Friday, December 27, 2019
Written in 2018 while undergoing diagnostics for Autoimmune Dysautonomia.
Tuesday, December 24, 2019
Monday, December 23, 2019
Tuesday, December 17, 2019
Neurodiversity includes awareness that some of us are unable to put things into words the same as others. I am learning to embrace that I communicate differently. My authentic language post TBI is color, imagery and poetry. I take notes in color. I may be able to put things into words and have it sound really good because I was a professional writer and published author in my former life. 10 years ago I was on the cover of the Washington Athletic Club Magazine for entrepreneurialism. Life is different now, because my brain has fundamentally rewired.
Don't feel bad for me. Acquired Savantism is among the greatest gifts of my life. But it comes with challenges that few people can understand. How can I be both a "genius" and "disabled?" Why can't i participate in group outings? Why do I misspeak sometimes? Why have I been so sick the last two years? Because my new brain has some issues.
Perhaps the biggest challenge is that my real thoughts, the deep ocean consciousness that feels too spherical to put into words, cannot be flattened for linear language. Ive tried for years in seminary, each time landing myself in the hospital. Not everyone understands this, and it has led to huge misunderstandings.
Im choosing to embrace my neurodivergent brain, especially the part that holds paradoxes and embraces nonduality with love. A very wise woman inspired me today to recognize that there is important work to be done for those of us with alternative nondualistic voices. It's frightening because the conflict is overwhelming in our polarized culture and I don't have the adrenal system to handle the pain that comes my way. But im discovering that the pain of silence is worse.
Silence and solitude are different. I shall communicate in my own way and rest on God.
Today I wrote this...poetry for my new website home page which will feature my Warrior WOM•AN Collection.
Are you Listening?
She embraces Mystery,
Courageously following primal nudges.
New layers emerge,
Life AND death held together,
Akin to nature,
Her hands take the lead,
There are no mistakes,
In deep ocean consciousness.
The unspeakable rises,
Trauma and joy interwoven,
Dripping with intention,
Colors become complex language,
THE CANVAS SPEAKS.
Are you listening?
Original Art and Poetry by Heather Thompson Blue Phoenix Art www.bluephoenixart.com
Saturday, November 30, 2019
Thursday, November 28, 2019
Henri Nouwen was a spiritual thinker, a synthesist and one of the first in our time, along with Thomas Merton, to consciously develop a “theology of the heart” and to lay this down as a template for both clergy and lay persons. Henri had an unusual capacity to write about the life of Jesus and the love of God in ways that have inspired countless people to trust God more fully.
He showed, and continues to show, a generation of ministers, teachers and seekers how one’s gifts are to be placed at the service of those whom God places in our path. He gives us a model for building the kinds of relationships and communities that will allow each person to find his or her personal mission.
Source: Henry Nouwen Society
Saturday, November 23, 2019
Im contemplating a social media fast. Because I'm in charge of it, then I get to decide what that means and what will be most useful... and im allowing myself a bit of time to really think that through... but it's going to look something like this....
I will fast as long as I feel that it's fulfilling me. I may pause the fast, check in, then start again (intermittent fasting). I'll continue my blog, so you can find new Art, articles and musings there if you're subscribed and interested in such thinks (www.bluephoenixart.com click on blog). Some blog posts automatically share to social media, but I won't be checking it unless I say otherwise. Some of my blogging might even be about the experience of fasting from social media. Who knows what will come of it, but I feel a nudge...and Advent is approaching...so it's timely for me to explore this further.
I'll note that I've been feeling a big urge to fast from food, as it's a very popular means of putting diabetes into remission right now. That said, the medically directed fasting that Fran had me do a month ago actually triggered an adrenal episode along with certain anorexic behaviors. Something I'll write more about another time. But for now, I'll say that there's great power in taking an inventory of how I spend my time (taking the focus off food) and choosing to shift the focus in a healthy way....a fast that is helpful, not harmful.
To be clear...Im NOT fasting from my connections with people. So please maintain contact via email, phone, Facebook messenger or text message. I won't be checking messages in Instagram.
Finally, my reasons for this are many, ranging from a need to deepen my contemplative practice, to a need to move my art in a new direction, to a need to enrich my actual human to human connection (which is difficult when you're living with chronic illness), to a need to protect my heart (and therefore my healing body) from the increasingly painful dialogue during this election season. For me - living with Adrenal Insufficiency and recovering from being very ill with Autoimmune Dysautonomia - these needs are essential to my healing.
After writing all of this, I think I have my answer... I'm just going to begin. If there's anyone who'd like to join me in this social media fast, and together we can grapple with finding other ways of maintaining contact... and dealing with the issues that arise without social media...send me a message (don't reply here, because ive disconnected).
Tuesday, November 19, 2019
Published in the Mighty
Let's get real for a minute about #adrenalinsufficiency. We are not talking about adrenal fatigue. Adrenal Insufficiency is a condition that can only be diagnosed through a cortisol stimulation test (high or low dose). Once diagnosed, a person becomes "steroid dependent" and must take corticosteroids to stay alive.
In my case, it means that my body doesn't produce enough cortisol to handle a burst of adrenaline. It's a rare disease so there's not alot of money in it. No nifty monitors like they have for diabetes. No Epipens to make the injection easier. Instead, it's a fine tuned guess based on situation, experience and symptoms. More stress = more cortisol. Sudden burst of stress = inject immediately or I could die waiting for the oral steroids to metabolize.
This is what the needle and vial looks like (see below). "Draw it up and stab it in the thigh muscle because you're a badass Heather," I say to myself, "and that's what you do when its your life." Then I make myself push the thick bruising liquid in to the muscle. Ouch.
Unfortunately I've had to inject several times in the last month... and I live a fairly quiet life. There's so much more I can say, but for now, I'll leave it with the ridiculous needle.
People have all kinds of judgments when they see someone with adrenal insufficiency protecting their energy. It's so sad because the condition demands a level of self awareness that few could fathom. Instead, misunderstandings develop or gossip begins.
