Real time with mental illness…

When I started this blog I wanted to write about my journey to live an authentic life. I didn’t really have a plan except that it would be a place where I would write about my life and its evolution toward authenticity. I didn’t want it to be about right or wrong, left or right as much as I did about looking hard at something and finding my own truth about whatever it was. We had moved from Nebraska to Utah as a result of a major shift in how we perceived life. Our daughter’s journey to understand her life with an eating disorder and mental illness changed us. It took us away from so many illusory beliefs and practices into the heart of life and what it means to be more fully aware of its realities. We’re grateful.

It’s really no secret why psychologists, psychiatrists and those in mental health are often seen in a less than affirming light. These people get paid to ask the necessary questions that no one really wants to ask. They get paid to listen to the stories no one wants to tell and then they have to figure out how to help people deal with the answers to the questions they ask. To do that, they do something called mirroring back to the mentally ill and those involved in their lives. They take a good amount of time to collect data and observe their client’s situation. They often ask more questions to clarify if they have understood you correctly. They might present to you how that’s working for you or not and ask you to think about that. Getting real for me is the result of this process and that’s why nothing challenges me to get real like spending time alongside mentally ill people.

Last weekend I experienced some minor complications as the result of surgery I had two weeks ago that required that I see a doctor. The CareNow urgent care clinics close early on Saturday so there was nowhere else to go but the hospital ER. Because my situation involves my GI tract and is one that will almost always require a CT scan for a full assessment, I am always placed away from the main stream of ER visitors. This time I was put in a small square room with four beds, each bed surrounded by its own curtain with a large space in the middle for easy movement of beds etc. When I arrived, a sweet tempered, big burly security guard with an Eastern European accent was sitting by the entrance to the room from the hallway indicating that someone in one of the beds has the potential to be violent. On this particular night three out of the four beds in this room were taken by mentally ill patients.

Bed 1 – Deaf man who had overdosed earlier in the day and fully planned on suicide if he were discharged. He was very checked out and only wanted to sleep. I found out about his situation when the nurse did an assessment and had to use a sign language interpreter via her phone.

Bed 2 – A 30 something man I happened to see because he was on the corner opposite. I realized later that the curtain had to be open for his safety and the safety of those working with him. He was sitting up on the bed asleep when arrived so I was none the wiser to his condition at first. It remained quiet for about 15 minutes and then suddenly I heard loud sobbing. He was hallucinating and experiencing someone threatening to hurt his dog. The security guard rose to his feet and went into the room. The CNA posted at the foot of his bed gently but assertively instructed him not to yell. He responded and stopped yelling but went off into a lengthy story about a text they should read. His moods went from up to down and all around accompanied by a lot of vocalization within minutes. His ability to be present and engage with others followed those mood swings. Then as is typical with psychotic episodes, he would crash and sleep for awhile before the next one.

Bed 3 – A woman accompanied by her own law enforcement officer rested peacefully most of the time.

It was, for the most part, a typical visit to the ER for me but there was one exception. The guy in Bed 2 was visited by the doctor and told his mother would be coming in soon to see him. She arrived as planned and the little boy inside the man’s body melted into her arms and sobbed uncontrollably. His mom, like most of us with a mentally ill adult child, reminded him what to do. She had her son take deep breaths as she held him and listened to the extremes coming out of his mouth. Also like most of us, she was able to see the person behind the psychosis, the brain’s misfiring for any number of reasons and in that recognition was able to bring him to the ground for a few minutes. She wasn’t there more than five minutes but it was a vital five minutes for him and for her. As she left I looked up and saw the tears she’d held in while being there for her son begin rolling down her cheeks. The staff assisting her were so kind and there was such a sense of compassion for both patient and mother. It has been a long time since I’ve been in her shoes but in an instant I was right there with her.

It strikes me time and time again how so many who are mentally ill wrestle with the hard core paradigms they have stored inside of them from childhood and for this man and his mother, Evangelical Christianity was the third person in the room with them. When the man saw her face he immediately apologized for his sin, said he finally got what she was trying to tell him when he saw God in one of his psychotic episodes and that he always loved her. My heart broke.

We Evangelical mom’s have such a burden on our shoulders from the minute we’re pregnant we are aware that we have to make sure to train up our children in the way that they should go so that they won’t depart from it. We talk to them about Jesus as much as possible because that is the one thing we know that will keep them safe. Then, when at some point in their lives, Jesus seems incredibly absent and they are deviating from that way that they should go, we know it’s because we didn’t do it right. Our faith community knows it too and some of them flat out tell you to your face. In my case it was at the local mall where I was numbly walking around trying to breathe after taking my daughter back to the airport so she could get right back into treatment after relapsing almost the minute she walked into our front door. My woman of faith friend in her piety who saw me fake shopping thought I needed to hear and think about how it was likely that my daughter was just …” Somewhere I found the strength to tell her that she was wrong but it was an enormous emotional blow for me when I was already in dire pain. I wish I could look back and say how rare that was but it was just one of many during that year in hell.

We eventually realized that to ever heal and give our daughter any kind of chance at life, we would have to move. We moved over a thousand miles to get away. Away from the constant defense of our reality we began to find ourselves again and actually deal with what was before us. Mental illness is not rooted in Satanic possession and is not easily cured by Bible verses. The brain honestly doesn’t give a rats ass if you are saved or not. Traumatic pregnancies, premature births, fetal alcohol and drug exposure, early childhood and adult traumas all leave the brain broken and no amount of laying on of hands or exorcisms makes a bit of difference. Then there are the life is the direct result of your choices people who are 100% sure that if your mentally ill family member can learn to choose more wisely they can be cured. They are equally sure that you could have chosen better to make sure your kid didn’t end up in this state. There is truth in both but to imagine it’s possible to have a switch flipping moment in time that results in getting put back together is utterly ridiculous. Even after 22 years there are still those in my life – very much on the fringe – who still believe it was all about God and choices. They simply refuse to know.

