If you are wondering where the formatting is, it's not an error. Right now I'm kind of grooving on the concept of a one-page site. Scroll down for more info, including the topic of privacy.
Love is difficult to understand or describe, which can be challenging if you're trying to make it foundational to your worldview. My former partner used to say, "Attention is love," which I think captures some truth. But attention can also be directed to what you hate or fear. Classical philosophers defined three kinds of love: eros (erotic), phileo (brotherly love / friendship), and agape (unconditional, altruistic love). Some of us would consider love to be letting go of ego and letting others in. The paradox is that you have to be capable of loving yourself in order to love anyone else.
I'm not going to write a treatise about love today. It's a strong and a loaded term, and it's one that gets misused carelessly. I am just going to say that for the purpose of this site, love is generosity. Love is sharing what you have. In my case, all I have to share right now is information. I don't know whether it will be helpful to anyone else, and I don't have a good way to ensure that it reaches the people who need it most. I am working with the intention not to cause harm. I've heard from a lot of people this fall who feel isolated and afraid in the same way that I do -- but I'm not sure where (if anywhere) we find common cause. Originally I conceived this site as a blog. Probably eventually it will be a book.
Sun Jun 9 14:18:37 PDT 2024
For the first time in several months, I wandered off to spend about an hour and a half on this humid Sunday afternoon listening to music with my headphones on.
Nothing that would impress a record collector or a righteous punk rocker. Just mixes I make on my own out of random pop melodies with transparently obvious theming. I would share the links here, but I doubt they'd be interesting or meaningful to anyone else but me.
Ostensibly I was on a mission to find and locate the Jiffy Lube in this tiny rural town (my car is in need of an oil change) and check its hours, but really it was just an excuse to be outside and play some songs. Used to be one of my favorite things to do, for those two years after COVID when I lived alone in Portland and found myself frighteningly isolated. To the extent that I stayed sane, having music playing constantly (whether I was at home, in my car, or out on a walk) was part of how I did it.
One odd thing about the past year is how much less I have felt the desire to listen to music, or felt much emotional connection when I did. It may be a right brain/left brain thing. Or it may be negative associations with the person who kept tabs on me on Spotify for many years. Same with going out. Saw Chatham County Line last month. After nearly 20 years on the alt country circuit, they were better than ever. Same harmonies, rich and varied instrumentation, and a sizzling live fiddle solo in their finale. But I could barely keep my eyes open.
I've lost my ability to stay out late with the club kids and have a good time. Probably for the best, but I'm not quite sure what my social life will look like otherwise. There are always hiking and book clubs, I suppose. Maybe game nights if I get truly desperate. But I wonder about the neurochemistry behind this. If it's just me slowing down and getting old, or if it's a more profound shift connected to the missing uterus and the change in my hormonal profile.
Which has been profoundly welcome, for the most part.
Still too soon to know for sure but I would not have taken the gamble of moving back West had multiple doctors not assured me that fluctuations in estrogen and progesterone levels could cause exactly the type of prolonged insomnia and mood symptoms that caused me to go off the rails before.
A lot of people will probably never be convinced. I am not going to celebrate until another 18 months have gone by. Or better yet, another five years.
In the meantime, I feel basically like myself except perhaps a little more muted, more timid, and more shackled by reality. Still have a sex drive. Still get hit on by guys. Have a lot of chronic pain from a workplace injury, as well as allergies that make it difficult to breathe, and some days the fatigue is overwhelming. Live with a more profound awareness of anxiety and uncertainty than I've ever felt in the past. But I would take all these negatives in a heartbeat, just to stay in my own right mind.
Hoping that I get to.
Every trace of my past self, every moment of feeling confident, inspired, or bewitched by a tune comes with scrutiny.
I've been through all this before. I remember the early days back in Charlotte, North Carolina, when I was afraid to show individuality or let my freak flag fly in any way, concerned that it might be labeled a "symptom." Got past that eventually. Having medication that worked reliably was part of what made the difference. I didn't mind having a diagnosis, because I had a prescription drug treatment that worked like a miracle cure.
