I had a brain MRI on the 26th. No sign of MS though there were a few other signs of it being an almost 70 yr old brain. I'm getting appointments and sharing records to start doing what needs to be done for the chelating (flushing heavy metals from the body). So much for business.
I'm home, have the girls for the long weekend. It feels gooood to be home! It's a little overwhelming as, even with my improvements, there is a lot to be done that I'm not capable of. I've perhaps been doing too much walking without the walker; I'm feeling pretty sore, but hope it's just a sign of muscle growth. No great insight, but I'm clear and committed to doing each day what needs to be done to get better, even if I don't feel like it. Now is not the time for whining.
Sunday, December 30, 2018
Friday, December 21, 2018
There's Good news and Bad news (or What I Learned at my Canadian Christmas Camp)
I'm definitely getting better, that's clear. I can step up a 6" curb without pulling myself up with my hands. Each day this week I've been a little stronger. This morning I found I was able to walk less wide stance, move my hips a little as I walked. Though I may have some back sliding when I go home, I gather I should be able to retain most of this, Good News for sure!
The bad news is it appears I have metabolic toxicities from a variety of sources and the detoxifying process is complex, hazardous and possibly will require returning to British Columbia. I have contacted a naturapath in Madison that I hope will be able to continue the protocol that's helped me here.
Ahh but what I've learned being in Canada, there I can indulge. First, there's a subtle difference in the Canadian air, a little less PC, less wheelchair friendly doors, more actual Christmas carols and "Merry Christmas". There are many, many ethnic groups here, mostly of different Asian decent but all decidedly Canadian. It definitely gives a different feel. But mostly what I've learned has to do with how it feels having all my daily habits up for grabs for 3+ weeks. Here's my takeaway.
I've been completely off of caffein and sugar and big meals. I think I want to continue that with the occasional coffee or sweet but only as something out of the ordinary to notice and savor. I am way more hydrated now and realize that may be a major contributor to my improvement, and so I want to continue. I've been walking in the water every 2-3 days at a local pool. As some of you know I dislike going in the water and distain exercise for exercise sake as being like a gerbil in a cage.
Get over it Pipes, you almost lost the use of this body, daily maintenance of some sort is the least you can do. Maybe that's it. My inner bear is stepping up and saying enough whining about what you like, this is a time to not argue with yourself (I always lose!) about what you feel like, or how much it costs, or is it the right treatment (as if I can out figure the docs). This is the time to step up and decide if I want a body to use these next years, then just DO IT! Don't think about it, if you have good reason to trust that it's helpful, just do it and evaluate later.
I used to teach the kids that it took 24 times in a row to make a habit. I've had a few more than that this trip. I wonder after 6 months how strong my soul muscle will be, as well as my legs.
The bad news is it appears I have metabolic toxicities from a variety of sources and the detoxifying process is complex, hazardous and possibly will require returning to British Columbia. I have contacted a naturapath in Madison that I hope will be able to continue the protocol that's helped me here.
Ahh but what I've learned being in Canada, there I can indulge. First, there's a subtle difference in the Canadian air, a little less PC, less wheelchair friendly doors, more actual Christmas carols and "Merry Christmas". There are many, many ethnic groups here, mostly of different Asian decent but all decidedly Canadian. It definitely gives a different feel. But mostly what I've learned has to do with how it feels having all my daily habits up for grabs for 3+ weeks. Here's my takeaway.
I've been completely off of caffein and sugar and big meals. I think I want to continue that with the occasional coffee or sweet but only as something out of the ordinary to notice and savor. I am way more hydrated now and realize that may be a major contributor to my improvement, and so I want to continue. I've been walking in the water every 2-3 days at a local pool. As some of you know I dislike going in the water and distain exercise for exercise sake as being like a gerbil in a cage.
Get over it Pipes, you almost lost the use of this body, daily maintenance of some sort is the least you can do. Maybe that's it. My inner bear is stepping up and saying enough whining about what you like, this is a time to not argue with yourself (I always lose!) about what you feel like, or how much it costs, or is it the right treatment (as if I can out figure the docs). This is the time to step up and decide if I want a body to use these next years, then just DO IT! Don't think about it, if you have good reason to trust that it's helpful, just do it and evaluate later.
