Living together with RSD
(continued)

Following its implantation, my husband suffered seizures for about 6 months. The seizures seemed to be related to the leads going into his brain. When he seized, we could actually stop the seizures by maneuvering the leads in the back of the neck. He would often pass out right afterward. Many times, he would have episodes of amnesia following the seizures and black outs. During this amnesia, he would not know who I was or where he was. It would last for anywhere from a half-hour to a few hours. He would often come in and out of consciousness during this. Of course, it was very scary. Then, miraculously all of the seizing stopped in Dec. of 99. The doctors never explained why any of it happened or why it stopped. He rarely has a black out now. He hasn't seized since then.

For the past several years his doctors have been convinced that he is going to die soon. They've been giving him predictions like "6 months left to live" for the last several years. I used to constantly wonder how long he would live. I married him in fear of becoming a widow within the first year. JD feels that a life lived in continual expectation of death is no life at all. I have learned how true that is, and refuse to focus on the opinions of these doctors.

During the last surgery to implant the current SCS, JD had a near death experience. He flat lined for 3 minutes. He came home from that surgery with a new motto: "Live Life to Its Fullest." It was after developing that attitude that he stopped dating me and asked me to marry him. We have been "living life" together ever since.

© Patsy Adams
June 2001