I love Chicago.
Interesting conversation with a man from Vietnam yesterday. We were discussing various SE Asian atrocities committed by oppressive governments. I offered the obvious cliche about people in this country not understanding or appreciating the freedoms we have.
His response was that he thinks we have too much freedom and thinks we need a bit of oppression. People under repressive regimes who do not break the rules are usually safer than most Americans. Oppression that you surrender to is not such a bad thing!
I asked him which freedoms he would take away. He instantly responded: the right to bear arms and the right to slander the sitting president.
Interesting viewpoint. If course, we were having this conversation in Chicago, not Saigon.
Musings From a Life Transformed by Unconditional Love
Sunday, December 02, 2012
Thursday, November 01, 2012
Brian
I notice and appreciate guys like Brian. Every day Brian goes to work keeping the cafeteria dining room clean at Northwestern Memorial Hospital. That's what he's paid to do. He's very good at it. Tables and floors always clean.
Cleaning may be his job, but it's not his calling. He Is a warm, friendly guy. He remembers Sam and what he likes to eat. Last spring when Sam was an inpatient, Brian brought him chocolate pudding.
I'm taking a break right now while Sam watches a movie. As I expected, Brian came over to ask about Sam. But as I sat here longer, I noticed he stopped at other tables as well. He knows all the regulars at this hospital! He asks one person about a book they both are reading. He asks after family members who aren't present. He knows the conditions various people are battling.
If Brian knew I was writing this he'd probably laugh. He's not doing anything special. He doesn't think he's extraordinary. But in my book, he's a holy man. How many people's lives has he healed just by noticing and remembering they exist?
Only God knows and I bet God is smiling.
Cleaning may be his job, but it's not his calling. He Is a warm, friendly guy. He remembers Sam and what he likes to eat. Last spring when Sam was an inpatient, Brian brought him chocolate pudding.
I'm taking a break right now while Sam watches a movie. As I expected, Brian came over to ask about Sam. But as I sat here longer, I noticed he stopped at other tables as well. He knows all the regulars at this hospital! He asks one person about a book they both are reading. He asks after family members who aren't present. He knows the conditions various people are battling.
If Brian knew I was writing this he'd probably laugh. He's not doing anything special. He doesn't think he's extraordinary. But in my book, he's a holy man. How many people's lives has he healed just by noticing and remembering they exist?
Only God knows and I bet God is smiling.
Monday, October 01, 2012
Bill Leslie in Me
For many years we attended LaSalle Street Church and for most if those years we both worked for LaSalle in one capacity or another. I was Bill's secretary for awhile. Bill was founder and senior pastor.
I forget the exact number, but I think it was 480. He used to say "There are over 480 verses in the Bible that speak of God's identification with the poor but only two that speak of the virgin birth. One of those actually says a young girl shall conceive." The point being that our priorities need to be adjusted.
Social Justice starts in the Old Testament and runs through the New Testament like fire. But as you read the verses you will see that God is not calling for "bleeding heart liberalism" or throwing money at the problems of the disenfranchised - although I remain a democrat - but a sacrificial communion with that population. Meeting them as equals and receiving as well as giving.
That kind of equality is terribly difficult for those of us who grew up entitled. I am not sure most of us at LaSalle ever truly achieved it.
I have been the mother of a son with profound disabilities for 30 years and the wife, for close to 40 years, of a man who has been a minister, a public school teacher, a janitor and unemployed. He is currently a school bus driver. We are now impoverished ourselves and live in a community that would have terrified me 40 years ago. Yet I am still conscious that my education, my accent, my skin color, my posture and my assumptions all still communicate authority wherever I am. I am still treated with more respect in stores, restaurants and laundromats than my neighbors. When I take a friend to a hospital or doctor visit, for example, the doctors and nurses invariably speak to me as though I am the guardian or person in charge of the friend (black, Latino or disabled) who is the patient, after all. The friend will be ignored as if invisible unless I direct the doctor to speak to the friend. What is even more disturbing to me is how often the friend is not just okay with this but seems to welcome it and readily defers to me, clearly thinking they will get better care that way. And they are probably correct. This is one way I can be of service to my friend: to make limited use of my power as an over educated white woman without ever mistaking that power for superiority.
