Guess it’s time I checked in


My Pain Team, marching toward healthy progressMy Pain Team, marching toward healthy progress

My Pain Team, marching toward healthy progress

I’m going to go into my health updates, which are the main thing I have to write about at the moment.

In March, I had a test known as an anorectal manometry. It was not fun. I won’t go into all the icky details of the test and what it did to me (though I really want to), but let’s just say we got a great deal of medical data from the test, which is the important thing.

I will say that I was unable to complete the entire process as it was supposed to be done.

It turns out that the reason I’m in so much pain all the time, and the reason I have such issues with spasms, is due to the fact that my entire muscle structure in my pelvis appears to be locked in spasm.

The muscle relaxants and anti-seizure medications I’ve been taking haven’t helped, and there’s no way to get direct medicine to these places “from underneath”. In order to help release these, I’ve been scheduled for a couple of procedures for the month of May.

First, I will get something called a ganglion impar block. They will put me under mild sedation, and then do an injection of steroids and some kind of anesthetic to block the pain and hopefully get those muscles to relax. Sometimes they also do an RF ablation to remove the signals entirely.

Later in the month I will have a plexus block, which is meant to help with my upper abdominal spasming.

For both of these I am hopeful that they will help me. I’m a little concerned over what the side-effects might be. My Pain Team assured me that this is only the first of many options we have to treat my pain and get me to a better place.

Luckily, as far as my oncologist is concerned, I am super healthy. My blood work looks great, and my most recent CT scan showed no malignancies in my body. That’s definitely something to be happy about, especially when I think about the fact that we caught my illness so late!

I can’t separate health from pain, so I don’t feel healthy. I want to say “my energy is good”, but pain is draining. Even if I get a great night’s sleep and I initially wake up feeling pretty good, by the time I’ve moved around a bit and gotten something to eat, my body begins its daily protestations.

But back to medical “stuff”.

I’ve been referred to physical therapy for chronic pain, and I think we also plan on having me do biofeedback. Biofeedback interests me, as I was introduced to it in 2009 when I went through Kaiser Permanente’s Chronic Pain program. Of that, the biofeedback seemed to help me the most, even though we were only given 4 sessions. Sadly, my health insurance at the time didn’t allow me to do more. I’m told I have amazing coverage now, so, again, I’m hopeful.

My intention is to have my ostomy reversed by the end of the year. I’ve been told that, depending on how things go with my pain, this might not be possible.

I want to poop normally.

Energy Healing, Old Acquaintances, and To Share, Or Not To Share?

It’s been a long time since I had a good, old sit-down in front of the camera. If you’re mainly interested in the energy work, skip ahead to 8:20. Mind you, this isn’t so much a tutorial, but rather a description of what I do. I plan to break it down a bit more in the future, but I realized as I was riffing this one out (as I always do) that I’d never gone over what my energy work entails.

So here ya go.

I also go over how things have been going for me, in general, lately.

As always, I bid you peace and love.

Happiness Versus Body Dysmorphia


image.jpgimage.jpg

Not sure where to start, so I’ll start in the middle.

I have fibromyalgia. I was diagnosed in mid-1994, after spending all of 1993 and most of ‘94 going to doctors over and over, trying to find out why I felt so exhausted and sick all the time. Up until this happened, I was very fit, working out every other day. I had a decent diet of home-prepared meals (I could have used a bit more protein, but it wasn’t a terrible diet), and my only complaints were that I sometimes got terrible headaches from neck tension due to a couple of early childhood neck injuries, frequent insomnia, and a strange malady of nonspecific tonsillitis that would hit me hard every 6-8 weeks. I’ll cover that in some other post as that’s a whole story of its own.

I’ve been given various treatments over the years for my fibro, including psychotherapy, various types of yoga, physical therapy, muscle stim, chiropractic, biofeedback, and medications. As for these last, there have also been quite a few that I’ve tried, from SSRIs to anti-seizure meds. Some of them have made me gain weight. Some of them have made me lose weight. Some of them have made me gain a lot of weight.

Since 2004, I’ve gained, and lost, and gained again, and lost again, and gained again roughly 35 pounds. The only benefit of any of this is that I’m confident I have great bone density. My feet have suffered, though.

At the moment, I not only have fibro, but I also have intense spasming in my low colon, near the base of my spine. This makes sitting, standing, and walking, all very difficult for me much of the time. I have to take numerous meds to control it, and I have to really pace myself, such as when I had to pack up my Mom’s apartment after she died. I took a lot of naps!


This would be me, only with less bokeh flare, and more “body flare” ifyagetwhaimsaynThis would be me, only with less bokeh flare, and more “body flare” ifyagetwhaimsayn

This would be me, only with less bokeh flare, and more “body flare” ifyagetwhaimsayn

What I’m slowly getting to is that I’m currently taking multiple medications that apparently make one gain weight. I’ve been trying so hard to lose weight since last summer, and my body isn’t responding. It finally occurred to me to look up my medications to see if the reason might lie there, as I’ve never in my life been on so many meds. (I’d like to officially state my intense dislike of taking meds in the first place, even cannabis, and that I only do so now as I feel life has left me no other avenue. Don’t advise me at this point; I have no money to invest in anything not covered by SNAP or Medicare, save for the tiny amount of cannabis I buy every few weeks.)

  1. I’m taking Lyrica to manage the fibro and at the max dose to help with spasms. If I skip it or take a lower dose, I’m in endless suffering, so that’s not an option. Weight gain? Check.

  2. I’m taking Elavil, to help with the pain as well as my intractable insomnia. This is another one that when I run out, I notice a decrease in wellness. Weight gain? Check.

  3. I’m taking Trazodone solely to help me with sleep, even though it’s apparently an antidepressant. I do feel like it makes a difference, but I’m not sure how much, since I combine it with other things. Weight gain? Check.

  4. I’ve been prescribed Zoloft to help me with depression. Not sure if it does anything. Weight gain? Checkaroo.

  5. I take Tizanidine to help with muscle spasm, as it’s a muscle relaxant. While not a common side effect, it is known to cause weight gain. I feel it does help me.

  6. I take Klonopin for anxiety, and it’s directly linked to weight gain, due to slowing down electrical activity in the brain. I’m not sure how much it helps me. I take it at night because it makes me drowsy, but I just read that it can interrupt the sleep cycle, so I might rethink this one. I’ve been waking up after 4 hours every night for months now.

So…that’s not only a lot of drugs in a general sense, it’s a lot of drugs that cause weight gain. It’s no wonder I’m feeling puffy and gross these days.


It looks like candyIt looks like candy

It looks like candy

Enter: body dysmorphia.

I know I’m no spring chicken. I’ve never considered age anything other than the observation of the passage of time. Within myself, I’ve always felt more or less the same—at least in the essential sense. My perspective on life and its issues have changed a great deal over time, but I am not my thoughts. I create my thoughts, but I am not my creation. In the same way that I have experiences, and have feelings and resolve related to them, but I am not my experiences. It’s akin to the idea of the Observer and the Observed. But I’m getting away from myself here.

The point is, I feel I should be able to look in the mirror at any time and give myself double-shoot-’em-up-hands, a wink, and say, “Hey, there you are!”, and be happy. Every time. Total acceptance. But I can’t.

It’s galling, too, as I have done a great deal of spiritual work, shadow work, and psychic healing, through various therapeutic methods since my teens—I’m deeply spiritual, and deeply connected to my spiritual journey. I don’t consider attachment to the way I appear physically to be a spiritual thing. Quite the opposite, in fact.


Guess who needs to renew their iStock subscription?Guess who needs to renew their iStock subscription?

Guess who needs to renew their iStock subscription?

Some days it’s not too bad. That’s natural, I think. It’s just far too often that I find I don’t even want to look at myself. I went from being skeletal, with sunken eyes (frankly, I think those will never quite go away, now that I’ve had chemo) and my critical vision stuck to every blemish: jaundiced complexion; turkey skin on neck, arms, thighs; lifeless hair, and terrible nails. Now that I’ve gained weight, and so much more than I needed to be considered “healthy”, since I’m very petite, my critical view currently falls on cellulite, puffiness, and my awful abdominal scarring.

There are other women I see in the world with roughly my size and shape, and I find them beautiful. I make it a point to try and compare myself to them and ask myself why I’m unable to see myself the way I see them. I never have an answer for that.

So what’s a girl to do? What wisdom am I lacking? Is it my environment? My culture?

Do you struggle with issues like this?

Shadow Work for Healing and Integration


11-1-20-vloggy vlog.jpg11-1-20-vloggy vlog.jpg

I’ve uploaded another video where I discuss some of my latest shadow work having to do with my early childhood trauma. This deep and basic wounding has been holding me back my entire life, but it’s taken the death of my mother for me to be able to fully address it—which, sadly, I knew it would.

This is dark work, but it’s incredibly healing and enlightening, as all true shadow work inevitably is. I hope you take the time to watch the video and glean something good from it, as that’s what I intended when I recorded it for you. Buckle up, as it’s a long one. I didn’t want to edit it down this time, even though I was sorely tempted to do so, as all the information is valuable.

I do discuss triggering topics, so there’s that. Also, I go into the topic of suicide, so if you or a loved one is contemplating self harm, please know there’s always the Suicide Prevention Lifeline at 1 (800) 273-TALK. They’re available 24/7, so you are never alone.

Please share your thoughts in the comments, either here or in the video. I always want to hear from you and know how my work is helping you. I also want to encourage you to join me over at my Patreon so you can access my Discord. I’m building a community over there so we can create music, art and togetherness, and also discuss what we have in common, whether it be struggles with shadow work, spirituality, or just the struggles we’re all feeling through COVID and isolation.

As always, I bid you peace and love.

Time to Do A Little Catching Up


Don’t let those doe eyes and that cheeky smile fool youDon’t let those doe eyes and that cheeky smile fool you

Don’t let those doe eyes and that cheeky smile fool you

I realize I haven’t been around much lately, especially on my YouTube Channel, so I’ve recorded a vloggy vlog to let you know how things have been going lately. Hope you’ve been well. Check it out and leave a note in the comments to let me know you you’ve been. I think all of us are struggling with some kind of COVID blues at this point, so if you’re going stir-crazy, let’s talk about it.

I’ve not been doing terribly well. Don’t let that delightful face up there fool you—I’ve been in a deep depression since my mom died. But I’m dealing with it. I’m doing all the thinking and processing of grief that one is supposed to be doing, in my own special, albeit dark and seemingly bleak manner. I tend to hit these things head-on and then drown in them, spiritually, and if you were too see me in the spirit realm, all you’d see is one hand, flailing around above the waters of terrordarkness and every now and then my head would pop up, gasping for air, and I’d gurgle, “I’m okay!”, before sort of slowly sinking back down into the swampiness.

It’s so much fun.

But needful, I daresay.

Please join my Patreon so we can chat about all these distressing times on my Discord. We’ve got a blossoming community over there and it’s the perfect place you make your voice heard.

As always, I bid you love and peace.

Time to Do A Little Catching Up

I realize I haven’t been around much lately, especially on my YouTube Channel, so I recording a vloggy vlog to let you know how things have been going lately. Hope you’ve been well. Check it out and leave a note in the comments to let me know you you’ve been.

Hurting Is Hard When You’re Feeling Alone


pexels-photo-848573.jpegpexels-photo-848573.jpeg

I suppose some of this could be self-imposed, but I also know much of it comes from the fact that people don’t like my bluntness. People turn away from my flavor of “authenticity”, which I put in quotes, because being authentic has become such a big thing lately, but my authentic self apparently isn’t what the folks I’m connected to seem to want. I’ve also seen that many people I was connected to on Facebook tuned me out when I was going through cancer treatment (and the struggles with SBO after) as I had to keep posting my GoFundMe just to keep myself from being homeless. While I did get State Disability benefits, they were only enough to pay for utilities, and they ran out after a few months since I’d been doing 1099 work for so many years. I didn’t get any Federal Disability until February of this year.


Did people think I was doing it for fun?Did people think I was doing it for fun?

Did people think I was doing it for fun?