In my case, the are times even I must be clear -I'm not lazy, rude, antisocial, disheveled, conflict avoidant, or any other label that might come out of someone's mouth if they didn't know about my struggles with chronic illness. Furthermore, I am not needy...Lord help me I am not a NEEDY person. In fact, I'm a warrior. Living with an invisible disability as a single mother in a world that often makes assumptions based only upon what can be observed, well, that that's serious strength.
I've recently began a new art series exploring what it means to be a WARRIOR WOM•AN, and I discovered - in the paint - that she is both aware of her vulnerabilities and capable of things unimaginable to most. Sound contradictory? Think child birth.
Having completed the Sentinels of my collection, I'm now exploring medical fragility in the context of what it means to be a WARRIOR WOM•AN. Disability, life with chronic illness, invisible conditions all mean living with an awareness of finitude and the delicate nature of life. It means asking for help, and risking the judgment of others. Some give of their time freely, while others harbor resentment. I was once called a bottomless pit by someone very close to me. It was scarring, but I learned from the experience. From that point on, I made the empowered decision to only accept help from those capable of saying No, because then I could be sure that their YES was freely given. I was no longer going to be harmed by those that said Yes only because they couldn't say No.
As a single mom, I cannot live in isolation. I can, however, be very discerning about those whom I choose to include in my tribe. Transparency, authenticity, direct communication, love... these are all values that we share. Further, we place the needs of the children first. My friends often remind me that my willingness to ask for help is a gift to my daughter. She sees the tribe that unconditionally surrounds us, and she feels the depth of caring. As she grows into a young woman, she will have a healthy sense of what it means to be part of a community, something that's increasingly lost to kids in an online world. Most importantly, she knows she doesn't need to take care of me when I need help... Instead we are surrounded by extraordinary men and women who make sure that we're both squared away. That's what community is for!
I never would have understood any of this until it happened to me. My life was isolated, even in marriage, as I believed I had to do it all. No more... and my life is better as a result.
Wednesday, October 23, 2019
Did you know that diabetes can damage the vagus nerve and cause gastroparesis? I always thought I'd be able to take the great meds that they advertise all over TV....alas...I can't. Im allergic, and the side effects are NO JOKE. Mix food poisoning with anaphylaxis and you've about got it. So I had to go straight to insulin.
Thankfully I have a great doctor (Fran) whose been watching metabolic syndrome set in as I underwent ivig therapy. We knew I had to lose weight and reverse the damage to my pancreas, but I had to be stable. We had to rule out poryphria. And we needed to be certain that my liver could handle it.
Thankfully i got the go ahead, and now Fran's entire team is helping me rapidly heal my liver and put the diabetes in remission. Time to reverse the damage done by the medicines that saved me.
Isn't that interesting? NAFLD and DIABETES are significant problems, but they were necessary side effects given what I was fighting. Puts it in perspective.
And yet as I write this, I know there are those who think I've been making this up, or sharing about it to get attention. There are no words. Just the women warriors I've begun to paint.
Facebook reminded me today of all the people who helped me through a year of grueling treatment. Thank you. I mean it. Words can't express my gratitude today.
Sunday, October 6, 2019
An alternative way to respond to the issues of the day. As a contemplative, I find myself in this stance more often than most alternatives. There isn't a right and wrong way. In my case, as in the story below, it's often a matter of how we are called to be in the world.
Francis and the Wolf
Carlo Carretto (1910–1988) was a member of the Little Brothers of Jesus, a community of contemplatives based on the spirituality of St. Francis of Assisi. In his book, I, Francis, Carretto speaks in Francis’ voice, combining biography with what Francis might say to us today.
Carretto describes Francis’ experience with a hungry old wolf who had been terrifying the people of Gubbio and preying on their livestock.
Francis went out to meet the wolf armed only with love. The townspeople were sure the wolf would eat Francis. But Francis simply considered the needs of both the wolf and the community. He discerned that the wolf was too old to hunt wild animals and just needed to eat, while the people needed safety for themselves and their animals. Francis proposed that the wolf be given food each day, and the wolf agreed to leave their sheep and chickens alone. Carretto writes in Francis’ voice:
No, brothers [and sisters], I was not afraid [to meet with the wolf].
Not since I had experienced the fact that my God is the wolf’s God too.
What is extraordinary in the incident of the wolf of Gubbio is not that the wolf grew tame, but that the people of Gubbio grew tame, and that they ran to meet the cold and hungry wolf not with pruning knives and hatchets but with bread and hot porridge.
This is the miracle of love: to discover that all creation is one, flung out into space by a God who is a Father, and that if you present yourself as [God] does, unarmed and peaceably, creation will recognize and meet you with a smile.
This is the principle of nonviolence, and I want to recommend it to you with all the enthusiasm I can command. . . .
If human beings go to war, it is because they fear someone.
Remove the fear, and you re-establish trust, and will have peace.
Nonviolence means destroying fear.
This is why I, Francis, tell you this once again: Learn to conquer fear, as I did that morning when I went out to meet the wolf with a smile.
By conquering myself, I conquered the wolf. By taming my evil instincts, I tamed those of the wolf. By making an effort to trust the wolf, I found that the wolf trusted me.
My courage had established peace.
You can deduce the rest by yourselves.
Just think what would happen if one day you became nonviolent, and took the huge sums of money you spend on defending yourselves against fear and used them to help the people of whom you are now afraid. . . .
You will know peace then.
Is that too much to hope?
Perhaps someone is listening to me!
To whoever it is, I, Francis say: Be brave!
The above excerpt was prepared by Fr Richard Rohr.
Wednesday, September 18, 2019
It brings me to tears tonight watching #agt America's Got Talent... THE FINALS!
Kodi Lee, a blind, autistic, neurodivergent musical savant won by popular vote on one of the world's biggest stages. POPULAR VOTE. The voting audience saw his brilliance. He didn't hide his disabilities.... he was himself-authentic- and he sang his heart out. To see him win brings me to tears.
