“What does September 24th mean?” a friend asked as we sat in a group at a party.
I looked over at him and said “What?”. It was so random and had nothing to do with the current conversation I was having.
He asked again. “What does September 24th neam?”.
“Umm, I have no idea,” I said. “Why are you asking me that?”. I started feeling like I should know this date for some reason.
“It’s the date on your tattoo.”
“Ohhhh, THAT! You mean September 24th. 2013!” I said as if I had just figured out the extra credit question on a seventh grade history test. “That’s the date I was diagnosed with LHON.”. Geez! How did I knot remember that!?!
I thought a lot about that few minutes of forgetfulness for a couple of days. It was so weird. My mind had been a total blank. Had the biggest sucker punch of my life become that insignificant? Was it because the question was so out of context and random? Was it because he did not say the year — which is also on my tattoo? Or, was it because the date does not completely crush me to the core as it once did.
Perhaps it is all of those things..
On September 24, 2013, I got the phone call that changed my life forever. After six long months of doctors, questions, spinal taps, MRI & CT scans, IV steroid treatments, and what felt like gallons of my blood drawn, a mitochondrial DNA test came back with the answer we had been searching for. My test was POSITIVE for Lebers Hereditary Optic Neuropathy (LHON) – mutation #11778. My caring and compassionate Neuro-Ophthalmologist had to break the news to me over the phone. It was a painful conversation for both of us. I felt a wave of relief and flood of disbelief. In the weeks that followed, doing any kind of vision test was torture. All of them continued to prove my worst fears — any hopes of my eyesight getting better were washed away by salty tears. I was deemed legally blind just in time for the holidays.
And now…here we are. Seven years later.
I have come a long way living with LHON. If you follow my blog or social media you’re caught up on most of my struggles, shit shows, and successes. I believe many of the incredible experiences and opportunities I’ve had, along with new (and not so new) friends, have slowly forced the impact of that day to take a seat. Whoa! I hadn’t realized how much healing and growing I’ve truly done over the years, until I was put on the spot with that question. What an eye opener! Pun intended. As the years rollI by, I might forget the DATE of my diagnosis — and I think that’s ok. However, I will always remember the DAY I got my diagnosis. The day my world was changed by a test result and a phone call — and that’s ok too.
P.S. Just for the record…
If I had been asked, “What does September 24th mean WITH the year 2013 included in the question, I would have fucking nailed it!!!
Other Blogs I Wrote About My Diagnosis Day:
Ready Or Not, I’m Comin’ Out! (January 2014)
Do You Remember The Day You Got Your Diagnosis? (September 2014)
LHON, I Won’t Forget The Day We Met (September 2018)