I felt like a tool, having to fund raise from my hospital bed, but I had no choice. I can tell this had an effect on my Facebook friends, due to the fall in my interactions. Few people see my posts, and fewer have a response of some kind. Therefore, I deleted the app a few years ago, and I only ever go to Facebook using the web version, and that not very often. If you see anything from me, it’s because I’ve cross-posted from another app. My expectations are low as far as engagements go. If you’d like to get in touch with me the best way is via my website or Twitter. I’ve deleted Instagram, too, so I won’t get your DM there either.


I'm Queen of The World!I'm Queen of The World!

I’m Queen of The World!

While I take ownership of the outcome of what happened overall I don’t take ownership of the individuals involved and their desire to either disconnect or tune me out. Their inability to handle a person in real pain is a sign of their lack of maturity. If anything, I’m responsible for having shallow friends. I’ve yelled about my resentment over this for some time now, and I’ve decided to (mostly) be done with this, save for the fact that I’m still going through some heavy shit and I’m still alone.

So consider this my transition piece: you, the reader, real or imagined, are my friend. There! I’m officially no longer alone! I’m feeling better already.

This will still be my place to journal all of my thoughts and feelings, but I’ll stop complaining about friends. Deal? Deal.

Hurting Is Hard When You’re Feeling Alone

I suppose some of this could be self-imposed, but I also know much of it comes from the fact that people don’t like my bluntness. People turn away from my flavor of “authenticity”, which I put in quotes, because being authentic has become such a big thing lately, but my authentic self apparently isn’t what the folks I’m connected to seem to want. I’ve also seen that many people I was connected to on Facebook tuned me out when I was going through cancer treatment (and the struggles with SBO after) as I had to keep posting my GoFundMe just to keep myself from being homeless. While I did get State Disability benefits, they were only enough to pay for utilities, and they ran out after a few months since I’d been doing 1099 work for so many years. I didn’t get any Federal Disability until February of this year.

Did people think I was doing it for fun?

I felt like a tool, having to fund raise from my hospital bed, but I had no choice. I can tell this had an effect on my Facebook friends, due to the fall in my interactions. Few people see my posts, and fewer have a response of some kind. Therefore, I deleted the app a few years ago, and I only ever go to Facebook using the web version, and that not very often. If you see anything from me, it’s because I’ve cross-posted from another app. My expectations are low as far as engagements go. If you’d like to get in touch with me the best way is via my website or Twitter. I’ve deleted Instagram, too, so I won’t get your DM there either.

I’m Queen of The World!

While I take ownership of the outcome of what happened overall I don’t take ownership of the individuals involved and their desire to either disconnect or tune me out. Their inability to handle a person in real pain is a sign of their lack of maturity. If anything, I’m responsible for having shallow friends. I’ve yelled about my resentment over this for some time now, and I’ve decided to (mostly) be done with this, save for the fact that I’m still going through some heavy shit and I’m still alone.

So consider this my transition piece: you, the reader, real or imagined, are my friend. There! I’m officially no longer alone! I’m feeling better already.

This will still be my place to journal all of my thoughts and feelings, but I’ll stop complaining about friends. Deal? Deal.

It Gets Worse Before It Gets Better: The Messy Business of Moving Out


pexels-photo-4246205.jpegpexels-photo-4246205.jpeg

If you’ve been keeping up on my blog at all, you’ll know that my Mom recently passed away. I came to her apartment in Phoenix to help her with her health issues. They quickly spiraled out of control and she had to be moved to an in-patient facility. While we initially thought she’d be there just a few days until she was stabilized, she just kept getting worse until she died.

It was so sad.

So here I am, at her former apartment. It’s a gorgeous complex. I’m trying to clear out all the shmutz and get ready to pack it all up. It has to be done by the end of this week.


Just one view of the controlled chaos that is currently my life.  Also, my Mom had a penchant for white sofas for some reason.Just one view of the controlled chaos that is currently my life.  Also, my Mom had a penchant for white sofas for some reason.

Just one view of the controlled chaos that is currently my life.
Also, my Mom had a penchant for white sofas for some reason.

It’s been hard to sleep. Not only because I’m technically grieving—I did actually cry a bit last night, and I felt some relief. I grieve slowly, always. But doing this type of work is slow. I have to evaluate the usefulness of every piece of stuff I encounter and decide if I should keep it, toss it, or give it away. The storage space is minimal in this place, but Mom managed to squirrel away a shocking amount of…stuff. Like, two Magic Bullets, the original model and the updated one, clearly neither one much used. There were two immersion mixers, both a slow cooker and an Instant Pot (that one I’m taking home!) two AppleTVs…and so on.

It’s been quite the adventure.

Of course, there are many not-so-useful things, or things that are useful but that I don’t personally need. These will be sold at the estate sale, the proceeds of which will be given to a charity stated in her Will.


img_0339.jpegimg_0339.jpeg

In the distance, the candelabra reveals the fact that it’s been sitting in the window in the Arizona heat

I managed to get through all of the cabinets by today, which was my goal. All that’s left are the desk drawers. They’re quite small. There won’t be much trash there. After that, it’s just her clothes in the closet, dresser and highboy, most of which will go to Goodwill. This will be very simple and I don’t expect it to drain me too much. I’m so tired each day. I pass out by 10:00 PM, but then I wake up around 3:30 AM and can’t get back to sleep. It’s frustrating. I don’t feel rested at that point. I’m a pro at managing my insomnia though, and I either ruminate or meditate for the next 6–7 hours and get up around 2:30 PM. I have to make sure I don’t overdo things. My Mom’s bed is considerably more comfortable than what they had at the care facility, thus I’m not waking up feeling like I’ve been beaten with a stick. That’s a blessing. I wish I could say the same for my feet.


Here we see stacks of things we plan to keepHere we see stacks of things we plan to keep

Here we see stacks of things we plan to keep

In 2005, my Mom had a terrible incident with flesh-eating bacteria on the back of her right leg. By the time it was discovered, they had to remove most of her right calf and a good portion of her right hamstring. She was never the same afterward.

If you’ve been following my blog, you’ll recall my reference to her Will, also dated 2005.

Her only child who remained by her side during this trauma and her long recuperation, was her local child. It made sense. Her resentment was immature, yet not unexpected.

I was a single mother, and after looking for work for a long time, I’d finally found a job. I was still under probation when this had occurred, as well as being under one of our many speaking moratoriums that we’ve had over the years. I won’t bore you with the details of this instance—or perhaps that will be the subject of another blog post.

I got updates about Mom on a regular basis. I wanted to know how she was doing. I had no idea how bad it was. About a year later I ditched by old beater for a new car so I could confidently make the trip with a kid affordably (two tanks of gas versus two plane tickets? Heck yeah!) and I saw the wounds. It was horrifying. Half of the back of her leg was gone. They’d had to take skin grafts from her backside to cover her leg. There was a part, right at the back of the knee, that they didn’t cover adequately. They didn’t compensate properly for the movement required in that area. She was never able to properly stretch or bend her leg. She walked with a cane for a few years, but eventually ended-up needing a walker.

Side note: Having used a walker myself when I was on chemo, I can safely say that everyone you see in public is using their walker totally wrong. Look next time. You’ll see them hunched over, unbalanced, their weight in front of them. It’s terribly unsafe. I was taught that you need to stand up straight, arms at your sides. If you can’t have them at your sides, your walker is at the wrong height for you. They’re adjustable and your weight should be centered so you don’t fall. This is why you see so many hip and shoulder surgeries.


Here we have the fullest picture of the badly controlled chaos that is my lifeHere we have the fullest picture of the badly controlled chaos that is my life

Here we have the fullest picture of the badly controlled chaos that is my life

The reason this matters is because her apartment is accessible, and while it has more floor space, the carpet pile is non-existent. It’s hard on the feet and each day I find myself nearly wincing off to bed. I know, poor me.

The next step is fairly simple, and then I start building boxes and packing ’em up. While it looks like gobs of stuff, when I break it down in my mind, it’s really not that much. I unpacked her when she first moved in and I remember it was pretty easy, though she felt overwhelmed. However, I’m an old pro when it comes to moving, and I’m not easily intimidated by such things.

Not any more.

It Gets Worse Before It Gets Better: The Messy Business of Moving Out

If you’ve been keeping up on my blog at all, you’ll know that my Mom recently passed away. I came to her apartment in Phoenix to help her with her health issues. They quickly spiraled out of control and she had to be moved to an in-patient facility. While we initially thought she’d be there just a few days until she was stabilized, she just kept getting worse until she died.

It was so sad.

So here I am, at her former apartment. It’s a gorgeous complex. I’m trying to clear out all the shmutz and get ready to pack it all up. It has to be done by the end of this week.

Just one view of the controlled chaos that is currently my life. Also, my Mom has a penchant for white sofas for some reason.

It’s been hard to sleep. Not only because I’m technically grieving—I did actually cry a bit last night, and I felt some relief. I grieve slowly, always. But doing this type of work is slow. I have to evaluate the usefulness of every piece of stuff I encounter and decide if I should keep it, toss it, or give it away. The storage space is minimal in this place, but Mom managed to squirrel away a shocking amount of…stuff. Like, two Magic Bullets, the original model and the updated one, clearly neither one much used. There were two immersion mixers, both a slow cooker and an Instant Pot (that one I’m taking home!) two AppleTVs…and so on.

It’s been quite the adventure.

Of course, there are many not-so-useful things, or things that are useful but that I don’t personally need. These will be sold at the estate sale, the proceeds of which will be given to a charity stated in her Will.

In the distance, the candelabra reveals the fact that it’s been sitting in the window in the Arizona heat

I managed to get through all of the cabinets by today, which was my goal. All that’s left are the desk drawers. They’re quite small. There won’t be much trash there. After that, it’s just her clothes in the closet, dresser and highboy, most of which will go to Goodwill. This will be very simple and I don’t expect it to drain me too much. I’m so tired each day. I pass out by 10:00 PM, but then I wake up around 3:30 AM and can’t get back to sleep. It’s frustrating. I don’t feel rested at that point. I’m a pro at managing my insomnia though, and I either ruminate or meditate for the next 6–7 hours and get up around 2:30 PM. I have to make sure I don’t overdo things. My Mom’s bed is considerably more comfortable than what they had at the care facility, thus I’m not waking up feeling like I’ve been beaten with a stick. That’s a blessing. I wish I could say the same for my feet.

Here we see stacks of things we plan to keep

In 2005, my Mom had a terrible incident with flesh-eating bacteria on the back of her right leg. By the time it was discovered, they had to remove most of her right calf and a good portion of her right hamstring. She was never the same afterward.

If you’ve been following my blog, you’ll recall my reference to her Will, also dated 2005.

Her only child who remained by her side during this trauma and her long recuperation, was her local child. It made sense. Her resentment was immature, yet not unexpected.

I was a single mother, and after looking for work for a long time, I’d finally found a job. I was still under probation when this had occurred, as well as being under one of our many speaking moratoriums that we’ve had over the years. I won’t bore you with the details of this instance—or perhaps that will be the subject of another blog post.

I got updates about Mom on a regular basis. I wanted to know how she was doing. I had no idea how bad it was. About a year later I ditched by old beater for a new car so I could confidently make the trip with a kid affordably (two tanks of gas versus two place tickets? Heck yeah!) and I saw the wounds. It was horrifying. Half of the back of her leg was gone. They’d had to take skin grafts from her backside to cover her leg. There was a part, right at the back of the knee, that they didn’t cover adequately. They didn’t compensate properly for the movement required in that area. She was never able to properly stretch or bend her leg. She walked with a cane for a few years, but eventually ended-up needing a walker.

Side note: Having used a walker myself when I was on chemo, I can safely say that everyone you see in public is using their walker totally wrong. Look next time. You’ll see them hunched over, unbalanced, their weight in front of them. It’s terribly unsafe. I was taught that you need to stand up straight, arms at your sides. If you can’t have them at your sides, your walker is at the wrong height for you. They’re adjustable and your weight should be centered so you don’t fall. This is why you see so many hip and shoulder surgeries.

