In January 2003, at the age of 33, I was hospitalized with a mysterious illness that my doctors believed was encephalitis and meningitis, although this was never confirmed. I awoke from a 21-day partial coma to discover that I had lost a few years of short-term memory. More troubling still, my brain had begun to experience occasional thunder-and-lightning storms, better known as seizures—and I was told I had epilepsy.
Before my diagnosis I was a news anchor and reporter, then a member of a corporate public relations team. I traveled, spent time with close friends, and was an avid skier. I dated some, and in 2002, a friend set me up with Andrew, the man who is now my husband.
After the initial illness, I spent months in rehab and therapy, struggling to relearn the most basic tasks. With the help of a team of physical and occupational therapists, I re-entered my world as best I could, returning to family, friends, work, even skiing. But the memory loss was agonizing. I couldn't remember my father's passing in 2001, my brother's wedding in 2002, and, perhaps worst of all, I couldn't remember meeting, falling in love with, or getting engaged to Andrew.
There was no cure for my condition, and I couldn't do many of the things that once came naturally, like driving. My speech and balance were affected, I had a terrible time remembering names and locations—I still do—and my organizational skills had suffered significantly. I had epilepsy—and now, for all intents and purposes, so did Andrew.
Everything I had to live with—seizures, taking piles of pills, not driving—he had to live with, too. In some ways, coping with epilepsy was more difficult for him than it was for me. I could adjust to having a seizure in the middle of doing errands or out at a restaurant, but he always worried about me.
Initially, we coped with my diagnosis by doing everything together. Andrew came to all my appointments, listened intently to every doctor, asked tons of questions, and helped me decide on my treatment.
But over time, I decided I didn't want my epilepsy to be his focus. I no longer posted my appointments on his calendar. I would give the go-ahead for a new medication without his input. I became the one who did the research, who kept current on new medications and therapies. I hoped this would help him push my illness further down his list of priorities. I thought he might even forget that his wife was sick.
But Andrew didn't forget; he just found new ways to support me. For instance, if I was having a day of seizure clusters, he'd hand me the seizure-stopping rescue medications, help me into bed, and turn the lights out to let me rest. Or he'd casually suggest I not ski a steep slope if he thought I might stress out and possibly set myself up for a seizure. That shift helped me realize that he trusted me to make the right call, and I stopped feeling guilty for not involving him.
Despite the ups and downs of living with a chronic illness, not to mention the stuff that all couples and families deal with—managing our finances and caring for our nine-year-old daughter, Hayden—I think we've settled into a shared acceptance of my condition. I used to dread the fact that I was no longer "normal." I wondered if people would avoid being friends with me because of my illness. I even wondered if Andrew looked at other women and wished his wife were healthy rather than brave. But I've come to realize that I can't blame myself for making Andrew a part of this.
I know that my epilepsy is here to stay, not just for me but for my husband and our daughter, too. We work hard as a family to make it the best life we can live, even if it means sometimes choosing the bunny slope.