Truly bad luck that Eskalith was taken off the U.S. market in 2008, the same year I moved back North and went off birth control. Any one of those three variables (or more likely all three combined) could have been what changed the equation for my mental health. But I didn't know that when I made the move. I had rock solid faith then. Also a strong sense of who I was and of what I was capable.
Now it's all a giant unknown.
Sun Dec 24 19:14:43 EST 2023
First off, it's not really a rule-based religion:
"Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind.
This is the first and great commandment.
And the second is like unto it, Thou shalt love thy neighbour as thyself."
That's it. The rest is open to interpretation. And of course, your definition of love.
There is nothing at all in the Gospels about tithing, or obeying your pastor, or going to church every Sunday. I have thought for a long time that a community meal amongst friends, accompanied by prayer and spirtiual inquiry, would be closer to Jesus's original example. That was how Shabbat services in college worked -- I wasn't Jewish, but I went with my friends. The food was vegan and delicious.
That is not to say it isn't a demanding and rigorous faith, when taken seriously. Make no mistake, Jesus had plenty more to say -- but we use our own judgment and discernment to determine how to act. And it is expected that we will make mistakes along the way. The reason it's important to have a community of believers surrounding you is that othwerise, the emotional labor involved is exhausting. Unconditional love (especially for one's enemies) tends to deplete all available reserves. This could probably be summed up with game theory. The metaphor of being part of a living organism -- the body of Christ -- is perhaps most intuitive. I would go one step further and say that God and the cosmos are a living, self-aware entity -- either that, or it's a simulation, or that the historical Jesus was a time traveler, or who knows what. But my belief is that we are cells in an organism. It's just SO far outside the scope and scale of our comprehension that we might as well be bacteria in a sneeze.
So why Christianity at all? Why not some other religion, or none at all?
I am not going to get into the supernatural except to say that I find it difficult to believe in its early days, the faith could have found adherents without miracles. Very few people line up for moral teaching. Even fewer are willing to stake their lives on it. The crowds came to see Jesus (and later the apostles) miracles -- most often, miracles of healing.
Likewise, the promise of the afterlife. If you are a skeptic, you are not going to be convinced by anything I have to say.
As far as what Christianity, in its OG form, has going for it, I think two things:
# 1. A family that welcomes all, greater than blood or marriage or tribe.
# 2. Holding space open for peace, forgiveness, and reconciliation.
On every level, from the personal to the geopolitical. All I can say is that I have seen this actually work. Although it doesn't always work.
You can point to plenty of examples of wars and evil waged in the name of religion (mine included). Silver crosses may keep vampires away, but they don't protect from predators, swindlers, or mental enslavement. Problem is, right now we kind of need something. If you don't believe the two goals above are attainable, or if you are comfortable enough that they hold no interest for you, all I ask is that you understand and respect that these ideas matter a great deal to some of us.
With God, (a living organism, remember?) all things are possible.
Sun Dec 24 20:45:34 EST 2023
I definitely am not here to wallow. Just to say that right now, I am "the least of these."
Why and how? Pandemic social isolation plus debilitating chronic illness (see the long post below) plus a series of frightening events (including but not limited to arson and home invasion) that caused me to pull up stakes from where I had a more or less stable existence in Portland, Oregon. I'm not going to speculate as to who or what was responsible, just that it's eye opening to find yourself homeless and learn just how quickly your savings can disappear.
Since August I have been living with my parents. I am working on rebuilding. I am deeply grateful to have my health back. And I am equally grateful to be reconciled with people in my life that I thought were gone forever.
You will notice that there is a lot on this site about faith and spirituality. I am probably not very convincing as a witness. People like to model their lives based on those who have it all together. I'm not there yet. I certainly don't have a picture perfect life back. And I wouldn't be very surprised, frankly, if that never happens. I'm not an other-directed person. For many years, I went smack dab in the opposite direction from Christianity, but I never lost my faith in a higher power. That faith gave me... for just over 20 years... a near total immunity from fear.