I used to teach the kids that it took 24 times in a row to make a habit. I've had a few more than that this trip. I wonder after 6 months how strong my soul muscle will be, as well as my legs.
Sunday, December 16, 2018
Reality is a Slippery Thing
I've been here 2 1/2 weeks, one more to go. So, how am I doing? I could bore you with details, but the upshot is, I don't really know. In some ways I'm worse than I was in Nov. in others....? Reality has so much to do with context and editing and perspective; it's hard to pin down.
Ok so I will bore you with details.
I've had increasing migrating joint pain and thigh muscle weakness since early Summer. Around the beginning of Nov. my joint pain started to fade but I continued with muscle pain especially thigh muscle weakness which made me increasingly unable to lift my feet and walk. By the end of Nov. when I came out here, I couldn't walk without the walker. That weakness was a little worse by the end of the first week here. In the last few days, I think, maybe, perhaps,
I might be getting slightly stronger.
This is where the slightly surreal perspective of this post emerges. Pain and even disability are so "now" so hard to put on that darn 10 pt scale the docs are always asking for. Mine has also been challenging to document because it goes up and down over a 1-2 week cycle as well as targeting different pain spots. I've been keeping a regular record but it's hard to really compare the sensations of even a few days before. I noted back in Nov. when I no longer was able to lift my foot over a curb without something to pull myself up with. I noticed a couple of weeks ago that I felt dangerous trying to shuffle the 30' to the front door of the clinic. I've been using the walker 100% since then. But today I tried walking some 40+ feet and it was a stronger, safer shuffle. I was able to pull myself up stairs foot over foot not the one step at a time that's been my last few weeks.
In the past, the shifts have been subtle; often they've been part of a cycle which continues a downward trend. The pains change characteristics and loci. I've felt lost in a jungle of sensation where perspective is both elusive and illusory. But my perspective or self talk about this morass is a powerful variable that I think it's time to use.
I'm going to try to harness the placebo effect, or denial, or hope or whatever psychological trick it may be to pull myself arm over arm out of this hole I'm in. Lord only knows I've thrown every intervention but the kitchen sink at it in these last weeks including sessions in a hyperbaric oxygen chamber, laser light treatment of my blood, very detailed food sensitivity testing and other IV antimicrobial and immune stimulating drugs. So now is the time to add my psychological magic sauce, find the strand of reality that reinforces the perception that I am getting stronger, and hold on to it with all my might. And it may, indeed, in time, prove Real.
Ok so I will bore you with details.
I've had increasing migrating joint pain and thigh muscle weakness since early Summer. Around the beginning of Nov. my joint pain started to fade but I continued with muscle pain especially thigh muscle weakness which made me increasingly unable to lift my feet and walk. By the end of Nov. when I came out here, I couldn't walk without the walker. That weakness was a little worse by the end of the first week here. In the last few days, I think, maybe, perhaps,
I might be getting slightly stronger.
This is where the slightly surreal perspective of this post emerges. Pain and even disability are so "now" so hard to put on that darn 10 pt scale the docs are always asking for. Mine has also been challenging to document because it goes up and down over a 1-2 week cycle as well as targeting different pain spots. I've been keeping a regular record but it's hard to really compare the sensations of even a few days before. I noted back in Nov. when I no longer was able to lift my foot over a curb without something to pull myself up with. I noticed a couple of weeks ago that I felt dangerous trying to shuffle the 30' to the front door of the clinic. I've been using the walker 100% since then. But today I tried walking some 40+ feet and it was a stronger, safer shuffle. I was able to pull myself up stairs foot over foot not the one step at a time that's been my last few weeks.
In the past, the shifts have been subtle; often they've been part of a cycle which continues a downward trend. The pains change characteristics and loci. I've felt lost in a jungle of sensation where perspective is both elusive and illusory. But my perspective or self talk about this morass is a powerful variable that I think it's time to use.
I'm going to try to harness the placebo effect, or denial, or hope or whatever psychological trick it may be to pull myself arm over arm out of this hole I'm in. Lord only knows I've thrown every intervention but the kitchen sink at it in these last weeks including sessions in a hyperbaric oxygen chamber, laser light treatment of my blood, very detailed food sensitivity testing and other IV antimicrobial and immune stimulating drugs. So now is the time to add my psychological magic sauce, find the strand of reality that reinforces the perception that I am getting stronger, and hold on to it with all my might. And it may, indeed, in time, prove Real.
