A
Brief For The Defense by Jack Gilbert, another early SF poetry artist
that got overlooked.He crossed the threshold here in Berkeley, where he lived a long while after traveling the world over.
Sorrow everywhere. Slaughter everywhere. If babies
are not starving someplace, they are starving
somewhere else. With flies in their nostrils.
But we enjoy our lives because that’s what God wants.
Otherwise the mornings before summer dawn would not
be made so fine. The Bengal tiger would not
be fashioned so miraculously well. The poor women
at the fountain are laughing together between
the suffering they have known and the awfulness
in their future, smiling and laughing while somebody
in the village is very sick. There is laughter
every day in the terrible streets of Calcutta,
and the women laugh in the cages of Bombay.
If we deny our happiness, resist our satisfaction,
we lessen the importance of their deprivation.
We must risk delight. We can do without pleasure,
but not delight. Not enjoyment. We must have
the stubbornness to accept our gladness in the ruthless
furnace of this world. To make injustice the only
measure of our attention is to praise the Devil.
If the locomotive of the Lord runs us down,
we should give thanks that the end had magnitude.
We must admit there will be music despite everything.
We stand at the prow again of a small ship
anchored late at night in the tiny port
looking over to the sleeping island: the waterfront
is three shuttered cafés and one naked light burning.
To hear the faint sound of oars in the silence as a rowboat
comes slowly out and then goes back is truly worth
all the years of sorrow that are to come.
And now this is me talking: it is really worth years of sorrow, and deep loneliness is sorrow for me, to hear the faint sound of oars in the silence as a rowbow slowly rows by?
Saturday, November 30, 2013
Monday, November 18, 2013
damaged metabolism, Wendall Barry
©My weight issues are complicated by having been misdiagnosed as a Type II
diabetic when a new endocrinologist, about a year ago, confirmed I am
Type I. 12 years misdiagnosed. and for another 12 years before that, I
took meds that damage the body's metabolism, with no warnings that one
side affect is serious weight gain. I ballooned up on those drugs, sent
myself ceaseless message of self hate. I used to wonder if I was
sleep-eating but as the only adult in my home, I was the only person who
brought in food and it didn't disappear so it was unlikely I was eating unconsciously. Note: years later when my
teen daughter became anorexic/bulimic, I would certainly notice when
large quanities of food disappeared overnight.
At a ten day silent retreat once, on the final day when they let you talk, a bulimic living with her parents had taken the retreat just to get away form food cause she couldn't afford any medical treatment (altho if so sick she could not work, and she was, she was likely eligible to be disabled and get on Medicaid and even Medicare . . . another story). I told her I was pretty sure I knew within just a week or two when my daughter's eating disorder got serious. The young woman panicked, wondering if her parents 'knew'. She pressed and pressed me to tell her how I 'knew'.
I told her I did not see how a parent living with a child could not know. Either you see your child is losing weight rapidly or you notice massive amounts of food disapearing. You don't bring in groceries into your own home, and then see they have disappeared and not notice, IF you are living consciously. I suggested that maybe her parents didn't know but that could only be because they were in denial. The poor gal pressed and pressed me to tell me exactly what I noticed. She was so panicked to think her parents might know.
I don't see how someone could live with their child, even an adult college grad child, and not notice if mass quantities of food disappeared from the kitchen overnight most nights. That young woman was positive her parents didn't know. I said "If they don't know, they don't want to know. It's called denial." Poor thing. She couldn't wait to get home and look for signs indicating whether her parents 'knew'.
Some think anorexia-bulimia are different disorders but many medical experts see it as the same disorder, at different ends of the spectrum. Food addicts likely fit into the spectrum. Many bulimics are fat, many are not. When my daughter stops starving, she invariably slides into binge eating, unless, I imagine, she is in recovery programs and taking very good care of herself. And I sure hope she is, of course. Once she shared an apartment with a non-lover guy (the guy was gay) and she would often eat every bite of food in the house, even things that are unpalatable, like a jar of relish. Then she ate a box of laxatives. When my daughter got into better treatment programs -- the quality of eating disorder treatment ranges greatly, as in most things -- she was told that eating laxatives as she did turned some of her organs into messy sponges, causing permanent damage from the harsh chemicals in the laxatives. Knowledgeable docs could exam her for two minutes and know she was binge-purging. Her roommate would be so angry. He'd get up for breakfast and there was no food in the house. He was abusive to her, apart from issues of her binging on his food. Several years ago, he contacted me on this blog asking how to get in touch with her. He said he was in recovery and wished to make amends to her. I was glad to hear it but I could not tell him how to contact her. Now I know where she works. I think he found her anyway.
Eating disorders are like alcoholism in that one is in recovery forever but never fully recovered.
For many, bulimics can be hard to spot. Some bulimics gain weight, even with lots of purging. But some don't. And some eating disorder experts now consider folks who compulsively overeat but do not purge to also be bulimics, bulimics who don't purge. Some bulimics appear normal size but they maintain that appearance of normality through purging, which is wicked hard on the body. Your spleen, liver, pancreas, etc. all become like sieves and spongey if you are putting a whole box of laxatives through your body every day. Other bulimics make themselves vomit and all the vomiting destroys their teeth: the stomach acids are wicked hard on tooth enamel.
