There is a picture circulating on social media of a 3D perspective picture that completely changes when your perspective changes. It's by Patrick Hughes at the Birmingham Art Gallery. Google Superduperperspective and you can see the video for yourself. It's pretty amazing. From one angle the picture jumps out at you with a pyramid of images. Then as you move to to the right or left suddenly it recesses back with corridors moving away from you. It's really astounding. It is a visual example of how much difference perspective can make in life.
I spent MLK weekend in the hospital again, Optic Neuritis was the latest Latin name to be added to my string of words that now shape my life. Basically inflammation of the optic nerve was distorting my vision, making it blurred and giving me headaches. Now, when you are an avid reader like myself, not being able to read is a stab to the soul of who I am. Not to mention, the ability to read is an integral part of day to day living from paying bills, to reading mail or a recipe. Fortunately, I am a good enough reader that I could read a text or FB post if it was brief by looking at it and quickly reading the sentence as a whole, or most of it at once. I could type because my fingers pretty much knew where to go, but proofreading? Ha! And a full page of any text was a blur of frustration.
High dose steroids over 4 days helped my vision slowly improve and the headaches diminish. But when I got home, instead of feeling better, I felt worse. Dizziness and overwhelming fatigue continued to dominate my once enthusiastic personality. Then the heart palpitations started. I'd felt them before, but they never lasted. This time they lasted throughout the night. I'd wake up, frown, take a deep breath and try to ignore it and go back to sleep. This would repeat every hour. Finally I sleep for two hours, then 2 1/2. When I awoke. They were still there. I tried to ignore them, but it was disconcerting so I called the dr. They told me to call 911. My response? Seriously?! Do I have to? They said yes, and though I didn't think I was having a heart attack, I didn't really think that was a particularly good day to die either, so I called. I asked them to not use lights or sirens and chewed up the aspirin as directed.
That was one of the oddest experiences of my life. Hooked up, checked out and off to the ER. Ugh. The paramedic attempted to start an IV line in the ambulance on the bumpy roads only to blow out a vein. Yeah, that was a surprise....not. The palpitations subsided some, though not completely, but did not present as a concern on the heart monitor to the dr on call. Again, not a surprise. So they hooked me up to monitor to wear for the next 7-14 days and sent me home. Still feeling off, I decided to start the meds prescribed for my nerve pain that also doubled as anti anxiety meds. I didn't feel anxious emotionally, but maybe that was the cause of this new sensation.
Instead of feeling better, I felt worse. I slept most of the next day, and through the night as well. I awoke exhausted, light headed, and dizzy. It was like living in deep dark fog. This was no way to live. Every drop of life felt like it was being sucked from me. With great effort I booted up the computer and did a search for the side effects of the two new oral meds I was taking for fatigue and the nerve pain. Both of them listed many of the same symptoms I was feeling. I decided to stop taking both of them.
Slowly, the fog began to lift. A day went by when I didn't take a nap, I slept through the night and awoke without my head spinning. Then the day came when I woke up and felt ok. Not perfect, but not awful. It was AMAZING! As the day went on, my energy improved. My brain clarity increased. I actually felt bored. It was the first time in over 3 weeks that I actually felt almost human.
Here's the thing. From the waist down, nothing had changed. It is still hard to walk without support for any distance. My legs still tingle, especially my left. They are still very temperature sensitive. But after the way I felt the rest of this month, they hardly even mattered. Perspective. Just like the picture that goes from pyramids to corridors, my legs had gone from a major concern to a minor one.
I still have a long way to go. I still hope to increase my mobility and I know there will still be down days. My vision still isn't 100%. But there has been a shift within me; a gratitude for a sense of normalcy I had not previously appreciated. It's a lesson I hope to hold on to. I have said many times, I know it could be worse. I believe that. I understand it intellectually. But emotionally, I held tight to my pouty lip of disappointment for my new reality. Until my new reality changed and spiraled down to a whole new level of despair. Now, my previous level of discomfort is reassuring.
I think my brother summed it up best when he wrote me this, "Nothing like feeling like crap to make you appreciate feeling so so " Amen, brother, Amen! :)
Kristen is a former kindergarten and special education teacher with two wonderful grown children, two precious fur-baby dogs and a mischievous cat. Diagnosed with Transverse Myelitis in September of 2016 and Multiple Sclerosis in December of 2016, and Optic Neuritis in January 2017, life has changed in a big way in a short amount of time. But HOPE springs eternal as she rediscovers and reinvents life along the way.