Monday, December 10, 2018
Zero Gravity
I am sitting in a small room in Canada, noticing. It is, oddly, my only job these days. I'm here to try to reboot my life, change my patterns of eating, moving, breathing, sleeping. Hopefully the Lyme or other tick diseases I have will succumb to the barrage of different Naturopathic treatments I'm here for, but if not, I should still know a lot more about my body than I do now.
I'm halfway through my time here, with no noticeable improvement, in fact, with a slight continuation of my downward trend in ability to walk without the support of my walker. I feel occasional burps of despair but mostly live still snuggled in my cocoon of denial. The overriding background sensation of this time is being in zero gravity. I have none of what usually grounds me, home maintenance, responsibilities, relationships, little creative projects. Without those duties to my former self, I'm able to consider what my life would be like if I can no longer walk or carry things unassisted. I'll be having a brain MRI when I return to look at other serious disability contenders.
It's sort of like inviting a new member to my team of multiple personalities, one in stark contrast to the independent pioneer who has always been my front man.
I've been having dream conversations with a group of women about color and life style and how to avoid attracting bear with our female hormones. (though we hear a story of a woman giving birth in the wild without being attacked.)
During my travels out here, a man offered me help and then added that the women he'd met from WI (and Montana) were amazingly strong, and able to kick butt. Not sure why, but that seemed to be a blessing for this trip.
There's a photo of a bear on the wall in the little Arbnb room I spend so much time in. A totem for this new territory I'm in?
I'm halfway through my time here, with no noticeable improvement, in fact, with a slight continuation of my downward trend in ability to walk without the support of my walker. I feel occasional burps of despair but mostly live still snuggled in my cocoon of denial. The overriding background sensation of this time is being in zero gravity. I have none of what usually grounds me, home maintenance, responsibilities, relationships, little creative projects. Without those duties to my former self, I'm able to consider what my life would be like if I can no longer walk or carry things unassisted. I'll be having a brain MRI when I return to look at other serious disability contenders.
It's sort of like inviting a new member to my team of multiple personalities, one in stark contrast to the independent pioneer who has always been my front man.
I've been having dream conversations with a group of women about color and life style and how to avoid attracting bear with our female hormones. (though we hear a story of a woman giving birth in the wild without being attacked.)
During my travels out here, a man offered me help and then added that the women he'd met from WI (and Montana) were amazingly strong, and able to kick butt. Not sure why, but that seemed to be a blessing for this trip.
There's a photo of a bear on the wall in the little Arbnb room I spend so much time in. A totem for this new territory I'm in?
Monday, July 10, 2017
Finding my proper place in the natural order of things
My son would like me to move into town and thinks that my animals and garden are responsibilities that are tying me down. I found myself reflecting on why I feel a deep need to live in the country.
When I was in my 20's, living on a farm in rural Wisconsin, we had chickens who roamed around in the day but who needed to be shut up snug in their coop at night, lest varmints get them. Chickens have a deep homing urge as it becomes dusk, so all I'd have to do was wait 'til it was full dark and then shut their door. The chicken house was several hundred yards from the house down our dark driveway, and I noticed that I felt a little scared as I walked down the drive. Staying in the bright cone of a flashlight made it worse as it blinded me to, made me feel even more separate from, what was outside the light.
One time as I was walking down, I asked my self what was I scared of? I felt
"I'm scared of the wild things"
and then I heard a voice answer from the backroom of my mind,
"you are a wild thing too, with tools and mind instead of tooth and claw. You are a wild thing amongst wild things."
It hit me like a bolt of lightening. I turned off the flashlight. And walked the rest of the way feeling how I was one more natural force, in some ways stronger in others weaker, just one more wild thing amongst wild things. I have never been afraid of the dark since. In fact, I prefer walking in the dark; I feel that I see better.