So do I have an eating disorder? I don't think so. I believe prescription drugs have destroyed my metabolism, which caused rapid weight gain in my early thirties. Once a human body develops lots fat cells, our evolutionary biology is designed to hang onto the fat for survival, which is why folks lose and, so often, easily regain.
I very genuinely do not believe I have an eating disorder. Maybe I am in denial. Denial is tricky. I believe I have a damaged metabolism. Three of prescription drugs I took daily for over ten years have had class actions won against them for causing the onset of diabetes and this happens because the drugs affect our metabolism. And recently, I have seen ads on my gmail mailbox informing me that Lipitor is being sued in class action because it is now believed to cause the onset of diabetes in some women. I don't think I fit that criteria because the women who develop diabetes on Lipitor tend to be slender. I did take three drugs for over ten years that have also been been sued by class action and the petitioners won, proving the drugs damage metabolism and seem to contribute significantly to the onset of diabetes.
Can such damage be healed? And if so, how? Not more drugs, that's for sure. And not the typical highly processed American crap diet.
I don't think about the damage prescription drugs have done to me too much. It's hard to know where who I am, how and what I ate and how drugs I took for over ten years affected my body. My metabolism is definitely very damaged.
On the bright side, I am down 90 pounds from my all time high. I haven't been at my all time high in many years but my set point seems to still be a pretty high one, a fat one. I can get down much lower than where I am now but I quickly bounce back to my set point.
So. I am way down but still fat. And I would like to move through the world as a not-fat person. I've been obese about 30 years. I've always thought I'd lose it. I have lost a lot but I can't seem to get to onederland, which is below 200.
And being fat is, by no means, my only issue. I am lonely, with poor support in my life. I am so unhappy. I long for a life partner but I am not really fit to be someone's life partner. I don't see how a person can be happy and well if they are as isolated as I am. I am so vulnerable these days that I am not really fit to form close bonds with anyone.
I know many people find support at support groups. And the world is full of them. Which ones are aright for me? And when I am as vulnerable as I am just now, going to any event with other people around is overwhelming. I keep thinking if I just had a couple best friends, like I always used to have. But I am too shakey to develop new friends.
I read somewhere, once, that someone with borderline personality disorder is a bit like someone with no skin. That makes me think of a burn victim, also someone without skin. When I am emotionally unwell, I have no skin and I am unfit to be around others but i can't get well in isolation. Chicken. Egg.
I feel like I am the emotional equivalent of a quadriplegic -- not to downplay the serious nature of being a quad. I feel I can't control anything in my life so I hunker down in my home like I'm in a bunker, holding on to just survive. Just surviving is not enough. I don't feel I am living a life worth living. But who wants to befriend someone in excrutiating emotional pain.
I just remembered an exchange I had about 8 years ago with someone i met at a conference. I wrote to him that I felt excrutiating pain and he wrote back in what I am sure was unintended condescension telling me something like "Tut tut, I am sure excrutiating it an exaggeration." I think he felt uneasy imaging me in excrutiating pain so he just tried to erase my truth, like he was editing a paper only I had shared my truth. I am often in excrutiating emotional pain. It is very hard to love someone in the kind of pain I get into. But I am lovable. And with understanding and caring and love, I can, do and have formed some rich, loving, lasting friendships. Just not lately. No new hones. I have peopple who love me but they mostly live far away. The few locals that 'love' me spend little, if any time with me and time with people is what I need.
Around and around I go. What to do?
Have you ever done a major housecleaning project and as you work on the project, everything reaches a point of chaos and it is easy to feel overwhelmed? But you know if you just keep going, doing one thing at a time, order will be restored? I feel like my emotional and social lives are in a damaged, chaotic state but at any moment, things could improve. And in the meantime, I can eat carefully, exercise and maintain my physical health as best I can.
Maintaining my emotional health seems impossible when I am as isolated as I am but going to groups is just beyond my capacity. So I sit. Which reminds me of a lovely verse by the farmer-poet-essayist Wendall Barry:
willing to die'
you give up your will'
be still
until'
moved by what moves all else'
you move
I am being still, waiting to be moved. It's hard work.
At a ten day silent retreat once, on the final day when they let you talk, a bulimic living with her parents had taken the retreat just to get away form food cause she couldn't afford any medical treatment (altho if so sick she could not work, and she was, she was likely eligible to be disabled and get on Medicaid and even Medicare . . . another story). I told her I was pretty sure I knew within just a week or two when my daughter's eating disorder got serious. The young woman panicked, wondering if her parents 'knew'. She pressed and pressed me to tell her how I 'knew'.
I told her I did not see how a parent living with a child could not know. Either you see your child is losing weight rapidly or you notice massive amounts of food disapearing. You don't bring in groceries into your own home, and then see they have disappeared and not notice, IF you are living consciously. I suggested that maybe her parents didn't know but that could only be because they were in denial. The poor gal pressed and pressed me to tell me exactly what I noticed. She was so panicked to think her parents might know.
I don't see how someone could live with their child, even an adult college grad child, and not notice if mass quantities of food disappeared from the kitchen overnight most nights. That young woman was positive her parents didn't know. I said "If they don't know, they don't want to know. It's called denial." Poor thing. She couldn't wait to get home and look for signs indicating whether her parents 'knew'.