Over those years, I didn't know who or what God was -- the name or the gender -- but I believed that God had my back. And so I took chances. I chose not to settle. I took the road less traveled and completely had a blast.
Not really in a "grasshopper surrounded by ants" way, either. I tried to live by my convictions, even while I was figuring them out on the fly. For years I identified as a practicing pagan. I still believe that God, and in particular the concept of the Holy Spirit, encompasses every and any gender and none at at all. Ruach and Shekinah are two of the names for the Hebrew Divine Feminine. These days, I pretty much try to use the language around prayer and spirituality that Jesus introduced in his teaching. Mostly because I believe the Resurrection is real and if Jesus and I meet in the future, I wouldn't want Him to be offended or confused.
It's Christmas Eve, which is when my family traditionally celebrates. In another few hours, we'll head to a service.
At some moment in this past horrific year, I lost my immunity from fear. I don't take anything for granted anymore -- not people, not relationships. Even being needed and valued feels like a privilege, when you find yourself outside and out of bounds. I have never in my life been more dependent on faith, but also more terrified that God would let me down or cease to be present.
I feel like a refugee in my own country.
So yeah. I remember a time when life was more comfortable and safe. When faith felt like an afterthought instead of a lifeline. I would be lying if I said I didn't miss that comfort zone. I have fewer choices now but a lot more time to reflect.
Am trying to remember that everything experienced is an opportunity for learning and grace. And that the definition of bravery is feeling terrified but doing the right thing anyway.
Fri Dec 8 21:56:51 EST 2023
An alternate version of this article is also available on Medium, although it is not listed on my public profile.
Just over one year ago, I was getting ready to leave on a working vacation in Phoenix, Arizona. I was excited to see family and maybe even recruit a cofounder for my technology startup. I went to bed early. My suitcase and laptop were already packed. I woke up a few hours later from a nightmare, gasping for air. I don't remember anything about the nightmare, except that it left me with the worst feeling in the world--dread mixed with despair. I felt like I was suffocating. I grabbed my bags and ran outside to my car, where I dozed uneasily before driving to the airport in the wee hours of the morning.
Because I'd had plumbing work done in my condo earlier in the day, my first thought was that there could be a contaminant in the ventilation system. What I didn't realize until much later was that I was experiencing a classic panic attack, most likely caused by PMDD.
The symptoms of PMDD (premenstrual dysphoric disorder) had intensified over several years even as the fibroids (benign tumors of the uterus) got worse, eventually progressing into severe anemia and hemorrhage. I was no stranger to mood swings and PMS, but with PMDD I found myself weeping and suicidal for no reason. Bouts of insomnia are another classic symptom of PMDD but it still took years to make the connection. That is one of the challenges of living with invisible illness--inside a medical system that separates physical from mental health. Truthfully, my illness wasn't quite invisible. I remember staying after a meeting one time at my coworking space to clean bloodstains from the chair where I had been sitting. I got the diagnosis in 2016, just one month before moving across the country from rural Massachusetts to Portland, Oregon. Fibroids soon progressed from minor inconvenience to a serious health issue, but I was reluctant to give up the dream of having biological children.
It took two surgeries (a laser hysteroscopy in the fall of 2021, followed by a full laparoscopic hysterectomy with ovaries intact one year later) to address the core problem. During that last year, I was always tired and slept as many as 12 hours each day. I had a "never-ending period" that lasted approximately six months. In the weeks leading up to the second surgery, my iron levels were so low that I had to come into a clinic once per week to get an iron transfusion. My doctor told me that when I had my uterus removed, it was enlarged to the equivalent of being five months pregnant. I was 45 years old.
I wish I could get those seven years back, but I can't.
The next best thing I can do is share what I learned. Here is my shortlist:
# 1 - You can keep your ovaries after a hysterectomy.
# 2 - Anemia doesn't just cause fatigue--it can cause hair loss, heart irregularities, bruising, scabbing, and even bone fractures.
