Note 2 ☕️
2.
Normal doesn’t exist.
Lately I’ve been pondering the idea of normalcy. Whenever I think of normalcy, my mind goes to water, specifically the beach. When I was a child, I could play out on the sunny, hot beach or swimming pool for hours. Practicing handstands underwater. Challenging myself to a swim deeper in the pool and perhaps touch the bottom. Water is a soothing healing balm for me. It’s no wonder that when I think of normalcy, I think of swimming outside, free and fabulous.
Felt like a toy was taken away from me when I noticed my skin didn’t agree with the sun anymore. My lips would swell. I developed weird sores and blisters that appeared and disappeared at random. My hair seemed to wilt or shed profusely.
The fatigue was all-encompassing. There wasn’t enough caffeine in the world to wake me up. I pressed on, still wondering if I had a deadly illness.
When I was 23 living and working in DC, a patch of my hair fell out. I thought it was due to the relaxer chemical creamy crack I still endured or stress from changing jobs; so my stylist cut it into a short haircut. I thought it professional and becoming. Later, my hair began to grow in the area it had fallen out.
At that time I was dating a guy who stressed me out considerably. A reservist, who was called up to active duty after 9/11, he returned home to DC and wanted to meet someone cool. However, he did not reintegrate well. He also wouldn’t find a job or anything to do with his time, except play video games. On the other hand, I went back and forth to work daily 8-6pm, and I resented him for not matching my vibe. He resented me too. Ah, the joys of young, fiery, confused pseudo-love. To make matters more interesting, we adopted a cat. More for him than for me. When we broke up, the cat stayed with him, and I did not pursue joint custody.
Those were scary days. I rode past the gaping hole in the Pentagon daily on my way to work. Trying so hard to work well and show up on my job, I developed a strange fatigue which never lifted. I was living my dream in Washington DC, and yet, I couldn’t enjoy myself fully. There were days I couldn’t stand to ride the DC metro because I was fatigued and decided to call a taxi instead.
I spent a lot of my small 36k a year on taxis at the time. Energy was limited. I even missed my good friend’s wedding because I was too exhausted to drive the 3-4 hours to be there.
I am not sure if she forgave me fully, but I slept all weekend, terribly exhausted and wondering when I would return to normal. I never did.
The fatigue was all-encompassing. There wasn’t enough caffeine in the world to wake me up. I pressed on, still wondering if I had a deadly illness. Post 9/11 I think we all were preoccupied with death and safety. I was afraid that something was going to pop off whenever I walked outside, took the bus, rode the train, etc. If I saw someone peculiar on my train car. I would get off at the next stop and take another train, an added expense to satiate my paranoia.
During this time, I reached out to a therapist to help me process the anxiety and fear I held deep inside. I went to one session, and I never went back.
Little did I know, I was under attack.
Lupus attacks the body – organ systems, tissues, joints – unpredictably. One minute you're floating on clouds and the next you're falling in bed exhausted from brushing your teeth and applying lotion. Obviously, this is not the reality I imagined for myself. Yet, infused with Boomer sentiment, I knew how to grin and bear it.
I’m 42 now. Whatever life milestones I did not hit – marriage, children, suburban home, divorce – got lost in a sea of “getting well again”.
I’ll share some of my life milestones later.
It’s difficult to create a normal life for a normal that doesn’t exist. Normal is a figment of a 1950s sitcom. It’s a statistic — such as 2.5 kids. Normal is a fairy tale read by your favorite teacher. Normal is somewhere out there. It’s simply not here.
I did the best I could to do to be everything I could be during that time. I enrolled in a hybrid masters program. I set up an account on eharmony. I celebrated homecoming at my alma mater. I dated. For the most part I arrived home alone with only enough energy to fall into bed.
As I walked down the city streets, my youth carried me. Ah the days of youth and invincibility. So fleeting.
Everyday, I looked into the mirror, sucked up the fatigue, and put on my MAC makeup to brave the gritty world.