Multiple Sclerosis and Mom
I spent almost a year with Mom and Dad after my divorce. JT was still in diapers when we moved in. For a month or so, S was living there too. Mom and Dad had left the farm and were living in Marion. It was a big two story house. Dad offered me a chance to go back to business college or to the beauty acadamy. I chose the business college. But, that meant Mom was raising my son every day while I was in school. And, having a hard time doing it. A toddler is probably the worst age for a sick person to handle. The first chance I had, I took a job and quit school. I was working in an office and I found someone to take care of my son. At home. She was suppose to do what she could to help Mom too. Mom didn't tell me right away, but the young woman I was spending most of my wages on, was only helping till JT was put down for his nap. Then she went to bed too and didn't get up till just before I got home. Which put the responsibility of my child right back on Mom. Every afternoon, when her own energy was at it's lowest.
Not too long after I returned to Marion, a man who had been my friends date when we double dated in my senior year, returned from the Army. His Mother had stayed in touch with me and sent him over to Marion to see me. We dated for 10 months, and when he asked me to marry him, I was thrilled. For several reasons. I'd always liked him, even when he was dating my friend P. I also adored his Mother. He and I had a lot in common and I was so sure the love I felt for him would grow. And, I have to admit, getting us out of Moms way had something to do with it. Mom needed peace and quiet and sure wasn't going to get it with a toddler in the house.
We hadn't been married, and living that hour drive away again, very long when Dad phoned me to say Mom was in a Columbus hospital. They had decided she had a brain tumor and surgery was scheduled just a few days later. This time it was double vision that sent her to the Doctor. She had gotten so much worse, so quickly. She would reach for something and it wouldn't be where she saw it. She couldn't even stand still and straight anymore. A young intern gave her an eye patch and it did eliminate the double vision. She had to change it from eye to eye every hour so neither eye would get weak. Along with the double vision, it should have also helped with the problem of reaching for something. But, it didn't, nor did it improve her balance when she tried to stand.
This same intern worked through the night when most patients were sleeping. Since Mom was awake most of the time, he started sitting with her, and asking questions. She talked to him about all the years of strangeness. He started taking notes and asking more questions and when he wasn't on duty, he was researching. He found enough to convince her Doctors to postpone the brain surgery. More tests were completed and for the first time a complete history of her life was put together. There wasn't any test for Multiple Sclerosis in 1968, but they were pretty sure they had found a diagnosis at last. But, there also wasn't any treatment. All they could do was try to treat each symptom as it developed. Eventually they did eliminate the double vision and she could give up the eye patch. But, it seemed like forever to me that she walked bent forward almost looking at the floor. If she tried to stand straight, her equalibrium made her feel like she was falling backwards. She had to see the floor right in front of her to feel safe. She still smoked cigarettes, (she told me it was the only thing she could really taste) but she couldn't feel the heat and her fingers were often burned. She learned to adjust so she could reach the ashtray. It still wasn't where she saw it. That also meant her coffee cup and spoon and fork and everything else wasn't where she saw it. But, she adjusted and knew how far over to reach. I think that problem eased eventually too. But, I'm not sure. She adjusted so well to things and didn't like to talk about them. I never was sure if the problem was gone or she could hide it. With M.S., you never know if a new problem will be permanent or fade on it's own. She treated each as if it would stay and learned to adjust and it wasn't talked about very long.
Mom tried to live as normally as she could. She and Dad were in a bowling league. The other bowlers had to know of her disease and they learned not to run to her every time she fell. She fell a lot, especially bowling. When she was too sick or dizzy or weak to bowl a substitute joined to bowl for her. I was that substitute when I lived with them, then they found someone who was willing to show up on short notice. There was one other notible substitution. Their Church stopped using the organ when Mom was there. Mom could tolerate the piano, but the organs vibrations made her very uncomfortable. Eventually Mom stopped going to Church regularly because she didn't want everything to revolve around her. She only went occasionally and no one could convince her they wanted her there every week, even without the organ music.
