- I’ve had lupus for years, but when I was 27 years old, it caused my brain to swell.
- Because of the inflammation, I could not walk, then I slowly started to forget things about myself.
- Years after recovering, I’m still figuring out who I am.
In theory, the dress was perfect. It was red, my favorite color, and A-line, the style that looks best on me. As upbeat department-store music played over the speaker system, I touched the fabric and waited for that spark of happiness in my brain to tell me, yes, I liked it. No spark came. Anxiety shot through my stomach.
It was one of the many times since recovering from severe brain inflammation that I wondered if I was the same person I’d been before I’d gotten sick.
Lupus triggered my brain to swell
When I was 27 years old, I stood up one day and forgot how to walk. Lupus, the chronic illness I’d lived with for years, had developed into life-threatening brain inflammation. My mother-in-law rushed me to my doctor’s office, but the steroid shots and infusions my doctor prescribed failed to stop my disease.
Over the next month, I forgot my favorite color and which foods I liked. My personality changed from level-headed and cheerful to paranoid and depressed. Where I had once been organized, I forgot to reply to emails and stopped keeping track of appointments. When my two rescue dogs hopped on my bed to snuggle with me, I rolled away in terror. I ignored the cute dresses and shoes in my closet in favor of yoga pants and old T-shirts with holes in them. I cursed in front of my doctors and lost my desire to talk to my friends.
The most terrifying part of being sick with brain inflammation wasn’t losing control of my legs. It wasn’t the night I laid in bed and hallucinated fireworks onto the ceiling. It was the growing rift between the kind, reliable, intelligent person I knew myself to be and the emotional, confused person who laid in bed all day, too sick to even walk to the kitchen for a glass of water. It was seeing the woman I’d worked so hard to become drift further and further away.
I lost my memory
As my long-term memory faded by the day, I lay in bed with my computer balanced on pillows on my stomach and filled a Google doc with everything I remembered about my life. Paragraphs about early memories of camping with my family blurred into beginning orchestra class in fifth grade and the book I’d sneaked under my robes to read during my high-school-graduation ceremony.
Tears streamed down my face as my fingers clicked across the keys. I fought to recapture the woman I had been before brain inflammation ripped her away from me. Each night I told myself that if I survived, I would study this Google doc like a handbook. “I will relearn how to be you,” I promised myself.
After I had been bedridden for several months, the handfuls of steroids and immunosuppressants I swallowed each day began to fight off the inflammation in my brain. The hallucinations disappeared. My extreme moods simmered down. I started to ask my caretakers for my favorite shirt. I finally remembered I didn’t like yogurt. Some of my old mannerisms and quirks, like my love of semicolons and penchant for dark humor, again floated to the surface of my mind.
My recovery was never a straight line. It would be three months before I could read again, five months before I walked to my living room on my own, and two years before I fully trusted myself to make important decisions. Even as I started thinking and acting more like my old self, I questioned each thought and interaction. Would the old me have liked these shoes? Would the old me have handled this interaction at work the same way? I felt like an imposter in my own life.
It hit me many years after my recovery that not liking the same exact things or making the same exact choices I did over five years ago couldn’t be more normal. That change is part of life, and the old me would have supported my growth. The woman who I was before brain inflammation? She would have wanted me to be happy and free.