Im not autistic like Kodi, but I know how it feels to be neurodivergent with disabilities and a savant talent. It's easy to feel invisible sometimes. Worse, there are times where people only see the disability/illness, and the judgment hurts. It's challenging to choose to share my savant ability (painting) under those circumstances. Still, I keep painting no matter the reactions of those around me because it's in my soul!
To see that expressed in an even more powerful way this season on AGT has moved me to start a new artistic expression.
To watch Kodi soar in the finals and again tonight.... well.... I'm inspired in ways that leave me speechless. The color I feel, though, is a deep sparkling and swirling bowl of thick purple liquid with tinges of turquoise, fuchsia and gold spreading to every cell in my body! Ahhhh.... if only synesthesia could be my language!
All my love to #kodilee for his extraordinary win tonight! Your fellow neurodivergent savants are cheering you on! I think my daughter and I need to finally get on a plane and go to Vegas.
Monday, September 9, 2019
Never take the simple things for granted. Do you have your health? A solid job? Good family? Can you drive? Can you walk? Are you able to work? Are you healthy enough to parent your children? Do you have loving relationships? A faith that nourishes you? Do you live without pain? Can you breathe unassisted? Can you smell the earth after a rain storm? And the list goes on.
St John of the Cross (one of my favorite mystics) was imprisoned and beaten by fellow monks for months. During this painful time, "the dark night of the soul, " he found gratitude in the miracle of a flower blooming outside his cell window.
Every day is filled with miracles, if we open our eyes and learn to see. It often requires radical stillness to finally open up eyes that have been trained to see according to the dominant culture. "Be still and know that I am God." I too have been guilty of setting goals higher and higher without noticing the miracle of where I am. Many times ive been leveled, forced into stillness, and reminded that my call is in the quiet.
Every day, I see people take things for granted... everyday things like walking up stairs.... but I notice because I'm fighting to be able to do those very same things.
Today I paused with C to observe the difference between where i am now, where I was a year ago, and where I was two years ago. I'm making huge progress, yet I'm not going to take a single moment for granted. Living wakefully is my imperfect hope for today. Amen.
Saturday, September 7, 2019
Ive been through so much medically, spiritually, physically. There are moments that I recognize my face again, but that's only on the outside. Mu eyes remain the same. As I reflect, I've transformed more through this last two years of painful healing work than ever in my life. I never thought I'd go through something more challenging than the TBI and divorce in 2011. Yet here I am...walking out of another formative maelstrom. Im not looking backwards; no, I'm embracing what is to come, even as the ultimate outcome is unknown.
Thus, I hold onto the prayer....
I come trembling to the feet of Jesus and ask, who will I be tomorrow?
Thursday, September 5, 2019
Living in one's truth...
Dying because of it.
My heart breaks.
Lord, hear my prayer.
It's beyond words
Where I'm speechless
And there's only a deep
yearning, hope, longing
That we learn to LOVE
Because I feel broken
Every time we KILL
Sunday, September 1, 2019
I did it. I rode my horse Harvey after 2 years. He's a 17h warmblood. A former grand prix jumper. My warhorse. It's humbling, as I've ridden horses for 30 years.... but you start where you are.... and after 2 years of painful treatments, I'm ready for rehab. Harvey is my warhorse, my heart, the blood in my veins. After everything I've been through, I'm grateful to even be capable of riding again. Thanks be to God.
Friday, August 30, 2019
I did it! 3 visits means that tomorrow, for the first time in two years, I'm gonna get back on my big warhorse.
It's something that ive been fighting for... my Harvey literally has my heart beating in his chest. I need him. But he's not like other horses. You don't just get back on a horse like Harvey. Ive been close many times, only to crash. And today, I almost lost my chance. A mandatory orientation at my daughter's school did me in. Im sure none of the people there noticed that I was having a tough time, but my adrenal system struggled to made it through. Thanks to stress doses I did it! Then i came home and slept to recover. This is life with an #invisibledisability. Kiddo always comes first, even if it means waiting on Harvey.
But......As I sat here pulling myself back together (this is why I don't attend group activities... I'm not antisocial...I just can't do it!), I thought for a moment that I wasn't going to be able to ride tomorrow. It's all I wanted for my birthday. I prayed for God's will.... and slowly i could feel my body begin to rejuvenate. Yes, i can ride tomorrow!
We need something to keep us reaching. Harvey is my constant reminder that God is Grace. And tomorrow I get to feel his great power beneath me. Thanks be to God.
Friday, August 23, 2019
I am neither Democrat nor Republican. Having taken Masters level courses in criminology and social justice in my youth, and having become a contemplative monastic in the second half of life, It's no secret that I walk with those on the margins. This is the core of my secular Franciscan theology.
But I don't live in a vacuum. My study of constitutional law and political science in college cultivated a love of our Republic, especially the constitution and the supreme court. I remember standing on the steps of the Supreme Court with pure admiration. Why? Their only job is to interpret the Constitution. Wow! They are the protectors of our freedom.
Why am I writing all this?
Im concerned. The political discourse is raging, taking on constitutional issues like the 2nd Amendment, the electoral college, abortion, and more. As our constitution takes center stage in this election, people on both sides of the aisle are debating issues using a present day lens and/or considering intent of the Framers.
Im looking at it differently. Im curious about the precedent we are setting for the next 400 years....1000 years.... if we are lucky enough to still have a nation. Our fellow nations around the world have histories that go back thousands of years. Can you imagine how that perspective impacts governance?
As a contemplative I'm sitting with the question: How will the decisions we make today impact the future of our nation, a future that we cannot imagine? It's a big question, and sitting with it makes it impossible to easily take sides on current issues.
Thus sitting with these questions helps me better grasp the various perspectives with curiosity as I discern my own opinions.
Those who have discerned that they are called to fighting for what they believe, this is not a statement to stop.
This is my statement of concern and questioning. A statement I felt called to share (which I rarely do). Perhaps it might ring true to another who feels similarly, and it opens space to take an alternative position.
