Flashback: It is January 31, 1971, and my husband John and I are promising to stay together for richer or poorer, better or worse, in sickness and in health, until death do us part.
Flashforward:
It is October 7, 2013, and once again, after I mention to someone that I have Parkinson's disease, the person proceeds to tell me how her life has been made very hard because her husband has Parkinson's disease also. There are many variations on this theme. There is, "My poor sister, her husband has Parkinson's disease too." There is, "my spouse had a stroke, but like you, he is uncomfortable driving and I have to drive him around and it's making me exhausted." There is, "I would have liked to take a big trip to Europe, but, like you, my spouse isn't comfortable traveling, so I can't go."
People, are you listening to yourselves? Somewhere in your comments is an implication that I have somehow, single handedly, set out to destroy my husband's life. Or perhaps just that they have tremendous sympathy for my husband, who, by the way, is feeling well at 64 and still practicing law and enjoying it. Meanwhile, I had to give up my practice in my 50's. In fact, while he is out running from hearing to hearing, getting new clients, and going to meetings, I am usually sitting at home nursing my aches and pains. But, oh well, that sure is tough on him. Or maybe I'm just selfish because I am unwilling to risk another infection by getting exhausted traveling abroad. My poor husband, with whom I have made two trips to Israel, rode on camels to Jordan, several trips to London, and literally countless trips to Paris, will have to restrict himself now to seeing our beautiful contiguous 48 states for a while. Poor fellow.
I work very hard at being cheerful, and when I can't do it on purpose, I am usually at least inadvertently optimistic. When I occasionally complain to John that friends don't ever ask me how I am doing (other than the usual perfunctory "how are you", or if we are visiting my daughter in the south "how y'all doin' today"), he responds that they do care, because they ask HIM how I am doing. Have I lost my capacity to articulate my feelings? I don't think so! So, I guess they are asking out of sympathy to him, because if I am not doing well, that is somehow hard on him.
People, I am still here, and my husband is alive and well, and having some of the best years of his life, thank you very much. I may need to nap every day, but that doesn't stop him from being out of the house 12 hours a day almost every weekday. I may get tired traveling, but we always stay in a suite, so he can have a room to check his e-mail and keep up with the office when I nap. I may not feel like cooking, but that doesn't mean he is tied down to the kitchen -- there are lots of places for takeout suppers on his way home from work.
Maybe I am being an inadvertent optimist after all. I am optimistic that my husband and I are still having a great life together, and, God willing, we will be for a while to come. After all, when I tell him that someone just complained to me that they are having a hard time because of their spouse's Parkinson's Disease, he always says, "Well, just be glad I'm not that person." And he isn't!
Tuesday, October 8, 2013
Wednesday, June 19, 2013
My Alternate Universe
Flashback:
It is almost any year in our marriage, and my husband is encouraging me to join him in watching a science fiction show. Numerous versions of Star Trek, along with Dr. Who, Quantum Leap and Sliders have graced our television set. While I don't like shows with monsters who speak like humans, I have to admit that I do enjoy a good time travel show. Quantum Leap, for example, was always one of my favorites, leaping into another world, another life. I also enjoy the concept of an alternate universe. After all, the universe is so vast, who knows what could be out there.
Flashforward:
It is 2013, and while I never expected it, my world has changed. Oh, I'm at the same address I've been at for over 25 years, with the same husband I've had for 42 years, and often talking on the phone to the same sister I've had for 59 years. I speak with my own voice, I probably say the same old things, and appear to others to be nothing more than an older version of myself. The effects of over a decade of living with degenerative neurological and pulmonary disease, however, have altered my world. When I talk with friends and relatives who are near my age or even older, I often have the feeling that the world I encounter differs from their world. My world is slower, with more naps, less activity, and a kind of distracted inattention which sometimes requires me to focus to remember the time and the season, or the fact that I am cooking something on the range. I feel that I am living in my own alternate universe.
My universe is timeless. The ordinary sense of time does not exist. I float in and out of the day, judging time only by disciplining myself to look at a calendar or a clock. But I don't feel time passing. Day and night feel the same, and sleep makes sense whenever I feel dozy. In my universe each moment feels like forever. Each pleasure, therefore, is endless. Whatever is absorbing me is my world right then. Of course this means that each sadness is endless too. To avoid that consequence, in my world the focus is on pleasurable experiences. If I feel a little blue, there is no rule that makes me catch up on the news in the morning, I can watch an old movie instead. I can feel the pleasurable sensation of escape, and that becomes my world too, forever. If the phone rings, a cheerful conversation will fill my heart and mind, and when it ends, I can feel lost in the memory of it for as long as I please.