Here we have the fullest picture of the badly controlled chaos that is my life

The reason this matters is because her apartment is accessible, and while it has more floor space, the carpet pile is non-existent. It’s hard on the feet and each day I find myself nearly wincing off to bed. I know, poor me.

The next step is fairly simple, and then I start building boxes and packing ’em up. While it looks like gobs of stuff, when I break it down in my mind, it’s really not that much. I unpacked her when she first moved in and I remember it was pretty easy, though she felt overwhelmed. However, I’m an old pro when it comes to moving, and I’m not easily intimidated by such things.

Not any more.

The Surreal Experience of Watching a Person Die


(and other things they don't teach you in school)(and other things they don't teach you in school)

(and other things they don’t teach you in school)

Well, so my Mom died. I guess you’ve figured that out if you saw my last video, which I forgot to post here when I recorded it (been a bit preoccupied and I’ve gotten my posting order all mixed up. Sue me). I really thought we had more time. That’s been the most shocking part of it all for me.

When I arrived, she wasn’t doing great but she seemed far from dying. I thought all she needed was a dietary fix and a bit of time. I kept forgetting the fact that when she started dialysis 5 or so years ago she was already Stage 5. Stage Five. That’s Kidney Failure.

It was all due to gold treatments she’d received when she was only a little older than me for her rheumatoid arthritis. It was known at the time that it could cause kidney damage, so there was always extensive blood work done with each treatment. The moment there were signs that yes, her kidneys had been harmed, the treatments were stopped.

She should have sought dialysis then. But no.

When she would speak of it, the mental image I’d get would be of being stuck in some kind of iron lung for hours, or even days at a time, with no mobility, no freedom, one’s life held hostage by machines. Dialysis was the last thing she could possibly want.

I was at the doctor’s appointment the day he came and told her the bad news: that her tests showed her disease had advanced to Stage 5. I asked, “What’s the next Stage?” He answered, “There is no next Stage.” I turned to my mother in accusation and said, “Mom!”

When we got back to her house, I immediately started researching dialysis to find out if it was, in fact, as awful as she thought it was, and if at Stage 5, there was any point in pursuing it. It turned out that even at Stage 5 there was a great deal of hope, and HEY BONUS!, there’s even a way to do it in the comfort of your OWN HOME.

I told her about it and immediately signed us up for an informational seminar.

Although she tried the home dialysis, it turned out to be uncomfortable and difficult. I ended up hearing this from quite a few people who had tried this. Bummer. But, my Mom was open to going to a center, which she faithfully did for roughly the following several years.

At first, it was a revelation! While the treatment tired her out when she got home, the following day she was peppy and energized, feeling quite back to her normal self. Weekends, she could go out to dinner and the movies again, or the opera, like she used to. She had much of her old life back—or at least so it seemed, for a time. But it was just staving-off the inevitable. She was in kidney failure after all. She was already dying.

I know I already wrote a post where I spoke quite ill of my mother. We had a complicated relationship. Let me take a few moments to tell you of her talents.

She could knit, crochet, and sew amazing things. Growing up, her hands were never still. She even took sewing lessons, to learn how to make custom patterns. She made my brother’s girlfriend’s prom dress, which was this gorgeous one shoulder taffeta creation. She made needlepoint. In the evenings, during family TV time, she would pull out whatever she was working on, and I loved to watch her. I never had the talent or patience for this work. Sadly, arthritis took this away from her, along with vision problems.

She loved to write poetry. I don’t know if she had any talent for it, but she would spend hours with a legal pad and a pen, musing away late into the night. I think she shared something with me once, but I was too young to appreciate it. I prefer free-verse, anyway.

She could tell stories! Oh my, the stories of her life were so interesting! From weekends on her grandmother’s farm in Chile, to moving to New York in the 1950’s, then taking a bus trip to visit her brother in San Francisco—and getting stuck there because she ran out of money!—and taking a job as a bank teller for BofA, and, while getting the medical screening for health insurance and just by chance swallowing while the doctor was palpating her throat to discover, of all things, thyroid cancer, which back in those days involved removing half of her neck! She literally could not hold her head up for months, as they had removed not only the tumor and her thyroid, but all of the tendons and muscles on that side of her neck just to make certain they had gotten it all! It left a massive t-shaped scar along her jawline, down her neck, and across her collarbone. This was a beautiful woman in her early twenties who went on to feel deformed for the next decade. Devastating. Plus, the physical therapy involved just to hold her head up, turn her head, compensate for what was lost—just incredible. I have never been able to imagine what that must have been like for her.

Obviously she found men to love her and marry her. She created a family. She was conflicted. Perhaps she never felt worthy. She and I spoke somewhat of this, but never directly. She could only ever allude to mistakes she had made and wishing she had done things differently. Don’t we all?

This was also a woman who loved history. She adored historical novels. She could retell historical events as if she had actually been there. She could bring them to life in such a way that I think she missed her true calling as a historical author!

I will miss this cantankerous, impossible, vivacious, lovable lady. I wish you had known her. You’d have felt the same.

Confronting Death, Dying, Spiritual Cleansing and Update from Phoenix


We all have to face death in our lives at some point. When it comes, you;re never ready.We all have to face death in our lives at some point. When it comes, you;re never ready.

We all have to face death in our lives at some point. When it comes, you;re never ready.

I talk about spending time with my mother as she struggles with her last days. Her decline was much more rapid than any of us expected, and I found myself exhausted and wondering and…numb. I was glad to be there with her as I was denied the opportunity to be there with my father during his final days. Still, it’s always difficult and unexpected. I suspect each time is most likely as unique as each person, and as complex as each relationship.

Have you ever experienced the loss of a parent? Have you been there with them? Has the time enriched your life in any way, or changed you, or did it detract from your life? Let me know in the comments.

The Surreal Experience of Watching a Person Die

(and other things they don’t teach you in school)

Well, so my Mom died. I guess you’ve figured that out if you saw my last video, which I forgot to post here when I recorded it (been a bit preoccupied and I’ve gotten my posting order all mixed up. Sue me). I really thought we had more time. That’s been the most shocking part of it all for me.

When I arrived, she wasn’t doing great but she seemed far from dying. I thought all she needed was a dietary fix and a bit of time. I kept forgetting the fact that when she started dialysis 5 or so years ago she was already Stage 5. Stage Five. That’s Kidney Failure.

It was all due to gold treatments she’d received when she was only a little older than me for her rheumatoid arthritis. It was known at the time that it could cause kidney damage, so there was always extensive blood work done with each treatment. The moment there were signs that yes, her kidneys had been harmed, the treatments were stopped.

She should have sought dialysis then. But no.

When she would speak of it, the mental image I’d get would be of being stuck in some kind of iron lung for hours, or even days at a time, with no mobility, no freedom, one’s life held hostage by machines. Dialysis was the last thing she could possibly want.

I was at the doctor’s appointment the day he came and told her the bad news: that her tests showed her disease had advanced to Stage 5. I asked, “What’s the next Stage?” He answered, “There is no next Stage.” I turned to my mother in accusation and said, “Mom!”

When we got back to her house, I immediately started researching dialysis to find out if it was, in fact, as awful as she thought it was, and if at Stage 5, there was any point in pursuing it. It turned out that even at Stage 5 there was a great deal of hope, and HEY BONUS!, there’s even a way to do it in the comfort of your OWN HOME.

I told her about it and immediately signed us up for an informational seminar.

Although she tried the home dialysis, it turned out to be uncomfortable and difficult. I ended up hearing this from quite a few people who had tried this. Bummer. But, my Mom was open to going to a center, which she faithfully did for roughly the following several years.

At first, it was a revelation! While the treatment tired her out when she got home, the following day she was peppy and energized, feeling quite back to her normal self. Weekends, she could go out to dinner and the movies again, or the opera, like she used to. She had much of her old life back—or at least so it seemed, for a time. But it was just staving-off the inevitable. She was in kidney failure after all. She was already dying.

I know I already wrote a post where I spoke quite ill of my mother. We had a complicated relationship. Let me take a few moments to tell you of her talents.

She could knit, crochet, and sew amazing things. Growing up, her hands were never still. She even took sewing lessons, to learn how to make custom patterns. She made my brother’s girlfriend’s prom dress, which was this gorgeous one shoulder taffeta creation. She made needlepoint. In the evenings, during family TV time, she would pull out whatever she was working on, and I loved to watch her. I never had the talent or patience for this work. Sadly, arthritis took this away from her, along with vision problems.

She loved to write poetry. I don’t know if she had any talent for it, but she would spend hours with a legal pad and a pen, musing away late into the night. I think she shared something with me once, but I was too young to appreciate it. I prefer free-verse, anyway.

She could tell stories! Oh my, the stories of her life were so interesting! From weekends on her grandmother’s farm in Chile, to moving to New York in the 1950’s, then taking a bus trip to visit her brother in San Francisco—and getting stuck there because she ran out of money!—and taking a job as a bank teller for BofA, and, while getting the medical screening for health insurance and just by chance swallowing while the doctor was palpating her throat to discover, of all things, thyroid cancer, which back in those days involved removing half of her neck! She literally could not hold her head up for months, as they had removed not only the tumor and her thyroid, but all of the tendons and muscles on that side of her neck just to make certain they had gotten it all! It left a massive t-shaped scar along her jawline, down her neck, and across her collarbone. This was a beautiful woman in her early twenties who went on to feel deformed for the next decade. Devastating. Plus, the physical therapy involved just to hold her head up, turn her head, compensate for what was lost—just incredible. I have never been able to imagine what that must have been like for her.

Obviously she found men to love her and marry her. She created a family. She was conflicted. Perhaps she never felt worthy. She and I spoke somewhat of this, but never directly. She could only ever allude to mistakes she had made and wishing she had done things differently. Don’t we all?

This was also a woman who loved history. She adored historical novels. She could retell historical events as if she had actually been there. She could bring them to life in such a way that I think she missed her true calling as a historical author!

I will miss this cantankerous, impossible, vivacious, lovable lady. I wish you had known her. You’d have felt the same.

Confronting Death, Dying, Spiritual Cleansing and Update from Phoenix

I talk about spending time with my mother as she struggles with her last days. Her decline was much more rapid than any of us expected, and I found myself exhausted and wondering and…numb. I was glad to be there with her as I was denied the opportunity to be there with my father during his final days. Still, it’s always difficult and unexpected. I suspect each time is most likely as unique as each person, and as complex as each relationship.

Have you ever experienced the loss of a parent? Have you been there with them? Has the time enriched your life in any way, or changed you, or did it detract from your life? Let me know in the comments.

Living with C-PTSD is Like Living in Your Own Private Idaho, if by Idaho You Mean Ruining Good Things That Come Your Way


These aren’t alligator tearsThese aren’t alligator tears

These aren’t alligator tears

I’ve decided not to get out of bed today. I’m just wiped out. Too many nights in a row where Mom suddenly needs to crawl out of the bed for some reason, and if I weren’t such a light sleeper, she’d have fallen and broken something by now. That’s the last thing we need.

According to Wikipedia, C-PTSD, (Complex Post-Traumatic Stress Syndrome) isn’t currently recognized by the DSM-V, which is super helpful. The page does explain how C-PTSD is distinct from PTSD, in that PTSD is generally connected to a specific triggering event, whereas C-PTSD is connected to numerous and varied events, like ongoing childhood abuse one would find in an alcoholic household—as an example. An important quote from the page states that, “Some researchers believe that C-PTSD is distinct from, but similar to, PTSD, somatization disorder, dissociative identity disorder, and borderline personality disorder.[6] Its main distinctions are a distortion of the person’s core identity and significant emotional dysregulation.”

In my case, I grew up in an unsafe environment that did involve alcohol, but not always.