In our neighborhood, we are the "go to" people whenever a neighbor has to interact with public officials. We spend a lot of time reading and filling out complicated forms and advising people regarding confusing notices they receive. It seems to me that the complication of arcane paperwork has an inverse ratio to the educational level of the recipient. It is amazing how many intrusive and ridiculous yet terrifying forms poor people must fill out! Although it is time consuming and seems thankless, our front lawn magically never seems to need mowing and the winter Charley had surgery I never had to shovel our front walk. Of course, Sam Care comes first and it is sometimes important to say no, but helping is what friends do for each other and we try to do what we can.
We will never be like our friends. We can only be ourselves as honestly and faithfully as we possibly can. We do not "bear witness to Christ" in the way most Evangelicals mean it. We simply live our difficult life along side our friends who are leading equally difficult lives and by that witness we are all transformed.
I forget the exact number, but I think it was 480. He used to say "There are over 480 verses in the Bible that speak of God's identification with the poor but only two that speak of the virgin birth. One of those actually says a young girl shall conceive." The point being that our priorities need to be adjusted.
Social Justice starts in the Old Testament and runs through the New Testament like fire. But as you read the verses you will see that God is not calling for "bleeding heart liberalism" or throwing money at the problems of the disenfranchised - although I remain a democrat - but a sacrificial communion with that population. Meeting them as equals and receiving as well as giving.
That kind of equality is terribly difficult for those of us who grew up entitled. I am not sure most of us at LaSalle ever truly achieved it.
I have been the mother of a son with profound disabilities for 30 years and the wife, for close to 40 years, of a man who has been a minister, a public school teacher, a janitor and unemployed. He is currently a school bus driver. We are now impoverished ourselves and live in a community that would have terrified me 40 years ago. Yet I am still conscious that my education, my accent, my skin color, my posture and my assumptions all still communicate authority wherever I am. I am still treated with more respect in stores, restaurants and laundromats than my neighbors. When I take a friend to a hospital or doctor visit, for example, the doctors and nurses invariably speak to me as though I am the guardian or person in charge of the friend (black, Latino or disabled) who is the patient, after all. The friend will be ignored as if invisible unless I direct the doctor to speak to the friend. What is even more disturbing to me is how often the friend is not just okay with this but seems to welcome it and readily defers to me, clearly thinking they will get better care that way. And they are probably correct. This is one way I can be of service to my friend: to make limited use of my power as an over educated white woman without ever mistaking that power for superiority.
In our neighborhood, we are the "go to" people whenever a neighbor has to interact with public officials. We spend a lot of time reading and filling out complicated forms and advising people regarding confusing notices they receive. It seems to me that the complication of arcane paperwork has an inverse ratio to the educational level of the recipient. It is amazing how many intrusive and ridiculous yet terrifying forms poor people must fill out! Although it is time consuming and seems thankless, our front lawn magically never seems to need mowing and the winter Charley had surgery I never had to shovel our front walk. Of course, Sam Care comes first and it is sometimes important to say no, but helping is what friends do for each other and we try to do what we can.
We will never be like our friends. We can only be ourselves as honestly and faithfully as we possibly can. We do not "bear witness to Christ" in the way most Evangelicals mean it. We simply live our difficult life along side our friends who are leading equally difficult lives and by that witness we are all transformed.
Tuesday, August 21, 2012
Dark Days
In the beginning (30+ Years ago), life was a continuous nightmare. I was in denial - or still had hope - it's hard to tell the difference even now. I thought Sam was just off to a bad start and some doctor would fix him. Soon.
Cynthia Stack, brilliant clinician with absolutely no compassion, put an end to that phase. She examined him for a couple of minutes and pronounced, "Profoundly retarded, profoundly disabled and probably a dwarf," and walked out of the room. Technically, he's a midget not a dwarf.
Another doctor said, "I believe we should do everything we can for children like this until they are 3 years old. And then, for the sake of the family, if they aren't any better, we put them in an institution." At the time I thought, "No way." And we didn't, but looking back I see his point. I don't think I agree with it, but I understand what he meant. Making the decision to keep Sam didn't feel very important at the time, it just seemed like the obvious choice. But it was one of those Doctor Who universe-splitting moments that change the future forever. We surrendered all hope of being "normal". It transformed our family, it made the three of us (Charley, Ben and me) into who we are today. I don't know if that's good or bad, it's just true.
That decision was the end of a long process of acceptance. He wasn't going to get better. He wasn't going to grow up. He wasn't the little girl I thought I was carrying when I was pregnant, he was Sam.
Fast forward 30 mostly wonderful years.
30 years in which I have passionately fought for quality of life for my baby.
30 years in which I have been slowly transformed by the combination of intense joy and overwhelming sadness that being Sam's Mom involves.
