my kids. I can not fathom my kids going through, what I’m going through at some point in their lifetimes. I had heard enough about you. How dare you come here and do this!  

But, you don’t care. You don’t care one bit. And, little did I know, you had the balls to unpack your shit and setttle in months ago. All without me ever knowing, until now.

It was getting late. I’ll read more about you tomorrow. This isn’t going to be a big deal. I’m driving, I can still see, okayish, and I’m managing just fine. Yeah, I’ll be fine. Everyone will be fine. You want to stay? FINE! Make yourself at home Lebers Hereditary Optic Neuropathy – #11778, or LHON, or whatever you want to be called. I’m calling my good friend Miss Denial tomorrow and she is fierce! She is gonna keep your emotional shit storm away from me for as long as she can!  

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The day I was diagnosed, after 6 months of many doctors and tests, was one I’ll never forget. LHON is still here causing me problems at times, but we get along a lot better than we used to. Unfortunately, I “see” no signs of it moving out any time soon. Damn squater!