Mom said it was the music that kept her away from Church. But, I wasn't convinced. Her faith was slipping away. She had suffered through childhood because of a selfish, bitter Mother. And, she was suffering throughout her adulthood in ways no one could know or fully understand. Why? A great big WHY? There was never a sweeter, more caring, considerate woman. Anywhere. Anytime.
Her M.S. wasn't as aggressive as some can be. She lived a lifetime of recurring periods of horror and then remission. When a test was finally devised to prove it was M.S., she had the test. When new treatments came out, they were tried on her. When the local Hospital put a Neurosurgeon on staff, she was referrred to him. Dr. N. E. took care of her till her death. He was kind, considerate, very smart and he apologised to her many times. He told her he was so sorry he couldn't do more. Medicine just didn't know enough. (He was also my Dr. when I needed a Neurosurgeon. Mom and I both were treated like his family.)
Since her M.S. was considered a slow progressive kind, whe was asked if she would help by talking to the young people just learning they had M.S. It was suppose to help them by meeting a woman who had had it for so many years and still lived in her own home functioning pretty much on her own. She did that for several more years. I was often there when some of these people visited. She was wonderful with them. Encouraging and letting them talk as long as they needed. Then they would leave and she would break down. She was seeing some of them deteriate so quickly. Others were so young and she knew no cure was going to come quick enough to make their lives anywhere near normal. It was tearing her up, but as long as she thought she was helping them, she wouldn't quit. I often drove my hour long drive back home in tears myself. You feel so helpless.
In 1984, Mom and I took a trip. Just the two of us. Four days and three nights, but we were never more than two hours from her home. (And Dr. N.E.) We drove back to the town she was born in and spent her early years. She showed me the house where her Great Grandparents lived. The ones who raised her Mother. And down the street where her Mothers sisters grew up with their Mother. That house wasn't there anymore. We found her first school, but where she lived wasn't there and she couldn't even find anything recognisable. We spent the first night in that town. Then we headed for Van Wert where she grew up. When we went past the house her Father had built and lived with her Mother, there, where we could see it was a dog house. Over it's door was the name "SAM". That made her laugh. Her Father's name was Sam and she thought if very appropriate the dog house was for "Sam." We spent time at St. Marys Lake. We drove in a big circle, away from but, around Marion. We saw the Piatt Castles. But, mostly we just enjoyed the Ohio countryside. Whenever our route crossed a river or water we could park beside, we stopped. I didn't know then that within a year she would be in a wheelchair. But even then she couldn't walk far and I think she knew. Mostly we talked. In the car, beside any water, all night. Neither of us slept much those four days and three nights. We talked the whole time. We had never had trouble talking and that long time together was no different. My Mother was very knowledgable about a great many subjects. I read everything I come across. Our conversations were not gossipy. I learned a lot about what she believed in. I have probably adopted a lot of those beliefs as my own. I think memories of our trip were what made me miss her so much during my walk along Katchamak Bay when she gave me the heart. (You can read about that on this blog. I wrote it on Jan. 17, 06 under Mom and the N.J. Woods)
When we got back home, Dad was frantic, and upset with us. We had enjoyed being together so much, we'd forgotten to even phone home. He hadn't known where we were or when we would return. My husband reacted the same way when I got home.
A year later she was wheelchair bound. By the time Mom had to use the wheelchair, I was spending every other Wednesday afternoon with her. (When she died, I continued those Wednesdays with Grand Mother. Who insisted it had to be every Wednesday and not every other.) We were able to put the wheelchair in my car and go out to lunch at first. That lasted a couple years. She had to give up seeing M.S. patients then. She was getting weak and the M.S. was progressing much faster. She could no longer help others. That was the first time she told me she didn't want to live if she became bedridden. If she had no independance left to her, she wouldn't consider that living. Existing, breathing, that is not living.
She was bedridden a year. Dad kept her at home. He moved his office into the house and took care of her himself. He got a hospital bed for her and set her up in the other bedroom with a T.V. and everything he could think of to help her deal with this. Her mind stayed sharp, but her body let her down. There was a hospice nurse several times a week, but Dad was there 24-7. My Mom just gave up. She meant it when she said that wasn't living and she was ready to die. One afternoon, she asked me to help her end her life. I crashed. I couldn't even talk to her about it. I left her room in tears. Then I had to tell Dad why I was upset. Then I had to convince him not to scold her. He was mad. It was awful.