Some think anorexia-bulimia are different disorders but many medical experts see it as the same disorder, at different ends of the spectrum. Food addicts likely fit into the spectrum. Many bulimics are fat, many are not. When my daughter stops starving, she invariably slides into binge eating, unless, I imagine, she is in recovery programs and taking very good care of herself. And I sure hope she is, of course. Once she shared an apartment with a non-lover guy (the guy was gay) and she would often eat every bite of food in the house, even things that are unpalatable, like a jar of relish. Then she ate a box of laxatives. When my daughter got into better treatment programs -- the quality of eating disorder treatment ranges greatly, as in most things -- she was told that eating laxatives as she did turned some of her organs into messy sponges, causing permanent damage from the harsh chemicals in the laxatives. Knowledgeable docs could exam her for two minutes and know she was binge-purging. Her roommate would be so angry. He'd get up for breakfast and there was no food in the house. He was abusive to her, apart from issues of her binging on his food. Several years ago, he contacted me on this blog asking how to get in touch with her. He said he was in recovery and wished to make amends to her. I was glad to hear it but I could not tell him how to contact her. Now I know where she works. I think he found her anyway.
Eating disorders are like alcoholism in that one is in recovery forever but never fully recovered.
For many, bulimics can be hard to spot. Some bulimics gain weight, even with lots of purging. But some don't. And some eating disorder experts now consider folks who compulsively overeat but do not purge to also be bulimics, bulimics who don't purge. Some bulimics appear normal size but they maintain that appearance of normality through purging, which is wicked hard on the body. Your spleen, liver, pancreas, etc. all become like sieves and spongey if you are putting a whole box of laxatives through your body every day. Other bulimics make themselves vomit and all the vomiting destroys their teeth: the stomach acids are wicked hard on tooth enamel.
So do I have an eating disorder? I don't think so. I believe prescription drugs have destroyed my metabolism, which caused rapid weight gain in my early thirties. Once a human body develops lots fat cells, our evolutionary biology is designed to hang onto the fat for survival, which is why folks lose and, so often, easily regain.
I very genuinely do not believe I have an eating disorder. Maybe I am in denial. Denial is tricky. I believe I have a damaged metabolism. Three of prescription drugs I took daily for over ten years have had class actions won against them for causing the onset of diabetes and this happens because the drugs affect our metabolism. And recently, I have seen ads on my gmail mailbox informing me that Lipitor is being sued in class action because it is now believed to cause the onset of diabetes in some women. I don't think I fit that criteria because the women who develop diabetes on Lipitor tend to be slender. I did take three drugs for over ten years that have also been been sued by class action and the petitioners won, proving the drugs damage metabolism and seem to contribute significantly to the onset of diabetes.
Can such damage be healed? And if so, how? Not more drugs, that's for sure. And not the typical highly processed American crap diet.
I don't think about the damage prescription drugs have done to me too much. It's hard to know where who I am, how and what I ate and how drugs I took for over ten years affected my body. My metabolism is definitely very damaged.
On the bright side, I am down 90 pounds from my all time high. I haven't been at my all time high in many years but my set point seems to still be a pretty high one, a fat one. I can get down much lower than where I am now but I quickly bounce back to my set point.
So. I am way down but still fat. And I would like to move through the world as a not-fat person. I've been obese about 30 years. I've always thought I'd lose it. I have lost a lot but I can't seem to get to onederland, which is below 200.
And being fat is, by no means, my only issue. I am lonely, with poor support in my life. I am so unhappy. I long for a life partner but I am not really fit to be someone's life partner. I don't see how a person can be happy and well if they are as isolated as I am. I am so vulnerable these days that I am not really fit to form close bonds with anyone.
I know many people find support at support groups. And the world is full of them. Which ones are aright for me? And when I am as vulnerable as I am just now, going to any event with other people around is overwhelming. I keep thinking if I just had a couple best friends, like I always used to have. But I am too shakey to develop new friends.
I read somewhere, once, that someone with borderline personality disorder is a bit like someone with no skin. That makes me think of a burn victim, also someone without skin. When I am emotionally unwell, I have no skin and I am unfit to be around others but i can't get well in isolation. Chicken. Egg.
I feel like I am the emotional equivalent of a quadriplegic -- not to downplay the serious nature of being a quad. I feel I can't control anything in my life so I hunker down in my home like I'm in a bunker, holding on to just survive. Just surviving is not enough. I don't feel I am living a life worth living. But who wants to befriend someone in excrutiating emotional pain.
I just remembered an exchange I had about 8 years ago with someone i met at a conference. I wrote to him that I felt excrutiating pain and he wrote back in what I am sure was unintended condescension telling me something like "Tut tut, I am sure excrutiating it an exaggeration." I think he felt uneasy imaging me in excrutiating pain so he just tried to erase my truth, like he was editing a paper only I had shared my truth. I am often in excrutiating emotional pain. It is very hard to love someone in the kind of pain I get into. But I am lovable. And with understanding and caring and love, I can, do and have formed some rich, loving, lasting friendships. Just not lately. No new hones. I have peopple who love me but they mostly live far away. The few locals that 'love' me spend little, if any time with me and time with people is what I need.
Around and around I go. What to do?