Growing up by the Atlantic ocean, I loved to sit for hours watching waves come in. And mountains, I loved that slightly shuddering feeling of smallness that came from looking at their mightiness. When I moved to the Midwest, I missed the ocean and mountains a lot until I met Midwestern storms. Watching the clouds roll across the sky and foment the intimidation of wind, thunder, lightening, I found some of what I'd missed about oceans and mountains. They all made me feel small in a good way. Living in Chicago at that time, it was easy to feel the street cleaners and forecasters had gained the upper hand over storms. Until one would just roll over the city and knock all our collective socks and infrastructure out! I liked the feeling of being put in my place. The natural order was bigger then me, thank God!
Over time, as I've lived in the country, gardened, raised animals, I've become more humble from necessity. The bugs, and weeds and poop, the winds and storms, they all out number, are more powerful than me. Oh I've learned a trick or two over the years, and I love when I'm able to manage some natural force to my vision, keep my animals safe, keep weeds from thriving in my garden. But I have no illusions of my ultimate power.
This is somewhat comforting in another arena. I'm old enough to have noticed the changes to thriving flora and fauna populations over the years. I've seen some colonies of magical wildflowers disappear from too many grazing deer or invasive species moving in. I remember when the DNR introduced multiflora rose as a "living fence", when introduced bass pushed out the pickerel and perch from our childhood fishing pond. Yes, humans are speeding up all sorts of ecological change. We are not going to be able to return to the wilderness of our youths; it continues to grow and change and rebalance.
Nature is not nostalgic. It accepts the loss of the passenger pidgin and the introduction of carp and kudzu. Yes humans have blindly messed up our environments and Lord only knows, we are starting to pay the price along with lots of life on earth. We may be well on our way to our own extinction. But like the astroid which may have led to the dinosaur extinction or the "year long winter" that happened from volcanic ash which blocked the sun, the natural order continues to rebalance, recover into some new reality, to be resilient.
We humans have lots of wonderful tools, and the ability to notice and savor, to plan and to correct course, but we are not all powerful. We do what humans can do with hands and plans, but we can't drive the ecology car; we're part of it, and a small part to boot! The Natural Oder of things is dynamic, not sentimental, and doesn't give a hoot in what form life will go on. I am sad from all the losses I've noticed in my lifetime but humbled that people couldn't/can't control all the forces we've played with, sort of like The Sorcerer's Apprentice. The natural world is bigger than we are; we are small and not God, despite our ambitions.
This is why I need to live in the country as long as I'm able, to feel small in a good way, to find my proper place in the natural order of things.
When I was in my 20's, living on a farm in rural Wisconsin, we had chickens who roamed around in the day but who needed to be shut up snug in their coop at night, lest varmints get them. Chickens have a deep homing urge as it becomes dusk, so all I'd have to do was wait 'til it was full dark and then shut their door. The chicken house was several hundred yards from the house down our dark driveway, and I noticed that I felt a little scared as I walked down the drive. Staying in the bright cone of a flashlight made it worse as it blinded me to, made me feel even more separate from, what was outside the light.
One time as I was walking down, I asked my self what was I scared of? I felt
"I'm scared of the wild things"
and then I heard a voice answer from the backroom of my mind,
"you are a wild thing too, with tools and mind instead of tooth and claw. You are a wild thing amongst wild things."
It hit me like a bolt of lightening. I turned off the flashlight. And walked the rest of the way feeling how I was one more natural force, in some ways stronger in others weaker, just one more wild thing amongst wild things. I have never been afraid of the dark since. In fact, I prefer walking in the dark; I feel that I see better.
Growing up by the Atlantic ocean, I loved to sit for hours watching waves come in. And mountains, I loved that slightly shuddering feeling of smallness that came from looking at their mightiness. When I moved to the Midwest, I missed the ocean and mountains a lot until I met Midwestern storms. Watching the clouds roll across the sky and foment the intimidation of wind, thunder, lightening, I found some of what I'd missed about oceans and mountains. They all made me feel small in a good way. Living in Chicago at that time, it was easy to feel the street cleaners and forecasters had gained the upper hand over storms. Until one would just roll over the city and knock all our collective socks and infrastructure out! I liked the feeling of being put in my place. The natural order was bigger then me, thank God!
Over time, as I've lived in the country, gardened, raised animals, I've become more humble from necessity. The bugs, and weeds and poop, the winds and storms, they all out number, are more powerful than me. Oh I've learned a trick or two over the years, and I love when I'm able to manage some natural force to my vision, keep my animals safe, keep weeds from thriving in my garden. But I have no illusions of my ultimate power.