A few months later, Dad phoned me very early one morning to tell me she had died in her sleep. That was 1989. Dad is gone now too, so I can tell the rest. I went to Marion as quickly as I could. I asked Dad to tell me just what happened. He said she had apparently been stashing her medication. She was the trained nurse and he didn't know what all the meds were for. She had given him several bottles the day before to renew, and he never questioned them. Till he woke up at 4 A.M. and found them scattered and empty. Then he was afraid he might be held responsible and he got rid of the empty bottles before he made the phone calls. She had been so sick so long, no one even suggested an autopsy. Dad was never questioned.
But, that's when it hit me so hard. She died alone. Dad had checked on her before he went to bed. But, she was alone in the room with the hospital bed. I knew I had let her down. If I had helped her, at least she wouldn't have been alone. Dad and I talked. My mind knows she wouldn't have wanted either of us to get in trouble and if we had known and had helped, it would have been considered murder. But, knowing and feeling are two different things. I still believe she didn't deserve to die alone like that. But, I can never blame her for taking her own life. She was just 62, but she had suffered too long.
Is suicide a sin? Yes. That's what we are all taught. I believe life is a contract with God, and to end it before he calls us home is wrong. But, I cannot and will not believe that our loving Father would punish one of his own when an illness wears them down to that level. Isn't it possible that her death and the way she died had a purpose that God was a part of? My mind, my heart, my soul all tell me that there are worse things then death. Pain and suffering without end or hope can be unbearable and surely God understands that. We don't KNOW that her contract with God didn't include her choice of when it was over. My Mother's suicide was not my first experience with it. I've lived with three loved ones dying "too soon" (one of them was the adored Mother-In-Law who helped me marry her son.) The disease Mom and I used to think we shared, is not the disease I have. Actually, mine is not a disease at all. It's a condition I was born with. I have lived my life with pain. Not the unbearable, hopeless, deteriating kind my Mother knew. Just enough to give me an idea of how her life was. And our closeness and endless conversations helped make it clear to me. I have no fear that her suicide condemmed her to eternal torment. My Mother is with God. She was much too wonderful, and she suffered too much on earth not to go to God when this life ended. Regardless of how it ended. Her life taught me that, and I KNOW it's true.
Not too long after I returned to Marion, a man who had been my friends date when we double dated in my senior year, returned from the Army. His Mother had stayed in touch with me and sent him over to Marion to see me. We dated for 10 months, and when he asked me to marry him, I was thrilled. For several reasons. I'd always liked him, even when he was dating my friend P. I also adored his Mother. He and I had a lot in common and I was so sure the love I felt for him would grow. And, I have to admit, getting us out of Moms way had something to do with it. Mom needed peace and quiet and sure wasn't going to get it with a toddler in the house.
We hadn't been married, and living that hour drive away again, very long when Dad phoned me to say Mom was in a Columbus hospital. They had decided she had a brain tumor and surgery was scheduled just a few days later. This time it was double vision that sent her to the Doctor. She had gotten so much worse, so quickly. She would reach for something and it wouldn't be where she saw it. She couldn't even stand still and straight anymore. A young intern gave her an eye patch and it did eliminate the double vision. She had to change it from eye to eye every hour so neither eye would get weak. Along with the double vision, it should have also helped with the problem of reaching for something. But, it didn't, nor did it improve her balance when she tried to stand.
