She made a great point- the one people with inconspicuous Epilepsy often do. It was a picture I posted on my Instagram of me in San Francisco outside the City of Lights bookstore (amazing, by the way, highly recommend), all dressed up. The trip with my husband was two-fold; I went to UCSF for more Epilepsy testing and then the rest of the weekend saved for a fun-filled early birthday. As you can see, I’m smiling, relaxed and happy… I was, truly. Under the picture, I’d summarized my night before and a fellow Epilepsy warrior @mara.laugh commented “Example of an invisible condition!” and I think about those words all the time. All the time when I’m picking up my child from school waving to friends, laughing during a phone call absent of health talk, or emphasizing with smiley emojis while texting. All the time. Whether in everyday visual, verbal or written contact, it is invisible. Let’s clarify, I don’t want my Epilepsy ever-present attached like a second head to my shoulders but there are days when I don’t want people to forget. NOT for pity’s sake-never the goal- but for the importance of awareness. For all those people who are “invisible” and want to stay that way while wishing others could see their truth.
And so her point stuck with me. Amazing how a long coat, boots, make-up and some big earrings can camouflage exhaustion and experiences of the night before. How a smile can wipe away 12:30 AM to 4 AM hours full of seizures. How an Instagram filter opens heavy-lidded eyes and overshadows trials… I set out that day determined to enjoy the time we had alone, to explore, be childless, be carefree, and we did. (Despite the fact I had 10 more seizures as we walked in and out of beautiful churches, hidden alleys and down towards one of the many piers.)
Ironically, we avoided all the touristy places purposely to be invisible, blend in with the usual San Franners. Walking with my arm curved around his bicep, I could bury my face into his sweater each time I seized. He’d stop as though admiring the scenery and then we’d continue on. Normal.
Although he’s used to my stubborn disposition and knew I’d say no, he repeatedly asked if we should head back to the hotel. I refused, walked into the nearest oyster bar and we enjoyed the rest of our day. As we walked back to our hotel later, it began to pour and when we stripped off our wet clothes, I was covered in hives (a result of my meds when I get cold) and incurably, painfully itchy, but we laughed. We were too happy and I was giggly… beyond our invisible.
I reread my words now and wonder where I thought I’d end up going with this piece when I started. Half the time I don’t think I make any sense at all to anyone but myself. I can’t help shake my head and smile- What a contradiction an invisible illness is, huh?
All the time…