There is a history of undiagnosed mental illness on both sides of my family, including depression, and probably bipolar disorder. Most days, my brothers and I never knew what would trigger an event. It could be something as insignificant as a stain on the kitchen counter that had been missed when we did our chores that afternoon, noticed upon our parents’ return home from work around 5:20 PM, that would escalate far into the evening, leaving everyone emotionally drained around 11:00 PM. Declarations of wanting to divorce the entire family would have been made at some point (by my mother), that we all had ruined her life, were making her miserable, and there would be so much incoherent yelling. Things that had been said months ago perhaps in passing would be brought up as accusations and proof of our hatred, or of our lack of moral fiber, and it would all end with everyone in tears, that we would each retreat to our separate rooms to sob and wonder. Nobody would have eaten. Homework would have been left undone.


Feeling this way at the end of 3 out of 7 days of the week was the normFeeling this way at the end of 3 out of 7 days of the week was the norm

Feeling this way at the end of 3 out of 7 days of the week was the norm

The majority of the time it was between me and my mother that these events took place, but others would be circled in should they try to defend or cry foul. Too often I’d be left on my own as it would be difficult to face the inevitable onslaught should they try, and thus they’d stay quiet in their rooms.

At these times, I’d feel the outrage and injustice on my own and destroy my bedroom, flinging the drawers from my dresser across the room and crashing items from my bookcase, pulling the bedding from my bed, and then sit in the mess, sobbing. Eventually, my father would come in to lecture me about how I must control myself to keep the peace in the house. How it was up to me to not trigger these events, because I knew how she could be; I understood how she could get in these moods. It was all up to me to make the family work smoothly.

It was my fault when it all fell apart.

I recall a specific incident before The Twins were born when my brother and I were trying to finish a jigsaw puzzle on the coffee table before Tante (my mother’s best friend who lived in The City) came over for dinner that night. We were already dressed for the event, and our mother was trying to vacuum the living room. We were in the way, but we were concentrating on the puzzle. We kept moving around the coffee table as we worked, thinking that we were getting enough out of her way, but apparently it wasn’t good enough for her. Our father had left the house in the family car to get some wine and dinner rolls in town, as we lived in a new development outside of town.

Mom lost it.

She started running into us with the vacuum to get us out of the way. The coffee table wasn’t substantial, being one of those “Danish-modern” styles, and she banged that around too, sending our puzzle flying, and running over pieces with the vacuum. We were terrified, and squealed and ran to the corner of the room, clinging to each other in fear.

She put up the vacuum, stomped to the master bedroom, packed a suitcase, and left the house.

To this day, I have no idea how long she was gone, or what, exactly, happened next. I think Tante came soon after, as the door was left open and we were huddled together, crying? Then my Dad came and then left, looking for my Mom, while Tante tended to us and tried to soothe us.

For a long time afterward, I remember my brother having incredible anxiety any time my parents left us alone in the car to go grocery shopping, or to run any kind of errand. This was back in the sixties, when it was common to leave the kids in the car unattended. He would always sob in terror when they would leave, and his terror would trigger mine, and we would both cry as we saw them walking away, despite them reassuring us that they’d be back soon. As such things go, I’d say this was the mildest part of what we went through, and after a few minutes, we’d make up some kind of game to amuse ourselves while they were gone.

[EDIT] My brother just stopped by to check in with me and Mom, and reminded me of another time when this happened, same circumstance, different people coming over (my Godfather and his wife), only this time Mom hopped on a bus and went all the way to Sacramento, and Dad had to spend several hours driving all the way up there to track her down and bring her back. Yikes. I’d blocked this one out. I need to point out that I’m barely three years older than The Twins, so this is very early abandonment trauma.


Goodbye Mother. Goodbye Father.Goodbye Mother. Goodbye Father.

Goodbye Mother. Goodbye Father.

There was a lot of playing us off of each other while growing up. By my mother. Playing favorites. There was a definite hierarchy of beloved-ness in our family, and I was lowest on that totem pole.

My father, on the other hand, was inaccessible and remote. I have some vague early memories of sexual abuse before The Twins were born.

So I guess I ask the world to forgive me if my thinking is off sometimes. I’m entrained to not trust what I see. I’m entrained to not believe what I hear. I’m always waiting for the other shoe to drop. Because these games my Mom has played with the family didn’t end when my father shot himself in the garage in 1995.

They didn’t end when she abruptly sold the family home and moved to Phoenix in 1999.

I went through cancer treatment without the support of my mother, because she didn’t believe I had cancer at first. She thought I had made it up for attention. So I stopped speaking to her for a couple of years because I just couldn’t deal with that. And that certainly wasn’t the first time I had stopped speaking to her since moving out of the family home.

And now? Now, I sit with her at an in-patient care center, while she sleeps on the verge of a kidney-failure coma, near death, and I write what many would consider to be horrible things to write about one’s mother when one’s mother is about to die. There’s no good time to write these things. Since my cancer, I’ve decided I need to be more blunt. It’s not pretty, and it’s not nice, but it’s the truth. I’m just telling the truth. It’s the only virtue I have. It’s the only virtue that matters, when it comes to dealing with humans. Humans are very, very good at avoiding the truth.


Speaking ill of the almost dead? How dare I!Speaking ill of the almost dead? How dare I!

Speaking ill of the almost dead? How dare I!

But as for me being the person that is here, by her bedside? I hold no actual grudge toward her. She is a damaged person, who has never confronted her fears and wounds. I think she is doing so now, in her sleep; in her dreams, before she slips away. I’m holding space for her to do that and keeping her body safe while she does so. It should be me who’s here to do that. I know my damage. I know what’s there, for the most part. I’m aware that I’m a work in progress.

I do pretty well, as long as I don’t try to do romance—that area of my life is one jumbled, fucked-up trash heap that I’m still working on. It would take a Saint’s patience to get me through to the other side.

But I do fine on my own, so I think I’ll just fly solo from here on out.

Living with C-PTSD is Like Living in Your Own Private Idaho, if by Idaho You Mean Ruining Good Things That Come Your Way

I’ve decided not to get out of bed today. I’m just wiped out. Too many nights in a row where Mom suddenly needs to crawl out of the bed for some reason, and if I weren’t such a light sleeper, she’d have fallen and broken something by now. That’s the last thing we need.

According to Wikipedia, C-PTSD, (Complex Post-Traumatic Stress Syndrome) isn’t currently recognized by the DSM-V, which is super helpful. The page does explain how C-PTSD is distinct from PTSD, in that PTSD is generally connected to a specific triggering event, whereas C-PTSD is connected to numerous and varied events, like ongoing childhood abuse one would find in an alcoholic household—as an example. An important quote from the page states that, “Some researchers believe that C-PTSD is distinct from, but similar to, PTSD, somatization disorder, dissociative identity disorder, and borderline personality disorder.[6] Its main distinctions are a distortion of the person’s core identity and significant emotional dysregulation.”

In my case, I grew up in an unsafe environment that did involve alcohol, but not always.

There is a history of undiagnosed mental illness on both sides of my family, including depression, and probably bipolar disorder. Most days, my brothers and I never knew what would trigger an event. It could be something as insignificant as a stain on the kitchen counter that had been missed when we did our chores that afternoon, noticed upon our parents’ return home from work around 5:20 PM, that would escalate far into the evening, leaving everyone emotionally drained around 11:00 PM. Declarations of wanting to divorce the entire family would have been made at some point (by my mother), that we all had ruined her life, were making her miserable, and there would be so much incoherent yelling. Things that had been said months ago perhaps in passing would be brought up as accusations and proof of our hatred, or of our lack of moral fiber, and it would all end with everyone in tears, that we would each retreat to our separate rooms to sob and wonder. Nobody would have eaten. Homework would have been left undone.

Feeling this way at the end of 3 out of 7 days of the week was the norm

The majority of the time it was between me and my mother that these events took place, but others would be circled in should they try to defend or cry foul. Too often I’d be left on my own as it would be difficult to face the inevitable onslaught should they try, and thus they’d stay quiet in their rooms.

At these times, I’d feel the outrage and injustice on my own and destroy my bedroom, flinging the drawers from my dresser across the room and crashing items from my bookcase, pulling the bedding from my bed, and then sit in the mess, sobbing. Eventually, my father would come in to lecture me about how I must control myself to keep the peace in the house. How it was up to me to not trigger these events, because I knew how she could be; I understood how she could get in these moods. It was all up to me to make the family work smoothly.

It was my fault when it all fell apart.

I recall a specific incident before The Twins were born when my brother and I were trying to finish a jigsaw puzzle on the coffee table before Tante (my mother’s best friend who lived in The City) came over for dinner that night. We were already dressed for the event, and our mother was trying to vacuum the living room. We were in the way, but we were concentrating on the puzzle. We kept moving around the coffee table as we worked, thinking that we were getting enough out of her way, but apparently it wasn’t good enough for her. Our father had left the house in the family car to get some wine and dinner rolls in town, as we lived in a new development outside of town.

Mom lost it.

She started running into us with the vacuum to get us out of the way. The coffee table wasn’t substantial, being one of those “Danish-modern” styles, and she banged that around too, sending our puzzle flying, and running over pieces with the vacuum. We were terrified, and squealed and ran to the corner of the room, clinging to each other in fear.

She put up the vacuum, stomped to the master bedroom, packed a suitcase, and left the house.
To this day, I have no idea how long she was gone, or what, exactly, happened next. I think Tante came soon after, as the door was left open and we were huddled together, crying? Then my Dad came and then left, looking for my Mom, while Tante tended to us and tried to soothe us.

For a long time afterward, I remember my brother having incredible anxiety any time my parents left us alone in the car to go grocery shopping, or to run any kind of errand. This was back in the sixties, when it was common to leave the kids in the car unattended. He would always sob in terror when they would leave, and his terror would trigger mine, and we would both cry as we saw them walking away, despite them reassuring us that they’d be back soon. As such things go, I’d say this was the mildest part of what we went through, and after a few minutes, we’d make up some kind of game to amuse ourselves while they were gone.

[EDIT] My brother just stopped by to check in with me and Mom, and reminded me of another time when this happened, same circumstance, different people coming over (my Godfather and his wife), only this time Mom hopped on a bus and went all the way to Sacramento, and Dad had to spend several hours driving all the way up there to track her down and bring her back. Yikes. I’d blocked this one out. I need to point out that I’m barely three years older than The Twins, so this is very early abandonment trauma.

Goodbye Mother. Goodbye Father.

There was a lot of playing us off of each other while growing up. By my mother. Playing favorites. There was a definite hierarchy of beloved-ness in our family, and I was lowest on that totem pole.

My father, on the other hand, was inaccessible and remote. I have some vague early memories of sexual abuse before The Twins were born.

So I guess I ask the world to forgive me if my thinking is off sometimes. I’m entrained to not trust what I see. I’m entrained to not believe what I hear. I’m always waiting for the other shoe to drop. Because these games my Mom has played with the family didn’t end when my father shot himself in the garage in 1995.

They didn’t end when she abruptly sold the family home and moved to Phoenix in 1999.

I went through cancer treatment without the support of my mother, because she didn’t believe I had cancer at first. She thought I had made it up for attention. So I stopped speaking to her for a couple of years because I just couldn’t deal with that. And that certainly wasn’t the first time I had stopped speaking to her since moving out of the family home.

And now? Now, I sit with her at an in-patient care center, while she sleeps on the verge of a kidney-failure coma, near death, and I write what many would consider to be horrible things to write about one’s mother when one’s mother is about to die. There’s no good time to write these things. Since my cancer, I’ve decided I need to be more blunt. It’s not pretty, and it’s not nice, but it’s the truth. I’m just telling the truth. It’s the only virtue I have. It’s the only virtue that matters, when it comes to dealing with humans. Humans are very, very good at avoiding the truth.

Speaking ill of the almost dead? How dare I!

But as for me being the person that is here, by her bedside? I hold no actual grudge toward her. She is a damaged person, who has never confronted her fears and wounds. I think she is doing so now, in her sleep; in her dreams, before she slips away. I’m holding space for her to do that and keeping her body safe while she does so. It should be me who’s here to do that. I know my damage. I know what’s there, for the most part. I’m aware that I’m a work in progress.

I do pretty well, as long as I don’t try to do romance—that area of my life is one jumbled, fucked-up trash heap that I’m still working on. It would take a Saint’s patience to get me through to the other side.