# 3 - If you take iron supplements along with your morning coffee, the caffeine will interfere with iron absorption. You will also need to take Vitamin C with most over-the-counter iron supplements, and with vegetarian sources of iron such as chickpeas and tofu.
# 4 - The hormone-based medications used to treat fibroids can change your personality.
# 5 - Ditto for PTSD.
# 6 - Also IUD's.
# 7 - Worst of all for me--progesterone when prescribed as HRT.
# 8 - Having a hysterectomy will shift your hormonal balance.The ovaries continue to produce hormones, but the uterus plays a crucial role in regulating this cycle. In part because the surgery was so successful and the recovery was nearly pain-free, the changes to my mood and sleep patterns (including my first-ever panic attack) took me by surprise.
- Give yourself plenty of time to recover after a hysterectomy. Go easy on yourself--not just physically, but mentally and emotionally. Avoid travel, major work commitments, and new stressors for at least the first two months.
- If you do pursue HRT, or try any new type of medication as treatment for PMDD / PME, be sure that someone who knows you well can follow you or check in with you. Synthetic and bioidentical hormones can be life-saving and make a tremendous positive impact for patients, but they are not "one size fits all." Similar to steroids or SSRI antidepressants, they can cause intense side effects--even psychosis--in some patients.
- Always be sure you have access to primary care in your local community. ACA coverage varies greatly from state to state.This is especially important when undertaking a temporary move (for a relationship, a job, a study opportunity, or caregiving) as women often do. Double check before you sign a lease or give up your old living space!
What I know from personal experience was that the gamut of hormone-based treatments for fibroids (IUD, depo provera, and progestin) changed my personality and my interpersonal style--to an extent that was noticeable to others. While I was waiting for surgery to remove the benign tumors in my uterus, I was losing the equivalent of two blood transfusions each month. I absolutely needed those meds, but I wish someone had warned me that they could make me combative and irritable. Around the same time that I first ended up in the ER from hemorrhage, I had my car stolen, my computer network hacked, and a break-in to my apartment. The events were deeply unsettling, and I was concerned that someone I knew might have been connected to them. I shared my concerns with friends and colleagues and was labeled paranoid.
Later, I tried to explain to the same people that I was on heavy medication at the time of the accusations. Some bridges were rebuilt, but not all. I think some people assumed that my description of fibroids, a physical ailment, was just a cover story for mental illness.
My overwhelming conclusion is that it is impossible to separate mental health from physical health. Many conditions that may be identified as mental health diagnoses turn out to have physical causes (Lyme Disease, brain tumors, stroke, Parkinson's, and long COVID) or stem from adverse drug reactions. I always knew that hormones and my cycle played a role in my moods, but it wasn't until a failed experiment with progesterone as HRT, six months after my surgery, that I had direct evidence that my response was atypical.
Later, two different clinicians confirmed that at my age I did not need progesterone as HRT and that my extreme reaction (brain fog, fatigue, heaviness in joints and limbs) was a clear indicator of PMDD. Starting, then abruptly stopping, this medication made the side effects much worse and left me temporarily immunocompromised. I experienced intense pain in my hands and feet and developed a COVID-like bacterial respiratory infection that lasted several months. I didn't completely recover until August of this year. I kept quarantine, which further isolated me socially.
As I struggle to put the pieces of my life back together, finding women with similar stories through IAPMD.org and other online forums helps me feel less alone. Learning that hormones played a role was incredibly empowering. I might not have a cure but at least I knew the cause. The unknown is the most frightening specter of all, both to ourselves and to our loved ones.
I still don't know what the long term outlook is for me. I have been healthy and medication-free for three months. I drink soy milk (a natural source of estrogen) and take Vitamin D and fish oil, in addition to other supplements. I work out. Because I was completely incapacitated for several months following my surgery, it hasn't been easy to find another full-time job. In the meantime, my priority is staying healthy and well.
