Reminders of “Not Normal”

The past week has been full of reminders. Reminders that I’m not “normal” yet, reminders that I still have to take it easy, reminders that even if I feel ok my brain isn’t necessarily on the same track. After feeling more like the old me for a few weeks I had almost succeeded in believing that maybe it was all in my head! Forget about the brain lesions and the blood results, maybe they can be chocked up to human heterogeneity? But no.

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The past week has been full of reminders. Reminders that I’m not “normal” yet, reminders that I still have to take it easy, reminders that even if I feel ok my brain isn’t necessarily on the same track. After feeling more like the old me for a few weeks I had almost succeeded in believing that maybe it was all in my head! Forget about the brain lesions and the blood results, maybe they can be chocked up to human heterogeneity? But no. What I had forgotten was that the reason I was feeling better was because I had taken great steps towards maintaining my mental health. I worked hard at not getting stressed, at taking what life threw at me and taking in in stride. It’s amazing how your perspective changes after almost dying. Petty things like annoying people and deadlines mean a lot less when considering that at least you’re around to experience them.

So it took me by surprise when after experiencing a bout of manic anxiety, I was sitting at lunch when my hands decided that holding a sandwich was way too much to ask of them. Followed by the inability to pick up and put back together the rather messy aftermath of the deconstructed lunch. Eventually I was able to triangulate my hands enough to finish my meal, of course I looked like a toddler with sauce all over my top.

The day was scheduled as a mini shopping trip, and no silly shaking hands were going to mess up my plans. After walking up half a flight of stairs I realized my great error. My legs were weak, heart racing, the room was spinning and I couldn’t get my breath. And I was stuck. Between two floors on the stairs. That was a fun walk back down. We headed out hoping that I could make it far enough to the coffee shop down the block to sit for a bit. I barely made it. I barely made it one block. I had to hold onto my friend while holding myself up along the shop walls as the marionette that used to be my body was controlled by something other than myself. Sitting didn’t help much, but I made it to the car. While riding back home the world started closing in and the taste and smell of metal overwhelmed me. Luckily I know that feeling and held off the impending syncope.

Brain fog prevailed for the next few days and I think I slept about 14hrs straight. The weekend was filled with a lot of sleep and the inability to leave the house. Monday dictated a full day of work and while I did it I don’t remember a whole lot of it. I had forgotten how much I pay for overdoing it. People commented on how red my face was and that I wasn’t responding when they spoke to me.

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Kira was a little worried

Yesterday (almost a week after the initial incident) I was exhausted after doing too much. I still decided to try and finish the experiment I had spent all day working on. As I sat in front of the microscope I realized I had no idea what to do. How many times have I taken images on the microscope? And for the life of me I couldn’t remember what buttons to push or levers to pull. Finally giving up I went home.

Sheepishly going to the post-doc in the lab the next day I admitted to not doing the experiment right. I decided to try one last time to take some images and managed to turn the scope on! Woohoo!

Did you know that to take an image of cells with fluorescence you have to actually add some sort of stain to the cells? Or how about that to take an image you have to actually turn the camera on? When I asked the post-doc how to turn the camera on she gave me the funniest look and said “you press the button.” I had pressed the button, just not long enough apparently. It never occurred to me to try holding the button. She left and I continued muddling through. Also, did you know that you have to open the shutter to see anything? After getting the post-doc again because I couldn’t see anything she informs me that I need to open the shutter. “How?” I ask. Again she had the strangest expression on her face, Looking back I know she knew I had closed the shutter to switch to camera just two seconds before. Little did she understand that I had no recollection of doing so and could not for the life of me remember how to do anything with the shutter, let alone what the shutter actually is. Finally I took a few images. Woo.

I looked in the mirror after getting home and was a little shocked. My face was a red, greasy mask, my eyes were dull, my hair was lank. All the health I had gained in the past few months seemed depleted. And I remembered. I remembered that to function I have to plan everything and stick to it. I remembered that brain fog is a real thing, that sometimes I will still lose time. I remembered the toll of letting life get the better of me, and that sometimes I have to just let stuff slide off my back. I remembered that in fact, I’m not normal. That my body is still healing and may never be what it was. And I remembered that I still have to get better.

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