An obligatory ER picture on April 27, 2016
5 years ago tomorrow, I was immediately admitted to the emergency room at the local hospital for my legs going instantly paralyzed. It was a strange few weeks leading up to the day. I had a sharp pain in my right quad that was pervasive and unrelenting. I had dropped a lot of weight for no reason. My primary care was on standby if anything were to change.
I was in an appointment and was nearing 5 pm. My legs started tingling and thought I was losing feeling. I took a pause to call my primary care to ask what to do. She said, “go to the emergency room”.
I thought that was silly as I had to go to work the next day. I’d already taken time off for an emergency colon abscess hospitalization, more mental health days than I care to admit, and was just 10 days past turning 40 and was loving fitting in smaller clothes. I looked fabulous, except I had an electrical storm brewing inside.
I don’t remember much except falling in the parking lot to my car, getting to the ER where I bypassed intake and was surrounded by more than one neurologist doing all sorts of pokes, prodding, hitting all my reflexes, touching me with tuning forks, seeing if I could feel being poked with sharp toothpicks… all part of a neurological exam I have memorized these days and know what each one means.
I was admitted as soon as a room opened up. All I was told was I would be given the “MS” work up. All I knew was I was scared with pain that felt insane as how did I walk so confidently that morning to not feel my legs in the afternoon?
The MS work up was plenty of blood tests, a full brain/spine MRI, and my first lumbar puncture that I was curled in a little ball while they poked a needle into my spinal cord space to collect cerebral spinal fluid.
I got my diagnosis two days after admission—transverse myelitis. I didn’t care. I wanted to get back to work. This wasn’t real. My legs would just be normal. I was started on heavy IV steroids. Recently finding an old MRI report showed I had a lesion at the conus medalluris, which means I got lucky essentially.
To make a very long story short about that time, I left with a walker still questioning as I took a month off for near daily physical therapy. My 4th time landing in the hospital that year, I was given IVIG where the neurology team questioned if I had GBS or a combination of both. I remember the neurologist scheduling me a follow up appointment stating I had something seriously wrong. IVIG at least let me walk out of the hospital that time.
I kept falling and breaking bones. I couldn’t make the follow up neurology appointments as I was determined to keep living a normal life and making it to work.
Until a final broken bone broke me mentally of every shred of normalcy I was attempting to hold together with weak string and cheap tape. I gave notice at my job, sold my house, and went to live with my family.
A lot has happened in one day shy of 5 years that doesn’t make much difference for this post.
On the Eve of 5 years later, I’m technically considered a paraplegic as my right leg doesn’t work—ever. My left leg does sometimes.
I hate to be cliche in saying there’s gifts in illness as it’s sort of like a beautifully wrapped package that you open totally disappointed that it wasn’t anything you wanted, so it’s like a crappy gift.
But 5 years later despite the pain of chronic illness, the debilitating effects of physical disability, the just plain exhaustion of living life with the terrible gift inside that box, I’m celebrating the lovely packaging.
I have taken charge of my health by being committed to exercise and eating healthy for me. I can officially call myself a paid writer. I’m a commissioned artist. I’m training to be a yoga instructor. I live on my own in an adorable house that is being remodeled to be completely wheelchair accessible.
There have been painful relationship losses. there have also been wonderful gains. I have an amazing friend who truly is like a sister (from another mother, thank goodness for that!). With her encouragement, I did a sort of boundaries “smack down”. It wasn’t nearly as cruel as that sounds.
I basically realized I gave to the detriment of myself. When my time of need came a few months ago, all these people I gave to in honest ways were nowhere to be found. So I began asking to have conversations about my feelings. Some did. Some ignored me. Some expected me to just keep giving.
So a lot of people left. With each departure, an opening happened. I felt more lighthearted. New people walked and wheeled into my life as everything could become a touch less serious. I never gave up on people. I just wanted to talk. I also came to understand that some people I thought were friends didn’t have much time for me. It’s ok as some of them I value very much. Others not as much so I don’t pursue it. We all are allowed to make choices about who we have in our lives. I stopped begging.
I started having seizures a bit ago (the hypothesis is blood sugar related. Will be seeing endocrinology in a couple days), I had a decent concussion just over 4 weeks ago, and with losing my license and literally bashing my head in, I had to ask for help from people who would gladly give it without any conditions or expectations as I realized I had to and deserved to put myself first.
So it’s a happy 5 year anniversary to my paralysis birthday as I venture through life with some incredible people who don’t take everything from me leaving me feeling hurt and confused. I have my chosen sister who I love and a handful of people who don’t know a ton about me except “Lizzie lost her drivers license? I better get her out of the house”. Or others who give their time through calls or supportive messages.
So happy 5 years to growth, being able to ask for help, and having zero clue that losing my ability to walk would accelerate me to a place that feels ok even with the difficulty (mostly).
Getting better at “tree pose” with the help of my forearm crutches