But I do fine on my own, so I think I’ll just fly solo from here on out.

Why Do I Do This?!


The concept album is a long-held tradition among musiciansThe concept album is a long-held tradition among musicians

The concept album is a long-held tradition among musicians

Bringing to you another video, this time in 4k. It’s been a hot minute since I’ve posted anything anywhere, but I’ve hardly been idle. There have been many and sundry little things taking my attention away, and in this video I chat about what’s been occupying my time. Like writing new songs, for example. I realize I just put out an album (that was long past its due date) and I’m supposed to only be focused on talking about that, but I’m not a conventional artist in any sense of the word. “Swallow” was conceived in 1995 as an album that would explore five different sides of a woman’s personality, with “Swallow” being the main character, and the one who has had to swallow her feelings and circumstances in order to survive. Clearly, that’s not the album I ended up making.

Experimenting with clickbaity titles is fun

Nor is am i me/am i not?, though I suppose in a way I came slightly closer.

As a point of curiosity, it seems that Tori Amos made that album, in a way, when she put out American Doll Posse, an album that put me off entirely for years due to the artwork and the fact that it seemed like Ms. Amos simply wanted an excuse to wear as many different wigs as she could to disguise the fact that she was losing her hair. It had finally become noticeable on To Venus and Back, which is why, I think, she had wigged artwork for Strange Little Girls, which I thought was a great album of covers. In fact, I only picked American Doll Posse up a couple of months ago after hearing Bouncing Off Clouds on The Graham Norton Show on YouTube. It’s a solid album. I don’t think it needed the concept. I think it was a ruse to hide her hair loss. It happens to women just as it does to men, and it’s horrible and embarrassing. She probably had to have a scalp reduction surgery that took years to heal, and that’s probably why there are so many fans that say she looks different now. Her eyebrows have literally moved. Please don’t hate on me for this: I adore her work.

Yikes, I’ve hung myself out to dry now. Um…moving right along.

All of the material from Swallow had been written between 2010 and 2012, and was pretty much complete by 2013. At that point, life circumstances became too pressing for me to move forward on the album and it had to wait. The release itself has been quiet, though I’ve gotten great feedback, and I’m pleased with its performance thus far. Having not written any music since 2012 and getting back into after all these years feels exhilarating.

Oh, and I chat with a sparrow for a moment. In the video, I zoom in close so you can see her clearly, but I realize that some folks might think I spliced that Very Mary Poppins moment in. Sadly, you’ll just have to take my word for it, because I imported the video directly from Quicktime to Premiere Rush without saving a copy, and once it’s rendered in Premiere Rush, it becomes uneditable.

I’ll think about saving a source copy next time. It’s not like I don’t have a terabyte of cloud storage or anything.

Two things of note here are that I’m now on Patreon, the address is (predictably) https://www.patreon.com/auryaun. I originally had Tiers there for both music supporters and tarot readings, but the way Patreon works made it too difficult. You can only offer either Tiers that are paid monthly, or “per creation”. I don’t see how I could satisfy my music fans in this way, plus I’m giving access to my Discord server, and how would that make sense? So I removed the tarot reading portion from my Patreon and only have monthly music fan subscriptions available that come with access to Discord, early access to new tracks, special swag, and more things as they happen.

For the tarot fans, I’ll be offering readings through a different avenue and most likely will use PayPal. In this video, I offer my first 150 Subscribers to my YouTube Channel to a free, single card reading, just for becoming a sub of my Channel and liking the video. Then, all you have to do is DM me your question. Super simple!

If it goes really well I might extend it to more subscribers. I’ll be setting up a page (probably here) for tarot readings. I know I can help a lot of people with my readings, as I’ve been doing them for so long. I’m excited to get going with these.

Why Do I Do This?!

Bringing to you another video, this time in 4k. It’s been a hot minute since I’ve posted anything anywhere, but I’ve hardly been idle. There have been many and sundry little things taking my attention away, and in this video I chat about what’s been occupying my time. Like writing new songs, for example. I realize I just put out an album (that was long past its due date) and I’m supposed to only be focused on talking about that, but I’m not a conventional artist in any sense of the word. “Swallow” was conceived in 1995 as an album that would explore five different sides of a woman’s personality, with “Swallow” being the main character, and the one who has had to swallow her feelings and circumstances in order to survive. Clearly, that’s not the album I ended up making.

Experimenting with clickbaity titles is fun

Nor is am i me/am i not?, though I suppose in a way I came slightly closer.

As a point of curiosity, it seems that Tori Amos made that album, in a way, when she put out American Doll Posse, an album that put me off entirely for years due to the artwork and the fact that it seemed like Ms. Amos simply wanted an excuse to wear as many different wigs as she could to disguise the fact that she was losing her hair. It had finally become noticeable on To Venus and Back, which is why, I think, she had wigged artwork for Strange Little Girls, which I thought was a great album of covers. In fact, I only picked American Doll Posse up a couple of months ago after hearing Bouncing Off Clouds on The Graham Norton Show on YouTube. It’s a solid album. I don’t think it needed the concept. I think it was a ruse to hide her hair loss. It happens to women just as it does to men, and it’s horrible and embarrassing. She probably had to have a scalp reduction surgery that took years to heal, and that’s probably why there are so many fans that say she looks different now. Her eyebrows have literally moved. Please don’t hate on me for this: I adore her work.

Yikes, I’ve hung myself out to dry now. Um…moving right along.

All of the material from Swallow had been written between 2010 and 2012, and was pretty much complete by 2013. At that point, life circumstances became too pressing for me to move forward on the album and it had to wait. The release itself has been quiet, though I’ve gotten great feedback, and I’m pleased with its performance thus far. Having not written any music since 2012 and getting back into after all these years feels exhilarating.

Oh, and I chat with a sparrow for a moment. In the video, I zoom in close so you can see her clearly, but I realize that some folks might think I spliced that Very Mary Poppins moment in. Sadly, you’ll just have to take my word for it, because I imported the video directly from Quicktime to Premiere Rush without saving a copy, and once it’s rendered in Premiere Rush, it becomes uneditable.

I’ll think about saving a source copy next time. It’s not like I don’t have a terabyte of cloud storage or anything.

Two things of note here are that I’m now on Patreon, the address is (predictably) https://www.patreon.com/auryaun. I originally had Tiers there for both music supporters and tarot readings, but the way Patreon works made it too difficult. You can only offer either Tiers that are paid monthly, or “per creation”. I don’t see how I could satisfy my music fans in this way, plus I’m giving access to my Discord server, and how would that make sense? So I removed the tarot reading portion from my Patreon and only have monthly music fan subscriptions available that come with access to Discord, early access to new tracks, special swag, and more things as they happen.

For the tarot fans, I’ll be offering readings through a different avenue and most likely will use PayPal. In this video, I offer my first 150 Subscribers to my YouTube Channel to a free, single card reading, just for becoming a sub of my Channel and liking the video. Then, all you have to do is DM me your question. Super simple!

If it goes really well I might extend it to more subscribers. I’ll be setting up a page (probably here) for tarot readings. I know I can help a lot of people with my readings, as I’ve been doing them for so long. I’m excited to get going with these.

Vloggy Check-In and Can You Believe?


Yes, CAN, I am SQUISHING YOUR HEAD!Yes, CAN, I am SQUISHING YOUR HEAD!

Yes, CAN, I am SQUISHING YOUR HEAD!

Just a quick note to say hello, while I spend the day in bed with a fibro flare, plus I got that can of finishing wax I was waiting for and had a shock when I saw it!

Vloggy Check-In and Can You Believe?

Yes, CAN, I am SQUISHING YOUR HEAD!

Just a quick note to say hello, while I spend the day in bed with a fibro flare, plus I got that can of finishing wax I was waiting for and had a shock when I saw it!

How Was Your Day?


howwas2.jpghowwas2.jpg

Self to Self: How was your day?
Self to Self: Oh, okay I guess.
Self to Self: What’s wrong?
Self to Self: Nothing, really. I actually felt a bit better today than I have for the past few days.
Self to Self: Well, that’s good!
Self to Self: Sure.
Self to Self: Yeah. I managed to get a few things done. I still have to pace myself.
Self to Self: Well, we know that’s always going to be the case.
Self to Self: Yeah.
Self to Self: Yeah.
Self to Self: So, what did you do?
Self to Self: Well, I’ve wanted to get the patio a bit tidied up. It’s never been a space we can actually use—it’s always too hot, plus the squirrels have taken over. I need to move all the bird feeders to the front of the house, but that will mean taking out the big ladder, and I have to wait for a day when I feel strong enough to do that and my balance isn’t all wonky.
Self to Self: Right. Isn’t there something you can do about the squirrels?
Self to Self: At the moment, all I can seem to do is keep the feeders in hard-to-reach places and put a heavy layer of gravel over the tops of my potted plants.
Self to Self: Wow. That must be frustrating. I know how much you enjoy gardening.
Self to Self: It is. They’re cute little bastards. I picked up a gorgeous dwarf date palm and a potted grass plant for the back and swept that patio for what felt like the hundredth time this week. I also have a bunch of flowers I need to get out of their grower’s pots for the front, but all I’ve been able to do is water them since I got them. I find planting satisfying but very physical work.
Self to Self: Again, pacing yourself is okay.
Self to Self: But we just had a heatwave and I skipped two days of watering. They’re mostly hydrangeas, and even though they were pretty much shaded, they didn’t do well at all. I feel terrible when this happens because plants are helpless and rely upon on us completely. I also have a petunia dish garden I need to remake, and I’ll be adding lobelias to it. I love their electric blue color. I hope I can do it tomorrow…
Self to Self: Whatever happens, it will be fine.
Self to Self: I’m sure you’re right.

How Was Your Day?

Self to Self: How was your day?
Self to Self: Oh, okay I guess.
Self to Self: What’s wrong?
Self to Self: Nothing, really. I actually felt a bit better today than I have for the past few days.
Self to Self: Well, that’s good!
Self to Self: Sure.
Self to Self: Yeah. I managed to get a few things done. I still have to pace myself.
Self to Self: Well, we know that’s always going to be the case.
Self to Self: Yeah.
Self to Self: Yeah.
Self to Self: So, what did you do?
Self to Self: Well, I’ve wanted to get the patio a bit tidied up. It’s never been a space we can actually use—it’s always too hot, plus the squirrels have taken over. I need to move all the bird feeders to the front of the house, but that will mean taking out the big ladder, and I have to wait for a day when I feel strong enough to do that and my balance isn’t all wonky.
Self to Self: Right. Isn’t there something you can do about the squirrels?
Self to Self: At the moment, all I can seem to do is keep the feeders in hard-to-reach places and put a heavy layer of gravel over the tops of my potted plants.
Self to Self: Wow. That must be frustrating. I know how much you enjoy gardening.
Self to Self: It is. They’re cute little bastards. I picked up a gorgeous dwarf date palm and a potted grass plant for the back and swept that patio for what felt like the hundredth time this week. I also have a bunch of flowers I need to get out of their grower’s pots for the front, but all I’ve been able to do is water them since I got them. I find planting satisfying but very physical work.
Self to Self: Again, pacing yourself is okay.
Self to Self: But we just had a heatwave and I skipped two days of watering. They’re mostly hydrangeas, and even though they were pretty much shaded, they didn’t do well at all. I feel terrible when this happens because plants are helpless and rely upon on us completely. I also have a petunia dish garden I need to remake, and I’ll be adding lobelias to it. I love their electric blue color. I hope I can do it tomorrow…
Self to Self: Whatever happens, it will be fine.
Self to Self: I’m sure you’re right.

The Heartbreak of Silence


pexels-photo-2865901.jpegpexels-photo-2865901.jpeg


Plants feel anguish tooPlants feel anguish too

Plants feel anguish too

It’s been a few months of “lockdown” now, and infection rates continue to rise due to so many people in the USA not understanding (or caring) how infection spreads. Until it touches them personally, they simply won’t learn. For those of us who have been taking the isolation seriously, it’s especially hard, as our isolation often feels meaningless against the actions of these louts who care not one whit for the lives of others and simply go about their day as if they’ll live forever and The Invisible Man In The Sky actually cares about them who care nothing for anyone else.