I don’t think there is one thing that hits me harder than a mother with a child wrestling with mental illness and carrying the weight of it as her failure to train up her child. I’m so done with the religion that I once loved and the God I thought I knew. It’s fine if you never get thrown under the bus and have to deal with those who refuse to get what you’re going through apart from their rock solid paradigm. It’s why the Texas and so many Republican politicians trigger me so much. They literally refuse to know because to know means that they have to acknowledge the holes in the golden calf of modern day Evangelical/Christian Nationalism that they worship. Reality exists only in how they define it. For the most part the truth is irrelevant to them unless it fits within that paradigm and because it never does, they do so little to address the real issues behind real problems.

The God I know and believe in was sitting there with me beside these hurting people. This source of life was one full of love and mercy without any judgment. Throughout my 5 hours there various staff came by my bedside and asked if I was okay. They asked if I needed ear plugs and apologized for their other patients. I gave them back the most compassion I could muster and just said, I was fine.

Today I’m writing this because this is all part of my real life. It is also because I want those three people to know that I saw them and that I stayed with them for as long as I could. I couldn’t talk to them or make any difference except to be there and in the whole scheme of life, that is enough for me.

My personal issue is ongoing and I’ll see my surgeon tomorrow. I don’t think it’s anything serious but if it is, I will deal with it when I need to. It’s just often strange when life shows me mercy as a result of my journey. This was that and equally therapeutic.

Getting Real: The GOP and Kevin McCarthy

Kevin McCarthy has finally and completely sold his soul to become the Speaker of the House of Representatives. As he boasts in his ability to finish strong and negotiate in the spirit of Democracy, like all of the proverbial frogs in the pot slowly being boiled, the life he once knew as his own is no more. He is now nothing more than a puppet connected to some very hard cable-like strings. He now holds a position of power so fragile that he will only be able to maintain it with continued bowing to the ones who demanded this compromise and that number is well beyond the twenty who directed this drama. A lot of people donated large sums of money to get him into the position and he will need to answer to them as well. These cables pulling him around could easily become tangled and make him immovable. Time will tell.

In the weeks and months to come so many ill informed people with a worldview that could fit on the head of a pin will lead committees under the banner of being godly, righteous and smart. They are instead anything but. These people are fully invested in a world that does not exist any longer. They haven’t yet realized that simply because they live in the backwoods, the rural or are isolated by their own wealth and privilege, the world at large has changed beyond its capacity to return.

Last week, my husband who works in the industry that makes sure our food is moved from one place to another, received an email from a strong voice in the industry telling his largely conservative colleagues that whether they believe global warming to be real or not is no longer relevant. He went on to say that the industry must recognize that on a global scale it is established as fact. It is going to increasingly impact their work and ability to sell products. The Japanese, for example,  are now asking for documentation as to the amount of fossil fuels used to make the products they are using. They have determined that they will show preference to those with least impact on the environment and other countries are doing the same. That’s a big deal and one that no American politician of any stripe can alter. Republicans like McCarthy cannot even begin to allow themselves to grapple with this reality without being ousted? Even as his own state of California faces an atmospheric river unlike any it has seen in his lifetime heading straight toward it, he will not mention global warming or climate change as anything but a natural event. The damage will be extensive but McCarthy will die before he assesses that any of it is due to fossil fuel induced climate change. Were he to announce even a flash of insight in that direction it would end his existence as Speaker of the House. 

I am a Reagan Republican turned Biden Democrat for more reasons than I can count but today it is because those who exist in the party now are just not able to live in reality. Whether it is because their minds are steeped in the tea made by the voices of Sean Hannity, Tucker Carlson and others in their arena or it’s truly because they simply cannot face change, it is clear that in a very real way we are living in completely different worlds.

Focused on the perceived threat of Critical Race Theory or Drag Queens showing up to read a story in our grandchildren’s public schools, the very real national and global concerns that are having an impact on the daily life of every American are minimized or ignored altogether. All for the sake of position and power. The very real things that are changing our lives at warp speed are labeled as liberal fodder because to address them is a death sentence in the modern day GOP. As this water deluge begins to fall from the sky on saturated and in many places burn scared California soil, Kevin McCarthy will try to show empathy. He will later beg for a disaster declaration to distribute federal funds to help his people but he will not utter one word to validate climate change caused by fossil fuels. Not one word.

Rep. McCarthy is likely higher than a kite today feeling the spoils of last night’s victory. The sweet spot between his battle for the throne and the reality of being on it will be a small one. As the pretense of his everyday existence continually clashes with the real hard truths of American governance, his performance is sure to be Oscar worthy. I for one cannot imagine how the party with its own careless center will get anything accomplished but grab the popcorn and settle in because it is sure to be quite a show.

Thoughts on the Attack of Paul Pelosi

Hearing about the attack on Pelosi’s husband though abhorrent and incredibly disturbing, really should not surprise anyone.

For decades Rush Limbaugh, Dr James Dobson, Glenn Beck, Bill O’Reily, Pat Robertson, Jerry Falwell and a host of others have funneled their disgust of all things liberal toward two women. Hillary Clinton and Nancy Pelosi. These men and many more plus a lot of American far right women literally HATE them. Despise them.

Upon hearing of the attack on her husband yesterday, in the back of my mind I recalled multiple conversations around dinner tables and over coffee with friends about the danger we faced as a nation because of the “femin-Nazi” (Rush Limbaugh’s adjective used to continuously describe his most hated women leaders, Hillary Clinton and Nancy Pelosi).

As a young Evangelical Christian mom in the 80’s, daily listening to Focus on the Family to learn how to be a good Christian mother, Dr. Dobson would regularly have guests that would mention these women and the danger they posed to our country. In our church a pamphlet circulated from a charismatic Christian leader that exposed feminist women like them as those possessed by a demonic spirit called Jezebel.

We loved being separate.

We loved seeing ourselves to be exclusively enlightened.

We loved being Conservative Christian Republicans.

Then our daughter became seriously ill with an eating disorder. She was near death three times. She was suicidal. Our lives were lived with transparency in our church family. We almost lost our daughter because we had so many answers, they had so many answers.

It was almost intuitive for me to understand the connection between our religious and political life just months into our daughters treatment. It had been 14 years of living a complex life as her parents. Her premature birth made her childhood full of Dr appointments and hospital visits. Physical illnesses in the believer by default demanded inquiry into their root formation from sin, an attack from Satan or a divine gift from God, our Heavenly Father sent to teach and conform us into Christ likeness.