This same intern worked through the night when most patients were sleeping. Since Mom was awake most of the time, he started sitting with her, and asking questions. She talked to him about all the years of strangeness. He started taking notes and asking more questions and when he wasn't on duty, he was researching. He found enough to convince her Doctors to postpone the brain surgery. More tests were completed and for the first time a complete history of her life was put together. There wasn't any test for Multiple Sclerosis in 1968, but they were pretty sure they had found a diagnosis at last. But, there also wasn't any treatment. All they could do was try to treat each symptom as it developed. Eventually they did eliminate the double vision and she could give up the eye patch. But, it seemed like forever to me that she walked bent forward almost looking at the floor. If she tried to stand straight, her equalibrium made her feel like she was falling backwards. She had to see the floor right in front of her to feel safe. She still smoked cigarettes, (she told me it was the only thing she could really taste) but she couldn't feel the heat and her fingers were often burned. She learned to adjust so she could reach the ashtray. It still wasn't where she saw it. That also meant her coffee cup and spoon and fork and everything else wasn't where she saw it. But, she adjusted and knew how far over to reach. I think that problem eased eventually too. But, I'm not sure. She adjusted so well to things and didn't like to talk about them. I never was sure if the problem was gone or she could hide it. With M.S., you never know if a new problem will be permanent or fade on it's own. She treated each as if it would stay and learned to adjust and it wasn't talked about very long.
Mom tried to live as normally as she could. She and Dad were in a bowling league. The other bowlers had to know of her disease and they learned not to run to her every time she fell. She fell a lot, especially bowling. When she was too sick or dizzy or weak to bowl a substitute joined to bowl for her. I was that substitute when I lived with them, then they found someone who was willing to show up on short notice. There was one other notible substitution. Their Church stopped using the organ when Mom was there. Mom could tolerate the piano, but the organs vibrations made her very uncomfortable. Eventually Mom stopped going to Church regularly because she didn't want everything to revolve around her. She only went occasionally and no one could convince her they wanted her there every week, even without the organ music.
Mom said it was the music that kept her away from Church. But, I wasn't convinced. Her faith was slipping away. She had suffered through childhood because of a selfish, bitter Mother. And, she was suffering throughout her adulthood in ways no one could know or fully understand. Why? A great big WHY? There was never a sweeter, more caring, considerate woman. Anywhere. Anytime.
Her M.S. wasn't as aggressive as some can be. She lived a lifetime of recurring periods of horror and then remission. When a test was finally devised to prove it was M.S., she had the test. When new treatments came out, they were tried on her. When the local Hospital put a Neurosurgeon on staff, she was referrred to him. Dr. N. E. took care of her till her death. He was kind, considerate, very smart and he apologised to her many times. He told her he was so sorry he couldn't do more. Medicine just didn't know enough. (He was also my Dr. when I needed a Neurosurgeon. Mom and I both were treated like his family.)
Since her M.S. was considered a slow progressive kind, whe was asked if she would help by talking to the young people just learning they had M.S. It was suppose to help them by meeting a woman who had had it for so many years and still lived in her own home functioning pretty much on her own. She did that for several more years. I was often there when some of these people visited. She was wonderful with them. Encouraging and letting them talk as long as they needed. Then they would leave and she would break down. She was seeing some of them deteriate so quickly. Others were so young and she knew no cure was going to come quick enough to make their lives anywhere near normal. It was tearing her up, but as long as she thought she was helping them, she wouldn't quit. I often drove my hour long drive back home in tears myself. You feel so helpless.
In 1984, Mom and I took a trip. Just the two of us. Four days and three nights, but we were never more than two hours from her home. (And Dr. N.E.) We drove back to the town she was born in and spent her early years. She showed me the house where her Great Grandparents lived. The ones who raised her Mother. And down the street where her Mothers sisters grew up with their Mother. That house wasn't there anymore. We found her first school, but where she lived wasn't there and she couldn't even find anything recognisable. We spent the first night in that town. Then we headed for Van Wert where she grew up. When we went past the house her Father had built and lived with her Mother, there, where we could see it was a dog house. Over it's door was the name "SAM". That made her laugh. Her Father's name was Sam and she thought if very appropriate the dog house was for "Sam." We spent time at St. Marys Lake. We drove in a big circle, away from but, around Marion. We saw the Piatt Castles. But, mostly we just enjoyed the Ohio countryside. Whenever our route crossed a river or water we could park beside, we stopped. I didn't know then that within a year she would be in a wheelchair. But even then she couldn't walk far and I think she knew. Mostly we talked. In the car, beside any water, all night. Neither of us slept much those four days and three nights. We talked the whole time. We had never had trouble talking and that long time together was no different. My Mother was very knowledgable about a great many subjects. I read everything I come across. Our conversations were not gossipy. I learned a lot about what she believed in. I have probably adopted a lot of those beliefs as my own. I think memories of our trip were what made me miss her so much during my walk along Katchamak Bay when she gave me the heart. (You can read about that on this blog. I wrote it on Jan. 17, 06 under Mom and the N.J. Woods)
When we got back home, Dad was frantic, and upset with us. We had enjoyed being together so much, we'd forgotten to even phone home. He hadn't known where we were or when we would return. My husband reacted the same way when I got home.