My universe doesn't have the rules that bind other people, I can float through my day however I want. There is no job, there are no committees, just a few pleasurable clubs, which I can manage as I wish. Book club books can be polished off in the 24 hours before the meeting. That can be my reading day, and I can immerse myself in the book so that it becomes my world. Laundry day can wait until I have nothing decent left to wear. I have lots of clothes, so no reason to rush. A T shirt and sweat pants can make me decent enough to open the blinds, or I can stay in my pajamas and keep the blinds shut. In the darkened room, I can linger before the images of the movies floating across the screen, dozing on and off, restarting and rewinding the recorded films. By the end of a five hour afternoon I will have watched a two hour movie. In my universe, that's good timing.
In my universe, I am constantly surprised by what I have to do in the coming week. There are doctors appointments I have made, lunches with friends, study groups I regularly attend. In my world, though, it's hard to remember, so when I check my calendar on Sunday evening, I can be pleasantly surprised by the activities I have planned. In my world, even my doctors seem like old friends. With appointments every 4 or six months, I see each of them more than I see many of my real friends anyway. They are all pleasant, and have soothing manners. They have given up on complaining about my weight, and seem to be enormously happy if I lose even a few pounds. I guess I can give them that pleasure.
In my universe, my preferred modes of travel differ from those of my friends and relatives. I don't care to travel on inexpensive airlines, I want an airline that actually assists passengers that need assistance. I prefer long layovers to short, and pay a premium to spend a pleasant hour or two relaxing in the airline's club. I happily check my luggage, no matter what the fee, rather than face the unpleasant aches and pains of lugging something heavy around. I am thrilled if the trip is short, so much less stiffness and fatigue that way. I love familiar places and things too. When I arrive, I want plenty of time to rest and sleep before I have to go site seeing or out to eat. Fancy restaurants are best at lunch, and evenings are best spent in a comfortable lounge chair with a high back that supports my neck. Itineraries should be planned with long lazy afternoons for napping.
In my universe, I am puzzled by people my age who rush, or do things quickly. I am puzzled that they do more than one of two things outside the house each day, or enjoy having plans each and every day. I don't understand how they manage it or why they care to live that way. I vaguely remember a woman with my name who lived that way, but she seems like a stranger now. I don't care any longer to talk to my peers about their numerous activities - but I remember that I have to listen to be polite. To be honest, I sometimes tune out when they start talking about their jobs and committees, their docenting and volunteering, their trips to foreign lands, and their projects around the house. What does that have to do with me, anyway, it's not a part of my universe. I like to hear about young people's activities, however, the younger generation of adults and the children. I am glad for them that they have this chance to be in a lively universe, it is good for their age.
In my universe, it is not a compliment to be told I am not old. I am old, at least I am old enough to get senior citizens rates, have plenty of aches and pains, and often use a cane. I want to experience old age, and I need to do it now, while there is time. You see, in my universe, it's a privilege to wake up each day and take a breath, and feel that drowsy few minutes before anything hurts, or any body part decides to move of its own volition.
My universe is filled with accomplishments and accolades too. I pat myself on the back for remembering an event or meeting, and another for remembering what time to leave in order to arrive on time. If I remember to leave enough time to blow dry my hair and put on make up, more applause. There's no real penalty, however, for letting my hair air dry and going make up -less, or even for forgetting my earrings or watch. If I can follow a conversations, and make it through a social event with no major spills, another award. I congratulate myself for being gracious when I receive embarrassing help. Like the stranger in the airport, who told me my sweater was on inside out. Or the people at my table who point out that there is food on my face, maybe on my cheek, often on my nose. Do they think I am a two year old? People I hardly know tuck in my tags and those annoying strings they put on clothing to make them easier to hang, and tell me when my shirt is half in and half out of my pants. Does it really matter anyway?
Perhaps I praise myself the most when I manage to make a meal without leaving out an ingredient. But who really cares if I forgot the pepper? I follow the rule not to leave the room when anything is on the range top. That way, I notice if it starts to burn right away, and I don't forget that I am cooking something. I always set the timer if I am baking. Besides, I make most of our dinners in the crock pot, where they can simmer all day without disturbing me.
