chronic illness

She Said the Thing

/ Lauri Ann Lumby / Leave a comment

The truth of chronic illness

This past week, I had what I thought was going to be a routine session with my acupuncturist and Traditional Chinese Medicine practitioner. It ended up everything but routine as that morning ended up being “one of my bad days” with unexpected and anxiety provoking symptoms. The acupuncture treatment helped ease the symptoms and Megan gave me instructions to follow up with my primary care doctor “just in case” there is more that needs to be explored. (My primary care and I are currently exploring a possible thyroid issue.)

It wasn’t this that made this week’s session remarkable, however, it was the thing Megan said. I’m not going to be able to repeat it verbatim but it was the exact acknowledgement that I needed to hear. In her compassionate seeing, Megan recognized the very real fact that most of the time, I feel like shit. Following that up with the masking that I do to make it through each day despite feeling like shit. I took Megan’s hand in mine and through tears, thanked her for SEEING ME.

Because this is the reality, I do feel like shit pretty much every day. Between Epstein-Barr, permanent vestibular neuritis, panic attack disorder, being a highly sensitive person, neurodivergent, and having polycystic kidney disease, my baseline is somewhere around 50-60%.  I’m tired and cold all the time. I’m always suffering some version of mild vertigo (giddiness). My chronic headaches have been better, but as I write I’m on day 6 of a constant dull ache. I’m on all the medications to manage my kidney disease, and every one comes with their own set of side effects. Ugh.

I don’t write this in search of pity. I share this to reveal the whole truth about chronic illness and to point out that we live in a world that has no real support for the chronically ill. Instead, we’re forced to put on a happy face, go out into the world, work to earn money to pay our bills, grocery shop, exercise, stay fit, eat right, and not complain about the fact that while we are doing all these things to make it in this world, we often feel like complete shit. Pushing through the pain, fatigue, etc. then just makes us feel worse.

The chronically ill are invisible in our world; and yet we make up 60-90% of the American population. This means that every day, 60-90% of the people we encounter are feeling like complete shit while trying to complete the tasks required of them in a capitalistic culture. Other than disability income (which very few qualify for), there are no safety nets. Zero. Zilch. Nadda.

I can’t speak for others who suffer with chronic illness, but for me, I’ve carved out a way to make a living that (somewhat) accommodates for my vulnerabilities. At the same time, it is a constant effort to show up for work. I’m fortunate to have clients who understand if I have to miss a day or reschedule.  Making this choice, however, costs me in real US dollars so I reserve that right only on my worst days. Often I show up even when feeling like I really just need to stay home and do nothing or sleep. I’m also grateful for the unexpected and often miraculous ways that financial support shows up, allowing me to be more gentle, compassionate, and caring toward my fragile body.

And today, I’m especially grateful to Megan Bartelt, L.Ac. Dipl. Ac. for through her words, I am finally feeling seen. 

The Effects of Trauma

/ Lauri Ann Lumby / Leave a comment

Trauma is weird. Trauma is weird because we don’t always know we’re experiencing trauma until its effects accumulate and begin to come out sideways. Trauma is also weird because every person experiences trauma differently.  Some traumas are obvious and expected, others are not. If you are in a war zone and having to deal with constant life-threatening situations, you would expect that you might experience some adverse effects from that trauma. Some people, however, seemingly don’t. If you are in a physically abusive marriage or suffered sexual assault, you would expect to suffer the effects of these traumas. One does not necessarily expect disappointment, heartbreak, loss, or betrayal to be experienced as trauma – but for some they are.

Trauma is weird. My trauma is not from war or physical abuse. What I can now identify as the traumas that eventually led to a diagnosis of CPTSD (Complex Post Traumatic Stress Disorder), I did not necessarily think of them as traumatic at the time. I’m a strong, independent woman and that’s how I got through those traumas – truly by sheer force of will and stubbornness – mixed in with a good dose of resentment. I made myself survive.  I forced myself to weather the storm. I pushed myself through it all – never attending to the deep heartbreak I was feeling because at the time I was just trying not to collapse under the weight of it all.