Have you ever done a major housecleaning project and as you work on the project, everything reaches a point of chaos and it is easy to feel overwhelmed? But you know if you just keep going, doing one thing at a time, order will be restored? I feel like my emotional and social lives are in a damaged, chaotic state but at any moment, things could improve. And in the meantime, I can eat carefully, exercise and maintain my physical health as best I can.
Maintaining my emotional health seems impossible when I am as isolated as I am but going to groups is just beyond my capacity. So I sit. Which reminds me of a lovely verse by the farmer-poet-essayist Wendall Barry:
willing to die'
you give up your will'
be still
until'
moved by what moves all else'
you move
I am being still, waiting to be moved. It's hard work.
Sunday, November 17, 2013
We--tell a Hurt--to cool it, by Emily Dickinson
The Black Berry—wears a Thorn in his side—
But no Man heard Him cry—
He offers His Berry, just the same
To Partridge—and to Boy—
He sometimes holds upon the Fence—
Or struggles to a Tree—
Or clasps a Rock, with both His Hands—
But not for Sympathy—
We—tell a Hurt—to cool it—
This Mourner—to the Sky
A little further reaches—instead—
Brave Black Berry—
©I am not a poetry scholar, altho lately I have been thinking I might be a poet. I am making some serious poetry attempts. Not necessarily serious poems, either by tone or talent, just serious in my effort.
And I am not a literary critic or analyst.
But I love this poem and I esp. love my interpretation of it. I believe Dickinson uses the blackberry as a metaphor for how fragile we humans are. The blackberry surrounds itself with thorns, is prickly in order to be able to grow. Without prickly brambles, birds and other animals would make off with all the blackberrires. It's perfectly okay for animals to eat blackberries. Food is not on earth just for humans.
I think the central line, and theme, of this poem is "We-tell a Hurt-to cool it". She beautifully descrbes how blackberries make their way but in doing so, she also describes how tender humans, surrounded by prickles of protection, make their way. And sometimes, when hurt, we have to tell our hurts to cool them.
Brave Black Berry. Brave humans for taking chances to love, to seek to be loved, brambles gnarl our path. Pricks can hurt us. And, being human, we can voice our hurt and lessen it. We tell a hurt to cool it.
But no Man heard Him cry—
He offers His Berry, just the same
To Partridge—and to Boy—
He sometimes holds upon the Fence—
Or struggles to a Tree—
Or clasps a Rock, with both His Hands—
But not for Sympathy—
We—tell a Hurt—to cool it—
This Mourner—to the Sky
A little further reaches—instead—
Brave Black Berry—
©I am not a poetry scholar, altho lately I have been thinking I might be a poet. I am making some serious poetry attempts. Not necessarily serious poems, either by tone or talent, just serious in my effort.
And I am not a literary critic or analyst.
But I love this poem and I esp. love my interpretation of it. I believe Dickinson uses the blackberry as a metaphor for how fragile we humans are. The blackberry surrounds itself with thorns, is prickly in order to be able to grow. Without prickly brambles, birds and other animals would make off with all the blackberrires. It's perfectly okay for animals to eat blackberries. Food is not on earth just for humans.
I think the central line, and theme, of this poem is "We-tell a Hurt-to cool it". She beautifully descrbes how blackberries make their way but in doing so, she also describes how tender humans, surrounded by prickles of protection, make their way. And sometimes, when hurt, we have to tell our hurts to cool them.
Brave Black Berry. Brave humans for taking chances to love, to seek to be loved, brambles gnarl our path. Pricks can hurt us. And, being human, we can voice our hurt and lessen it. We tell a hurt to cool it.
Saturday, November 09, 2013
Cheryl's rose quartz ball: feeding her heart
©My now-deceased friend Cheryl got $100 for Xmas. She knew right away what she wanted to buy: a ball of rose-quartz. She had just visited Lynn, then my business partner. Lynn owned many crystals. One was a very large rose quartz ball, perhaps 6-7 inches in diameter. It was big. Cheryl had slept with it during a visit to Lynn's when Lynn still lived in Balltimore. In fact, on my next visit, I insisted on sleeping with that same rose quartz. Lynn tried to talk me out of it. I only realized tonight, as I considered writing this post about Cheryl's rose quartz shopping trip, that Lynn had not really wanted me to sleep with her rose quartz ball. I insisted. Lynn said "it is cold too sleep with it, you won't like it" and I said "Nonsense, I will warm it up." And I did warm it up. I think Lynn did not want my energy sleeping with her rose quartz. I missed that cue and insisted on sleeping with it because Cheryl had spoken of how much she had loved sleeping with it. Why Cheryl and not me?
It was cold sleeping with it, but only at first. It warmed up. I never felt any special energy with it. Lynn was, and I am sure still is, a very powerful woman. She probably put a block on the rose quartz for me! Cheryl spoke of the great dreams she had, the powerful energy she had felt sleeping with that big rose quartz ball. For me, nothing.
Just after Christmas, Cheryl asked if I would be willing to drive her to the rock shop in my car. This involved taking her non-motorized wheelchair, with me collapsing it, putting it into the car, taking it out and then lifting Cheryl into it. Work, but work I was happy to do.