30 years of sleep deprivation, worry and learning words like bilateral choroidial coloboma and ataxic cerebral palsy and central sleep apnea and cystic fibrosis-like bronchiecstasis and compensated acidosis.
Sam is the author of my world view, my faith, my politics, my personality. When people comment on my wisdom or creativity and wonder where it comes from, I point to Sam. Maybe these things were latent within me and Sam brought them out. Every mother of a child with disabilities is different, every child with disabilities is different. But the combination of Sam and me has been profound and deep.
And now it's drawing to a close. We're losing him. I've always said that I hope I live longer than him because he would be so lost and helpless without me. Now I am facing the fact that he is declining and will almost certainly die before me and I will be so lost and helpless without him.
I'm still fighting for his life, but I am coming to a new awareness of my imminent defeat. No one knows how much longer we have together, but it's getting worse and I'm scared.
Cynthia Stack, brilliant clinician with absolutely no compassion, put an end to that phase. She examined him for a couple of minutes and pronounced, "Profoundly retarded, profoundly disabled and probably a dwarf," and walked out of the room. Technically, he's a midget not a dwarf.
Another doctor said, "I believe we should do everything we can for children like this until they are 3 years old. And then, for the sake of the family, if they aren't any better, we put them in an institution." At the time I thought, "No way." And we didn't, but looking back I see his point. I don't think I agree with it, but I understand what he meant. Making the decision to keep Sam didn't feel very important at the time, it just seemed like the obvious choice. But it was one of those Doctor Who universe-splitting moments that change the future forever. We surrendered all hope of being "normal". It transformed our family, it made the three of us (Charley, Ben and me) into who we are today. I don't know if that's good or bad, it's just true.
That decision was the end of a long process of acceptance. He wasn't going to get better. He wasn't going to grow up. He wasn't the little girl I thought I was carrying when I was pregnant, he was Sam.
Fast forward 30 mostly wonderful years.
30 years in which I have passionately fought for quality of life for my baby.
30 years in which I have been slowly transformed by the combination of intense joy and overwhelming sadness that being Sam's Mom involves.
30 years of sleep deprivation, worry and learning words like bilateral choroidial coloboma and ataxic cerebral palsy and central sleep apnea and cystic fibrosis-like bronchiecstasis and compensated acidosis.
Sam is the author of my world view, my faith, my politics, my personality. When people comment on my wisdom or creativity and wonder where it comes from, I point to Sam. Maybe these things were latent within me and Sam brought them out. Every mother of a child with disabilities is different, every child with disabilities is different. But the combination of Sam and me has been profound and deep.
And now it's drawing to a close. We're losing him. I've always said that I hope I live longer than him because he would be so lost and helpless without me. Now I am facing the fact that he is declining and will almost certainly die before me and I will be so lost and helpless without him.
I'm still fighting for his life, but I am coming to a new awareness of my imminent defeat. No one knows how much longer we have together, but it's getting worse and I'm scared.
Saturday, June 02, 2012
Friends are like flowers
There's a children's song that goes "friends are like flowers in the garden of life". The bridge is: Are you a daisy? Are you a rose? Are you a dandelion?
Hmm.
I may be getting old and curmudgeon-ish. My recent trials have left me with the distinct impression that friends are indeed like flowers. Some are just plain beautiful (like my Spred friends who helped me garden!). They need to be cultivated and appreciated. They are beautiful flowers or even healthy, nourishing fruits and vegetables!
Some are very clearly weeds and need to be dug out and composted. I am reluctant to do this with real weeds, let alone people who are destructive in my life. But it has to be done sometimes. For example, if one is a recovering alcoholic that person might need to "weed out" old drinking buddies. In my case, I am discovering that people who do not understand my situation and think I should be doing more for them than I can, are destructive to me. I like to be of use to others - but in my spare time! Not as a full time occupation or on demand. I don't actually HAVE a lot of spare time. I am very reluctant to "weed" these people out. But I have noticed that the ones that need the most help are often the ones who have very little trouble finding a new savior. I may be very expendable and not particularly important to them.
Then there is the bamboo. You can't get rid of it really. In our case, we inherited it from previous owners. I think we all have some bamboo people in our lives. These are people who, for one reason or another, you cannot get rid of, who are naturally beautiful, but who can be incredibly invasive if not contained. Building boundaries around bamboo is the hardest task facing this gardener both physically and metaphorically!
Hmm.