A year later she was wheelchair bound. By the time Mom had to use the wheelchair, I was spending every other Wednesday afternoon with her. (When she died, I continued those Wednesdays with Grand Mother. Who insisted it had to be every Wednesday and not every other.) We were able to put the wheelchair in my car and go out to lunch at first. That lasted a couple years. She had to give up seeing M.S. patients then. She was getting weak and the M.S. was progressing much faster. She could no longer help others. That was the first time she told me she didn't want to live if she became bedridden. If she had no independance left to her, she wouldn't consider that living. Existing, breathing, that is not living.
She was bedridden a year. Dad kept her at home. He moved his office into the house and took care of her himself. He got a hospital bed for her and set her up in the other bedroom with a T.V. and everything he could think of to help her deal with this. Her mind stayed sharp, but her body let her down. There was a hospice nurse several times a week, but Dad was there 24-7. My Mom just gave up. She meant it when she said that wasn't living and she was ready to die. One afternoon, she asked me to help her end her life. I crashed. I couldn't even talk to her about it. I left her room in tears. Then I had to tell Dad why I was upset. Then I had to convince him not to scold her. He was mad. It was awful.
A few months later, Dad phoned me very early one morning to tell me she had died in her sleep. That was 1989. Dad is gone now too, so I can tell the rest. I went to Marion as quickly as I could. I asked Dad to tell me just what happened. He said she had apparently been stashing her medication. She was the trained nurse and he didn't know what all the meds were for. She had given him several bottles the day before to renew, and he never questioned them. Till he woke up at 4 A.M. and found them scattered and empty. Then he was afraid he might be held responsible and he got rid of the empty bottles before he made the phone calls. She had been so sick so long, no one even suggested an autopsy. Dad was never questioned.
But, that's when it hit me so hard. She died alone. Dad had checked on her before he went to bed. But, she was alone in the room with the hospital bed. I knew I had let her down. If I had helped her, at least she wouldn't have been alone. Dad and I talked. My mind knows she wouldn't have wanted either of us to get in trouble and if we had known and had helped, it would have been considered murder. But, knowing and feeling are two different things. I still believe she didn't deserve to die alone like that. But, I can never blame her for taking her own life. She was just 62, but she had suffered too long.
Is suicide a sin? Yes. That's what we are all taught. I believe life is a contract with God, and to end it before he calls us home is wrong. But, I cannot and will not believe that our loving Father would punish one of his own when an illness wears them down to that level. Isn't it possible that her death and the way she died had a purpose that God was a part of? My mind, my heart, my soul all tell me that there are worse things then death. Pain and suffering without end or hope can be unbearable and surely God understands that. We don't KNOW that her contract with God didn't include her choice of when it was over. My Mother's suicide was not my first experience with it. I've lived with three loved ones dying "too soon" (one of them was the adored Mother-In-Law who helped me marry her son.) The disease Mom and I used to think we shared, is not the disease I have. Actually, mine is not a disease at all. It's a condition I was born with. I have lived my life with pain. Not the unbearable, hopeless, deteriating kind my Mother knew. Just enough to give me an idea of how her life was. And our closeness and endless conversations helped make it clear to me. I have no fear that her suicide condemmed her to eternal torment. My Mother is with God. She was much too wonderful, and she suffered too much on earth not to go to God when this life ended. Regardless of how it ended. Her life taught me that, and I KNOW it's true.
posted by LeeAnn | 1:06 AM
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