To go in her motorized wheelchair, she needed her gigantic delivery van with a ramp. And the only van with with a ramp for her 300 pound electric wheelchair was her van, which meant she would have to drive. The only place to lock down her wheelchair in her van was at the driver's position, which had a tiny steering wheel with a doorknob-like handle on it to facilitate steering. Cheryl had very short arms and she could not manipulate a regular size steering wheel so part of the customizing of her gigantic van involved putting in a tiny steering wheel and then making the gas and breaks accessible near that steering wheel, accessible to her very short arms. Cheryl had explained to me that sometimes she liked to go out in a regular car like regular people.
Cheryl, now deceased, was a deformed dwarf with an extremely rare genetic disorder. The deformity was not merely being a dwarf. She had a regular human's sized head, her arms and legs were too short for her small body. On her tiny body, her head loomed large and many saw her as a freak. Cheryl could have been in those old, gruesome circus freak shows. She was very strange looking and lived life in a 300 pound wheelchair. Between her different appearance and the wheelchair, she was isolated from what she imagined was regular people, from ordinary living. She had mostly friends who were also very disabled. I got to know most of her disabled friends. Most of them came to our intensives over time. Quads, paraplegics, lots of cerebral palsies. I learned that all of them longed for social connections with normal people but they rarely achieved such connections. Coming to our intensives, during which participants tended to form deep bonds and then continue in the ongoing weekly community gatherings we held year round, allowed Cheryl's disabled crowd to form some close friendships with people living in normal bodies. Cheryl and her private care attendant eventually became my main babysitter. I sometimes wonder what my daughter thinks of that time in her life, from age five to seven or eight when her main babysitter was a deformed dwarf and a young man with mild cerebral palsy. On her own, Cheryl could not babysit because if something had happened to Rosie, Cheryl could not pick her up or tend to a cut. But Tim could.
Her arms were so short that she could not reach anything so she could not reach into the fridge to get a soda. She could not reach a stove to prepare meals. She had a 24/7 365 private care attendant. She could not get in and out of bed on her own. Or in and out of the bathroom on her own. I believe the unmatched head and limbs were related to her genetic disorder, which was Morquio's Syndrome. The average lifespan for someone with Morquio's Syndrome is 18 years. Cheryl died when she was 32. With Morquio's Syndrome, the bones in the body very slowly deteriorate, sorta melting away.
Cheryl had multiple spinal fusions in her life because the bone around the spinal cord protects the entire nervous system. People with Morquio's Syndrome usually die when their spinal cord has disintegrated and their spinal cord collapses and the person becomes completely paralyzed. Our spinal cords are fragile, delicate and integral to life.
I drove Cheryl's van a few times. We could put in a regular driver's seat. If Cheryl was on any outing in the van, she had to drive because the only spot for her 300 pound chair was at the driver seat.
For some reason, she asked me to take her out 'like a normal person' in my car. This meant more work for me. I had to lift the regular wheel chair in and out of the car and it was not light. And I had to lift Cheryl in and out of the car. She was not light. Having lived a sedentary life, she was very heavy. It's not like she could exercise. She looked like the size of a young child but she weighed over 100 pounds. A lot for me to lift. I dropped her getting her out of the car at the rock shop. She was very nice about it, especially considering that it was late December in Minnesota. I dropped her onto ice and snow. She said as long as I didn't mind her weight, she didn't mind getting plopped in the slushy snow. I felt bad but not for long. Cheryl was too happy to be out on what she called a normal friend outing, in a car, not in her gigantic van.
Nowadays, minivans can be retrofitted to accommodate electric wheelchairs but Cheryl had gotten a retrofitted, jumbo delivery van before the dawn of minivans. Voc rehab would give disabled folks in wheelchairs retrofitted vans so they could work. Lots of folks told voc rehab they wanted to work, got the vans and then stopped working because all they had really wanted was the van. I imagine scoring a retrofitted van from voc rehab is a lot harder nowadays.
Anyway. I could say more about that van, and esp. the surreal experience of navigating a gigantic van with super-hyper-power-steering from a five inch steering wheel. The wheel was so small I had to use the doorknob-like stub on it, too, because the span was too small for me to use as a steering wheel, too small for me to turn it without the knob. The knob was for Cheryl, because her very short arms could not turn the tiny, five-inch steering wheel without the knob. The gas and brake pedals were hand-operated, right next to the tiny steering wheel. Surprisingly, I got used to the weird driving set up quickly. All cars should have such sharp, easy steering.
We got into the crystal store. Cheryl knew exactly what she wanted. If the store had any rose quartz ball for $100 or less, she was going to buy it. It had one, one that was about three inches, maybe 3.5 inches, in diameter. It was actually perfect for Cheryl since she was very small. It was about as big, proportionally, to her, as Lynn's big ball was to Lynn. Lynn's rose quartz ball was about six inches in diameter. And that was, ultimately, what Cheryl wanted, to be like Lynn.
That's all we did. I picked her up, loaded, unloaded, loaded, unloaded. The wheelchair was hard to unload and load. Cheryl was hard to unload and unload. Cheryl's joy at being in my shitty old car -- I think I still had the Geo Metro at that point and it was on its last legs, chugging just barely -- and being out in the world like, as she kept saying, a real person, and spending her $100 Xmas gift from her parents on something they strongly disapproved of was worth the slight burdens.
Cheryl squealed delightedly as she told me her parents would be appalled to learn what she had spent their $100 Christmas gift on. This added, I think, to the joy of owning a rose quartz ball.
