Bill's Story

I never thought I would be writing a story like this. I guess I never thought my story was one to be written. My husband is 43 and I am 37. We have been married now for 18 years. We have 3 wonderful teenage boys. We live with my mother, my youngest brother and his daughter. Things have always been hard on us. My husband when he was a child, got burned by electrical power lines. He was climbing a tree and lost footing and instead of grabbing a another tree limb, it was the wires. There was 7,300 volts in those lines. He was in the hospital for 3 months. He broke his jaw in a couple of places, a place on his left arm, next to the shoulder is where the electricity came out of him. His right hand has skin graphs on this from his left upper leg. At the time, 1970’s, they thought he would not live past 18 or ever be able to have children. We have proved both of those theory’s wrong but it has been hard. When I first meet him, he was an alcoholic and took care of his mom. He and his mom were very close. His father he had lost when he was 19 from cancer. His mother had one arm but still took care of everyone and everything. She died of a massive heart attack in his arms in 1986. I had meet him 6 months before. When I first saw him, it was love at first sight. A friend of mine was going out with his younger brother. After his mom died, I moved in with him. 5 months later, we were married. We were married 3 months when I got pregnant with our first son. When we got married, we lived in his mother’s house which had no water, no electricity and now heat unless we had the fireplace going. It was a rough start. Something I was not use to but I loved him so I stayed. He worked odd jobs here and there. But nothing lasted long. Right after we had our 2nd son, he started having back problems. We went to various doctors but no one really knew what was going on. So he still worked here and there. But as time went on, his back got worse. By the time I was pregnant with our last son, I was getting ready to leave because I could not handle the drinking all the time, not knowing where he was for days at a time and I did not want to raise these boys like that. But just before I did leave, he went into treatment for the drinking. He was in 21 days. In that 21 days, I lost weight and the doctor was worried but I was losing weight with the pregnancy. It was something I had no idea what to do. My mother had left for another state so I felt alone. It was hard for him because drinking is a tradition I guess you could say in his family. His father got him drinking at a young age and he just always did it. Anyway, we decided to go for disability. We started seeing more doctors. We saw one doctor that told us that his spine was more or less just wore out. His spine looked like a 80 year old person. So we applied for disability. It took a year. It was a long year. We stayed in low-income housing. We had to get a lawyer and it finally went through after a year. So we thought finally things would get better. We had a few good years. After about 2 years, we decided we needed a bigger place. The kids were getting bigger. So we talk to my mother and decided to go in together on a house. It was big enough for all of us. She had the upstairs, we had the downstairs. We lived there for 6 or so years. About 2 years after we moved in there, my husband thought he would try to work again. He did janitorial in one of the hospitals in town for about 9 months. He was not happy with the hours so he looked for another job. He found one at a diesel machine shop. I really thought life was finally going to get normal. It was hard work but he lasted 4 years there. In the mean time, we moved from the big city to a small town just outside. Then one day, we had a old car that was heavy. The car had quite working on him so he had to push it out of the way. That did his back even more problems. He started to have more pain, more things he could not do. I guess at this point, I realized normal life was over. So we saw another doctor. This one was a Rheumatologist. He told Bill, my husband, that he Fibromylagia. Which is arthritis in the lower back muscles. So he tried him on medications for it. I think in the 7 years he saw him, we went through so many different medications, we lost track of them. Because of him being an alcoholic, he had a tolerance for medication. So after while, they just would not work anymore and we would have to try something else. After he realized he could not work anymore, we tried to get back on Social Security. That took a year again. I tried working but I started coming up with my own medical problems. I think between dealing with a job, dealing with him not being the man I wanted or expected, it got to me mentally. My mother supported us for that year. In that year, there were days he could not get out of bed. He would use the wall next to the bed to pull himself up or I would help. We would heat up wet towels to put on his back. I would make sure he was comfortable or needed anything else. But we did it. So after this doctor realized he could not do anymore for him, Bill stopped going to him. Bill would have periods of depression, being isolated from everyone, and so he started seeing a counselor. I think that was real hard on me because I could not make him happy or take his pain away. That helped some but he was still in pain. So off again to another doctor. After this point, we lost count, names of doctors we did see and medications they had him on. Some where in the past 3 years, we saw a Neurological Surgeon. He did lower back surgery on him and found scar tissue in there but was not sure how it got there. He was where he had no feeling in his left leg so he thought the nerve was being pinched. I remember when he went in. I sat in the waiting room, scared the doctor was going to come out and say they found something else. In his family, every male died from cancer so that thought was always in the back of my head. But after a few days, it was right back to the way it was before. The surgeon says the next thing to do is to fuse the spine. About a year or so ago, we found a family doctor that would listen to us. He is a great doctor but he is just a family doctor. I do wish he was more because he is the only one so far that actually listens to us. This has been a very long, hard road for us all to travel. There are days when I wonder what would have happened if I meet someone else, or gone a different way. There are days I wish he was in better health. I know he does too. He can not go out and play with his sons, do what he see other men his own age do. Then a few months back, we found out he has lesions on his brain. He has always had headaches and migraines but no one ever wanted to find out why until now. Our family doctor thinks he has MS but not sure, so now we are going to see a Neurologist but that is still 3 months ahead. Right now, sometimes Bill forgets things past 2 hours ago. Sometimes he forgets taking his medications, forgets if he ate that day, forgets asking questions and if we answered it. I don’t want this to sound like he forgetting everything. Some things he does. He is still helping with housework, when he can, going out sometimes with us. He does what he can. His boys, sometimes have a hard time dealing with dad and his problems. I don’t really know if they understand what is going on with him. But at times, no one does. Not even him. So how do you explain what is going on if you don’t know yourself. We just go day by day. We all keep an eye out for him and help when we need to. This is not a simple life or an easy one but we deal with it. But I do have my days where I don’t. I don’t get out, I don’t have any close friends. My outside life is the computer. I found Well Spouse from another website. My husband was looking up the Phoenix Foundation and we saw WS. I have joined WS but it is hard to find other people that are dealing with someone having this much electrical burns and still alive to tell about it. In the last few years, I myself, have come up with a few problems. I have depression, Fibromyaliga, arthritis and at the moment, taking 6 medications of my own just to get to deal with things. We have done some research with burn units but no one says they can help because the burns are over 25 years old. There is no way to link his problems with him getting burned as a child. His only brother lives not too far away and tries to keep in touch with him. I think sometimes his brother does not want to deal with his problems because he does not know how. I am not real sure myself how to deal with it and how I have for so long. All I can do now is try. I love him with all my heart. I do believe we were made for each other. I do wish at times life was easier but then life might be boring too. So we go on and try to deal with each new problem the best we can and give each other support along the way. And hopefully somewhere, we will actually get a doctor that knows what is going on. Through all of this, I have always tried to put my feelings second. I am not use to asking what I want but what he needs or the boys need to try to help. I try to make up with the boys for him by doing stuff with them or taking them out somewhere so we all can forget it for awhile. I never finished school. But I never had time to get my GED. I am always taking care of everyone else. Yes, I get down and I cry when I go to bed but I just don’t let others see it. I try to be strong for him and the boys because I feel I have too. I would love to have friends. Having friends is important to me. But I think dealing with as much as I do now, I don’t know if I could deal with much more. Or I feel like sometimes. Like I just can not go on. I can not handle anymore problems. But I do. I have to know I am trying everything I can to help him and try to understand him and what he is going through. I just always put me second.