I've used the metaphor a lot in my blog over the years since Gi's death, but now it may be more useful than ever.
I've been stirring up sludge. What I understand of the Lyme process I'm going through is I stir up bio film where the bad guys hang out and then flush them. It involves times where I feel like crap; I'm in one of those now. I was feeling pretty good for a couple of months, and have slipped into a crash and burn body moment.
Ah but here's were the metaphor may be most useful, it's the soul demons that are stirred up too which make this an epic struggle. Doubt, fear, desire, neediness, fear, grief, fear. I've done a pretty good job dealing with the the surface of all of these over the years, thought I'd really done a good job of grieving. But now the deep stuff has been stirred up and boy is it dark in here!
Orpheus descended into Hell to find his beloved Eurydice, his Soul mate and bring her back into the land of the living. He had his music, which could make the animals stop still to listen, and advise on how to proceed, "don't look back, have faith and keep your eyes on the Life you're returning to".
So I'm conversing with fear, and desire, and loss, loss, loss. And not trying to appease and dismiss them, move on to more pleasant subjects. I'm hanging out in the darkness and getting wet. Not sure if I'll be able to bring my Life Force, my creative energy back to the surface of my life. But I've felt half buried since Gil died. Perhaps this is the time to stir the sludge.
It reminds me of a Sappho poem I encountered as a teen "If you are squeamish, don't prod the beach rubble" I've always been a prodder and not too squeamish.
Perhaps it's time to crank my music!!!
Friday, August 23, 2019
Monday, August 19, 2019
70
I turned 70, a solid round number. It sounds substantial, has gravitas, invites admiration. There have been other openings in the last week or two. I had an intense bout of grieving Gil's absence, realized how touch starved I am, became aware of a hunger to be held. How odd and disorienting after 7 yrs. 4 months. Somehow I haven't moved as far along into my life without him as I thought I had.
My body is getting better for the most part. The baseline walking, weight bearing disfunction seems to have significantly improved though I still cycle through bouts of pain and exhaustion. It leaves me hopeful and much more tuned to the NOW of what I feel. There has been a shift. I've prayed for my Life Force to sweep me up and help me reengage with what remains of my life. Perhaps this moment of awareness of hunger, pain, relief and curiosity is the tension filled balancing act of being alive.
A poem which spoke to me:
My body is getting better for the most part. The baseline walking, weight bearing disfunction seems to have significantly improved though I still cycle through bouts of pain and exhaustion. It leaves me hopeful and much more tuned to the NOW of what I feel. There has been a shift. I've prayed for my Life Force to sweep me up and help me reengage with what remains of my life. Perhaps this moment of awareness of hunger, pain, relief and curiosity is the tension filled balancing act of being alive.
A poem which spoke to me:
Want
by Carrie Fountain (excerpt, slightly edited)
Perhaps this
is the heart’s constant project:
this simple learning;
learning how to hold hopelessness
and hope together;
to see on the unharmed surface of one
the great scar of the other;
to recognize both and
to make something of both;
to desire everything
and nothing at once
and to desire it all the time;
and to contain that desire fleshly, in a body;
to wash it and rest it and feed it;
to learn its name and from whence it came;
and to speak to it-oh, most of all
to speak to it-
every day, every day,
saying to one part,
“Well, maybe this is all you get,”
while saying to the other,
“Go on, break it open, Go for it!”
Monday, March 11, 2019
Self Care
I've been challenged to think deeply about self care, challenged by others but mostly challenged by my Self. For some odd reason, it's a skill I never really learned well, never paid much attention to. Not sure why. Perhaps as eldest in a Catholic family, girl of the 50's-60's, it wasn't part of the standard education of the time? But there are other members of my family who learned to prioritize self care in the midst of the competing needs of others. Perhaps I've feared desiring what I believe I can't get? Whatever the reasons, since Gil's death, I've known that my job was to take better care of myself, but struggled to figure out what I needed, what I wanted more than how to get it.
Thirty five years ago when I started in Alanon, was the first I remember the concept breaking into my consciousness. My response was chocolate croissant. We were coming into the home stretch of pretty deep family poverty, eleven thousand dollars a year was the ten year high for our family of four. I thought self care was indulging in pleasure, something I hadn't allowed myself when getting enough $ for basic needs was a struggle. Though my income improved as a single parent, my available head space and time were even less as I grieved the notion of Family which had been the siren call of my life 'til that point. Focusing on the needs of my kids was the prime driver of my energy. As I became more skilled as a middle school counselor, the skill of helping others, parents and kids, to become more self actualized, became my go to response to any situation.