I can hear Cheryl laughing, smirking, giggling about how she had told her mother she was going to spend the money on a rose quartz ball. Her mother was upset, said it was a waste of money to buy something Cheryl didn't need. What was she supposed to do? Be practical with a present?
She was being practical, I told her. She was feeding her heart.
It was cold sleeping with it, but only at first. It warmed up. I never felt any special energy with it. Lynn was, and I am sure still is, a very powerful woman. She probably put a block on the rose quartz for me! Cheryl spoke of the great dreams she had, the powerful energy she had felt sleeping with that big rose quartz ball. For me, nothing.
Just after Christmas, Cheryl asked if I would be willing to drive her to the rock shop in my car. This involved taking her non-motorized wheelchair, with me collapsing it, putting it into the car, taking it out and then lifting Cheryl into it. Work, but work I was happy to do.
To go in her motorized wheelchair, she needed her gigantic delivery van with a ramp. And the only van with with a ramp for her 300 pound electric wheelchair was her van, which meant she would have to drive. The only place to lock down her wheelchair in her van was at the driver's position, which had a tiny steering wheel with a doorknob-like handle on it to facilitate steering. Cheryl had very short arms and she could not manipulate a regular size steering wheel so part of the customizing of her gigantic van involved putting in a tiny steering wheel and then making the gas and breaks accessible near that steering wheel, accessible to her very short arms. Cheryl had explained to me that sometimes she liked to go out in a regular car like regular people.
Cheryl, now deceased, was a deformed dwarf with an extremely rare genetic disorder. The deformity was not merely being a dwarf. She had a regular human's sized head, her arms and legs were too short for her small body. On her tiny body, her head loomed large and many saw her as a freak. Cheryl could have been in those old, gruesome circus freak shows. She was very strange looking and lived life in a 300 pound wheelchair. Between her different appearance and the wheelchair, she was isolated from what she imagined was regular people, from ordinary living. She had mostly friends who were also very disabled. I got to know most of her disabled friends. Most of them came to our intensives over time. Quads, paraplegics, lots of cerebral palsies. I learned that all of them longed for social connections with normal people but they rarely achieved such connections. Coming to our intensives, during which participants tended to form deep bonds and then continue in the ongoing weekly community gatherings we held year round, allowed Cheryl's disabled crowd to form some close friendships with people living in normal bodies. Cheryl and her private care attendant eventually became my main babysitter. I sometimes wonder what my daughter thinks of that time in her life, from age five to seven or eight when her main babysitter was a deformed dwarf and a young man with mild cerebral palsy. On her own, Cheryl could not babysit because if something had happened to Rosie, Cheryl could not pick her up or tend to a cut. But Tim could.
Her arms were so short that she could not reach anything so she could not reach into the fridge to get a soda. She could not reach a stove to prepare meals. She had a 24/7 365 private care attendant. She could not get in and out of bed on her own. Or in and out of the bathroom on her own. I believe the unmatched head and limbs were related to her genetic disorder, which was Morquio's Syndrome. The average lifespan for someone with Morquio's Syndrome is 18 years. Cheryl died when she was 32. With Morquio's Syndrome, the bones in the body very slowly deteriorate, sorta melting away.
Cheryl had multiple spinal fusions in her life because the bone around the spinal cord protects the entire nervous system. People with Morquio's Syndrome usually die when their spinal cord has disintegrated and their spinal cord collapses and the person becomes completely paralyzed. Our spinal cords are fragile, delicate and integral to life.
I drove Cheryl's van a few times. We could put in a regular driver's seat. If Cheryl was on any outing in the van, she had to drive because the only spot for her 300 pound chair was at the driver seat.
For some reason, she asked me to take her out 'like a normal person' in my car. This meant more work for me. I had to lift the regular wheel chair in and out of the car and it was not light. And I had to lift Cheryl in and out of the car. She was not light. Having lived a sedentary life, she was very heavy. It's not like she could exercise. She looked like the size of a young child but she weighed over 100 pounds. A lot for me to lift. I dropped her getting her out of the car at the rock shop. She was very nice about it, especially considering that it was late December in Minnesota. I dropped her onto ice and snow. She said as long as I didn't mind her weight, she didn't mind getting plopped in the slushy snow. I felt bad but not for long. Cheryl was too happy to be out on what she called a normal friend outing, in a car, not in her gigantic van.
Nowadays, minivans can be retrofitted to accommodate electric wheelchairs but Cheryl had gotten a retrofitted, jumbo delivery van before the dawn of minivans. Voc rehab would give disabled folks in wheelchairs retrofitted vans so they could work. Lots of folks told voc rehab they wanted to work, got the vans and then stopped working because all they had really wanted was the van. I imagine scoring a retrofitted van from voc rehab is a lot harder nowadays.
Anyway. I could say more about that van, and esp. the surreal experience of navigating a gigantic van with super-hyper-power-steering from a five inch steering wheel. The wheel was so small I had to use the doorknob-like stub on it, too, because the span was too small for me to use as a steering wheel, too small for me to turn it without the knob. The knob was for Cheryl, because her very short arms could not turn the tiny, five-inch steering wheel without the knob. The gas and brake pedals were hand-operated, right next to the tiny steering wheel. Surprisingly, I got used to the weird driving set up quickly. All cars should have such sharp, easy steering.
