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Last week my neurologist called: “How would you feel about coming into the Epilepsy Monitoring Unit for an extended stay.”“Hmm, an extended stay”, I thought. “Exactly how long is that?” I asked.
I’ll be honest with you. It didn’t really matter. I had already made my mind up. “Extended stay” sounded like a nice little vacation…like checking into the Ritz. With a business, a three-year old, and all the other demands of life, I’ve been known to think of odd situations as nice little getaways; like when I get excited over jury duty.
On Tuesday I checked into the hospital. I packed all kinds of items for my getaway. “Oh, maybe I’ll do a little painting,” I thought. I packed my acrylics and a few brushes. In my bag there was also my calligraphy set, a stack of books I hadn’t gotten to yet, and a couple of things too embarrassing to admit.
Let’s just say my extended stay hasn’t been the “vacation” I envisioned. It wasn’t a slow realization; it hit me all at once.
I took one look at my roommate. Her head was wrapped and taped under her chin. Soon I was lying in the bed while Sue, my nurse, glued 32 electrodes into my hair and wrapped me up like a mummy. The wires went into something that looks like a camera case and then into a something that said “head box” on the side. Five more leads were placed on my chest going into my heart monitor. It was the size of an old car phone. You know, the kind in the big black faux leather bag.
Sue pointed out the cameras in the corner of the room where I was being watched for seizures. I had seen these mysterious “watchers” as I had come into the unit. It was a room with a dozen screens, like something out of The Matrix. Sue went over the rules: stay in the bed, call when you need to use the restroom, and let me know when you need to get bathed.
Instantly this took me back to one of my most memorable and painful moments during cancer. It happened when I was at my sickest, literally unable to move. After two blood clots, I lied in the Intensive Care Unit, terrified. A nurse came in and striped the covers off my bed. She pulled off my hospital gown. I was completely naked. Shivering. Exposed. Humiliated. She wrung out a soapy washcloth and began to bathe me. I had never felt so vulnerable, so exposed, so undignified. It was the first time I felt a complete loss of independence.
It was terrifying and humiliating. I’d always taken comfort in knowing I could do anything I wanted. I didn’t have to depend on anyone. That’s what my mother had always taught me. As a single mom, working three jobs to support us, independence was a primary value growing up in our house. To be independent was to be in control of one’s own destiny.
Having a chronic illness, whether it is cancer, epilepsy, or something else leads to a loss of independence. My recent seizures have reminded me how painful that can be. In many cases this dependence means being bed-bound, not being able to communicate, or always being accompanied by someone. In my case, it’s not so bad, but it still hurts. My family has become terrified to let me go anywhere alone since my seizures have started. They wonder where I am, even in the house. They like to know when I’m taking a bath or sitting on the patio outside.
Being unable to get away on my own terms is extremely frustrating. There are days I need to be alone–to sit in my own silence. Just the other day I decided to sit on the bathroom floor as I painted my nails. The door was slightly open and my mom peeked in with a terrified look on her face. “Oh, my God,” she said. “I saw your legs on the floor and I thought you were having a seizure.” “Nope, just painting my nails,” I said.
I’m not good at asking for help. I never have been. I like to do things myself. Today in the hospital when my breakfast arrived there was no sugar for my coffee. I know it’s a tiny annoyance, but it’s about being able to do it on my own. I’ve needed help bathing, dressing, and other activities that we take for granted. It makes me angry and I feel guilty needing help from my family. Intellectually, I know they love me and don’t mind, but my mind tells me I’m a burden. And if there is one thing I hate it’s being a burden.
Cancer taught me and seizures have reminded me that we were never actually independent in the first place. We aren’t really in control. It’s only an illusion. We are dependent on our bodies and, as much as we like to think we are in control of them, we aren’t. Eventually our bodies fail us. Then we are dependent on the medical system.
To be honest with you, I’m frightened by my new vulnerability. I want to go back to a time when I believed I was in control. Before cancer, before seizures. There is something appealing about the illusion that we have true independence. We have been told that if we want something, just go for it. If we try hard enough it can happen. Those clichés aren’t true when it comes to health. We can’t try our way out of cancer or seizures or whatever disease we have.
Today I’m learning to be gentle with myself and to not push against reality. I will not convince myself that I can change the truth. I’ve decided to accept what my life is right now. That doesn’t mean I have to walk around weepy all the time, but it does mean there will be days that I’ll be frustrated by my limits and by what I’ve lost.
I’ll continue to be a little pissed that I don’t have the freedom to drive myself to the store to get a Coke or go for a hike alone, but I’ll work on accepting it. I will not judge myself for being sad about these things when there are so many things to be grateful for and there are people who endure much worse. I’ll just try to be patient with myself and love myself. I’ll seek comfort in accepting help from those who love me. I’ll embrace that we are all dependent on each other and that by understanding the nature of independence I’ve found my true freedom.