How does that parse, logically? Do these people truly think they’ll be “saved” when the Second Coming finally happens? Why would they be? Even according to their own scripture they’re the most horrible people in existence. There couldn’t possibly be room in Heaven for these detestable souls.

Those of us who are sincerely trying to not only flatten the curve, but to stay healthy through this pandemic, some of us are starting to show the signs of stress due to the extended isolation from our normal activities. I’m not speaking of myself so much here, as I’m a dyed-in-the-wool homebody and the types of places I wish I could go and hang out just don’t exist. When I first moved to Silicon Valley in the mid-90’s, I had it as a goal to create some kind of artist’s shared workspace, but the more I’d seen about this place, the less it seemed any kind of likely proposition unless it could’ve made $$$BIG$$MONEY$$$. And that didn’t jibe with its purpose at all. It would’ve been more of a creative incubator, a think tank, if you will, but it would’ve taken scads of cash to keep it operational, and I didn’t see myself as CEO of a non-profit having to constantly hold fundraisers and beg for money. Boo.

So, there’s that.

I live in the wrong area to make this happen. Maybe somewhere in Europe, like Berlin, which has a thriving arts community and is still strong in economy. London wouldn’t work, as they’re very tightfisted and have been going the way of the US since the days of Tony Blair. Well, earlier, obviously, but even the “extremely liberal” Tony Blair was very conservative when it came to economy and very hawkish when it came to warmongering (like Obama, which folks tend to forget due to all the genuinely great things he managed to enact in this country).

But I digress, as usual.

I’m writing this post because there were squirrels having breakfast on my porch when I went to go water the plants this morning. I opened the front door very gently, which is what I’ve learned to do in order not to scare any of the local fauna away, and, sure enough, two grey squirrels stood up on their hind legs somewhat guiltily and looked up at me in case I was ready to chase them away. I spoke very quietly and said that it was okay for them to eat, and they went right back to it. I took a bit of a video from my phone which I’ll try to add to this post somehow—though that tends to require three different apps to translate the file to the right format. That doesn’t seem right to me. Whatevs.

Getting back to the actual title of the post, I recently experienced a strange kind of setback that took me by surprise. I’ve been doing pretty well, all things considered. I’m a natural homebody, so the having to stay at home thing works for me. I don’t have many friends, so there’s not been much to miss there. I think I mentioned recently that it has stung that my brother and my daughter have had people to FaceTime with, wishing there was a friend in my life that was close enough to want to stay in touch with me regularly. The friendships I do have are all online and managed easily through social media interactions. Translation: a virtual “like”, “heart”, “hug”, or the seldom-used “comment” have transplanted any IRL friendship. As far as I’m concerned, the friendships are as real as they ever were. Make of that what you will.

The true friends of people with the Mediator personality type tend to be few and far between, but those that make the cut are often friends for life. The challenge is the many dualities that this type harbors when it comes to being sociable—Mediators crave the depth of mutual human understanding, but tire easily in social situations; they are excellent at reading into others’ feelings and motivations, but are often unwilling to provide others the same insight into themselves—it’s as though Mediators like the idea of human contact, but not the reality of social contact

This is what 16 Personalities has to say about my type

I was recently contacted out of the blue by someone I’d dated decades ago. I don’t really know why this person reached out to me, and though I asked, the reason they gave me felt flimsy. Nevertheless, we quickly fell into a pattern of speaking regularly on the phone, something I haven’t done since I switched over to an iPhone in 2012. I love my iPhone, and will never switch back to another platform, but its being an actual telephone has never been its strong suit, so I have become big on texting and social media interactions. Mostly texting, if it’s a person I actually want to be in regular contact with. Speaking on the phone felt novel and exciting again, and I felt on par with my family/roommates, with their regular outside contact (though no FaceTiming for me, sadly).

Always being one to question and wonder and dig into motives, after several days of this (perhaps more like a couple of weeks) I found myself asking this person if they were trying to qualify me as a potential future companion. The answer I received was an embarrassingly long string of the word “No”, with various emphases. Something like, “No, no, no, no, no…NO, NO, no, no, no…oh, God, no…”

I think a simple, “You misunderstand why I contacted you”, or, “Gosh, I’m sorry, but that’s not what I meant”, or, just one simple, “No” would have sufficed.

So that happened.

It’s not as though I’m seeking anything in particular. I’m not. I’m content. During my cancer treatment, I realized that I’d made a miscalculation by choosing to be single, as doing cancer without a companion is truly hard, but I managed somehow. I didn’t have a partner, but I did have my daughter, and one of my brothers was around as well, though he was incredibly busy. I spent a lot of my time in the hospital, anyway, so I guess the extra help I needed when things got really bad was there when I needed it. I didn’t get any visitors, save for when my brother came once after when they tried to clear my small bowel obstruction the first time, and it was such a nice surprise to see him there when I was so sore and could barely move. And my daughter visited me 2 or 3 times and even stayed with me when they thought I had a pulmonary embolism(!). It was a bit harder for her because she doesn’t drive and she had to take several buses to get to the hospital, but her presence was very welcome.


Yeah, not quite like this guy, but contentYeah, not quite like this guy, but content

Yeah, not quite like this guy, but content

Anyway, I’m pretty content. I’ve made myself be content. This is my life. I know I want to live. I have relationships with my plants, and I talk to them whenever I see them, water them, trim them back—and when I do have to trim them back I make sure to acknowledge the pain that must cause them, but I reassure them that it’s needful because this unhealthy part is taking energy away from the rest of the plant and they will feel so much stronger when it’s gone, and of course I apologize for having to do this thing to them.

Oh, I’ve also started to apologize to any bugs I end up having to kill due to their breaking my rule of not having any bugs in the house. I try to have that rule as a vibration that permeates the space, but sometimes they don’t get the memo and come on in. I’m not okay with taking a life, even a buggy one, so I always tell them how sorry I am about it. There are the rare times it’s possible to relocate them to the outside, where they are welcome, but like I said, it’s rare.

This is one of those coffee-and-scones posts, where you think you’re getting one thing, but I give you a platterful of ALL THE THINGS, so you need to sit down with coffee and a plate of scones just to get through it all.

Back to the heartbreak of silence…after that extremely vocal rejection, which I supposed should have been expected. (I mean, how else could one respond, really?) There followed a series of days of no calls. Radio silence. Huh. Our conversation hadn’t exactly ended on that awkward point, we had talked a bit more and ended on the more usual and banal, “talk to you soon”. I didn’t expect it to be the next day, or the next, as I knew I’d made things weird. This is typical for me, as I feel as though I see things as they are and I say so. Kind of in a Naked Emperor way, if you will. But the days dragged on, and it made me wonder: was this person feeling as though I had exposed them? What was so impossibly embarrassing about me thinking this that they had to cut off all contact? True or not, why would they just not call any more at all, when we’d been talking every day, sometimes several times a day, prior to this happening?

It made no sense. And it made me feel terribly sad.

The Heartbreak of Silence

Plants feel anguish too

It’s been a few months of “lockdown” now, and infection rates continue to rise due to so many people in the USA not understanding (or caring) how infection spreads. Until it touches them personally, they simply won’t learn. For those of us who have been taking the isolation seriously, it’s especially hard, as our isolation often feels meaningless against the actions of these louts who care not one whit for the lives of others and simply go about their day as if they’ll live forever and The Invisible Man In The Sky actually cares about them who care nothing for anyone else.

How does that parse, logically? Do these people truly think they’ll be “saved” when the Second Coming finally happens? Why would they be? Even according to their own scripture they’re the most horrible people in existence. There couldn’t possibly be room in Heaven for these detestable souls.

Those of us who are sincerely trying to not only flatten the curve, but to stay healthy through this pandemic, some of us are starting to show the signs of stress due to the extended isolation from our normal activities. I’m not speaking of myself so much here, as I’m a dyed-in-the-wool homebody and the types of places I wish I could go and hang out just don’t exist. When I first moved to Silicon Valley in the mid-90’s, I had it as a goal to create some kind of artist’s shared workspace, but the more I’d seen about this place, the less it seemed any kind of likely proposition unless it could’ve made $$$BIG$$MONEY$$$. And that didn’t jibe with its purpose at all. It would’ve been more of a creative incubator, a think tank, if you will, but it would’ve taken scads of cash to keep it operational, and I didn’t see myself as CEO of a non-profit having to constantly hold fundraisers and beg for money. Boo.

So, there’s that.

I live in the wrong area to make this happen. Maybe somewhere in Europe, like Berlin, which has a thriving arts community and is still strong in economy. London wouldn’t work, as they’re very tightfisted and have been going the way of the US since the days of Tony Blair. Well, earlier, obviously, but even the “extremely liberal” Tony Blair was very conservative when it came to economy and very hawkish when it came to warmongering (like Obama, which folks tend to forget due to all the genuinely great things he managed to enact in this country).

But I digress, as usual.

I’m writing this post because there were squirrels having breakfast on my porch when I went to go water the plants this morning. I opened the front door very gently, which is what I’ve learned to do in order not to scare any of the local fauna away, and, sure enough, two grey squirrels stood up on their hind legs somewhat guiltily and looked up at me in case I was ready to chase them away. I spoke very quietly and said that it was okay for them to eat, and they went right back to it. I took a bit of a video from my phone which I’ll try to add to this post somehow—though that tends to require three different apps to translate the file to the right format. That doesn’t seem right to me. Whatevs.

Getting back to the actual title of the post, I recently experienced a strange kind of setback that took me by surprise. I’ve been doing pretty well, all things considered. I’m a natural homebody, so the having to stay at home thing works for me. I don’t have many friends, so there’s not been much to miss there. I think I mentioned recently that it has stung that my brother and my daughter have had people to FaceTime with, wishing there was a friend in my life that was close enough to want to stay in touch with me regularly. The friendships I do have are all online and managed easily through social media interactions. Translation: a virtual “like”, “heart”, “hug”, or the seldom-used “comment” have transplanted any IRL friendship. As far as I’m concerned, the friendships are as real as they ever were. Make of that what you will.

The true friends of people with the Mediator personality type tend to be few and far between, but those that make the cut are often friends for life. The challenge is the many dualities that this type harbors when it comes to being sociable—Mediators crave the depth of mutual human understanding, but tire easily in social situations; they are excellent at reading into others’ feelings and motivations, but are often unwilling to provide others the same insight into themselves—it’s as though Mediators like the idea of human contact, but not the reality of social contact

This is what 16 Personalities has to say about my type

I was recently contacted out of the blue by someone I’d dated decades ago. I don’t really know why this person reached out to me, and though I asked, the reason they gave me felt flimsy. Nevertheless, we quickly fell into a pattern of speaking regularly on the phone, something I haven’t done since I switched over to an iPhone in 2012. I love my iPhone, and will never switch back to another platform, but its being an actual telephone has never been its strong suit, so I have become big on texting and social media interactions. Mostly texting, if it’s a person I actually want to be in regular contact with. Speaking on the phone felt novel and exciting again, and I felt on par with my family/roommates, with their regular outside contact (though no FaceTiming for me, sadly).

Always being one to question and wonder and dig into motives, after several days of this (perhaps more like a couple of weeks) I found myself asking this person if they were trying to qualify me as a potential future companion. The answer I received was an embarrassingly long string of the word “No”, with various emphases. Something like, “No, no, no, no, no…NO, NO, no, no, no…oh, God, no…”

I think a simple, “You misunderstand why I contacted you”, or, “Gosh, I’m sorry, but that’s not what I meant”, or, just one simple, “No” would have sufficed.

So that happened.