This is somewhat comforting in another arena. I'm old enough to have noticed the changes to thriving flora and fauna populations over the years. I've seen some colonies of magical wildflowers disappear from too many grazing deer or invasive species moving in. I remember when the DNR introduced multiflora rose as a "living fence", when introduced bass pushed out the pickerel and perch from our childhood fishing pond. Yes, humans are speeding up all sorts of ecological change. We are not going to be able to return to the wilderness of our youths; it continues to grow and change and rebalance.
Nature is not nostalgic. It accepts the loss of the passenger pidgin and the introduction of carp and kudzu. Yes humans have blindly messed up our environments and Lord only knows, we are starting to pay the price along with lots of life on earth. We may be well on our way to our own extinction. But like the astroid which may have led to the dinosaur extinction or the "year long winter" that happened from volcanic ash which blocked the sun, the natural order continues to rebalance, recover into some new reality, to be resilient.
We humans have lots of wonderful tools, and the ability to notice and savor, to plan and to correct course, but we are not all powerful. We do what humans can do with hands and plans, but we can't drive the ecology car; we're part of it, and a small part to boot! The Natural Oder of things is dynamic, not sentimental, and doesn't give a hoot in what form life will go on. I am sad from all the losses I've noticed in my lifetime but humbled that people couldn't/can't control all the forces we've played with, sort of like The Sorcerer's Apprentice. The natural world is bigger than we are; we are small and not God, despite our ambitions.
This is why I need to live in the country as long as I'm able, to feel small in a good way, to find my proper place in the natural order of things.
Saturday, April 1, 2017
Shifting
Something is shifting. I'm trying to figure out what will make my hips less painful, more functional. I had a fall, and was carrying too much weight too early in my recovery from surgery. (Oh my life just loves to hit me up side the head with metaphors, so apt they're funny!) The jury is out. I may have a pinched nerve in my spine causing the thigh pain or perhaps it's just taking the muscles, which atrophied and foreshortened from my bad hips, time to stretch and grow. I track this and try that and hope the changing sensations will move more strongly in the functional direction.
But the shift I'm feeling has more to do with my last post about personal responsibility. What I hoped for and sensed the day after the election seems to be happening. People are standing up, speaking out. Yes there are more knee jerk partisan positions but there is also thoughtful reexamining of what's real, of not countering the fake news and exaggerations with exaggerations and blame but with as truthful truth as we can tell and taking responsibility for our share of bad decisions.
I'm feeling the shift in odd things like keeping my kitchen counters and sink clean and put away at all times. Who knew how clearing and empowering that simple consistency would be? It came, as have several of my shifts, from some out of the blue misfortune that part of me decided was a gift, a challenge from the Universe to step up and into my life. Perhaps it comes because I have no illusion that I know what's going on in this crazy world or how things will turn out. Though I do sense that there's more going on than meets the eye; things are not simply black or white. Times like these require a delicate balance of honest effort and voluntary free fall. And being open to the subtle shifts of energy and willing to catch the change, in whatever domaine it may be.
Next week it will be 5 years since Gil's Easter morning death. I'll be on the train with my 7 yr old granddaughter Piper traveling cross country to visit David in California. I've been feeling Gil's presence a lot of late. I was at Piper's 2nd grade concert where they sang an assortment of jazz standards and I wept through the whole thing. Gil was palpably present. I've had more conversations with him recently too. All those posts where I wrote of waiting to be swept off into the next phase of my life, Now I'm feeling like a cool breeze is blowing through an open door and that when I'm ready I can shift my weight in a just a few little things and see how it feels to live my life in a new way.
But the shift I'm feeling has more to do with my last post about personal responsibility. What I hoped for and sensed the day after the election seems to be happening. People are standing up, speaking out. Yes there are more knee jerk partisan positions but there is also thoughtful reexamining of what's real, of not countering the fake news and exaggerations with exaggerations and blame but with as truthful truth as we can tell and taking responsibility for our share of bad decisions.
