Blurred Vision
I’d like to think that I was in a good mental state prior to getting sick. I mean, let’s be real… how many parents of little ones, thick in the trenches of parenthood, will say they’ve “got it all together”? No one. And if you stumble across someone who claims they DO have it all together, run in the opposite direction because they be crazy fo’ sho’.
But all kidding aside, I was happy-ish, energetic-ish, and content-ish. That’s winning in my book! In fact, at the start of my sickness, I was at the tail-end of a Winter Challenge at my pilates studio: I had to complete 25 classes between Thanksgiving and New Year’s. The competitive side of me took over and I actually completed it several days before the end of the year. In fact, I remember showing up for classes with ear pain and a low-grade fever. Because… anything for a free tank and bragging rights.
When my symptoms began, I took a 6-week break from working out, hoping to allow time for my body to fully heal. For anyone who lives a semi-active lifestyle, this change in your daily routine is extremely difficult. Not only was I unable to release endorphins naturally, but I was missing the time I spent with my workout buddies and now battling self-image issues in the process. Every time I would try to workout, I would end up crawling back into bed as soon as I got back.
It didn’t help that this was around the same time as one of my busiest seasons as a musician. Solo & Ensemble equates to long rehearsals followed by a full day and a half of sitting on a piano bench accompanying an endless amount of students. At that point, I was battling a lot of vision and hearing changes as well as pain in my neck but I fought through it to get the kiddos to their performance. In fact, I had my first round of nerve blockers the day before competition.
During a choir rehearsal in mid-February (weeks after my first round of nerve blockers), my body turned against me. When my hands began to shake in the middle of a song, I assumed I had drank too much coffee on an empty stomach. My eyesight was next to be affected, making it almost impossible to read the music. I became very lightheaded and asked for a break to drink some water. Unfortunately, when I returned to the piano, I was so disoriented, I couldn’t tell if I was actually playing the correct notes. It felt like a disconnect between my eyes, my brain, and my fingers.
When I left the rehearsal, my blood pressure was elevated, my shakiness turned into full-blown tremors, and my eyes were having a hard time focusing on anything in particular. I managed to make two phone calls: one to my husband to pick me up and another to my neurologist to demand an appointment immediately.
When Neurologist #1 stated that I “must have had an anxiety attack,” I walked away and scheduled an appointment with a new neurologist.
Neurologist #2 was very thorough. He first ruled out Occipital Neuralgia (the original diagnosis I referred to here) and began a 6-week process of trial and error. He prescribed me medications to combat fibromyalgia, migraines, seizures, and ordered every neurological test possible.
“With an MRI here and a CT there,
CTA, EEG, EMG, NCV,
Old McDonald had a farm,
e-i-e-i-oooooo”
Whoops. Old habits…
Like I was saying, Neurologist #2 tested for everything, from a brain tumor to Multiple Sclerosis, all the while coming up empty-handed. You would THINK hearing the words “negative” or “unremarkable” would be reassuring but after a while, you start to feel disappointed when everything comes back normal! Was this all in my head?!
This pattern of appointments, tests, medications, and no answers led me to a very dark time in my life.
My symptoms were made worse by my everyday activities - playing piano, working out, even driving! So I was forced to quit accompanying, postpone the reopening of my piano studio, take a long hiatus from working out, and alter almost everything that made me.. Me. I felt like a shell of who I once was. The many medications would add to my daily fatigue and make “adulting” almost impossible.
At my worst, I would sometimes spend DAYS bedridden, leaving my husband to single-handedly take care of our boys. Unfortunately, even on my best days, I was stuck in a terrified state. I was constantly waiting for the next episode, the next symptom, not knowing if I would completely lose my eyesight or hearing. I shut myself off from the world, assuming everyone around me was tired of hearing me complain and worry.
I stopped being able to see life clearly. My view was altered and skewed, so completely flipped upside-down from my norm.
Though I have a history of anxiety, I'm not one to battle depression. Before I knew it, I was stuck. As easy as it is to slip into that dark place, it is even easier to stay put. My body had so perfectly molded into the hole I had now found myself in. Darkness and negativity were now my closest friends and I had no desire or strength to climb out.
I started seeing a therapist once a week to talk through the major changes this year has brought me and to learn how to adjust to my new normal. During our first session, she said, “I have to ask each of my patients if they are having any thoughts of injuring themselves or someone else” and my initial response was, “Of course not!”
But then I thought for a moment and said, “Well, some days I wish for a cancer diagnosis… just so they can find it, cut it out, and start treatment. And then I can move on with the rest of my life.”
Well. If that doesn’t qualify as suicidal thoughts, I don’t know what would. I mean what kind of a healthy individual wishes for cancer?!
Her reply: “Someone who’s tired of hurting and tired of searching.”
I so easily took for granted the stability of my old life. My white-picket-fence-3-kids-and-a-dog life. I got too comfortable.
“In some weird and twisted way, I am thankful for the trials this year has brought me.”
I have re-learned who I am as an individual. I have confidence in myself, apart from my reflection in the mirror. I now give myself endless grace and have lowered my own expectations.
Sometimes my husband and I play the “Worst Case Scenario” game - usually right before I go in for another test or another procedure. It’s a way of calming myself down by staring my fears straight in the face. And in all of the scenarios, my worst case scenario is, well, death. But for the first time in my life, that doesn’t scare me so much anymore. Because it’s all about perspective. And trust. And faith.