Art by Heather Thompson
Blue Phoenix Art
Monday, August 12, 2019
I'm becoming aware of the road that lies before me. It's not about getting back to where I was. No, this has been more akin to the head injury I sustained in 2011. I have transformed again, and I have come to accept this new normal. This body is beautifully imperfect. This soul carries a connection to God that I never could have imagined, and im at peace in my contemplative monastic life.
And yet the time has come to begin walking my body through the phases of healing. It feels daunting. Im choosing to focus on the present moment. I am at peace in this moment. God, how can I serve your will in this moment?
I would welcome prayers for healing and for Gods will in my life.
Saturday, July 27, 2019
Prayers are answered. Yesterday I learned from the neuromuscular experts at UW that I no longer need to be concerned about neuromuscular disease. What a relief! This includes LEMS, and it means that I can come off the firdapse immediately. That's one less medicine (HOORAY) and one less avenue of diagnosis. Whether it was an entire year of high dose IVIG that did it, who knows?! I'm grateful. Thank you God.
The Doctor identified something wonky with my eyes yesterday, so I have to follow up on that.... but that's small compared to the other issues that have been on the table.
Although I still have other health stuff to deal with, including a still undiagnosed inflammatory something, I'm beginning to see things heading in a new direction of healing. Im having much less breakthrough pain and im able to move around more without crashing. That said, my pace is slow. I get very tired very easily. The nausea and body pain are my reminders when ive done a little too much. If I really over do it, then it's usually an attack of some kind... so I will keep everything "country slow" as I make the adjustments that my doctors ask of me. My stress level will remain as low as possible, therefore no school for now. Painting, mothering, spending time with my animals, REHAB with Harvey... this is my life as I heal. Slow and very steady.
As I surrender to God. Not my will but thine.
Thursday, July 25, 2019
... that's not the way to going!
It's been almost exactly 2 years (2017) since the machete pain suddenly hit my back. 3 years since I lost my hearing (2016), was placed on prednisone for the first time and discovered I had adrenal Insufficiency. 4 years since the CDIFF superbug landed me in the hospital (2015) followed by a microbiome transplant at Harborview that cured me, but changed my body forever. 6 years since the divorce was final (2013). Nearly 8 years since the TBI that changed everything (2011), and the day I learned my husband didn't love me anymore. Almost 11 years since the life threatening birth of my daughter (2008)...
I could go on but I won't. It's been a decade of learning!
And after all of this, today I came to an important awareness, which I will share.
Im whole exactly as I am.
Im not trying to get back to something I was before this latest fiasco with my health.
Im moving forward into the unknown of healing.
May God lead the way.
Not my will, but thine.
Sunday, July 21, 2019
In this election season, many are surrounded by like minded individuals, steeped in likeminded commentary, fed news by likeminded outlets. Ive heard the rhetoric on both sides grow progressively more polarized since the last election, even describing the other as evil. Dehumanizing others is dangerous, no matter how despicable we find their views and actions. Ive returned to reading lessons from Etty Hillesum to remind myself of LOVE even in the most hateful circumstances.
In my spiritual tradition, Jesus prayed for those that tortured and murdered him. This is not a lesson to be taken lightly. This is a reminder of just how deeply we are called to LOVE in Christianity.
I am now asking questions, including the source of my information. Where am I learning about what the other side is saying? What would it look like to actually discuss opposing views, human to human, with someone with whom I disagree? Finally, as community is replaced by online forums and large hives of people with similar views, where's the every day communal interaction that pulls us to the center?
Monday, July 15, 2019
My daughter and I were discussing social media and why we're holding off on it for her...We discussed the way that kids can be mean to one another on the internet. We also discussed that it's easy to feel left out when kids are posting about their outings and parties, and you weren't invited. Sadly, even with my very tight friend list, I was able to show her examples in my adult world- moments where mean things were said and times when I felt left out. Even if I can't go to things because I'm sick, gosh it's nice to be invited!
Empathy. Compassion. Awareness of others. Think before speaking/posting. Consideration. Im not perfect. That said, Im contemplating digital citizenry, because our online world creates distance while making us feel artificially connected. As we become more distanced from one another, we run the risk of dehumanizing the other as OTHER. Kids and adults together.... we must do better.
Tuesday, July 9, 2019
Etty Hillesum was a contemporary mystic who died in a Nazi Concentration camp. At the end of her life, she wrote about the connectedness of all things... I believe her insight is timely, as we become even more polarized. We need to learn to see our connection before fighting over our differences.
"Through me course wide rivers and in me rise tall mountains. And beyond the tickets of my agitation and confusion there stretch the wide plains of my peace and surrender. All landscapes are within me. And there is room for everything. The earth is in me, and the sky. And I well know that something like hell can also be in one, although I no longer experience it in myself, but I can still feel it in others with great intensity. And that is as it should be, or else I might grow too complacent." (Page 156).
Monday, July 8, 2019
This weekend I was challenged (again) to remove the negative power and cultural shame of the word FAT. Just as I've done with other words that used to raise deep fears of abandonment, the word FAT comes with huge judgments and socially acceptable discrimination hidden beneath the auspices of concern for what's healthy. Unfortunately, one only has to look at those that lose weight due to chronic illness (people say...you look great!) compared to those that gain weight due to illness or treatments like steroids (silent uncomfortable stares, gossip, and unhelpful physician commentary).
So im working on this right now. Im learning to take the power out of the word FAT. This is another layer of healing from anorexia, exercise bulimia and orthorexia. No more justifying my body, whether larger or smaller. No more determining wellness by what the scale says. Im just loving my body as she is. And this next level of healing is badass.
Wednesday, July 3, 2019
Many don't realize how before and after photos could hurt those living with disability or chronic illness. Perhaps they don't see the inherent privalege associated with being able to do something about their image or weight, because their body has the ability to move, exercise, take in food properly, etc. Being able bodied is truly a gift.
It's hard to explain to people what it's like to NOT have the above options for the first time in my life, and to walk alongside many who are also struggling with such basic things as eating.