Eating disorders come from none of those places. They exist because the self – the soul has no place to exist. My girl was lost to her self almost at birth. There would be no redemption of that self in the toxic world of our Evangelical faith. We left it and moved away in 2005.

Nothing about what we are witnessing in our political life surprises us. No one steeped in that kind of exceptionalism and certainty can live a healthy life without perpetuating the distrust of the other. No one.

The cancer that has been and is continuing to eat our Republic alive is religious zeal that has covered over real dysfunction and abuse and emphasized controlling others in Jesus name. There were yesterday and are many more today celebrating the Pelosi’s horror right now. I know it like I’m breathing air.

Thoughts from the Heartland

Yesterday driving from Omaha to Norfolk through the most beautiful green fields of corn, soybeans and alfalfa, through small towns where time seems to have stood still I was very aware of the abundant food supply Americans depend on without even a thought about where it comes from.

Our liberal politicians rarely come from here. Biden and Harris are from the east and west coasts. Flyover states rarely get visits from anyone on the left. Trump changed that.

The people of rural America feel seen and heard in a way they haven’t experienced before. Trump’s lack of formal education works in his favor here. Not because rural American is stupid but because they must be educated differently. Biden and Harris don’t know squat about rural concerns. The Left decries the Electoral College and the two Senators for each state but without that structure this heartland wouldn’t have a voice at all. They will be heard.

In my experience Liberal values have come across here as out of touch with real life. Religious Christian practice has deep roots here – the landscape is dotted with Catholic, Lutheran and other Christian churches. Towns large and small were structured with church at the center. Trump’s supposed conversion allowed people to feel safe with him and know that they would be seen and heard. Though he’s a hollow shell part from the worship of others few knew him apart from his image of success. He was the perfect idiot for the far right to use to grab hold of the party. He did not disappoint.

The Trump Administration poured government money into rural and America. His Ag secretary told a crowd at a convention Dean was at that he always told Trump to have his checkbook out when he came to town and Trump did just that. Reinforcement is a powerful thing. But with Trump the door to the crazies opened wide up. Playing into the fears that liberals, empowered by Satan at worst and Coastal elites at best were set on changing life here, good solid caring people find themselves capable of believing utter bullshit and don’t even realize it.

An example of this is a story I heard yesterday about a situation at our local high school. I was told that a special bathroom was built there as a pet relief station for a kid who would only relieve himself like a dog. The government said he had to be accommodated. As someone who spent a bit of time in Special Education I was immediately suspicious. 🤷‍♀️

First off – ANY accommodations we need for our most difficult students in public schools require a whole lot of work to ask for and then obtain in a timely manner. Requesting a special bathroom is just not even on the list because the normal ADA requirements make our bathrooms accommodating to begin with. We have kids in wheel chairs and with walkers. We even have older kids in diapers because their bodies don’t work like normal.

Second – IF we had a student who was mentally ill to the extent that he thought he was a dog, a regular public school would likely not be the place for him. He would be in a very specialized behavioral school instead.

Third – Any professionals working with a student with this severe mental illness would not suggest building a specialized bathroom to accommodate his delusion. They would work their butts off to change his behavior and in the process clean up mess after mess. They would literally work the miraculous with great skill.

I was 100% sure that this was not true and couldn’t rest until I checked it out this story with a friend who has devoted her life to public education here. Of course it wasn’t true. The rumor came from out of state was embraced by a state legislator eager to discover such a tale and then shared with his colleagues. Believed by the masses, this nonsense required a Superintendent’s letter to the editor and the Senator to recant. Clearly, once this kind of thing gets out and is believed, a lot of people never get the real truth.

I’m aching for my home state and mad that the best of who these people are is now veiled by this version of the GOP. Lynne Cheney and Adam Kinzinger reflect what the party once was. I hope that there are others who will question everything they hear and in so doing ground themselves in their own wise minds. It has been my experience that neither side has all of the answers and in order to reach wisdom rigorous debate is essential. Believing nonsense and rigidly clinging to it on either side serves no one.

Maybe I Should Have Known

In fall of 1983 I married my best friend and partner in Evangelical Christian ministry. We had spent the entire year before our September wedding preparing to go to Uganda, East Africa, with a ministry called Campus Crusade for Christ. Our task would be to go to small remote villages and show the Jesus film a movie based on the Gospel of Luke. The process to apply, be accepted and then plan to go was incredibly rewarding and we were so eager to go together. We began to raise financial support for the trip in the spring and received hundreds of dollars from friends and family eager to see us succeed until sometime in April when the financial faucet turned off. With our time limited, we had to make a decision. We realized that we had enough money for just one of us to be able to go and determined it would be Dean.

That summer I stayed home with my family and got my old job back for the summer. Having not planned on being there I was eager to meet up with friends and one day an old high school friend and I got together for lunch and caught up. She also had a wedding that summer and as fate would have it she was marrying a good friend of Dean’s from his fraternity in Lincoln. It was a small world. Maybe I should have known that serendipity can be incredibly deceptive at times and that no matter how the stars align, they should always be put through some good scrutiny, but I didn’t know that.

Maybe I should have known that not all friendships have to be reconciled even in the Evangelical Christian world.

Maybe I should have known that what my parents and others had told me would happen if I got together with her or anyone in her church would in deed really happen.

Maybe I should have known that it is often the most insecure among us who need to feel and experience the constant reassurance that we are the most unique and special.

Maybe I should have known that when other church members were sharing stories with me of those they considered highly spiritual with degrees in finance, engineering, microbiology and medicine were choosing to leave the world’s prestige behind them and taking basic jobs just to move there to participate in the church, that the human ego can masquerade as the Holy Spirit and create loads of dysfunction.

You see, the thing about getting involved in a cult is this…you really just do not know.

Spiritual OxyContin

platitude: remark or statement, especially one with a moral content, that has been used too often to be interesting or thoughtful.

“he masks his disdain for her with platitudes about how she should believe in herself more”

We all use phrases we can utter without much thought to express ourselves. I’ve written about this before but after hitting it again a few times this week, I just have to say something. In a world of real people encountering real horrors, this platitude has never seemed more hollow.