We got into the crystal store. Cheryl knew exactly what she wanted. If the store had any rose quartz ball for $100 or less, she was going to buy it. It had one, one that was about three inches, maybe 3.5 inches, in diameter. It was actually perfect for Cheryl since she was very small. It was about as big, proportionally, to her, as Lynn's big ball was to Lynn. Lynn's rose quartz ball was about six inches in diameter. And that was, ultimately, what Cheryl wanted, to be like Lynn.
That's all we did. I picked her up, loaded, unloaded, loaded, unloaded. The wheelchair was hard to unload and load. Cheryl was hard to unload and unload. Cheryl's joy at being in my shitty old car -- I think I still had the Geo Metro at that point and it was on its last legs, chugging just barely -- and being out in the world like, as she kept saying, a real person, and spending her $100 Xmas gift from her parents on something they strongly disapproved of was worth the slight burdens.
Cheryl squealed delightedly as she told me her parents would be appalled to learn what she had spent their $100 Christmas gift on. This added, I think, to the joy of owning a rose quartz ball.
I can hear Cheryl laughing, smirking, giggling about how she had told her mother she was going to spend the money on a rose quartz ball. Her mother was upset, said it was a waste of money to buy something Cheryl didn't need. What was she supposed to do? Be practical with a present?
She was being practical, I told her. She was feeding her heart.
I get to want what I want: purple flourite is not rose quartz
©Katie and I often hung out in a crystal shop. It surprises me that I don't see many crystal stores here in hippie-dippie N. California. There is a shop on Telegraph, a dingy shop that is uninviting, sells only small bits of crystals. I have not seen a good "old-fashioned" crystal/rock shop in the Bay Area. A crystal is not something I would easily buy online. I respond with deep visceral responses to stones; that's how I know when I have to buy one. Or should buy one.
I guess a couple of the street vendors on Telegraph sell rocks but, again, it's mostly small ones.
This crystal shop Katie and I used to go to was on University in Avenue, just across the freeway from Minneapolis, near where the Minnesota Women's Press had its offices.
This shop I remember sold smaller crystals but not teeny bits of things. Who wants a chip of rose quartz? Everyone wants, at least, a piece big enough to fold inside one's hand and be unseen, right? That's pretty small. Little bits of stone are boring. Still, if it is all you can afford, go for it.
This rock shop played New Age music, had each crystal displayed reverently as if it was an art gallery and not a rock shop. And it separated the kinds of stones.
One year, post-Thanksgiving, Katie and I stopped in to browse. We almost never bought anything. People used to give ue crystals. No one gives me crystals today. Gee, I wish someone would. I love receiving crystals.
My former business partner, Lynn, once gave me a tiny, very faintly pink piece of rose quartz. She said she saw an angel in the stone. And so did Katie and I. I wonder what happened with that one. Katie took some stones with her to college. Maybe she took that one. It is not one I would have readily released. Altho at one point, just before I turned fifty and I was going to kill myself before I turned fifty, I sent Katie a lot of stuff, reasoning there was no one near where I lived that would send my things to my child. So I tried to send her anything of value. I was deadly serious and my use of the word deadly is not intended as a pun; it is intended to indicate that I was, quite literally, deadly determined to end my life.
I guess I may have sent some crystals to Katie then. And I also remember giving away some of my bigger ones to the Spirited Work silent auctions. Our former friend Joni had given me a big hunk of brown flourite for Xmas one year. Joni, unable to resist bargains, had found a stash of big hunks of brown-hued glourite for sale and bought them all. So everyone she loved got a hunk of flourite.
I never liked that flourite, altho I felt guilty that I did not like it. I think its provenance had something to do with my dislike. If Joni had bought me any crystal because she felt called to buy it for me, I would have treasured it and likely still have it. But she bought a stack of bargain stones. Boring.
Anyway, one year in the lead-up to Xmas, Katie and I were in a great crystal store in St. Paul. We knew all the clerks and the owner because we liked to hang out. It was run by childless lesbians who always seemed to love Katie. With Christmas in the air, Katie lingered, as she always did, over the many large, inviting pieces of rose quartz. I was in another section, drawn to some other stone. I don't remember which stone I was drawn to, only that I was not feeling the rose quartz.
Besides, we had a huge hunk of rose quartz, a really big one. And a bunch of little ones. And Lynn's tiny one with the angel in it. I was not feeling rose quartz that day.
Katie said "I know, Mom, I will buy you some rose quartz for your Xmas present."
I said "I don't want rose quartz. I want some of this." I want to say I wanted rhodochrosite cause that stone is really hot for me but I don't think I ever saw any rhodochrosite in that rock sthop. Rhodochrosite is somewhat rare in USA rock shops. I ask every time I pass one and if a shop has any, it's little bitty bits. So, altho this is kinda boring, I think I told Katie that day that if she got me a crystal for Xmas, I hoped it would be amythyst. Boring, I know. I don't really remember which stone I said I was gravitating towards. I only remember not feeling the rose quartz that Katie was gushing over. Her offer to give it to me was loving and joyful.
She said "But I want to buy some rose quartz.!!!" kinda in a whine. Plaintive, y'know?