Generally I don't mind the side by side posts, as i want to celebrate the success of others! But ive noticed an increased number of side by side pics that say "This is what health looks like. This is what self care looks like. This is what self love looks like. " In other words, losing weight is what self care, self love and health looks like.
This is the assumption that must be challenged. I was not healthy as an anorexic, even if all the men in my life thought I was "HOT AF" when I was 100 pounds. Im not healthy now because of multiple chronic illnesses, not because of weight. In fact, my doctor (Chief of Metabolic and Bariatric Medicine) has instructed me to stop focusing on my weight because it's causing harm to my body. In other words, my weight is out of my control as my injured hypothalamus has a temper tantrum. Furthermore, losing weight can cause harm right now, as I'm in the final stages of diagnosis for a very rare disease where weight loss and low carbs can cause excruciatingly dangerous acute attacks.
So when you can't change the external appearance because you're not able bodied, the time comes to find self love and acceptance in a much deeper space.
Loving myself as I am in the midst of illness, with total loss of control, has been among the most challenging and badass things I've ever had to do. That said, it's the journey I'm on toward healing, and I continue to walk it one day at a time.
Sunday, June 30, 2019
Today I begin a few days with no neuromuscular meds prior to a super fun test (needle above my eye measuring muscle weakness) on Tuesday.
Next week I meet with the Porphyria expert. And lots of dr appts. With Mayo July 30th.
It's moments like these that im grateful for a cross based theology, as I know that God is walking with me in the midst of my struggle. I know that God has experienced so much for suffering than I could ever imagine having been tortured and crucified, and therefore God pours out grace and compassion for those of us that are experiencing hardship....God understands what it is to be human...God gives us strength to endure and persist especially when the suffering is great...AND God will guide me through all of this toward the right outcome for my life.
Just as Jesus prayed in the Garden, not my will but God's. I am allowed to complain, but in the end it's total surrender.
Saturday, June 22, 2019
I read this last night thru random opening of scripture, and it illuminated something deeply important about my use of language. As I try to force myself into linear writing to produce a book, I keep crashing.... but the language of art, color, poetry, Theopoetics... it all comes so easily... and it IS language. Just as my deaf grandmother spoke in the imagery of sign language, I speak through art. Then I read this verse from Corinthians and it literally left me collapsed. I slept better than I have in recent memory. Now it's time to paint, and I believe I have something to say.
1 Corinthians 2:12 NIV
12What we have received is not the spirit of the world, but the Spirit who is from God, so that we may understand what God has freely given us.
13This is what we speak, not in words taught us by human wisdom but in words taught by the Spirit, explaining spiritual realities with Spirit-taught words.
14The person without the Spirit does not accept the things that come from the Spirit of God but considers them foolishness, and cannot understand them because they are discerned only through the Spirit.
15The person with the Spirit makes judgments about all things, but such a person is not subject to merely human judgments, 16for,
“Who has known the mind of the Lord so as to instruct him?”
But we have the mind of Christ.
Tuesday, June 18, 2019
We'll See - Taoist Story
There is a Taoist story of an old farmer who had worked his crops for many years. One day his horse ran away. Upon hearing the news, his neighbors came to visit.
"Such bad luck," they said sympathetically.
"We'll see," the farmer replied.
The next morning the horse returned, bringing with it three other wild horses.
"How wonderful," the neighbors exclaimed.
"We'll see," replied the old man.
The following day, his son tried to ride one of the untamed horses, was thrown, and broke his leg. The neighbors again came to offer their sympathy on his misfortune.
"We'll see," answered the farmer.
The day after, military officials came to the village to draft young men into the army. Seeing that the son's leg was broken, they passed him by. The neighbors congratulated the farmer on how well things had turned out.
"We'll see" said the farmer.
Monday, June 17, 2019
"Cynthia Bourgeault continues reflecting on authentic love, distinguishing it from infatuation or romance. She begins by sharing insights from Scottish psychiatrist Maurice Nicoll (1884–1953), offering a basis for understanding union within the Gospel framework. Nicoll suggests that laying down one’s soul for our neighbor “is the supreme definition of conscious love.” Cynthia explains:
That is to say, through a life of conscious love—the persistent practice of laying down one’s life for the other, of the merging or union of wills in the effort to put the other first—the conditions will gradually come about for the creation of one soul. As long as the life goes on, in a renewed union of wills, one may speak of one soul, “for the soul is the image of the life.”
This union of souls cannot be done out of sheer romanticism, that initial rush of erotic attraction that is all most of us ever know of love. It is not a product of attraction, but rather of purification: the commitment with which the partners adopt the spiritual practice of laying down their lives for each other—facing their shadows, relinquishing old patterns and agendas, allowing all self-justification to be seen, brought to the light, and released. In other words, without a mutual and conscious commitment to bring one’s human love into sympathetic vibration with the sacrificial and giving love that is the font of all creation, there is no union of wills or souls. The willingness to die, on whatever level, for the other’s becoming is the practice that gradually transmutes erotic attraction into a force of holy fusion. . . .
Love calls forth the reality of the beloved, and the act of loving calls forth our own most authentic and dynamic center. The result is a mutual thrust deeper and deeper into becoming, the unfolding of the wonder of each person. . . .
If there is a secret to love’s transforming power, surely it must lie in its uncanny ability to call forth who we truly are. “Love always seeks the ultimately real,” says [Beatrice] Bruteau ; it has an infallible knack for pushing though dim outer shells and inner dark places and bringing the essence of who we are into the light. Love always brings an increase in being, and it does so by giving us the courage and power to live out who we truly are. . . . Love actualizes essence.
One fact that contemporary psychology has made eminently clear to us is that wholeness can come about only if we embrace the whole of ourselves—not only what is highest in us, but the shadow as well. For majesty to grow in us, all must come to the light, both the dark parts of oneself that need healing and the light parts that need birthing."
For more information, look up the Center for Action and Contemplation and Fr Richard Rohr.