The platitudes that grate me more than any others are those rooted in the idea that we are in and others are out. When we utter the phrase God is good and it is attached with our personal prosperity, we bear witness that we believe our beliefs are the beliefs that give us special favor. We inadvertently imply that if you aren’t getting to buy that new car, move up in your community or take that dream vacation, YOU haven’t discovered this goodness. This platitude used in this way is rooted the prosperity gospel used by people like Jim Baker and Joel Osteen. It is not, nor was it ever, used by Jesus to express that God is good.

Another way people of faith use this platitude is to encourage the poor, the struggling, the ugly, the addicts and the ill others in their midst to have hope. In spite of anything else true about their lives, they are encouraged to believe that God is good. The Christian teacher Bill Gothard took this so far as to teach that if a woman was raped, God had a plan. He went on to say that her task would be to believe so firmly in the goodness of God that being overcome and violated by a man would turn out to be good in her life!!!

Last week my son and his wife were asked to foster to adopt a third baby. While many infertile couples would give everything for one baby, they now have three! I’ve heard countless platitudes related to God’s goodness with respect to Finn’s arrival. I’ve also been living with the God is so good! ear worm going round and round in my own head. With thirty years of throwing this platitude out there like rice at a wedding, I am here to bear witness that it is way past time for us to stop it.

Saying some form of God is Good rarely, if ever, comes from any genuine grasp of a deep truth we actually know in our bones, it has instead become spiritual OxyContin used to avoid the harsh reality that God isn’t attached to any possible construct of goodness as we in first world prosperity driven religious countries can define it. In my mind and heart I can no longer just say that God is good as I express gratitude for anything in my life. I am beyond full of gratitude for these boys in my life but I cannot neglect the reality of how they have come to us. Any kind of concept that a good God would allow a mother and father to continue to conceive while not being capable of safely parenting their three boys simply does not compute.

Why? Because from where I sit, my son and his wife are the ones who are good. My country, where an imperfect foster care system exists to intervene and save the boys, that is what is good. To be high on the opioid of God is so good will not possibly work for this grandma anymore.

I actually believe in the goodness of Divine life. I believe in the co-creation with that life to make my life better. But seriously, my faith paradigm hasn’t come from prosperity, it has come as a result of personal reflection, radical acceptance and facing hard truth. It’s come from religious de-tox and self discovery. It’s come from authentic friendships where others wrestle with reality in similar fashion. I live with an abiding presence, I believe to be God but very often, very often, real goodness looks nothing at all like material or physical prosperity.

Please think about this and release your addiction to this phrase. Do it for the good of everyone.

Turning 61

As I approach turning 61 I think about where I’ve been, what I’ve been through and all I can say is that life is as awful as it is beautiful. I love my life but it’s been hard and I don’t say that for pity or even seeking empathy. I say it because it’s true.

Too many of us are ashamed of the hard. The fear, the insecurity and doubt that we genuinely experience. We receive so many cultural messages that tell us we get what we deserve and we know that to express any kind of weakness means we earned it.

In my Midwest hometown if you come from a very successful entrepreneurial family like I do, it’s akin to achieving royal status. As soon as you can leave the middle class neighbors and move up, things really begin to improve in your life. Then you get sick, really sick and almost die. You keep working because to rest and focus on your health means you are not taking responsibility for your life. Then one day the doctor tells you that you should never do the work you love anymore because the risk is too great. You heal up and feel better so you try it again anyway. Of course as soon as the doors shut for winter, the cold season begins and there you are, sick and using up all of your sick days. There you are creating so much work for others by your absences. And there you are quitting again.

My doctor in 1992 knew what he was talking about because he was an immunologist and infectious disease specialist. The pull up your bootstraps, get over yourself, and succeed no matter what worldview of my Conservative Midwest culture didn’t allow for people like me to have a place that was ok. Everyone tries to fix you because to have disease is not ok.

I cannot count the alternative treatments, potions and spiritually driven interventions that have come through my life in 30 years. The practitioners often built their practices because they needed access to the treatments they found helpful. Many of them have helped me a lot. Many have not.

As the pandemic arrived here and enveloped the world – so many of my friends in the alternative treatment community have embraced the idea that the miracle of the MRNA vaccine isn’t one because…when asked a few questions, only a very few have actually said that they humbly realize that the immunological, infectious disease experts actually know what they are talking about. Doctors who exclusively study Corona Viruses and what they do to our bodies are seen as charlatans and fear mongers. I’ve had such a struggle with this throughout my 61st year on this planet.

Today I realized that my doctor in 1992 knew exactly what would happen to me if I kept teaching, wiping runny noses and breathing the air in a closed classroom. His advice came from years of research and the labs tests in front of him. I was simply too proud and too devoted to my worldview to let go of my profession-also my passion. I rebranded myself as a SPED teacher and almost made it. I almost felt like I could face my successful family and community without shame. I can’t believe I am still feeling that I just missed the prescription, the one right cure and the healing. I now see it was there from the beginning. Dr. Tyler Martin, my doctor and friend gave it to me because it was the truth. I ignored it and it definitely made my life harder.

I think as I give thanks for making it this far, I will purpose to find a way to surrender. Sounds crazy perhaps but honestly, my identity has been built around this not being enough for so long that I really need to figure out how to dig deep and let go of it. I’ll never have the royal status that comes in my home culture with having money I actually earn. I’ll live in a home and enjoy a life I haven’t earned because I’m married to a successful man and the daughter of successful parents. I’m never going to be financially independent from my own effort and though I’ve known it for 30 years, my soul is entrepreneurial, my passion is endless and I really love work but I cannot.

I need to slay this shame dragon in year 62. I have to find the way to choose to accept …surrender to what is and maybe move again…JUST KIDDING!!! 🤪 I am not moving. Oy.

Time to get real about losing an election.

Having enjoyed a working relationship with the HOA Board in my suburban Texas neighborhood for two years prior to this summer, when approached to consider replacing one of the two departing members, I thought about it for awhile and decided that it was time for me to put up or shut up. I filed the necessary paperwork and became a candidate. I had no idea that this simple choice would turn into one of the most difficult of my life experiences since moving here to Texas but it did. As with most difficult things I encounter, I deal with them through writing. Having done a fair amount in my personal journals, I’m ready to put out there what the experiences taught me.