I may be getting old and curmudgeon-ish. My recent trials have left me with the distinct impression that friends are indeed like flowers. Some are just plain beautiful (like my Spred friends who helped me garden!). They need to be cultivated and appreciated. They are beautiful flowers or even healthy, nourishing fruits and vegetables!
Some are very clearly weeds and need to be dug out and composted. I am reluctant to do this with real weeds, let alone people who are destructive in my life. But it has to be done sometimes. For example, if one is a recovering alcoholic that person might need to "weed out" old drinking buddies. In my case, I am discovering that people who do not understand my situation and think I should be doing more for them than I can, are destructive to me. I like to be of use to others - but in my spare time! Not as a full time occupation or on demand. I don't actually HAVE a lot of spare time. I am very reluctant to "weed" these people out. But I have noticed that the ones that need the most help are often the ones who have very little trouble finding a new savior. I may be very expendable and not particularly important to them.
Then there is the bamboo. You can't get rid of it really. In our case, we inherited it from previous owners. I think we all have some bamboo people in our lives. These are people who, for one reason or another, you cannot get rid of, who are naturally beautiful, but who can be incredibly invasive if not contained. Building boundaries around bamboo is the hardest task facing this gardener both physically and metaphorically!
Friday, May 18, 2012
Marriage
Me (with a sad sigh): I don't know what's happened. There was a day, not so long ago, when I had a routine. I did laundry everyday and put it away before it got wrinkled. Your sock, t-shirt and underwear drawers were neat and organized.
Him: Is this some kind of weird woman thing where your self esteem is tied to MY underwear drawer?
Me: Well, when you put it THAT way it sounds kind of silly, but yes.
Him: Well, put your energy into something else. I am perfectly content to have MY underwear drawer in chaos.
Me: Blank look of shock.
It IS his underwear drawer. Even after 37 years of marriage, it's still HIS underwear drawer. My value as a person really shouldn't be based on whether or not his jocks are folded. Should it? His mother IRONED not only boxers but briefs. But I'm not his mother. I'm his partner.
I've known him since I was 15 years old. But lately I've noticed that he's changing rapidly. In fact, I think he's aging quite well. When I listen to what he is saying, I'm always amazed. The last 60 years of experience is suddenly coalescing into brilliance and wisdom.
For our 15th wedding anniversary, we took a bunch of couples out to a park that was formerly owned by a married couple who were famous for, among other things, their happiness together. We had everyone make plaster masks of each other and then we sat in a circle and talked about the masks we put on those to whom we are closest. It is a sort of short hand caricature of who that person is, or was the last time we looked. For a relationship to grow, we each have to be willing to release our partner from the stiff, plaster masks we create for them, and see them for who they are this minute. Then we took of each other's masks and promised to see the real beloved.
Lately, he's busting out of his white plaster cast in strength and beauty. I really like him in living color! I was giddy in love with him long ago. I'm not so giddy now. I love him with a more, um, dignified passion. But I think I love him a lot more today than I did on our wedding day.
Him: Is this some kind of weird woman thing where your self esteem is tied to MY underwear drawer?
Me: Well, when you put it THAT way it sounds kind of silly, but yes.
Him: Well, put your energy into something else. I am perfectly content to have MY underwear drawer in chaos.
Me: Blank look of shock.
It IS his underwear drawer. Even after 37 years of marriage, it's still HIS underwear drawer. My value as a person really shouldn't be based on whether or not his jocks are folded. Should it? His mother IRONED not only boxers but briefs. But I'm not his mother. I'm his partner.
I've known him since I was 15 years old. But lately I've noticed that he's changing rapidly. In fact, I think he's aging quite well. When I listen to what he is saying, I'm always amazed. The last 60 years of experience is suddenly coalescing into brilliance and wisdom.
For our 15th wedding anniversary, we took a bunch of couples out to a park that was formerly owned by a married couple who were famous for, among other things, their happiness together. We had everyone make plaster masks of each other and then we sat in a circle and talked about the masks we put on those to whom we are closest. It is a sort of short hand caricature of who that person is, or was the last time we looked. For a relationship to grow, we each have to be willing to release our partner from the stiff, plaster masks we create for them, and see them for who they are this minute. Then we took of each other's masks and promised to see the real beloved.
Lately, he's busting out of his white plaster cast in strength and beauty. I really like him in living color! I was giddy in love with him long ago. I'm not so giddy now. I love him with a more, um, dignified passion. But I think I love him a lot more today than I did on our wedding day.