Thursday, June 6, 2019
When I was married, it was a difficult relationship, but on a very base level, there was backup when one of us was sick. This was something we argued about, but even partial backup was of incredible value. If one of us went to the hospital in the middle of the night, the child was not affected.
As a single parent, there is no backup except the tribe you build. I've learned that this tribe must be at a level of communication and support like a marriage, so you can say yes and no authentically... and so that mom can ask for help without the worry of being perceived badly.
Imagine waking up very sick (borderline ER sick)... The kid still needs to get to school. How's that going to happen? This is real life. And it's something most single parents don't discuss. And yes, it's different than having a husband who travels alot. It's a sense of helplessness... and in my case, I built a community of people that are there for us so that we've got back up. But many are on their own.
Our society can do better with single parents. Building a tribe is hard! You endure endless occasions of people treating you like an inconvenience before you find your people.
As a monastic, minister, and a single parent living with chronic illness, I invite you to consider if you have something extra to give to the single parents in your community. Can you say yes AND no when someone asks for help? You must be able to say NO otherwise your YES isn't authentic. That's all you need.
I've thought about starting a single parent tribe, but it scares me to think about strangers helping strangers. So the best thing I can do at this moment is encourage my community to look around, and offer to be of service.
Tuesday, June 4, 2019
I've been contemplating.... from the professional athlete to the bed-bound quadriplegic...what makes a person "worthy?" In this culture, we place too much emphasis on what we're able to DO, assigning more value to the person who can DO more. Im grateful for this time in the quiet, with limitations, as I've learned to separate worth from what one can DO. All humans come with inherent value as a part of the body of Christ. From the newborn to the dying, we're all gifts from God. We must remember that human worth is not tied to production, intelligence, athleticism, etc. Human worth is given freely to all those who are human. We're all endowed with gifts. Our culture simply needs to learn to notice.
“Unworthiness is often the greatest barrier to receiving love and pleasure. Even when someone gives us a genuine compliment, it can be hard to receive if we don’t feel equal to what’s being said. Imagine how difficult it is then to receive divine support when we don’t feel equal to the generosity of life.
Worthiness is the value, importance, and goodness that we ascribe to ourselves and to the world. But so much of what we value was inherited from our families and our culture. On the path to belonging, we must untangle our true values from our inherited, collective ideas of worth - and lack of worth - that have been woven into our beliefs.”
Excerpt from “Belonging: Remembering Ourselves Home” by Toko-pa Turner (belongingbook.com)
Sunday, June 2, 2019
Progress. Im making progress. And im learning about new potential diagnoses in the midst of what we already know. As we name the diagnoses, I become increasingly empowered.
Im up to 3500 steps and I'll increase by 500 every 5 days as I can handle it. For the first time, I'm on a normal replacement dose of hydrocortisone for adrenal Insufficiency. The pain has been down for the last two days (after a brutal flare last week). I'm off insulin. Off ivig. Off high dose prednisone. Less nausea. Slowly driving more. Slowly getting more energy. And a week of doctor's appts coming up before I head to Mayo in July.
I'd say im making progress. We still lack a full understanding of my diagnoses and how they all work together, hence the Mayo trip. But we're getting closer. In the mean time, I'm healing my microbiome after a month of massive antibiotics. But holy cow, my weight is going up like I'm on ultra dose prednisone!!! Grrrrrrr. Thankfully I see the dietitian and the naturopath this week too. No advice needed here from the hive... I'll look forward to teasing it apart with my medical team.
This is all to say..... I'm healing so slowly. And im so thankful for all of the amazing people cheering me on.... helping me to walk this path.... helping me to accept my body as she heals... helping to drive... helping me to finally love myself regardless of whether I'm "perfect" or a mess or somewhere in between.
As my spiritual director encouraged me to explore.....
"My Grace is sufficient for you. "
Tuesday, May 28, 2019
This woman did a beautiful job communicating something that I've experienced..... hearing "at least it's not cancer" can be indicative of just how little people understand the spectrum of disease. We have a culture that gathers around those with cancer as they undergo treatment, with a motto that we're fighting cancer! But how do we react when someone knows they won't get to remission, and cancer becomes a chronic illness that they live with? I dont know the answer as I don't have cancer.
What I do know is that we tend to ostracize those with serious chronic illness because there is no end goal. The illness waxes and wanes, and people grow tired of the illness pattern (heck, I'm sick of it too!). We push people away knowingly or unknowingly even as they undergo the same treatments as cancer patients, because we don't understand the magnitude of the disease. Let's face it, who could understand what it's like unless they've lived it?! An analogy.... how do you explain natural childbirth to someone who has never experienced it?
I've had my fair share of minimizing and disbelief from other people, even those closest to me. I've been a part of communities that have rallied for those undergoing cancer treatments, yet have never spoken a word to me. And this is what I've learned....
Never minimize the suffering of others. Those in pain are worthy of support, not judgment. I've endured enough judgment for a lifetime. That said, it's been a beautiful teacher as I've finally learned to let go of the opinions of others and walk God's path.
Tuesday, May 21, 2019
A Meditation by Franciscan Fr Richard Rohr
"The highest expression of the spirit is the one that opens us to the Great Other, in love and trust. It establishes a dialogue with God, listens from the conscience to God’s call, and delivers us trustingly into the palm of God’s hand. This communion can be so intense, say the mystics of every tradition, that the soul of the beloved is fused with the Lover in an experience of nonduality; by grace we participate in God’s very being. Here the human spirit is touching the hem of the Holy Spirit’s garment. —Leonardo Boff
The Holy Spirit is the love relationship between the Father and the Son. It is this relationship itself that is gratuitously given to us! Or better, we are included inside this universal love. This is salvation in one wonderful snapshot.
Jesuit Richard Hauser (1937–2018), who focused much of his teaching and writing on the Holy Spirit, saw that the indwelling Spirit leads to union and love:
This love has as its object God, as well as other people. Christian theological tradition has most often seen the Holy Spirit in the Trinity as the bond of love between the Father and the Son. . . . The primary effect of the Spirit acting in people . . . will be love, both for one another and for God. . . .
