In layperson’s terms, something attacked my optic nerves. They are a group of nerve fibers that transfer visual information from the eye to the brain. Mine swelled, when the inflammation went down, the nerves were damaged beyond repair. The result is optic neuropathy.
My eyes, ironically, are perfectly healthy except for the nearsightedness first identified when I was in junior high.
I’ve been tested for every disease, condition, genetic disorder currently known to man and even those unknown, nothing has revealed itself. I had shingles on the back of my thigh ten days prior to my vision loss, but a spinal tap at that time showed no shingles virus in my spinal fluid. I remember seeing that procedure on medical shows when I was a kid. I was both fascinated and terrified, which would also be an accurate description of losing my sight at times.
I could continue on with the other wonky symptoms that occurred at the same time but this post is not about the events of November 2012, nor is it about my anatomy lesson above. I saved the following a few years ago but failed to record its source. It says everything you need to know about optic neuropathy.
“The dramatic loss of vision experienced by optic neuropathy patients is life-changing and affects patients and their families socially, emotionally, and financially. Optic neuropathy severely curtails patients’ ability to perform day-to-day activities, significantly reduces their autonomy, and alters their life choices.”
All of these have been my experience. My husband suffered a cardiac crisis eleven months after my vision loss. It was dire, yet he will tell you he was never so scared in his life as he was when I woke up blind. My closest friends are my family. They visited me in the Philadelphia hospital (an hour from where we live) that first week of darkness, a few making the trip multiple times. Their husbands came too and although I couldn’t see any of them, I felt their fear and compassion. It was a force. Even the men, this specific group not typically emotional, were shook. These women have been there from the start, never shying away from going out with me which requires some navigational assistance, always offering a shoulder to hold on to. They are happy to help with describing colors I am no longer able to see, they are infinitely generous with their eyes. Conversely, I parted ways with two friends because of my sight (they were not part of my family above).
As for the feelings, although it seemed to me and others that I was coping as well as anyone could, when my primary care physician suggested I see a therapist a few months after the loss of my sight, I thought it over and decided to try it. It’s been eleven years; I continue to learn so much about myself as well as tools for whatever comes my way. And when the grief of my blindness rears its ugly head, I have a professional to sit in it with me.
I could no longer pursue my career as a corporate meeting planner, meaning we were down an income. We struggled financially, never easy, but made even worse by the new life optic neuropathy had birthed.
That’s what occurs when the optic nerves become compromised. What happens next is up to you. It will not be easy. It will take time. You will adapt to most things, some you will have to leave behind. A lot of what I do on a daily basis is as difficult today as it was on day one. Every time I leave the comfort and safely of my home it feels like the first time with impaired vision. Almost twelve years in, I am known to yell out, “It’d be so great if I could see!,” when trying to do something in my house that in the past would have taken me a second. I shout that without even realizing it, then I get on with it, the release alleviating the pressure until the inevitable next time. There are moments when the loss is as fresh as it was that initial year.
Always extremely independent, I am as much so now as I can be. The inability to drive is the biggest thief of self-sufficiency to me. Then there are the little things I cannot do without help, such as cutting my toenails or using a credit card machine in a store.
An optic nerve is 30 mm long. Yet when they aren’t operating properly, they change every inch of you.
#sisterrain #alittlesightalotofheart #legallyblindwriter #blindnessisaspectrum #opticneuropathy #visuallyimpaired #blind #theopticsofopticneuropathy