Wednesday, May 16, 2012
PTSD Land
It's the decisions that haunt me. After 4 months (or 30 years) of holding Sam's life in the palm of my hand, I'm worn out. Today is the third day in a row that he didn't need oxygen during the day. Progress or blip? Ask me tomorrow.
Today I can't make up my mind about anything. Brush my teeth, get dressed, take pills, make tea? What should I do first? Every decision seems like a life and death decision and I'm tired of making life and death decisions. Sam woke up and then I knew what to do, feed him, give him meds, dress him, change him, give him treatments, entertain him.
But I when I went to the kitchen to get another Ensure, I found myself doubled over and crying. Whenever I wasn't needed to take care of Sam today, I'd put on Sesame Street and go to the bedroom and cry. I still couldn't decide anything. So by the time Charley came home I was wearing underwear, a tee-shirt and pajama bottoms. I had made tea, but had only eaten stuff around the house that didn't need cooking. (string cheese, cuties, tea and cookies)
I turned Sam over to him and went back to bed for more sobbing.
I often fall apart once the crisis is over. Maybe that's what this is. How do I tell? Charley suggested I go for a walk, but that means deciding where I want to go. I can't deal with that either. I went to the basement and found a pair of pants.
"Clinical depression or recovery?" Charley asks when I come upstairs. I don't know the answer. "Go outside," he commands.
It feels better outside in the sunshine. It really does. I see neighbors, I see green. The sun is setting in my eyes. I form a plan. I will go someplace, drink tea and knit. I pass several restaurants because it doesn't feel like I've walked far enough.
A new nail salon has opened up since the last time I left the house. 15% off Grand Opening Special. Ok. Manicure and pedicure. Still a lot of decisions, but I make them without too much difficulty.
Color?
Round or square?
Toe nails bare or colored?
I make the decisions. I sit in the chair and it massages my back. The man cleans my feet, and massages my legs. I go for bare toenails. I knit while he works on my feet. It gets easier.
Then I went into Mr. Gee's for a salad. More tough decisions. With chicken or plain? For here or to go? The place is filled with police officers. This is reassuring. Probably no one will die if I make the wrong choice - that's what police are for, right? Large Greek Salad WITH chicken to go. AND an iced tea. Large. Heh. I can do this.
A day of sobbing, and an hour outside with a manicure and some progress on my knitting. I make a decision: This is Recovery. I need to collapse for a bit before I can go on. But I will go on.
Today I can't make up my mind about anything. Brush my teeth, get dressed, take pills, make tea? What should I do first? Every decision seems like a life and death decision and I'm tired of making life and death decisions. Sam woke up and then I knew what to do, feed him, give him meds, dress him, change him, give him treatments, entertain him.
But I when I went to the kitchen to get another Ensure, I found myself doubled over and crying. Whenever I wasn't needed to take care of Sam today, I'd put on Sesame Street and go to the bedroom and cry. I still couldn't decide anything. So by the time Charley came home I was wearing underwear, a tee-shirt and pajama bottoms. I had made tea, but had only eaten stuff around the house that didn't need cooking. (string cheese, cuties, tea and cookies)
I turned Sam over to him and went back to bed for more sobbing.
I often fall apart once the crisis is over. Maybe that's what this is. How do I tell? Charley suggested I go for a walk, but that means deciding where I want to go. I can't deal with that either. I went to the basement and found a pair of pants.
"Clinical depression or recovery?" Charley asks when I come upstairs. I don't know the answer. "Go outside," he commands.
It feels better outside in the sunshine. It really does. I see neighbors, I see green. The sun is setting in my eyes. I form a plan. I will go someplace, drink tea and knit. I pass several restaurants because it doesn't feel like I've walked far enough.
A new nail salon has opened up since the last time I left the house. 15% off Grand Opening Special. Ok. Manicure and pedicure. Still a lot of decisions, but I make them without too much difficulty.
Color?
Round or square?
Toe nails bare or colored?
I make the decisions. I sit in the chair and it massages my back. The man cleans my feet, and massages my legs. I go for bare toenails. I knit while he works on my feet. It gets easier.
Then I went into Mr. Gee's for a salad. More tough decisions. With chicken or plain? For here or to go? The place is filled with police officers. This is reassuring. Probably no one will die if I make the wrong choice - that's what police are for, right? Large Greek Salad WITH chicken to go. AND an iced tea. Large. Heh. I can do this.
A day of sobbing, and an hour outside with a manicure and some progress on my knitting. I make a decision: This is Recovery. I need to collapse for a bit before I can go on. But I will go on.
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