God’s Spirit joins our spirit; it does not replace it. The good acts we perform are truly our acts, not simply acts of the Holy Spirit in us. The deepest part of the self is the spiritual dimension. From the center flows all our freedom and love; at this level we remain free to choose to move or not to move with the Spirit. The Holy Spirit is indeed active in us at all times drawing us toward greater love and service of God and others, but the Spirit does not control our response. That flows from our freedom. 
This loving relationship shows itself in myriad forms, such as the endless diversity of insects and wildflowers, culture and art, medicine and science. Each manifestation expresses God’s endless desire to create new forms of life and externalized love. All things good, true, and beautiful are already baptized in the one, same Spirit. (Read Ephesians 4:4-7 anew!)
The Holy Spirit shows up as the central and healing power of absolute newness and healing in our relationship with everything else. Anglican mystic Evelyn Underhill (1875–1941) defined mysticism as “the art of union with Reality.”  The Spirit is the artist painting this union through us!
The Spirit’s work is helping us stay in relationship and building connection. The Spirit warms, softens, mends, and renews all the broken, cold places in and between things. Invisible but powerful, willing to be anonymous, the Spirit does not care who gets the credit for the wind from nowhere, the living water that we take for granted, or the bush that always burns and is never consumed."
Monday, May 20, 2019
There's a fine line between feeling like a bump on a log and noticing that you're practicing good self care before a fledge that will most certainly be physically taxing.
The difference of course is attitude. My attitude sucked this morning.
As I have attempted to be quiet, I have felt the engine within telling me that I need to make progress on my to do list in order to feel worthy of even being called human. Negative self talk has been coursing through my brain today as i attempted to gently take on one task at a time. Knowing that I was being hard on myself, I went so far as to Google what it's like to heal from a serious infection. Turns out the CDC had a fact sheet on the topic. Ahhhhhh yes.... the message was simple.... go slow.... healing takes time.
So I opened the back sliding door on my mountainside home to let my dog out, took a deep breath of moist forest air, and then it began to RAIN. Sitting here, listening to the pounding RAIN running through the boughs of old growth cedars and down rivers of rockery, it became clear that time in the quiet is one of my spiritual practices... and I have gotten away from it recently. Yet meditation is a key component of my monastic life. I needed to see that I had reframed meditation into some kind of laziness. How unkind. What part of me is pushing so hard against the contemplative monastic life that I joyfully feel called to lead?
I need to paint the answer to that question. In the mean time, i shall be grateful for the insight today. Healing means listening to my body, avoiding judgment of where I am, and giving my body what she needs in the moment. Be still.
Tuesday, May 7, 2019
Monday, May 6, 2019
Sunday, May 5, 2019
Reading all of the quotes from Rachel Held Evans, a young theologian writer who suddenly passed away this weekend.... i'm feeling deeply moved. She had the courage to be bold with her voice. She spoke openly of doubt and faith. And now it's her voice, translated from thought to writing, that remains as she is gone. She was only 37. Watching this unfold creates a sense of urgency for me. I have so much in my head that I haven't said aloud, things i'm afraid to write, but things that need a voice (art, poetry, words). I shall pray for the courage to speak with the bold voice that I have been given. I will give the implications of my words to God, as St Augustine teaches that my words can be an interior journey between me and the DIVINE... it doesn't have to be for anyone else. And as I pour out the truth as i know it, avoiding my desire to spin things for the comfort of the audience, my body will heal. Am I finally ready?
Proverbs 31:8 ESV
"Open your mouth for the mute, for the rights of all who are destitute."
Go to Medium to read this latest article.
“There is so much I thought I knew... A meditation on Empathy.” by Heather Thompson https://link.medium.com/VeBo6JiIqW
Saturday, May 4, 2019
There is so much I thought I knew... in my business and personal life I really thought that I understood what another was going through because I'd gone through something similar. With empathy at the core, I attempted to relate, advise, coach, and teach on everything from sales training to business strategy to the painstaking challenges of growth. I had a strong voice for keynotes, and I was therefore in high demand on stages across the country. I focused on the importance of bringing empathy back into healthcare, placing it at the center of an organization's brand and making it an authentic cornerstone of all aspects of operations. It was a powerful message, one that arose out of the pain of walking the hospice path with my former father in law.
While my words were motivational and inspiring to business entities, I had a lot to learn about empathy in the very human to human interactions of daily life. My former understanding of empathy placed me at the center of relating to another. In other words, I found myself saying..."I too have traveled a road like that so I understand how you feel. "
As much as I don't want to acknowledge it at times, there's an arrogance that can accompany this kind of empathy. Even with the best of intentions, I find myself judging the other person because i'm only looking through my own experiential lens.
How could I possibly know what it's like to stand in their shoes?
I can't. This is among the most humbling realizations of my life so far. It's why I embrace the "little way" of Franciscan Theology, and do my very best to acknowledge the reality that I don't know what another is experiencing...i simply can offer to walk with them, sit beside them, or hold them in prayer.
Today, i'm learning to use my voice in new ways. I'm learning to listen without attempting to relate from my own life experiences.... and instead attempt to relate from the field that Rumi describes..."Out beyond ideas of right and wrong is a field, and I'll meet you there. "
Alas, i'm also human. So i'm I know I'll make mistakes and exist in the non dualism of my own failures. I suppose that's why Maya Angelou said that "when you know better you do better. "
Today's meditation may give rise to more meditations.... and if they do...I will share them as i'm realizing that my voice is emerging and i'm choosing to let it flow. Perhaps using my voice in this way will heal me as it has done for so many others. I cannot know; I simply keep walking.
Friday, April 26, 2019
Have you considered a contemplative life, but don't know where to begin? How do you know if God's call is contemplative or more extroverted?