I only wish we had more and better information to help chart a course. The "double whammy" of stigma around both menstruation and mental health is a contributing factor. There is absolutely no excuse for these attitudes, but they will not change overnight. Many people don't even know what fibroids and PMDD are. They may not understand how serious they can become, or the limitations they place on our mobility and interactions in social settings. I was reluctant to share my problems on social media, not because I was shy or ashamed, but because I was single! Talking about an impending or recent hysterectomy felt like the least sexy topic in the world.
Maybe in the spring, when the weather improves, I'll do a pinup-style photo shoot to correct these misperceptions. In the meantime, please take my word that this operation was medically necessary and fourteen and a half months out, I am much the better for it.
Please understand that my story is only one of many possible outcomes. Our bodies and life paths are incredibly diverse. Trust your own experience and don't be afraid to ask for help.
Tue Nov 21 21:20:55 EST 2023
Ran across Psalm 139, completely by accident, picking up my Bible this morning. And all I can say is... wow.
1 You have searched me, LORD, and you know me.
2 You know when I sit and when I rise; you perceive my thoughts from afar.
3 You discern my going out and my lying down; you are familiar with all my ways.
4 Before a word is on my tongue you, LORD, know it completely.
5 You hem me in behind and before, and you lay your hand upon me.
6 Such knowledge is too wonderful for me, too lofty for me to attain.
7 Where can I go from your Spirit? Where can I flee from your presence?
8 If I go up to the heavens, you are there; if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn, if I settle on the far side of the sea,
10 even there your hand will guide me, your right hand will hold me fast.
11 If I say, "Surely the darkness will hide me and the light become night around me,"
12 even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you.
13 For you created my inmost being; you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
15 My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.
17 How precious to me are your thoughts, God! How vast is the sum of them!
18 Were I to count them, they would outnumber the grains of sand -- when I awake, I am still with you.
19 If only you, God, would slay the wicked! Away from me, you who are bloodthirsty!
20 They speak of you with evil intent; your adversaries misuse your name.
21 Do I not hate those who hate you, LORD, and abhor those who are in rebellion against you?
22 I have nothing but hatred for them; I count them my enemies.
23 Search me, God, and know my heart; test me and know my anxious thoughts.
24 See if there is any offensive way in me, and lead me in the way everlasting.
This is a fairly famous Psalm -- the line "I am fearfully and wonderfully made" in particular. It's also a great passage to find for the believer who is isolated and searching for community.
But my overwhelming thought, upon first read, was "Do I really want to be known this well by this God?"
It's still an open question.
My perception of Christian community is that it's powerful when done right. But if you don't have those core relationships to nurture your own light and strength, living as a Christian can be painful and difficult. Moreover, the Gospels do contain contradictions. I emailed a friend what I considered to be the five most theologically central verses of the New Testament (Matthew 18: 19-20 and Matthew 22: 38-40) -- then realized about fifteen minutes later that the very first verse does not pass muster.
In other words, petitionary prayer is unreliable at best. Think of the paradox of two football teams, whose fans are both rooting for them to win...
The problem is, you can't truly live by the teachings of Jesus until and unless you put your trust in God. This doesn't mean magical thinking. It does not and cannot mean that every sincere prayer comes true. It's about surrender and finding comfort, in equal amounts.
And it was part of why I walked away from Christianity for many years. I had plenty of evidence that God was real in an immanent, supernatural way. I just didn't like what God had done with my life.
It wasn't the divorce. It wasn't moving to a new place. It wasn't even having my dog die or realizing that the seemingly perfect man I was dating was never going to fill the empty place left in my heart by my former husband. Really, it was being let down by the church that I was part of. Needing pastoral care and not getting it. As in... I had my hand in a cast and I could have used a few covered dishes. My secular friends, at that point in history, were there for me.
