Posted May 15, 2008
Larry and Linda Drain are co-founders of Hopeworks, the Blount County chapter of the Depression and Bipolar Support Alliance in Maryville, Tennessee. This is their story.
July 11, 2007. That’s the day we found out the name of the elephant in our room. My wife, Linda, was bipolar.
It’s not that we didn’t know about coping with bad things because we did. Linda had been born with epilepsy. Seven years ago a good day was 10-15 grand mal seizures and she didn’t have too many good days. She tried medicine after medicine to little effect. Sometimes it was not clear if the seizures were worse than the side effects of the medicines that she took. Hope was always fragile, always resting in the next new thing that was soon replaced by another next new thing. Life for Linda was like living in a cloud. There was one big difference though. Clouds go away.
Finally she got hurt really bad. She fell down a flight of stairs during a seizure, hit her face on the banister and literally broke her face. She looked like I had taken a baseball bat and beaten her half to death. She used to tell me that she couldn’t go to the store because people would stare at her. I’d tell her no—they are staring at me trying to figure out what kind of monster I am to do that to you.
The neurologist finally figured out what we already knew. No medication was going to help. He told us that brain surgery was the only option. She had her amygdala and hippocampus removed and the seizures went away—for a short time.
When they did come back they came back with a vengeance. Four years later she was in Vanderbilt Hospital having close to 100 seizures a day. Now finally the seizures seem under control. They are still there, but no longer does Linda tell people what kind of day she had by giving them the seizure count.
The surgery though took Linda to a place she had never been before. Disabilities that had never existed prior to the surgery took control of her life. Her memory was shot and because of that she begin to have problems learning. She couldn’t concentrate. She loved to read all her life, but sometimes found that now she had no comprehension. She became noise sensitive. Noise at times—any noise—was at times physically painful. She could get lost going from one room to the other. And that was only the tip of the iceberg. One doctor told her she now had a new label—traumatic brain injury.
But there was something else wrong and we knew it. Linda was a good and a kind person, but at times she was seemingly drowned in moods that overtook her and hijacked her to a place that sometimes we wondered if she was coming back from. We explained it in terms of seizures, of surgery and when all else failed medicine side effects. There were so many explanations that we never bothered to look right in front of us. There were a lot of red flags, but we were color- blind. Even when there was nothing “physically wrong” something was always in the way. Hope seemed a cruel delusion, always being dashed for reasons that we never clearly understood, but seemingly always present. Life sometimes seemed like little more than waiting for the next bad thing to happen. Even though we couldn’t see the elephant we knew he was there. All we had to do was look at the path of destruction he left.
Linda had gotten a vagus nerve stimulator implanted in her chest 3 years ago to help control seizures. It never really seemed to work and was giving her lots of problems. She had talked to doctors about getting it out, but felt like they never really listened to her. It was a point of growing stress.
On the night of July 10 I got several hysterical phone calls from her while I was at work. She told me that she was fed up with them lying to her and if they wouldn’t take it out she would. I didn’t take here serious. Who cuts their own chest open?
When I got home she was asleep and it was the next morning before I found out what had happened. She had cut a large gash in her chest and then took a hammer and beat herself in the chest trying to break the stimulator. Her chest was black and blue and badly swollen. She started up again and I told her if she didn’t stop I was calling the police. She took off out the door.
I helped the police search for over 2 hours with no sign. I thought she was dead. Words can never explain what went through my mind during those forever two hours. We went back to search the house one more time. We found her hiding in a closet. She scared the police officer so bad he almost pulled out his gun and shot her.
That was the day we named our elephant. Linda was bipolar. It seems so obvious now. Linda’s father it appears now had been bipolar. The brain surgery removed parts of her brain associated with management and regulation of moods. She believes now the bipolar disorder had always been there, just hidden in a thousand other battles. My kids and I had learned not just to walk on glass, but that there was glass everywhere. We still have to wear shoes, but over the last months the floor has finally been swept.
There is something about being able to call things by their right name that gives you freedom. What you can name you can see. What you can see you can live with. What you can live with you can triumph over. With medication, therapy, and lifestyle management we have finally found an answer to a question long unanswered. Hope need not be wishful thinking. It can be real.
We decided to tell our story. The more you share your hope with others the more that comes back to you. We started a new chapter of the DBSA in our county. The day before our first meeting the local paper ran our story, complete with pictures and all details. I’ll never forget what one lady said in the first meeting. Crying she faced the group, “Tonight is the first time I have ever felt safe talking about what my life is like.” I knew then hope does work.