Earlier this spring the Board had announced that we as a neighborhood would need to vote on some newly updated governing documents they and another committee had been working on for some time. After the process was announced to the neighborhood, communication increased from the Board itself and among neighbors. One day I discovered a flyer on the community mailbox. There was no name or address on it, just a strongly worded instruction to READ the documents before voting and notations as to why that would be necessary. At first I ignored the flyer but when it arrived in my door with an email address on it, I sent an inquiry to the neighbor to discover what all the fuss was about. Big mistake.

What followed was a cordial dialogue for several emails and then as if out of the blue, I was told that I had drank the KoolAid, was actually just a liaison for the current Board, was a disappointment in light of what this neighbor had discovered about me online and that my brain was so compromised that I would be of no use to the neighborhood. (all my best recollection as I have deleted the conversation). I was so shocked and angry with this man’s insults that without much thought, I replied with this. ”Because of your experience in the military I am certain you can take this, F you!” Then shaking I told my husband about the conversation and asked him to read the emails. I was livid.

I am known to drop the F-bomb on occasion in private but have never, ever used the word in a conversation like this before. I just don’t do that. As a result, I was immediately filled with the most complex feelings of both intense pride at my own self defense and regret that I had actually said that to someone I don’t even know. I didn’t expect to ever think about this guy again. Wrong. More later.

Apparently I was on a roll to offend at the time because prior to the above discussion with one neighbor, I had been a participant in several discussions on our neighborhood Facebook page about the new governing documents and issues related to the process. Some of the discussions were heated and, as all social media posts can become, hurtful to some. At one point in a discussion that seemed endless, I asked another neighbor to let something go because I believed that her concerns had been acknowledged by those in the discussion and that none of us had the power do act on those concerns beyond that. It felt exhausting to keep going over the same topic.

My “instruction” was similar to pouring a cup of gas on a bed of hot coals. Boom. I had overreached and taken a position of authority over this person that I should not have. It was public and demeaning of me to do that. The next day I acknowledge that and issued a public apology on the page. I sincerely felt remorse and decide that because I did I would drop the neighbor an added personal note of apology. For me, it was how I had owned my stuff and moved on. What I did not know is that in our personal messaging between one another, somehow I only added to her pain and much to my surprise, she came to believe that I was diagnosing her with a mental illness. To say I was shocked is an understatement. Having a daughter who lives with mental illness and having worked in a treatment center for girls with mental illnesses, I was beyond mortified that my words would be interpreted in that way. But the ship, as they say, had sailed. I felt terrible. I tried to move on and hoped that at some point in the future we could talk face to face and resolve things in person. I had so much to learn.

What follows is the result of things that took place as a result of the two people I offended taking their offenses with me into the public arena. Oblivious to this I had already determined to no longer promote my candidacy for the Board position but to allow it to take its own course. I stopped interaction on social media and waited for the election to be over secretly hoping not to be elected but not sure how I would deal with a defeat either. Making mistakes and doing things we regret are hard enough but when those things are used against you without your knowledge, it is especially difficult.

Thinking that neighbor one’s email conversation with me was trivial, insignificant and private, I was completely taken back when I discovered that this man took a copy of our conversation and showed it to others even going so far as to try to convince a Board member that “someone like me did not belong on the HOA Board”. After the election was over I discovered that he had told others that I had said, “F you” to him. I couldn’t believe it was real but it was.

As if that wasn’t enough to blow me away, the woman who is certain I had diagnosed her with a mental illness posted the details of her experience with me on Facebook and told neighbors NOT to vote for me. She added that I wrote her an unsolicited snail mail letter. Seriously. 

The white male ego of men closer to my own age is something I’m so familiar with that I’m often blinded to it.  Unfortunately when the scales fall off and I’m hit with the full light of it, my response of FU is to be expected. I must learn to see it in its infancy and proceed with necessary caution. I see now that I need to be prepared to publicly call out abuse in the beginning before someone has a chance to gaslight others by crafting an alternate narrative that frames me as the abuser.

Words are powerful. Social media appears innocent, positive and a good place to discuss reality. I must learn to be more aware of the futility of beating a topic to death myself and especially to demand that another to let go of her hammer while I cling to my own.

I have learned that humans are all fragile. Regardless of military experience, intellectual prowess and skillful communication enterprises, at the end of the day we all just want validation, belonging and to be heard. 

Our Real Pandemic Story

I’ve been thinking a lot about where we are in this pandemic. Dean came home last Thursday after traveling for work with a case of breakthrough Covid-19. We’ve been in quarantine since. As fate would have it he arrived just a day after I had experienced a tense conversation with a very good friend about vaccine and I was still trying to recover from it. I love this friend as though she is my sister and I’m still not sure how to let it go and re-enter her life. The reality is that she has a very different perspective on the vaccines than I do to the point that the information she shared with me completely overwhelmed me and made feel as if I was expected to watch for the disintegration of my body as a result of the vaccine being present in it. I honestly had no idea what possible answer I could give her except to say, that of course, I must be a real idiot and will now have to live with my choice to alter my DNA, to get blood clots and a host of other things. As I don’t find that true, I didn’t know where that left me in her eyes and that was really tough. Then, just like that…my vaccinated hubs arrives from Nebraska looking like a ghost, tightness in his chest and cold-like symptoms. I knew right away that he had breakthrough Covid.

As the week has worn on and we’ve gotten used to once again being sequestered in the same house together, I’ve had ample time to reflect on this whole poop show we’ve been living through and I just started writing it out and this is the result of that reflection.

March 2020…When the World Turned Upside Down

Stephen and Theresa with their boys Bobby (just turned 2) and AJ (9 months) had lived in Cedar Park for one week. We had been helping with the move and babysitting. It was an exciting time. Stephen would no longer have the grueling 90 minute commute from South Austin to the Apple campus where he works. For the remainder of that year, Theresa would commute going south because they had found the “perfect for them” house just about 10 minutes from ours. Then…BOOM. Shut down. Having done the reverse commutes and putting the boys in their new daycare, everything about coming and going came to full stop. Everything about staying in and going ramped up to full speed. Suddenly we had Dean, Stephen and Theresa all working from home. I started to work from home too. It was crazy. 