I was 34 years old then and feeling my oats. For Lent, I gave up church -- and wrote about it. I also started a web design company that -- in its early days -- seemed to find clients and grow with an almost supernatural ease. No, I didn't become preoccupied with material success. Far from it. I still saw everything I was doing as having higher purpose. Even as I left the church (for more than 40 days, as it turned out) I had faith that I would be protected making this journey, even if the path was not always safe or comfortable. That there would always be a way back. And I think that much has held true.
But I never expected it to be this hard. I didn't expect to lose everything along the way. I don't feel like I've been "punished" exactly -- more just shown, very convincingly and with zero room for error -- who was in control. It's like having a sparring match with a master and finding yourself pinned to the ground.
Do I regret the path I took? Not exactly. That urge to question and test boundaries is part of who I am. Part of how God knit me together in my mother's womb. It's too late now to go back and be like everybody else.
I just trusted enough in God to believe that I was free to explore. My only reward was what I experienced and learned. There is a Johnny Cash song for every occasion, and this one is no exception:
"Yeah I left with nothing /
But the thought you'd be there too."
So where are you?
Sun Nov 19 18:55:35 EST 2023
Saved this page from the Wayback Machine to my local hard drive. It's from a religion and spirituality blog that I took down in 2022 because of a stalker problem. Now I wish I hadn't. At some point, I will reformat the contents and post here or on the website for the book I wrote about Christianity (which right now just points to where you can buy it on Amazon.com). Not quite ready yet. Been weirdly stricken with fatigue all day. Hope I'm not getting sick, or that this isn't more hormonal hijinks. Aside from that, I sort of feel like I should find a church before I start posting publicly about religion again. Easier said than done in Connecticut.
Here's an excerpt:
>> Healing is sometimes possible. Other times a clean break is best. If you can't love yourself and tolerate the behavior you are experiencing, then you need to get out. A great rule of thumb is what you would recommend if a good friend were in the same situation. You won't always know right away. Setting boundaries is also a great way to show love for yourself. So is giving yourself time and space.
FWIW I now think I was wrong about my choice to end the relationship referenced in the original post. Think I closed that door too soon -- and for all the wrong reasons (chiefly money and pride). At that time I was unwilling to make the concessions needed to help the other person heal and stabilize. But I was certainly capable of making them. I knew that. I prayed about it. Got a very clear answer. Back then I didn't want to hear it.
It all came down to patience and trust. Hindsight is always 20/20. Sometimes it takes six or seven years to get full perspective.
I'm not sure yet about the church I attended today. It seems great in lots of ways, but it's a half-hour drive on the freeway and more important, I'm not sure my queer and trans family would feel safe or welcome there, if I invited them to a service. One thing really did stick out from the sermon, though:
Not all doors remain open for all time. Our choices here and now matter.
Sat Nov 11 18:23:17 EST 2023
Description of a very vivid dream I had. I was in a largeish, private aircraft. I wandered down to the the lower level of the cabin (it was double-decker, like a Boeing 747) and met the pilot. She had stepped out for a moment. She was a Black woman, and appeared to be middle-aged. I was surprised that there was a pilot, because in this miscellaneous future time, most private passenger craft were piloted by drones. She asked if I would like to witness the landing. I said, "Sure!"
This is the cool part of the dream:
We went down another level, to an observation deck that was protected by some sort of forcefield. The rest of the crew was assembled there as well. It was going to be a water landing. Near New York Harbor. I could see the waves getting closer below us. I could also now see that the craft itself was not a conventional airplane, but something more like a hovercraft or dirigible. It had floats and water rudders like a seaplane, but they were arranged in a circle.
These extended in preparation for our landing. They exerted some type of braking action to slow the craft down and cushion the impact with the water. The observation deck was briefly submerged (we had a view of everything, as if through glass) and then resurfaced after additional ballast was deployed. The craft was now stationary, with the cabin level perhaps 15 feet above the water. The pilot explained to me that this was a spaceport, and ETs and spacecraft would be nearby and observing. I could see some of them through the spray, also floating, gathered round.