I'm feeling the shift in odd things like keeping my kitchen counters and sink clean and put away at all times. Who knew how clearing and empowering that simple consistency would be? It came, as have several of my shifts, from some out of the blue misfortune that part of me decided was a gift, a challenge from the Universe to step up and into my life. Perhaps it comes because I have no illusion that I know what's going on in this crazy world or how things will turn out. Though I do sense that there's more going on than meets the eye; things are not simply black or white. Times like these require a delicate balance of honest effort and voluntary free fall. And being open to the subtle shifts of energy and willing to catch the change, in whatever domaine it may be.
Next week it will be 5 years since Gil's Easter morning death. I'll be on the train with my 7 yr old granddaughter Piper traveling cross country to visit David in California. I've been feeling Gil's presence a lot of late. I was at Piper's 2nd grade concert where they sang an assortment of jazz standards and I wept through the whole thing. Gil was palpably present. I've had more conversations with him recently too. All those posts where I wrote of waiting to be swept off into the next phase of my life, Now I'm feeling like a cool breeze is blowing through an open door and that when I'm ready I can shift my weight in a just a few little things and see how it feels to live my life in a new way.
Thursday, November 10, 2016
Justice
I am shaken; is it by any chance a gift? I don't know. Only that the foundations of my world order have been shaken. Not by natural disaster, economic depression or World War, but by the human way of things. I've grown up, through the fifties, the sixties, the seventies, seeing "the arc of the moral Universe" bending sizably, significantly, "toward justice". I have leaned on the civil rights movement, the "Great Society", the women's and other "rights" movements. It is coming. We can legislate justice! Or can we?
In some weird way, I am grateful for Donald Trump's win. I can't believe I'm saying this. His destructive forces may waken the American spirit in a way that Hillary never could have. We have had the protections of the voting rights act, and so many other safety nets ripped off. No more protection from our country's worst instincts. Now it's up to each of us to bear witness to injustice, the State is not going to do it, to throw our particular skills into pulling our specific local efforts to further the action. It won't happen without us.
I'm waking up. I feel that I may have something that's needed. I'm not sure what it is or what it will look like, but I can't afford to keep on sleeping. There are big forces stirring. Perhaps it's like the rise of the Nazis in Germany. Who knows? But it's clearly not a time to trust in the parental goodness, wisdom of our leaders. Time to take responsibility to think for myself. Time to deeply listen; it's so not black or white. Time to decide what mix of caring for the generations, the groups who will bear the brunt of living with the fallout of this election, do I want to spend my life force on. The devastation will hit them so much more than my cohort.
It seems a little like 9/11 but we have accidentally guided the planes ourselves. Hopefully, this time we won't be admonished to "go shopping", but will step forward into more personal responsibility to make the "arc" bend toward justice. I'm excited to see what emerges. Who knows, perhaps this will be the turning point that is looked back on years from now, of when America started to grow up, and live up to it's potential for greatness. Or not, but I want to be part of the effort to try. And to bear witness to what I see. There will be so much pain. I don't want to ignore it, to waste it. No more waiting, it's wakeup time.
In some weird way, I am grateful for Donald Trump's win. I can't believe I'm saying this. His destructive forces may waken the American spirit in a way that Hillary never could have. We have had the protections of the voting rights act, and so many other safety nets ripped off. No more protection from our country's worst instincts. Now it's up to each of us to bear witness to injustice, the State is not going to do it, to throw our particular skills into pulling our specific local efforts to further the action. It won't happen without us.
I'm waking up. I feel that I may have something that's needed. I'm not sure what it is or what it will look like, but I can't afford to keep on sleeping. There are big forces stirring. Perhaps it's like the rise of the Nazis in Germany. Who knows? But it's clearly not a time to trust in the parental goodness, wisdom of our leaders. Time to take responsibility to think for myself. Time to deeply listen; it's so not black or white. Time to decide what mix of caring for the generations, the groups who will bear the brunt of living with the fallout of this election, do I want to spend my life force on. The devastation will hit them so much more than my cohort.
It seems a little like 9/11 but we have accidentally guided the planes ourselves. Hopefully, this time we won't be admonished to "go shopping", but will step forward into more personal responsibility to make the "arc" bend toward justice. I'm excited to see what emerges. Who knows, perhaps this will be the turning point that is looked back on years from now, of when America started to grow up, and live up to it's potential for greatness. Or not, but I want to be part of the effort to try. And to bear witness to what I see. There will be so much pain. I don't want to ignore it, to waste it. No more waiting, it's wakeup time.
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