TLDR (too long, didn’t read): I had two ‘psychogenic non-epileptic seizures’ or ‘episodes’ over a weekend combined with some stressful stuff happening, and started experiencing extreme leg weakness. I feel like ‘leg-weakness’ doesn’t fully encompass the pain, 2 hospital trips, 4 days I spent being helped to/in the bathroom, and then 5 days inpatient. But alas, I have Functional Neurological Disorder (FND), complete with PNES (psychogenic non-epileptic seizures), movement and motion disorder (jolts, tics, hip bucking), and functional leg weakness (the bones and structures are intact, my legs just aren’t listening to my brain right now. Insignificant, but also found some bulging discs at C5-6 and T1-2 and I’m doing my PT strengthening. We’ve upped some medication, we’ve added a new one. Shocker, and I seem to be leveling out again. Does anyone else feel like their adulthood is marked by larger and larger pill containers?
There’s a handicap placard with my name on it now at my GP. All of this is just so bonkers to me. In the week leading up to this unfortunate series of events, I admit I may have overdone it. I pushed to get house things done, and my stuff physically moved. For what feels like weeks now. And the last 10 years of my life feels like I’ve been on the run, but not from something, maybe just for something.
This wasn’t my favorite setting to learn a lesson in, however, with the help and care of so many special nurses at midtown, I got to listen and learn so much wisdom from my body. There is such a wealth of knowledge in the nurses, physical therapists, and occupational therapists who showed up for me. I saw medical professionals, who didn’t quite know how to treat me, show up and try to get me answers anyway. They struggled to get my pronouns right all the time, and it didn’t feel good to have that misunderstanding between us, AND, everyone was trying so hard, being so respectful and working hard to make sure I felt safe. Except for you James, I’m still praying for you man.
Ultimately, I had an awakening about my body that I’m even now still avoiding in this post. I am disabled. I was in a wheelchair for several days, maybe a little over a week? I cannot express how inaccessible everything is. Ramps too steep, no space to put a wheelchair in-between parking spots (hence the placard). Things you don’t even think about. In the hospital I was obviously not walking around yet. From my wheelchair, I would pull my weight with the hand rail in the bathroom over to the toilet and then back on my wheelchair after OT came and taught me a much easier and more independent way of getting there. This bathroom had all the rails, side rails, front rails, diagonal rails, rails that could fit a tiny kid train, rails that held up a rickety shower bench I did not trust with my butt. However, when one rolls over to the sink, washes their hands, and looks to dry them…Diabolical, the paper towel dispenser is on the wall behind you, and your wheelchair. So I proceeded to roll back very grumpily and dry my hands. And I’m less than a month out from wheelchair bound, privileged to have the mobility back that I do. Shoutout to my beautiful fiancé for collecting some towels and making sure they stayed by the sink for easy drying. It was a pain to dry the wheel handles so much. And her amazing family for showing up, helping us organize and clean after the chaos that was our hospital stay. It has given us the restart we’ve been working for.
I am now using a walker (very decked out with washi tape stripes and pearl beads might I add.) I’m a lot more mobile than I was even a few days ago. Also recently started a steroid pack for the inflammation in my neck hopefully. I think I pinpointed a wound for myself during this experience. or many several, emotionally speaking that is. As I told a close friend, it’s really painful to watch the people you love struggle through things you used to do for them with no problem. It sucks. And when I dig a bit deeper there, the belief that I MUST be needed and ‘fix the things’ and physically do the tasks for others, is what has gotten me here. When I don’t delegate, when I micromanage and live in the details so hard I can’t trust the people in my life to care, it ruins it for me and for them. I hear somewhere, community isn’t made by helping people, it’s made by accepting help, accepting your vulnerability as just another human in a body that is ultimately, terribly, and wonderfully limited.