It’s not as though I’m seeking anything in particular. I’m not. I’m content. During my cancer treatment, I realized that I’d made a miscalculation by choosing to be single, as doing cancer without a companion is truly hard, but I managed somehow. I didn’t have a partner, but I did have my daughter, and one of my brothers was around as well, though he was incredibly busy. I spent a lot of my time in the hospital, anyway, so I guess the extra help I needed when things got really bad was there when I needed it. I didn’t get any visitors, save for when my brother came once after when they tried to clear my small bowel obstruction the first time, and it was such a nice surprise to see him there when I was so sore and could barely move. And my daughter visited me 2 or 3 times and even stayed with me when they thought I had a pulmonary embolism(!). It was a bit harder for her because she doesn’t drive and she had to take several buses to get to the hospital, but her presence was very welcome.

Yeah, not quite like this guy, but content

Anyway, I’m pretty content. I’ve made myself be content. This is my life. I know I want to live. I have relationships with my plants, and I talk to them whenever I see them, water them, trim them back—and when I do have to trim them back I make sure to acknowledge the pain that must cause them, but I reassure them that it’s needful because this unhealthy part is taking energy away from the rest of the plant and they will feel so much stronger when it’s gone, and of course I apologize for having to do this thing to them.

Oh, I’ve also started to apologize to any bugs I end up having to kill due to their breaking my rule of not having any bugs in the house. I try to have that rule as a vibration that permeates the space, but sometimes they don’t get the memo and come on in. I’m not okay with taking a life, even a buggy one, so I always tell them how sorry I am about it. There are the rare times it’s possible to relocate them to the outside, where they are welcome, but like I said, it’s rare.

This is one of those coffee-and-scones posts, where you think you’re getting one thing, but I give you a platterful of ALL THE THINGS, so you need to sit down with coffee and a plate of scones just to get through it all.

Back to the heartbreak of silence…after that extremely vocal rejection, which I supposed should have been expected. (I mean, how else could one respond, really?) There followed a series of days of no calls. Radio silence. Huh. Our conversation hadn’t exactly ended on that awkward point, we had talked a bit more and ended on the more usual and banal, “talk to you soon”. I didn’t expect it to be the next day, or the next, as I knew I’d made things weird. This is typical for me, as I feel as though I see things as they are and I say so. Kind of in a Naked Emperor way, if you will. But the days dragged on, and it made me wonder: was this person feeling as though I had exposed them? What was so impossibly embarrassing about me thinking this that they had to cut off all contact? True or not, why would they just not call any more at all, when we’d been talking every day, sometimes several times a day, prior to this happening?

It made no sense. And it made me feel terribly sad.

My Strange Week of Pain


pexels-photo-3807730.jpegpexels-photo-3807730.jpeg


I'll put it on my calendarI'll put it on my calendar

I’ll put it on my calendar

I’ve had this pattern ever since my cancer surgery back in the summer of 2017, where I get this terrible cramping that intensifies over the course of about 10 days, to the point where I’m really suffering and can’t stand the act of sitting up—until I can barely stay off the toilet for a day or two. In case I haven’t mentioned it before, I had colorectal cancer, and my tumor was at the very base of my sigmoid colon. That’s where the cramping is focused, but it emanates outward from there, and ends up involving my entire abdomen. The build-up to the last day is excruciating, as if I had some kind of mondo-awful food poisoning, but then it starts to fade back and become manageable.

Opioids don’t help, as I seem to have the kind of metabolism that’s resistant to such drugs and am only susceptible to The Strongest One: Dilaudid. And taking it orally doesn’t do nearly as much as taking it via IV at the hospital, so I just don’t bother. All the various kinds of norco, oxy, and morphine I’ve tried just do zilch, and it’s just as well. There’s nothing sadder than a middle-aged junkie.


It's called "practicing" medicine for a reasonIt's called "practicing" medicine for a reason

It’s called “practicing” medicine for a reason

So instead, my pharmacology has focused on drugs to try and control the spasming: various anti-siezure medications, muscle relaxant, along with the anti-depressants and an anti-anxiety meds to help me with my other issues that may or may not be related to my misadventures with cancer and cancer treatment+its aftermath.

Nothing seems to have worked that well. The majority of it is about powering through as best I can, and since I really can’t that well, I’m officially disabled for the rest of my life. Boo. Even this, I had to fight the Social Security Administration over for nearly 3 years.

It’s both a relief and a drag.

My Strange Week of Pain

I’ll put it on my calendar

I’ve had this pattern ever since my cancer surgery back in the summer of 2017, where I get this terrible cramping that intensifies over the course of about 10 days, to the point where I’m really suffering and can’t stand the act of sitting up—until I can barely stay off the toilet for a day or two. In case I haven’t mentioned it before, I had colorectal cancer, and my tumor was at the very base of my sigmoid colon. That’s where the cramping is focused, but it emanates outward from there, and ends up involving my entire abdomen. The build-up to the last day is excruciating, as if I had some kind of mondo-awful food poisoning, but then it starts to fade back and become manageable.

Opioids don’t help, as I seem to have the kind of metabolism that’s resistant to such drugs and am only susceptible to The Strongest One: Dilaudid. And taking it orally doesn’t do nearly as much as taking it via IV at the hospital, so I just don’t bother. All the various kinds of norco, oxy, and morphine I’ve tried just do zilch, and it’s just as well. There’s nothing sadder than a middle-aged junkie.

It’s called “practicing” medicine for a reason

So instead, my pharmacology has focused on drugs to try and control the spasming: various anti-siezure medications, muscle relaxant, along with the anti-depressants and an anti-anxiety meds to help me with my other issues that may or may not be related to my misadventures with cancer and cancer treatment+its aftermath.

Nothing seems to have worked that well. The majority of it is about powering through as best I can, and since I really can’t that well, I’m officially disabled for the rest of my life. Boo. Even this, I had to fight the Social Security Administration over for nearly 3 years.

It’s both a relief and a drag.

Dear Diary, Feeling particularly empty today…maybe it’s just COVID blues?

I don’t know about you, but I’m getting tired of using hand sanitizer everywhere I go; having to wear a mask every time I go out; having to disinfect my shoes and purchases every time I come in…being constantly vigilant in order to not become ill or to (gasp!) become a carrier.

I suppose it’s bad enough that I have no friends, other than a handful of very nice people that have incredibly busy lives. It’s tough to make new friends at my age. Making friends is a commitment. It’s a thing you nurture with time and deliberation. By the time one is in one’s middle age, the difficulty lies in having a set life: friends and family routines are usually solidified now and adding someone new might not be welcome. If it is, there can simply be the difficulties of scheduling.

Busy, busy, busy!

I have attachment issues as part of my mental and emotional difficulties (along with clinical depression and generalized anxiety disorder), so this is extra challenging for me. It’s hard for me to remain logical and understanding of these difficulties when they arise. I always think it’s something I’ve done. Sometimes it is something I’ve done, and I never get to find out what that is. I just get cut off—no more invitations to a person’s events, no more contact, nothing. Ghosted.

So there’s that, too.

It’s not like I’m a “square peg” exactly, but I’m clearly “different”

My most recent ones are fairly recent: one of them happened a few months before I found out I had cancer, and the second one while I was undergoing cancer treatment. Mentioning this, it must sound as though the fact I was suffering from cancer I should not have had to also suffer friendship loss, but what I actually mean to do is simply recall the timing in my life; on my personal roadmap. It’s possible I could mean both. When I connect the dots and timing, both of them stem from comments I made concerning what comes off as my brutal honesty, though if these people were really my friends in the first place these comments should not have had this result.

I do love them. I always have.

And for the one person, I have to say to myself, “Good riddance!”, since that was apparently a fake friendship based on some sort of fantasy the person had about me for many years. I’ve lost what little respect I had for them entirely, as they have no principles. Yuck. As for the other, it seems to me they contradicted themselves in their actions versus their earliest words to me, and I again have to decide it’s okay to let our paths diverge.

Not that any of this means anything at this moment in time, what with social distancing in effect for who knows how much longer. And now, there’s also a curfew. Not that I needed or wanted to go out all that much, but having the right to do so taken away from me makes me bridle. It doesn’t matter whether or not there’s a “good reason” for these things. This is how I feel, and feelings don’t operate within the boundaries of logic. That’s the point of feelings.

Nobody knows the true me

Here Are Some Good Things In My Life

I’ve been trying to write this post since I wrote the last one! Ugh. I took a video of a few places around my home to show you my bird feeders and a bit of my gardening, but then the videos took forever to upload.

Here’s a short video I took of inside my house, just to show you where I spend the majority of my time. I’m a huge homebody, having both clinical depression and general anxiety disorder, and some things that help me from spinning out are doing little things around my house to keep it in order, along with cooking and care-taking.

A Tour of My Home

Take a peek at my little slice of paradise

The plants and the birds are my friends. I look out for them and look after them. I happen to believe all creatures are sentient and aware of what it means to be alive, and my belief extends to the plant world.

And check out my flowers!

I let the main bird feeder in the back patio go empty for half a day, and yesterday morning there were two red-headed finches, a male and female, on the top of one of the front door wreaths, peeking into the living room, as if to say, “Hey, we see you in there. Can you help us out?” My brother thought they might be looking to nest, and that’s a possibility also—though I think it might be rather late in the season for that. I also think my way of looking at it is much more fun.

Oh, and there’s a hummingbird feeder…or five

Thoughts on The World

As you can see, I don’t just sit around and do nothing but complain all the time. I was trying to explain my viewpoint to my daughter, who gets frustrated with me every time it seems I’m passing judgement on a person or expressing distaste for a situation.

I’m a social anarchist. In my ideal world, if I were made President, my first act would be to abolish all laws. I’m far left of Bernie Sanders. I’m left of Ghandi, for cryin’ out loud!

Naturally, I’m also a realist, and recognize that there is both selfishness and stupidity in our populace, along with a healthy dose of insanity, so this wouldn’t work. Therein lies my frustration with this world and the people within it. Any criticisms I spew and subsequent depression or anxiety about this world or life in general stem from this disconnect.

She seemed to kind of get it after I explained it in this way. My most fervent wish for the world is that it could be more cooperative, balanced, and understanding—I include all living things in this testament. But there are simply limits to this at this point in time. Perhaps mankind will end up eating itself at some point. I’m not sure if that’s a good thing or not.

Coronavirus: The Good, The Bad, and The Ugly

My mind has been aswirl with various thoughts this week as we’ve been in lockdown for a month now. At least here in Silicon Valley, we can still go for a walk outside. Many places don’t even allow that. Here, they’ve recently added that when you do go out, you must wear a face mask at all times. We no longer know who might be carrying the virus and spreading it to others. And of course, we have large masses of people in Michigan protesting staying inside altogether, which was such a shocker—really, Michigan?! WTF?!

Our beautiful state flower in full bloom

But back to my post. Living in California, I was hearing about how we have food rotting in the fields due to not having workers out there to pick the food. That’s going to trickle-down pretty soon into empty produce aisles at your local supermarket. We also are having shortages in the trucking and shipping industries, which will create shortages of other kinds at stores. This is all so wrong, but it will highlight the main point of this post:

The Bad

The way we “do food” in America is a holdover from WWII. Our factories retooled, and what we have now is making our population fat and unhealthy. If you look at the statistics, you see the trend start in the late fifties and increase through to the eighties when women began to leave the home and go to work outside the home, requiring more and more convenience foods that are easy to ship, easy to store, and easy to cook. It’s this last that has made Americans some of the unhealthiest people in the world. Couple that with the long commute times due to the housing crisis, and increased pollution due to factory waste, distribution networks, and commuting, and you get a picture of a very damaged America.

There were also corporate conglomerations that took place during this same period that made the billionaire class possible, and purchased the Congress we have now. (They own foods and pharmaceuticals, advertising, news and entertainment. Literally, every aspect of American life.) If I were better at statistical analysis and making graphs, that info would be posted right here –> and you’d see what I see, which is a clear picture of America being this well-oiled business machine, designed to consume and to be consumed by its machines of commerce. We no longer park our cars in our garages, because our garages are filled with “stuff”, and we need storage units to store more of our “stuff”, and shopping is our biggest hobby, and every town and city looks the same, due to all the strip malls with all the same stores.

