Here's a MySpace style photo of the two of us, with Chion on the left, and me on the right. I swear I'm just tired, not drunk in this photo.
Last Thursday, I met an old friend in Hartford for dinner, and then went back to her new place to listen to music, hang out with her cat Momo, and have a seizure on her couch.
Okay, that last bit wasn't actually in the schedule of planned events. The truth is, though, that with multiple sclerosis, I don't really get to write my own schedule, and while it's been over two years since my last seizure, they're always possible.
With MS, all things are possible, my neurologist likes to tell me. I think it's funny, too, but it's also a good reminder: nothing about this disease is actually static.
Chion is a friend from what I always think of as my first life: I met her when I was growing up in Connecticut, before I left for the military. She knew me best when I was very young, very healthy, and for a brief time, we were in love. She knew my body when it was close to its peak of health -- before my disease began making serious inroads.
Between all the travel I've done for the military and afterward, she's missed seeing the largest chunks of my illness, which comes and goes. I live in Baltimore, so I only visit Connecticut when I'm healthy; I can't make the five-hour drive when I'm not feeling well.
She might have seen me once with my cane. I can't really remember, but only once, if then, and even so, if I had made it to Connecticut, I was doing really well on my cane. The point being, she knows I have MS, but she's never actually seen my disease, and there are miles between those two things.
Late last week, I was leaning on Chi's railing in Hartford, and we were talking. She was trying to bring up some episodes of a YouTube show created by Caitlin Doughty, who had been on the radio show Chi works on (did I mention Chion works in public radio? GEEK GIRL SWAGGER).
I suddenly felt cold and shaky, and noticed that all my sensory information was beginning to feel as though it was coming to me through a filter -- like an Instagram photo, slightly askew and faded. This is my aura, the roughly one-or-two-minute warning I get before I have a seizure. I’m grateful to get such a dramatic, if somewhat nauseating warning of what’s ahead.
I made my way to the couch, and sat down. "I almost have this up," she said. "You want to see?"
"Yes," I said, calmly. "First, though, I'm going to have small seizure. It's fine, and I'll be fine, and it'll be over in about a minute, OK?"
"OK," she said. There was a pause, and I took the time to make sure the area around me was clear. "What do I do? Do you need anything?"
"I think I have everything I need," I told her. "I'm just going to go away for a minute or two, and then I'll be back." I rested my head against her couch, closed my eyes, and waited for it to come.
I didn't fully lose consciousness, but I can't say I was in the moment, either. Seizures are different for everyone, but for me they are degrees of the same thing: flashes of imagery, the sense that I am separated from reality, occasional glimpses of my surroundings. It's a surreal, quiet chaos: the first time I heard the antiquated term "brain-storm" used in place of "seizure" it made perfect sense to me.
When I opened my eyes again, Chion was in the kitchen pouring water into glasses.
"Hey," I said.
"Hey yourself," she said, crossing the room. She put a glass in my hand and we sat quietly for a moment while I reoriented myself. I knew where I was and what had happened, but what I didn't know was what happened next. I took my time, finding my way. Bracing, procrastinating, breathing.
To the non-disabled person, I wonder if this might seem silly or strange. Why should a seizure which lasted less than five minutes make a difference in such an old friendship? It shouldn’t, except that I have long-standing relationships that never recovered from my diagnosis and friendships which have never been the same after reactions to my use of various aids, medications or therapies.
One friend told me she would never be able to visit me in a hospital. Another told me to warn him if I was in a wheelchair before we meet up for drinks any time in the future, because he "wasn't sure he could deal with that." I get that it's an adjustment, but … honestly?
Time passed, and I let it pass. Chion let me be for a moment, and I drank water, and checked in with myself. No other major MS symptoms, no major disorientation, typical post-seizure drone. All systems go. I asked her how long I was gone; when she told me I was away for about a minute-and-a-half, I was shocked. I'm always shocked. "Time always feels so… relative… in a seizure," I told her, fuzzily.
"What is it like when that happens?" she asked, and just that fast, things started to become normal again. I was still muddled, but me, and she was Chion, rising to meet me and this new situation in her natural state, quietly digging to the core of an experience in small, easily answered questions while handing me water.
She asked me one after another, spacing them out so that they didn't rush up over me, listening to my answers. I can't speak to how comprehensive my responses were -- probably not very, really. It had been such a long time since someone non-medical who wasn't my husband had asked me about my disease in a way that was genuinely non-invasive while managing to be neither rude nor condescending.
When I felt like maybe my legs could be trusted again, we got back up off the couch, drank a finger of some good scotch, watched YouTube videos, talked some more, and then joked about how it was probably a really good thing that she had picked me up from the house I was staying at that week, rather than me driving over. She took me back to the house, we hugged forever in the driveway, and a few days later, she flew to Madrid to meet her niece.
Disability is difficult. Not just on my end of things, either: It's hard for the people around me, too. How do you know what to do, or say, or what to avoid? How do you know what comes next? The reality is that what comes next is just whatever comes next. If you do it right, it's what would have come next with or without disability.
I wish I could teach this experience to other people who are not disabled: how to learn without harm, how to sit with this without turning your face, and how to accept without judgment. It’s remarkable to be on the receiving end of this level of kindness, genuine friendship and compassion, disabled or not.