After months of juggling and striving to get to the end of the school year, Theresa was able to stop working for the summer. Promises that it was a temporary thing were abundant. I clearly remember Jerad Kirschner saying very clearly that it would all be over by July of that year. July, however, came and went. With July also came news that Theresa had a tumor on her the L1 vertebrae very likely cancerous. Talk about feeling thrown into the abyss. I had already been watching the boys 3 days a week and she two because it was very hard for her with the backpain she was dealing with. On the days she watched them, she and Stephen would tag team while he worked. The stress level was incredible.

Dean was stuck working in our house slogging through a list of potential customers as a telemarketer instead of doing the actual kind of sales and technical advising he prefers to be doing. The threat of spinal cancer in the family took everything to an entirely new level of crazy. It is no easy swallow and clouds every damn molecule of air you are breathing as a family and this time it hit us within the context of a pandemic.  Covid 19, largely unknown even to the experts seemed to be always hanging around but unseen in the air, on surfaces and possibly elsewhere. It was seriously overwhelming. 

August rolled around and my phone rang. Stephen was calling to tell me that they had come to the realize that they had no choice but to put the boys back into daycare even though Theresa had determined that she would take a year off from teaching. She was on strict limits with lifting anything over 10lbs. so it was impossible to manage the boys alone. My immediate response was simply an affirmation that it was really the only way forward.

 We were all spent. We were all exhausted and stressed beyond the ability to give them good care and continue to pay attention to the work in front of us. Theresa’s tumor was found to be a schwannoma or nerve sheath tumor as a result of radiation she had to endure to deal with neuroblastoma she had as a toddler. It will one day require an extensive surgery but for now it’s a wait and see situation. How does a mom of two young babies and a career just stop it all in a normal stressful life, let alone during a pandemic? She spent a lot of time exercising and resting and regaining her footing after so many blows in rapid succession. In order to do that, the boys had to be in daycare out of the safety of the house, among other kids from other families in the middle of a pandemic knowing both that there was great risk if anyone caught the virus and an equally great risk if they didn’t. We were living in the proverbial rock and hard place. 

It took until February before the virus entered the daycare and when it did, it had to shut down for two weeks. We went over to Stephen’s to watch the Superbowl knowing that we could be exposed but not at all wanting to believe it. A friend suggested that kids aren’t actually transmitting the disease to others so, of course, I went to Dr. Google and found validation to that idea. When I did, we headed over and I held and coddled my boys. Days later, Bobby was positive for it. 

I was pretty frightened when I found out that he had because suddenly the abstract became real for all of us. I had long before determined that if I got the virus as a result of the boys in daycare, I would be able to accept the consequences of my choice to spend time with them. I had determined that if it took me to my end, I would go down as a hands-on grandmother. I’d caught a few colds and had my nose swabbed several times in the months prior to Bobby’s positive test but so far had avoided it. I suppose those negative tests gave me a false sense of security. Like most of us, when I want something bad enough, I can do all kinds of mental gymnastics to determine that what I want is the good and right thing for me, no matter what supposed evidence is in front of me. Unfortunately, the only thing that can break through my denial or avoidance of reality is the consequence of my choice. Bobby’s positive test was indication that I was very likely going to have to face the reality of my own battle with Covid 19. Of course, I got sick a few days later and was sure that I was Covid positive. I was not. I didn’t ever get it. That said the reality that I was exhausted from the threat of it was only magnified a hundred percent. I was determined to get vaccinated as soon as possible. 

After spending the whole month of February almost entirely separated from Stephen’s family, when I was able to get in line for the vaccine, I jumped at the chance. I had been following Dr. Michael Osterholm’s podcast every week as well as other reputable sources and had no fear at all of getting it. A friend I know in Nebraska has shared a video from our mutual friend, Dr. Tyler Martin, an infectious disease specialist. I worked for Dr. Martin in the early 90’s and after exposure to his incredibly intelligent mind and passion for immunology and infectious disease prevention, I also highly trusted him. Most of all, though, I wanted to be able to live my life without reference to Covid 19. I wanted to visit my elderly parents with pre-existing conditions, go grocery shopping without a mask and attend a live music event again. 

I had to drive out to Midland, Texas, to obtain the first dose of the Moderna vaccine. CVS had just obtained them and the slots here in Austin filled up faster than lightning. The community offered vaccinations were unavailable to me as well. I just kept trying and trying and this was the first one I was successful at getting an appointment for. I enjoyed a nice drive to west Texas and a night in a motel before heading home to experience a few days of side effect. Three weeks later, I searched again and found a follow up shot at a CVS in Palestine, Texas, three hours east of here. As spring came and mask requirements were lifted for the fully vaccinated, I was full of optimism and life started to return to normal until the end of July when my chest started to tighten and I struggled to breathe. 

Pneumonia. I could hardly believe it. I’d heard a bit on the news about breakthrough infections being diagnosed in a few places attributed to the Delta variant that had devastated India but the thought was that it was largely only found in those with underlying conditions. As one with a Mixed Connective Tissues disease, I suspected that I too had caught the Delta variant somewhere. I headed to the emergency room and was surprisingly able to get right in. In that little space on the bed near curtains pulled around me, I heard a lot of coughing, groaning and people asking questions about the virus. I heard doctors talking about lab tests, chest x-rays and how each person was being affected by Covid. One man was in the middle of cancer treatment and the virus had overwhelmed his sinuses to the point that he was experiencing excruciating headaches. Another patient could hardly talk for lack of air. All I could think to myself was, “If I do not already have Covid-19’s Delta variant, I will most certainly have it before I leave here!” 

The doctor ordered a chest x-ray and Covid test for me and we waited. I told him I was fully vaccinated and his reply was that he was too but had just come back to work after two weeks off with the Delta variant. This was the end of July. It would be just weeks and the numbers in our county would soar. The ER where I was treated would close off the entrance with caution tape and turn away patients because they were over capacity. The county health department put out bulletins letting us know we were again in the red stage. This time, however, life went on with very little disruption in public life. Then school opened. 