And then I met Gil who taught me so much about pleasure and indulgence. He joined me in pursuing a lifestyle which would further the action for our guys, creating a lifestyle in the country which resonated with a deeper part of myself. Though I wouldn't have thought to call it that, it was perhaps the next step in feeding a part of my Self which was essential to who I was at my core.
Gil is gone, my kids grown and self sufficient. I'm left with the silence of other's needs which makes me realize how little I know about what I need.
I imagine that I'm learning to parent myself. Of course giving pleasure is the first stop of parental love. But I've taught parents for years that sometimes the better gift is the respect of a firm "no", and providing a menu of soul enhancing opportunities that hopefully the emerging Self will have the appetite to reach for. Force feeding soul food, making them practice piano, try hard at school, can backfire, I know, I know. So how do I stimulate my appetite for activities which will feed my deep well being, exercise, writing, reaching out to friends, a proper balance of vision and project activity?
I don't know. Perhaps just this activity, empathy for the part of me which just wants to nap, balanced with the knowledge that accomplishing some of my basic survival tasks will make me feel more whole. Inviting dreams, asking for help while my body is still struggling, reducing energy draining tasks to a minimum, listening for the green hum of Spring in my life, encouraging the moisture harvesting of tears so I can grieve the losses that make what IS so much more of a gift, perhaps this is what Self care looks like for my almost 70 year old body/soul.
The chocolate croissant part of me has learned; I can be hungry for more. That Hunger is both the guide and the goal. A dear friend has passed. He had an appetite for life like no one I've ever known. I felt a jolt of his Life Force when he died. I want to find and live my appetite, regardless of whether I can get it or not. The Hunger is the gift.
Thirty five years ago when I started in Alanon, was the first I remember the concept breaking into my consciousness. My response was chocolate croissant. We were coming into the home stretch of pretty deep family poverty, eleven thousand dollars a year was the ten year high for our family of four. I thought self care was indulging in pleasure, something I hadn't allowed myself when getting enough $ for basic needs was a struggle. Though my income improved as a single parent, my available head space and time were even less as I grieved the notion of Family which had been the siren call of my life 'til that point. Focusing on the needs of my kids was the prime driver of my energy. As I became more skilled as a middle school counselor, the skill of helping others, parents and kids, to become more self actualized, became my go to response to any situation.
And then I met Gil who taught me so much about pleasure and indulgence. He joined me in pursuing a lifestyle which would further the action for our guys, creating a lifestyle in the country which resonated with a deeper part of myself. Though I wouldn't have thought to call it that, it was perhaps the next step in feeding a part of my Self which was essential to who I was at my core.
Gil is gone, my kids grown and self sufficient. I'm left with the silence of other's needs which makes me realize how little I know about what I need.
I imagine that I'm learning to parent myself. Of course giving pleasure is the first stop of parental love. But I've taught parents for years that sometimes the better gift is the respect of a firm "no", and providing a menu of soul enhancing opportunities that hopefully the emerging Self will have the appetite to reach for. Force feeding soul food, making them practice piano, try hard at school, can backfire, I know, I know. So how do I stimulate my appetite for activities which will feed my deep well being, exercise, writing, reaching out to friends, a proper balance of vision and project activity?
I don't know. Perhaps just this activity, empathy for the part of me which just wants to nap, balanced with the knowledge that accomplishing some of my basic survival tasks will make me feel more whole. Inviting dreams, asking for help while my body is still struggling, reducing energy draining tasks to a minimum, listening for the green hum of Spring in my life, encouraging the moisture harvesting of tears so I can grieve the losses that make what IS so much more of a gift, perhaps this is what Self care looks like for my almost 70 year old body/soul.
The chocolate croissant part of me has learned; I can be hungry for more. That Hunger is both the guide and the goal. A dear friend has passed. He had an appetite for life like no one I've ever known. I felt a jolt of his Life Force when he died. I want to find and live my appetite, regardless of whether I can get it or not. The Hunger is the gift.
Sunday, December 30, 2018
It's not MS
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.
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.
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?
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