Somehow, in my universe, I still know more than little children. I can make them a simple meal, give them a bath, and tuck them into bed with a bedtime story. I can even turn on the TV or put on a DVD. The children seem to to appreciate these skills. I know enough to make sure my husband is around for any overnight babysitting, I don't want to press my luck. The only risk I run is that while focusing on the children I may misplace something of my own. Last time it was my diamond engagement ring and wedding ring. I had put them in my pocket and then forgotten, and the rings fell out of the pockets when I threw the pants in the hamper. After sifting through the garbage to make sure I hadn't thrown the rings out entirely, they finally tumbled out after I shook out each item of clothes in the hamper. Mental note: leave rings in the jewelry box when babysitting.
Flashforward:
It is June 19, 2013. I suppose I could have told you my story in a different way. I could have said that after several years, I have resigned myself to being disabled. I could have said that I am good at keeping track of my medications, my doctors appointments, and even my grandkids, when I do watch them from time to time. I could have said that I take care of myself - doing my laundry, cooking meals for me and my husband, making social engagements. I could have mentioned too that I have learned to deal with fatigue by amusing myself with quiet activities such as books and movies, scheduling naps and days when I stay home to rest up, and limiting my travel.
I could have said that, and it would have been true. But what does that mean anyway? I prefer to believe that I have the privilege of living in a pleasant place, a place where no one worries about trivial things, where the simple things of life bring pleasure, and where the beauty of life is appreciated, each and every day. That's my alternate universe, and it's a pretty nice place after all.
It is almost any year in our marriage, and my husband is encouraging me to join him in watching a science fiction show. Numerous versions of Star Trek, along with Dr. Who, Quantum Leap and Sliders have graced our television set. While I don't like shows with monsters who speak like humans, I have to admit that I do enjoy a good time travel show. Quantum Leap, for example, was always one of my favorites, leaping into another world, another life. I also enjoy the concept of an alternate universe. After all, the universe is so vast, who knows what could be out there.
Flashforward:
It is 2013, and while I never expected it, my world has changed. Oh, I'm at the same address I've been at for over 25 years, with the same husband I've had for 42 years, and often talking on the phone to the same sister I've had for 59 years. I speak with my own voice, I probably say the same old things, and appear to others to be nothing more than an older version of myself. The effects of over a decade of living with degenerative neurological and pulmonary disease, however, have altered my world. When I talk with friends and relatives who are near my age or even older, I often have the feeling that the world I encounter differs from their world. My world is slower, with more naps, less activity, and a kind of distracted inattention which sometimes requires me to focus to remember the time and the season, or the fact that I am cooking something on the range. I feel that I am living in my own alternate universe.
My universe is timeless. The ordinary sense of time does not exist. I float in and out of the day, judging time only by disciplining myself to look at a calendar or a clock. But I don't feel time passing. Day and night feel the same, and sleep makes sense whenever I feel dozy. In my universe each moment feels like forever. Each pleasure, therefore, is endless. Whatever is absorbing me is my world right then. Of course this means that each sadness is endless too. To avoid that consequence, in my world the focus is on pleasurable experiences. If I feel a little blue, there is no rule that makes me catch up on the news in the morning, I can watch an old movie instead. I can feel the pleasurable sensation of escape, and that becomes my world too, forever. If the phone rings, a cheerful conversation will fill my heart and mind, and when it ends, I can feel lost in the memory of it for as long as I please.
My universe doesn't have the rules that bind other people, I can float through my day however I want. There is no job, there are no committees, just a few pleasurable clubs, which I can manage as I wish. Book club books can be polished off in the 24 hours before the meeting. That can be my reading day, and I can immerse myself in the book so that it becomes my world. Laundry day can wait until I have nothing decent left to wear. I have lots of clothes, so no reason to rush. A T shirt and sweat pants can make me decent enough to open the blinds, or I can stay in my pajamas and keep the blinds shut. In the darkened room, I can linger before the images of the movies floating across the screen, dozing on and off, restarting and rewinding the recorded films. By the end of a five hour afternoon I will have watched a two hour movie. In my universe, that's good timing.
In my universe, I am constantly surprised by what I have to do in the coming week. There are doctors appointments I have made, lunches with friends, study groups I regularly attend. In my world, though, it's hard to remember, so when I check my calendar on Sunday evening, I can be pleasantly surprised by the activities I have planned. In my world, even my doctors seem like old friends. With appointments every 4 or six months, I see each of them more than I see many of my real friends anyway. They are all pleasant, and have soothing manners. They have given up on complaining about my weight, and seem to be enormously happy if I lose even a few pounds. I guess I can give them that pleasure.