My daughter-in-law, thinking that the worst was behind us, had taken a new position at a local elementary school in the Special Ed department. She discovered that as a teacher in the Leander School District she would be able to put Bobby in an Early Learning Environment preschool where kids who qualify for an extra boost before Kindergarten attend. The cost would be half of what they were paying for his care at the private preschool/daycare he was in so she enrolled him. AJ would continue at the private school for another year. Three of our family members in three public schools meant that the two unvaccinated littles could potentially bring the virus home again but there was honestly nothing apart from all of us isolating in a cave to avoid the risk. Again, I determined that if I go down from Covid, this time a breakthrough case, I will go down as a full-time grandmother.  Then came the booster. 

A friend in the neighborhood posted on Facebook that she had gotten her booster and I immediately searched for an appointment. In days I had a third dose of the Moderna MRNA vaccine. It kicked my ass just like the other two so I was confident that I’d be in good shape by the time I was through. Another friend in the hood mentioned htat she was enrolled in a study with the University of Texas that would be monitoring antibody levels, both natural ones and those created by the vaccine. I did a search and enrolled as well. A few weeks later I received my results and discovered that I have >2500 vaccine antibodies in my blood stream. That is WAY over their standard measure. Armed with this data, I have been living my life since. Out of respect for others and when required, I still wear a mask if necessary but I am confident that I am protected against Covid 19.  My life goes on and I am most grateful.

Enough

This is a hard time to be alive but geez, the reality that I still am…alive, is pretty cool when I stop and think about it. I turned 60 this year and that’s saying something. I live with Mixed Connective Tissue Disease. I have also had some really crazy health scares over the decades. I have loved and hated western medicine. I have loved and hated eastern medicine. I have loved life. I have hated life. I need to write about the disease, the healing, the process and all of it. 

Autoimmune disease was suspected in my body when I was 16 and began to deal with pain in my knees and elbows for no apparent reason. A visit to the doctor, a referral to a specialist and monthly appointments for a year to rule out his suspicion of Systemic Lupus made life a bit precarious for a while. The symptoms would wax and wane and I was often sick with something but by the summer of my sophomore year I felt good enough to participate in a summer mission experience in Estes Park, Colorado. The time I spent in the mountains with fresh air, good food, plenty of exercise and a whole new group of friends seemed to suit me perfectly. When I returned home and to my doctor, I was given the good news that whatever I had was in remission and I was free to return in a year if I needed to. As a young, zealous Evangelical Christian, I was sure that God had healed me and this nastiness was behind me. 

I continued to be seriously involved in Christian ministry. It was my thing. I finished high school and went off to college only so that I could get a 4 year degree and go on staff with a mission agency I admired. I gave myself to Evangelical faith with abandon fully believing that God had an abundant plan for my life. I didn’t ever worry about or even think too much about an autoimmune disease of any kind. In 1982 Dean and I got engaged and planned to go on a mission to Uganda, East Africa. In order to go we had to submit to several required vaccinations. As we started that process, he would get a shot and barely notice it. I would get a shot and be down for a day or two. The Yellow Fever vaccine really threw me under the bus. We were raising money for the trip and all of the sudden the well dried up. 

We had just enough funds for one of us to go and I knew that it should be Dean. I am not sure if my intuition told me that I would not do well there or if it was just an acknowledgement of the fact that I was planning a wedding at the same time and it just seemed like a good idea for Dean to go without me. Either way, it was such a good decision. Dean came home having had a bout of malaria that almost took his life and most certainly would have mine. He had been taking chloroquine to keep it away but a variant of drug resistant malaria found him and he was very, very ill. 

The early eighties were days without instant communication and unreliable phone service so we didn’t even know he was sick until he came home and told us his harrowing story. He’d lost a good 25lbs and when he walked out of the gate at the airport (back in the day when family could go up and greet people after landing) I barely recognized him. He went on to have several reoccurrences with the disease until his doctor sent his bloodwork to the lab at the CDC and discovered that it was this new variant and prescribed a different medication for it. He has been malaria free since. 

There was one thing I was absolutely certain of the day Dean returned home looking like he’d spent time in a concentration camp. I knew that I had dodged a bullet that had it entered my body, it would have been a fatal blow. I was full of gratitude that I had found the strength and courage to stay behind. I have no doubt that malaria would have done me in. 

It was unfortunate for me that as Evangelical people we had to find a way to miracle-ize the story. We had to find a way to see that God kept me home and kept me alive. There is a verse in the Bible, 1 Peter 3:7 that goes like this. 

“You husbands in the same way, live with your wives in an understanding way, as with someone weaker, since she is a woman; and show her honor as a fellow heir of the grace of life, so that your prayers will not be hindered.”

This verse is just accepted in the Evangelical kingdom as truth and this was the way we made sense of these experiences that year. The lesson to be learned was that I was a weaker vessel and Dean needed to know that in his bones. This one lesson would follow me for three decades and be a contributing factor to the exacerbation of my body’s war against itself. 

I had been in remission and able to live a very full life until March of 1985 when I had my first baby just after my 24th birthday. The hormone changes that come with pregnancy functioned as the trigger to move my body back into battle with itself. As with all autoimmune diseases they rarely present in one full blown obvious illness. Instead the body responds to stress, biological, environmental and mental stress by triggering the inflammation response. It can begin slowly or flare up in earnest. It can affect any part of the body with connective tissue, which is pretty much all of it. After my baby was born it began to attack my bladder. Though that first year of motherhood was literally the best year of my life, I constantly dealt with some really annoying pelvic pain. I was diagnosed with interstitial cystitis, a painful condition that causes the lining of the bladder to crack and bleed and Endometriosis where the lining of the uterus goes the wrong way and attaches to tissue outside of it. The cystitis was dealt with through medication but a surgery was needed for the endometriosis.

My doctor performed a laparoscopy. With two little incisions he inserted instruments, including a camera into my abdomen and looked around. He said it looked like someone had shaken coffee grounds around my organs. He explained that cells from my uterus had gone the wrong way and that whenever I had my period, those cells did too. The result of that process was intense pain every month. He lasered these spots off and encouraged me to hope for better days ahead. He also encouraged me to consider having another baby if I wanted anymore because the endometriosis would likely return and could result in infertility. When my son was 15 months old I found out I was pregnant again. 

