“What do you mean ‘You can’t see.’!?,” I asked. We were speeding north through Maryland on Interstate 81 heading to NJ for a family weekend. Mandy was a little quiet and, when I glanced over, I saw real fear on her face. In a slightly panicked voice, she said that for the past 15 minutes she had strange wavy lines coming in and out of her field of vision. They had started appearing towards the peripheral areas. Now those lines were obstructing everything and, in places, shutting out vision altogether. With a mix of terror and confusion, she looked at me and said that there was a big hole in my head. I was stunned into silence.
Mandy’s son and daughter, my stepkids, were in the rear seat. They had, only a year before, witnessed their mother’s rapid slide into the world of Multiple Sclerosis. I realized, unbelieving, that Mandy was trying to be somewhat calm in the face of this new phenomenon. She didn’t want to panic the kids. I understood. Continuing to drive, I asked her how she otherwise felt. "Fine," she said, although she admitted to feeling a bit nauseous given what she was seeing. It didn’t help to close her eyes. There was nothing wrong with her eyes. It was her brain that was throwing this new monster at her and the brain doesn’t care whether or not your eyes are closed.
Sitting bolt upright in bed, Mandy let out a scream. Her arms flailing, gripping the covers, she was trying to right herself. The room was spinning. Standing up was out of the question. This time, alone with me, no kids in sight, Mandy showed true fear. She was confused, sick, and on the verge of real panic. In our home, from that moment on, Vertigo was no longer just the title of an Alfred Hitchcock movie.
In both instances, my first reaction was fear. Then panic starts-- first low in the belly, then working its way up to the heart and throat. If you let it, panic will stop you cold.
Barreling down I-81, I took Mandy’s hand and told her that I wanted to give it a few minutes to see if her vision got worse, improved, or stabilized in some in-between state. In bed, I spoke calmly despite her understandably anxious and confused state. I took her arm as she tried, unsuccessfully, to climb out of bed. Together, we chose to wait out this new monster despite the fact that in both instances I wanted nothing more than to head immediately to the Emergency room of our local hospital. Both times we chose, instead, to fight back panic and, instead, to put ourselves in the moment. Understanding that it was important to communicate with one another, Mandy kept up a running commentary of what she was feeling. I, on the other hand, took that information and continually measured it against some internal yardstick on which ‘All is Normal’ is etched on one end and ‘Get to Hospital’ on the other.
You are a caregiver. Someone has chosen you to be there for them when MS places them in situations during which they can’t be there for themselves. Learning not to panic in the face of the unknown takes time and practice, but it is a skill worth mastering-- for both your sakes.
Published On: June 30, 2008