I have a confession to make. Even after 21 years of marriage, I can’t fall asleep if my husband is already in bed.
Ben suffered his first seizure in his sleep two months before we were married; his second nocturnal seizure was two weeks before our wedding. Seizures are loud and they can be violent. I happened to be in the hotel room to watch this particular seizure, and to watch the 8 paramedics carry him off strapped to a medical pallet (they had to call for back-up because he was resisting so strongly in his half-conscious state). Despite my love and trust in God, from that point on I have never been able to fully relax when sleeping next to my husband.
Initially, Ben was diagnosed with nocturnal epilepsy. That meant that his seizures only occurred while he was sleeping. Like any newlywed, sharing a bed required a learning curve I hadn’t anticipated. But because of his diagnosis, I found that staying in bed with Ben kept me on edge and never allowed me to fully fall asleep. Whenever Ben moved, jerked a limb, or made any kind of noise, I immediately woke gripped with fear and panic — waking him, too, in the process.
Thus began a habit that lasted a good portion of my early married life. I would go to sleep with Ben, then eventually move to the couch where I would spend the rest of the night in blissful, ignorant sleep. But I always kept the bedroom door open so that I could hear, just in case Ben had a seizure, which he did several times each year for the first few years of our marriage.
Before he acquired his brain injury due to status epilepticus (Ben experienced nine seizures in a row which caused his heart to stop and required that he be placed on a respirator for several days), Ben was a successful trombone player who played with many of the major orchestras in the Baltimore and Washington, DC area. One time we were on an airplane flying to California for Ben to take an orchestra audition. The plane was about to take off, and in my half-asleep state I noticed something unusual in my peripheral vision. Ben’s right hand was stuck out straight and was jerking in an unnatural manner. His eyes were glassy and his breathing seemed labored and unusual. Fearing that he was about to have a seizure, I immediately yelled, “BEN!” The passengers around us quickly quieted down and I felt as though all eyes were watching us. Ben turned, oblivious to the fear he had caused me (and the other passengers). “Are you OK??” I asked in a somewhat frantic voice. “I was practicing,” he calmly replied, and went back to mentally rehearsing the music in his mind. That moment, not too distant from our wedding night, clearly demonstrated the physical fear I felt and still experience when I believe my husband is going to have a seizure.
Since his status episode, Ben has had seizures both at night and during the day. He takes so much anti-seizure medication that it’s fairly unlikely he’ll experience the same kind of seizures that used to cause us both so much anguish and pain. Yet still I fear. I’ve found that the best coping mechanism I have is to fall asleep before Ben comes to bed. Often this means that we go to bed together, talk a bit, and then Ben leaves to read or watch TV downstairs while I fall asleep. Then he can come back to bed without disturbing me or my sleep.
Hidden disabilities take their toll in many different ways. As families, we cope, compensate, and make all kinds of strange accommodations to keep our lives as normal as possible. In my case, one of the best coping mechanisms I have is to go to sleep before my husband goes to bed.
What accommodations does your family make?