Sunday, June 30, 2019

Total Surrender

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

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

Conscious Love by Richard Rohr

"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 [2]; 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

Supporting Single Parents

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

Am I Worthy?

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 (

Sunday, June 2, 2019

"My grace is sufficient for you."

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. "