In my universe, my preferred modes of travel differ from those of my friends and relatives. I don't care to travel on inexpensive airlines, I want an airline that actually assists passengers that need assistance. I prefer long layovers to short, and pay a premium to spend a pleasant hour or two relaxing in the airline's club. I happily check my luggage, no matter what the fee, rather than face the unpleasant aches and pains of lugging something heavy around. I am thrilled if the trip is short, so much less stiffness and fatigue that way. I love familiar places and things too. When I arrive, I want plenty of time to rest and sleep before I have to go site seeing or out to eat. Fancy restaurants are best at lunch, and evenings are best spent in a comfortable lounge chair with a high back that supports my neck. Itineraries should be planned with long lazy afternoons for napping.
In my universe, I am puzzled by people my age who rush, or do things quickly. I am puzzled that they do more than one of two things outside the house each day, or enjoy having plans each and every day. I don't understand how they manage it or why they care to live that way. I vaguely remember a woman with my name who lived that way, but she seems like a stranger now. I don't care any longer to talk to my peers about their numerous activities - but I remember that I have to listen to be polite. To be honest, I sometimes tune out when they start talking about their jobs and committees, their docenting and volunteering, their trips to foreign lands, and their projects around the house. What does that have to do with me, anyway, it's not a part of my universe. I like to hear about young people's activities, however, the younger generation of adults and the children. I am glad for them that they have this chance to be in a lively universe, it is good for their age.
In my universe, it is not a compliment to be told I am not old. I am old, at least I am old enough to get senior citizens rates, have plenty of aches and pains, and often use a cane. I want to experience old age, and I need to do it now, while there is time. You see, in my universe, it's a privilege to wake up each day and take a breath, and feel that drowsy few minutes before anything hurts, or any body part decides to move of its own volition.
My universe is filled with accomplishments and accolades too. I pat myself on the back for remembering an event or meeting, and another for remembering what time to leave in order to arrive on time. If I remember to leave enough time to blow dry my hair and put on make up, more applause. There's no real penalty, however, for letting my hair air dry and going make up -less, or even for forgetting my earrings or watch. If I can follow a conversations, and make it through a social event with no major spills, another award. I congratulate myself for being gracious when I receive embarrassing help. Like the stranger in the airport, who told me my sweater was on inside out. Or the people at my table who point out that there is food on my face, maybe on my cheek, often on my nose. Do they think I am a two year old? People I hardly know tuck in my tags and those annoying strings they put on clothing to make them easier to hang, and tell me when my shirt is half in and half out of my pants. Does it really matter anyway?
Perhaps I praise myself the most when I manage to make a meal without leaving out an ingredient. But who really cares if I forgot the pepper? I follow the rule not to leave the room when anything is on the range top. That way, I notice if it starts to burn right away, and I don't forget that I am cooking something. I always set the timer if I am baking. Besides, I make most of our dinners in the crock pot, where they can simmer all day without disturbing me.
Somehow, in my universe, I still know more than little children. I can make them a simple meal, give them a bath, and tuck them into bed with a bedtime story. I can even turn on the TV or put on a DVD. The children seem to to appreciate these skills. I know enough to make sure my husband is around for any overnight babysitting, I don't want to press my luck. The only risk I run is that while focusing on the children I may misplace something of my own. Last time it was my diamond engagement ring and wedding ring. I had put them in my pocket and then forgotten, and the rings fell out of the pockets when I threw the pants in the hamper. After sifting through the garbage to make sure I hadn't thrown the rings out entirely, they finally tumbled out after I shook out each item of clothes in the hamper. Mental note: leave rings in the jewelry box when babysitting.
Flashforward:
It is June 19, 2013. I suppose I could have told you my story in a different way. I could have said that after several years, I have resigned myself to being disabled. I could have said that I am good at keeping track of my medications, my doctors appointments, and even my grandkids, when I do watch them from time to time. I could have said that I take care of myself - doing my laundry, cooking meals for me and my husband, making social engagements. I could have mentioned too that I have learned to deal with fatigue by amusing myself with quiet activities such as books and movies, scheduling naps and days when I stay home to rest up, and limiting my travel.
I could have said that, and it would have been true. But what does that mean anyway? I prefer to believe that I have the privilege of living in a pleasant place, a place where no one worries about trivial things, where the simple things of life bring pleasure, and where the beauty of life is appreciated, each and every day. That's my alternate universe, and it's a pretty nice place after all.
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