I said "You can give me rose quartz if you want to and if you do, I will treasure it because it came from you but, Katie, my love, I get to want what I want. You can give me what you want but if you want to give me what I want, you will give me some of this."
I remember now. It was a cubist chunk of purple flourite. It was not amethyst. It was purple flourite. She did end up buying it for me. I wonder what happened to it? It's lone gone.
Then the shop clerk said "Excuse me, I hope it doesn't seem like I am eavesdropping but the store is small and I can't help but hear you. I always enjoy listening to you and you daughter. You are so good with her. What you just said, telling her she could buy you what she wanted but that you get to want what you want was brilliant."
I was flattered.
Then the sale person said "If you ever need a babysitter, I'd love to babysit for you. For free. You and your kid seem to cool. I'd like to spend time with your daughter."
I guess I did not welcome her offer, although I remember internally feeling grateful and internally I was already thinking of when I might use her offer. She did not give me a phone number or her name so I think I concluded her offer was not fully genuine, that she was just having fun hanging out with us.
I guess a couple of the street vendors on Telegraph sell rocks but, again, it's mostly small ones.
This crystal shop Katie and I used to go to was on University in Avenue, just across the freeway from Minneapolis, near where the Minnesota Women's Press had its offices.
This shop I remember sold smaller crystals but not teeny bits of things. Who wants a chip of rose quartz? Everyone wants, at least, a piece big enough to fold inside one's hand and be unseen, right? That's pretty small. Little bits of stone are boring. Still, if it is all you can afford, go for it.
This rock shop played New Age music, had each crystal displayed reverently as if it was an art gallery and not a rock shop. And it separated the kinds of stones.
One year, post-Thanksgiving, Katie and I stopped in to browse. We almost never bought anything. People used to give ue crystals. No one gives me crystals today. Gee, I wish someone would. I love receiving crystals.
My former business partner, Lynn, once gave me a tiny, very faintly pink piece of rose quartz. She said she saw an angel in the stone. And so did Katie and I. I wonder what happened with that one. Katie took some stones with her to college. Maybe she took that one. It is not one I would have readily released. Altho at one point, just before I turned fifty and I was going to kill myself before I turned fifty, I sent Katie a lot of stuff, reasoning there was no one near where I lived that would send my things to my child. So I tried to send her anything of value. I was deadly serious and my use of the word deadly is not intended as a pun; it is intended to indicate that I was, quite literally, deadly determined to end my life.
I guess I may have sent some crystals to Katie then. And I also remember giving away some of my bigger ones to the Spirited Work silent auctions. Our former friend Joni had given me a big hunk of brown flourite for Xmas one year. Joni, unable to resist bargains, had found a stash of big hunks of brown-hued glourite for sale and bought them all. So everyone she loved got a hunk of flourite.
I never liked that flourite, altho I felt guilty that I did not like it. I think its provenance had something to do with my dislike. If Joni had bought me any crystal because she felt called to buy it for me, I would have treasured it and likely still have it. But she bought a stack of bargain stones. Boring.
Anyway, one year in the lead-up to Xmas, Katie and I were in a great crystal store in St. Paul. We knew all the clerks and the owner because we liked to hang out. It was run by childless lesbians who always seemed to love Katie. With Christmas in the air, Katie lingered, as she always did, over the many large, inviting pieces of rose quartz. I was in another section, drawn to some other stone. I don't remember which stone I was drawn to, only that I was not feeling the rose quartz.
Besides, we had a huge hunk of rose quartz, a really big one. And a bunch of little ones. And Lynn's tiny one with the angel in it. I was not feeling rose quartz that day.
Katie said "I know, Mom, I will buy you some rose quartz for your Xmas present."
I said "I don't want rose quartz. I want some of this." I want to say I wanted rhodochrosite cause that stone is really hot for me but I don't think I ever saw any rhodochrosite in that rock sthop. Rhodochrosite is somewhat rare in USA rock shops. I ask every time I pass one and if a shop has any, it's little bitty bits. So, altho this is kinda boring, I think I told Katie that day that if she got me a crystal for Xmas, I hoped it would be amythyst. Boring, I know. I don't really remember which stone I said I was gravitating towards. I only remember not feeling the rose quartz that Katie was gushing over. Her offer to give it to me was loving and joyful.
She said "But I want to buy some rose quartz.!!!" kinda in a whine. Plaintive, y'know?
I said "You can give me rose quartz if you want to and if you do, I will treasure it because it came from you but, Katie, my love, I get to want what I want. You can give me what you want but if you want to give me what I want, you will give me some of this."
I remember now. It was a cubist chunk of purple flourite. It was not amethyst. It was purple flourite. She did end up buying it for me. I wonder what happened to it? It's lone gone.
Then the shop clerk said "Excuse me, I hope it doesn't seem like I am eavesdropping but the store is small and I can't help but hear you. I always enjoy listening to you and you daughter. You are so good with her. What you just said, telling her she could buy you what she wanted but that you get to want what you want was brilliant."
I was flattered.
Then the sale person said "If you ever need a babysitter, I'd love to babysit for you. For free. You and your kid seem to cool. I'd like to spend time with your daughter."
I guess I did not welcome her offer, although I remember internally feeling grateful and internally I was already thinking of when I might use her offer. She did not give me a phone number or her name so I think I concluded her offer was not fully genuine, that she was just having fun hanging out with us.