The Good

It’s my hope that through the disruption in our food supply chain we will see the need for our food to be grown sustainably, and that means locally: no more washing of eggs; no more pasteurized milk; no more high-density feedlots. No more corn subsidies. Large agribusiness no longer exists in this country, so we cease the environmentally damaging practices that harm our waterways, groundwater, and air. Food supply is handled at the state and county levels, and it’s assured at those levels commensurate with the population. Which leads me to the housing crisis.

These are the lucky ones. They have tents.

The Ugly

My dudes, we need to fix this. And I don’t know how. Well, perhaps I know how, but I don’t often get much agreement from my local fellows.

There is so much noise out there on this topic, but there seems to be no political will, at least not in Silicon Valley. Here, the actual homeowners keep voting down solutions, worried about their own home values going down. It’s cold, it’s heartless, and it’s cruel. The homeless people aren’t allowed to vote, because they have no address. So they have no say in a matter that affects them so deeply. There needs to be some way that they can be associated with an address, like a soup kitchen, or the County Social Services Agency or something so they can be allowed to vote and be heard.

We also need more affordable housing in general. I’m permanently disabled now, due to my cancer surgery causing an injury that can’t be reversed. It’s called Ani Levator Syndrome. It’s unpleasant. I get a fixed amount each month, and I’m on Medicare. My Medicare premium is taken out of my disability payment before it’s deposited in my bank. In addition to that, I have co-pays and a deductible, of which I wasn’t aware—all of the info I was given literally made it sound like everything was covered except dental. (I desperately need to see a dentist soon. I have at least one tooth that’s getting dangerously close to needing a root canal, and I want to avoid that. I think I have three teeth that require drilling and filling, if not four. It’s been years since I’ve been to the dentist, because it’s so hard on my neck and jaw. I get migraines easily, and lying back in that chair for any length of time is going to be excruciating.)

Plus, since I have no coverage, I’ll be paying cash, and I have no money. I can barely cover my rent now with my disability payment. If I want dental coverage, that would be an additional monthly premium, and additional deductibles and co-pays. On a fixed income. In an area where I can already barely cover my rent.

Now, I’ve always been a bit Bohemian and minimalist, not much of one for collecting “stuff”. I do purges and reorganize my things on a regular basis when I’m feeling like I’m being smothered with too many things. I like order and tidiness. I like my closets and drawers and cabinets to make sense. Not having too many things has also been great because I’ve had to move over and over again. I’ve fully moved around 50 times in my life. I’ve never lived alone, as I’ve never been able to afford an apartment on my own. I have always had roommates in a house or an apartment.

I’ve also had chronic pain most of my life, and my career path has suffered. I’ve lost a lot of jobs due to taking too many sick days. It’s bothered me that my pain wasn’t taken seriously and that I had no legal protections to help me keep these jobs. My reputation also suffered, as I was painted as simply unreliable, and possibly a substance abuser, as opposed to a person who was genuinely ill and struggling.

A bit self-absorbed, are we?

Okay, I’ve made this all about me again, and that wasn’t my intent—my point was to illustrate how much empathy I have for the homeless, as I’ve been very close to their position many times. I lived in my car for a couple of weeks many years ago. I had a full-time job and a bit of money in the bank. It took me a while to find a place to live that I could afford–and this was in 1986. I was making above minimum wage, working full time in Berkeley, and I to had to move to Palmisia in Hayward which still had gang violence. The commute for me each morning and evening was bumper-to-bumper traffic each way. I rented a bedroom out of a house because that’s all I could afford. In 1986.

1986!

Affordable housing in the Bay Area is not a new problem!

The ugly truth is that not enough people care about the lives of the people living on the streets to actually do something for them. They’re seen as misfits to society, drug abusers, users, liars, and thieves. If they are, it’s a reaction to society and the way they’ve been treated. There’s probably a small percentage of them that are incorrigible, but the majority of them are just trying to get by and live as pleasantly as they can. I’ve heard statements such as, “I wish they would go away”, and, “We should give them a bus ticket to someplace else”. Cruel, harsh statements, that take away both the humanity and the agency of the homeless.

Whether we like it or not we are all in this together

We are a society. We are one people. The homeless are a part of this society, and in fact, are a direct result of the way that our society currently functions. It’s our issue to solve, like it or not. Whether it’s through an income tax, a sales tax, a property tax (I like this one), or a combination of all of them, we need to house all of the people in our society. Housing is a basic human right, and leaving these people to suffer is a crime against humanity.

Welp, it’s been close to a month now: how we doin’?

TRIGGER WARNING. I TALK ABOUT DEPRESSION AND SUICIDAL THOUGHTS. IF YOU STRUGGLE WITH THESE, PLEASE GET PROFESSIONAL HELP.

I’m not an expert on the resources available, but I feel it would be irresponsibe for me to discuss this topic without also leaving some kind of link, and this one I’ve heard great things about: National Suicide Prevention Lifeline. You can call them at 800-273-TALK (8255)

The quarantine has had the effect on me of underscoring just how alone I am in the world. I have no connections. Nobody to video chat with. Nobody to check in on or visa versa. My roommates do. But not me.

Sooooooo, I must confess, I struggle with depression. Like, baaad. Like, suicidally bad.

I go to this place where I feel trapped in a world that’s only interested in flimsy, unimportant things, such as gossip and shopping, wealth and sex–and it leaves me cold. Or, people can only talk about casual things, and I don’t know how to have these conversations. I have trouble making meaningful connections with people. I feel like, I’m “a lot” to “deal with”. As if people have to gather themselves together in order to check in on me with a text or a call. I end up feeling unauthentic and shallow, disconnected and lonely.

Then I’m in a place where not only can I not connect, but I am some kind of burden to society, a freak of nature, a huge misfit, unable to be my true self with anyone, anywhere.

It’s at this point where I start to actually “plan”, if you could even call it that. I imagine distancing myself from everyone I know, going far away, being remote–nobody will check in on me for several weeks or months anyway, so it will be easier then.

That’s as far as I ever manage to get. But it does something to me. I can’t say I ever “come back” from these…episodes? I’ve had years of therapy, and it didn’t really help. It sort of helped. It felt like I was paying someone to listen to my problems, since I have no friends. That’s what therapy was for me. It felt lame.

Oh, I have attempted. Twice. The first time, I was 15, and I took a bunch of my mom’s Valium. It probably wouldn’t have killed me, which is actually worse. I got medical attention, was administered ipecac, barfed my guts out, and drank a lot of warm water to flush my system.

The second time, I was 23, and I was serious about it. I won’t go into extreme detail, except to say I took an entire bottle of OTC sleeping pills, which would have done the job. I planned to just slip away in sleepy peacefulness, but for a telephone call I made to a couple of family members to hear their voices one more time. I got the answering machine and left a message.

Here’s where shit got serious: my brother called me back. The phone was right next to my head. Not on a table. On the floor. I slept on a mattress on the floor, and the phone was literally next to my head. The phone rang 5 or 6 times, the answering machine picked up, my brother left a message, and he hung up–and the entire time I was trying to pick up the phone. I was unable to control my body. This scared me shitless. I managed to dial back the number, but by that time, he had already left the house again and I got the machine. In a panic, I just said over and over, “Pick up the phone! Pick up the phone!”

Nope. Too late. I knew I was going to die for realsies and I realized I for realsies didn’t want to die. Not yet, and not in this way.

I went to the ER, where I most willingly drank the ipecac, and gulped down all the water they gave me. When I finally did throw up (they kept asking me what I had taken and how much, and they were skeptical when I told them I took “32 pills”. I knew this, because that’s how many pills the bottle held) a giant ball of stuck-together pills came out with a giant CLANG into the metal dish they had for me. This was, for me, proof positive that I was accurate and not exaggerating. I remember giving the attending nurse a look that said, “See?! I TOLD YOU.”

This experience was truly terrifying for me, and there need not be much concern for me actually doing this awful action of killing myself in the future. But the depression still gets to me and I can’t seem to find a way to escape that particular beast.

Here’s the part where I tell you what I really think of the world and I reveal my belief of reality: we are trapped in a simulation. A game. It’s only partly what you make of it, so some people do get to have a grand old time. But there are people whose paths and life events are already chosen in some way. There are certain tasks one needs to perform, or challenges a person has to face to get to the next level.

I’m stuck on this level, and I can’t seem to figure out what the fuck I’m supposed to do. It’s driving me nuts. I need to be more thoughtful about this kind of language: I don’t like that I can’t seem to figure out how to solve this level.

Sadly, this belief has ruined certain things for me, like video games and cosplay, because I’m already fucking doing that. I have this shitty, sickly, avatar, that’s tiny (but kind of cute), with multiple spinal injuries sustained early in life, so I’ve spent nearly my entire time on this mudball in serious fucking pain, and I can’t figure out how to make the world better, because I think(?) that’s my mission, but nobody gives a shit about what I have to say, because I’m too serious, and therefore boring as fuck, and my intensity is apparently too much for most folks.

I can’t help but think that if I were male and/or tall, these traits would be seen as charismatic. They’d be gifts.

But no. I’m just here, looking for the right NPC, or a talking raccoon to follow into the woods for a clue, or something that will help me have that “aha!” moment so I can figure this shit out and get past whatever it is that seems to be blocking me. Right now, I can’t even see it. I can only feel it.

And it suuuuuuucks.

Hip-Hip, Hooray! What a frustrating day!

This is purely where I’m going to vent my spleen here, so if you’re against such things I suggest you look away now. Like, right now.

I managed to get 2 of my 7 daily Rxs filled. Some of them I don’t quite need yet, as I was getting them all filled on a regular basis, but not always taking them when I was hospitalized over all those many months. So, thankfully, I have a few of the most expensive ones on hand still. But I was still surprised by a $25 total when I’m not supposed to be paying more than $1.30-$3.00 per Rx on the plan I’ve been put on. I used the suggested pharmacy by said plan (and no, they won’t be getting any free advertising from me here). I didn’t argue at the time, as I was already suuuuuper aggravated from struggling with getting various technological aspects of my new online world to play nicely with each other. I can’t spend a lot of time doing this without my body going into a sort of personal lockdown, with either, 1) painful migraines, and/or 2) painful rectal cramping. Hooray!

But, Doctor, I need them!

I wasn’t a happy camper when I had to head over to said pharmacy and was just in a lot of pain, so I grabbed what I needed and headed back home to get a cozy as I could. Luckily, it’s raining today (a strange thing for the SF Bay Area in April, though not unheard of).

Here’re the specifics of what’s paining me tech-wise:

  • I am using WordPress.com to host this blog (obvi)
  • I am using YouTube to host video content
  • I am using IFTTT to have YouTube automatically post new videos to WordPress
  • I am using Anchor.fm to record a bedtime story podcast (I used to use a different tool)
  • I use Feedburner to distribute my podcast to iTunes
  • I am using MailChimp to create and manage a mailing list, with a signup form here on this site (hopefully you’ve already signed up?)
Having a sort of…well, you know. A day.

Here’re the issues I’m running into:

  • Anchor.fm keeps telling me that my feed hasn’t been correctly redistributed, even though Anchor.fm and iTunes both show all of my episodes, as does Feedburner
  • IFTTT recipes have not been posting at all, or if they do, the content has been incomplete, requiring me to create a duplicate, scheduled post in WordPress
  • MailChimp’s tools have been tricky to manage, and they don’t explain the fact that when you indicate you want to create an automated email, you still have to add RSS merge tag fields to your template. Now, why would that be? Surely, if your aim is to create an automated campaign, the templates available should have some kind of pre-populated information and you just jump in and edit them, yes?

But, oh no. No.

So I’m going to sit back and have a glass of wine now. Fuck this noise.

Public-health physician urges more targeted and less of a “shotgun” approach to stemming the pandemic

I’m reblogging this to hopefully widen the audience as I was heartened and shocked by some of the views expressed by the physician interviewed. How we are handling this epidemic could be vastly more intelligent and effective. What we’re doing at the moment will create unintended economic consequences that will continue for months after we’ve reestablished the health of our people.

This new article largely echoes the one below: it emphasizes the need to get healthy people back to work, which requires more testing, and to…

Public-health physician urges more targeted and less of a “shotgun” approach to stemming the pandemic