The following is an excerpt from a blog post on Contemplative Light:
"All that is required is a desire and an intention. If you are reading this it means you already have a desire and I'm willing to bet your intention is just around the corner. I'm willing to bet you have been finding the usual ways of culture and society are no longer appealing to you. I'm willing to bet the things you once enjoyed no longer satisfy the longing in your heart. That you feel less and less connected to the people around you, as if you feel called to something they don't even know exists.
If any of these describe you then God has already called you to the contemplative path and that indescribable longing you feel is your guide on that path. Trust it. Follow it. Let it lead you into the silence. Let it lead you into a deeper way of being human. Let it transform you into the image of God. Because it will if you let it. If you decide to follow that small still voice within it will never lead you astray, even if you have no idea where it's taking you.
Just know that longing is calling you into the unknown. It is calling you out of the bright and easy pasture and into a darkness and a mystery. But it is infinitely better! Follow that small still voice into the shadows and the unseen places and there you will receive true light that opens your eyes and makes you new."
Read the full article by clicking on the link below...
Saturday, April 20, 2019
For those who celebrate Easter, we cannot skip over the darkness of the tomb. Today, we pause to remember that humans crucified the begotten son of God... and for the time before the resurrection, humanity lived with the reality that the messiah was dead. This "present moment" mindset challenges us to think about the suffering involved in the liminality of the unknown.
This was described Richard Rohr, so i'm passing it along...
"As I shared earlier this week, Jesus replaced the myth of redemptive violence with the truth of redemptive suffering. On the cross he showed us how to hold pain and let it transform us rather than project it elsewhere. I believe one of the greatest meanings of the crucifixion is the revelation of God’s presence in the midst of suffering. God suffers with us.
Even when we may feel alone and abandoned, as Jesus did on the cross—“My God, my God, why have you forsaken me?” (Mark 15:34)—we can trust that divine love is holding us. Thankfully, we know the end of the story from the beginning, that after death comes resurrection, after injustice comes liberation, after wounding comes healing. But we can’t skip over the darkness of the tomb.
On this Holy Saturday, before the joy of Easter morning, befriend and be close to sorrow, whether your own suffering, that of a loved one, or the pain of creation." Fr. Richard Rohr
Why is my art studio named Blue Phoenix? My theology is an integration of Chinese Medicine/Tao and Ancient Christianity. The Chinese Phoenix is a powerful symbol that integrates both the flow of the Tao and the Eternal Christ in one artistic image.
Blue Phoenix is derived from the Chinese Feng-huang, which is described in the attached article. Note that this phoenix is different than the mythical birds of the western world....the Feng-Huang is immortal without needing to go through a cycle of death and re-birth.
"Beautiful, graceful, loyal, and honest, the Feng-Huang represents all the virtues, calling us to a higher level of life, filled with justice, peace, prosperity, and faith. Such symbolism needs no physical counterpart; the Feng-Huang already has the best of this world in its imagery. It is up to humankind to manifest these virtues substantially on the earth."
Tuesday, April 16, 2019
The symbolism observed by the devastating fire at the Church of Notre Dame this Holy Week is profound. The path of descent, Pascal Mystery, Death and Resurrection, Yin/ Yang are readily apparent in the destruction.
Everything must be held loosely.
Moments like this remind me of the root of Christianity- God CRUCIFIED and RESURRECTED. It's shocking. As Kierkegaard said, it doesn't fill the pews when you preach the very real suffering and loss that stands in juxtaposition to new life in Christ. The reality... humans CRUCIFIED God. And we are loved by God beyond comprehension.
Loss accompanies life.
Hard lessons to contemplate tonight.
Jesus prayed....Not my will but thine. He knew... and still he surrendered.
From my hospital room, unable to sleep, feeling compelled to share... may I walk gently this holy week.... may I try to dance as I heal (from my Spiritual Director)... May I maintain a loose hold on things temporal, and a firm grasp on my faith in the Divine Source with heartfelt hope for genuine healing. Amen.
Saturday, April 13, 2019
I'm ready for Easter. Not the cute bunnies and egg hunts (those are great too), but i'm talking about movement through the suffering of the cross and into the goodness of resurrection.
Advent and Lent get me every time. EVERY TIME. Alas, one doesn't get to skip Holy Week. I'd imagine Jesus wished he could simply skip this week too. But he didn't ask to be absolved from the suffering when he saw what was going to happen. Instead he completely surrendered to God.
“My Father, if it be possible, let this cup pass from me; nevertheless, not as I will, but as you will.”
Not my will, but yours.
As I contemplate the immense suffering of Jesus this week, combined with the joyful resurrection, I will not complain about my situation. I've been very sick and fighting. I still am sick and fighting a bad infection. Yet there's been so much grace...I see it every step of the way...I feel as if the Spirit held me in her care all week... and I shall continue to rest there while I heal. Asking for God's will, not mine.
That's what this faith is all about.
Totally badass when you think about it.
Sunday, March 31, 2019
Just how much my life changed is a topic for another day. That said, I was gifted with relief of my shame in the wake of the injury. It was a kind of grace beyond comprehension. For the first time in my life I no longer felt the need to hide my truth.
Over time, through years of healing work and now seminary study, I've come to realize that shame is common among us: It's part of the condition of being human. As I allow myself to be vulnerable with others, I break down the lies that shame tells me and I am strengthened in my authentic self.
But as I write this, I feel compelled to note that human beings won't always do a good job of understanding or engaging with my vulnerability. Sometimes they may even perpetuate my shame by saying something hurtful. My courage comes from a deeper source, one that loves me exactly as I am. I've come to realize that my safest space---the hiding place mentioned in the psalm---lies with God. Snuggled up against the down feathers of the Creator, I bring all of me without pretense... and I am loved. It is this love that I yearn for in my life now as an artist, seminary student, and emerging theologian, because I am free when I turn toward God and allow myself to be fully embraced.
St. Augustine said, "Our hearts are restless until they rest in thee, oh God." In Al Anon I learned that "you're only as sick as your secrets." Leaving nothing hidden, nestled into the comfort of love itself, my soul releases perfectionism, and I simply ask God to show me the way.