I cannot say that I loved being pregnant the first time until well into it. The first 6 months of that pregnancy were overwhelmingly horrible. I threw up in earnest for the first three months and then at a less intense level for another three. Finally, by Thanksgiving I was able to enjoy a meal without an abrupt exit. By March I was ready to have my baby. My long torso made it appear as though I would be having a small baby, even my doctor predicted 5-6lbs. After 18 hours of labor and a few minutes of pushing an 8lb. 1oz. beautiful little red head arrived in my arms. I was completely gone. Having Stephen was so fun that it overwhelmed all of the other nonsense. 

My second pregnancy was much less severe in terms of morning sickness but getting the baby here much more difficult. A little nausea in the morning satisfied by a few soda crackers and life went on. I worked part time in an office job and looked forward to another baby who would arrive almost two years after the first one. It was going so well in the beginning I thought that maybe I actually would end up with the four kids I’d wanted. That sense of bliss didn’t last for long because in the 13th week everything turned upside down. On a calm weekday morning, with my son playing by himself in the living room and chattering to his toys, I sat down to read and pray for a bit. I had put the kettle on the stove for hot tea and when it reached boiling, I got up from my chair, turned to face the stove and felt a sudden gush of fluid escape from my body. As I stood there knowing my water had just broken I went into another dimension and began to work the problem.

I had a regular checkup scheduled that afternoon but knew I could not possibly wait for it. I immediately called the clinic. They wanted to see me right away so I found a sitter and went in. I have learned that memories associated with trauma are vivid and intense and as I write this, I am right there in that space in time. I was greeted by the nurse and my doctor with serious concern. It felt as if they were talking…very slowly. A sample of the fluid was looked at under the microscope. A fern like looking cell revealed that it was indeed amniotic fluid. My heart sank. My doctor grabbed his tiny little black doppler, squeezed a bit of gel on me and sought for an audible heartbeat. He found it. A strong and healthy little whishing heartbeat sound entered the acoustics of the room and a hushed silence briefly fell over us. My doctor said it was unusual to hear it so clearly so early but that it sounded very good. This was 1986 when ultrasound technology was just beginning and hearing a heartbeat was rare for mothers. It was so amazing to me. He then sent me straight up to the hospital for a visual ultrasound used only in crisis situations. I’ve rarely been so afraid.

As I laid on the table with the technician’s warm jelly all over my belly and watched as she moved her probe around, my husband standing by my side watching too, the most amazing thing occurred. This little human waved an arm past the screen revealing all five fingers and seeming to wave at us. Dean later told me that when he saw that he took it as a sign that the baby was waving to tell us she was going to make it. As human beings we find the hope where we can and that was it for that day. It was enough to get us through. 

There was no reason to admit me into the hospital that day but it was confirmed that the amniotic sac surrounded my baby had a hole in it near the top. I was sent home with the instruction to do only light house work and call the clinic if I started cramping or had any other issues arise. I now know that for my doctor and others, it was a certainty that I would miscarry. It was much later before I learned that I had actually been given a less than 1% chance of carrying a baby to term. Instead of the expected miscarriage, however, I remained pregnant for weeks. 

Fifteen weeks later, by emergency c-section, while under anesthesia because the epidural failed to numb my left side, a team of specialists in a teaching hospital where I’d been in bed for 3 weeks, delivered a 2lb. 2oz baby girl. A perfectly formed, very pink and crying baby girl. Everything about it was miraculous. Everything about it was also profoundly traumatic. I have spent the rest of my life trying to understand life lived in this kind of paradox. I have also learned that as a woman, I am not a weaker vessel. I am only an equally strong but different vessel.

I share the story of my babies’ births because the pregnancies are both so directly related to my health, to autoimmune disease and how I have processed it all throughout my life. It was pregnancy and hormones that functioned as the trigger to move me out of remission. It was figuring out how to live life as a young wife, mother and teacher that exacerbated the disease. I have enjoyed seasons of remission and horrific flare ups. Simple colds, flu and viruses have flattened me. Stressful circumstances in my life have also contributed to this reality in my life. I was on medication for several years but at present take just a thyroid medication for anything to do with autoimmunity. I have learned so much. I have lived a beautiful but hard life. 

This past summer I spent weeks meeting with a holistic dietician for issues relating to my gut health. She believes that if I can live 100% holistically, I can rid myself of autoimmune disease. I’m not certain that is possible for me. In fact, I’m pretty certain that it is not because I have other facets of my life that I value more than being 100% cured if this is the route to the cure. To change my life that drastically at 60 would take an intense focus and radical changes in several places and though I continue to make changes all of the time, I do not expect to be fully healed in my lifetime.

I have made many of my dietician’s suggested changes. I have been taking the supplements suggested in response to the lab tests she had ordered for me because they make sense to me right now.  I have found it very helpful and encouraging. At the same time, the expectation to be 100% healed comes with an awful overwhelm. It is also always and I mean it sincerely, ALWAYS shame inducing. It implies that anything less than arrival at perfection is not enough. It is NEVER enough. 

This last week I heard an OnBeing podcast discussion with Kate Bowler. I listened after my friend Jayne suggested it to me. As I sat here in my office, organizing my closet for the umpteenth time, I had it playing in the background. She said something in the discussion that broke me wide open. I don’t remember the words right now because the memory of breaking down in a heap and of feeling the flow of tears stream down my face is overwhelming my brain so that I cannot recall them. I remember just saying out loud,

I am enough. 

What I have done is enough. 

What I will do is enough. 

Whatever level of healing I obtain is enough. 

It is ENOUGH. 

I hope I can write more about how this illness has impacted my life in the days and weeks to come. After breaking open again this past week I have realized that living with Mixed Connective Tissue/Autoimmune disease has been a thread in my life for most of my life. It has also been something that has been hard to talk about sometimes. No, it’s hard to talk about all of the time because when I do, I feel like I’m standing on a stage looking at folks with loaded nerf guns pointing at me. The spongy nerf projectiles all have a cure written on them with a sharpie marker and I am supposed to catch each one and apply that cure to my body. The deal is that only if I catch and apply them ALL will I be able to be fully whole. So…if you are reading this and have such a loaded nerf gun, please refrain from shooting it if you can. I have probably heard of your cure and I have probably spent a good deal of change trying to embrace it.