Well….eventually that all caught up to me. All that forcing did was push the trauma deeper and deeper into my psyche where it built up and accumulated until it started coming out in symptoms of depression, anxiety, hypervigilance, and eventually full-blown and traumatic panic attacks. I’m also convinced that all of this pent up trauma is what made me vulnerable to the bizarre ear infection that permanently damaged my vestibular nerve – causing my now ongoing issues with vertigo, etc. which now prevents me from driving any distance without great effort and no longer allows me to drive on the freeway – dramatically hindering my previously taken for granted freedom of mobility.

Trauma is weird. I have tried to explain my trauma in the past and to those listening, it just doesn’t make sense. It doesn’t really make sense to me either. I can point to the situations, experiences, individuals and say – “it’s their fault.” But really, my trauma is less about fault and more about cause. The cause, if I’m truly honest with myself, was LOVE, and the trauma that one experiences when that love is betrayed.

That’s it in a nutshell. Every trauma I’ve experienced has ultimately been about the betrayal of love.

The easiest for me to speak about is my ecclesial trauma because in this case, there are no innocent bystanders who might be hurt by my words. I feel perhaps I’ve written of this ad nauseum, but in a nutshell – I once passionately and deeply loved the Church and the mission of Love I embraced on their behalf. I found my calling in the Church. I was enthusiastically supported in that calling, both financially and otherwise by the Church. I had planned to continue my formation and advancement in Church ministry as far as would be allowed for a woman. Then I wasn’t. All because I took Jesus’ call to Love seriously and accepted that call to heal and teach. It’s a long stupid story and on the outside to call this trauma might seem trite, but I can honestly attest that leaving the Church was harder for me than divorce and the trauma I suffered that ultimately led to my leaving is the greatest heartbreak I have ever experienced. My Church turned its back on me. If you understand the nature of spiritual abuse, you get it.

The other traumas I will continue to hold close to my heart. Suffice it to say, all were deep and indelible betrayals of love. When trauma is a result of betrayal, it becomes personal – and that’s a whole different kind of trauma – which is why it’s so difficult to describe and even more challenging to explain. It’s not as a result of a hit, a punch, or war, it because of a broken heart.  

No matter the cause of the trauma, the effects are mostly the same: anxiety, depression, panic attacks, chronic illness, hypervigilance, memory issues, situational avoidance, disassociation, feelings of overwhelm and cognitive impairment, auditory and visual processing disorders, chronic pain, and so much more. There are medications and therapies that help mitigate the effects of trauma, but in my experience, the effects never fully go away and are always lying in wait to rear their ugly head again – like recently. For whatever reason, my trauma decided to rear its ugly head causing ongoing increased anxiety and breakthrough panic. Whatever I had been doing proved to be no longer enough so now I’m (by doctor’s orders) taking a break from external stimuli, adjusting to an increase in medication, and looking at what other lifestyle changes or adaptations I need to take to continue to care for my trauma-affected mind, spirit, and body.

As an aside, I’m profoundly grateful to my employer who allows for accommodations so that I can continue to work and make a living. AND there are not enough supports in our system for people who have suffered the effects of trauma. For many, work is literally impossible and for the majority, there are not enough accommodations available to help them be part of providing for their basic needs without doing further damage to themselves. If my nervous system had its way, I’d be living in a cabin deep in the woods and all my needs would be provided for so I could just take care of myself, living as gently and quietly and softly as I need. Just sayin!

Illness and the Monastic Call

/ Lauri Ann Lumby / 2 Comments

In Shamanic traditions, a sudden, dramatic, or enduring illness is often recognized as a sign of an individual having a shamanic calling.

“In indigenous cultures a shaman was a person who had some kind of deep initiation experience, whether it was a life-threatening illness, a near-death experience, a psychotic break . . . (R. Inge-Heinze)”

The same seems to be true of those in our modern world called to monastic living. This, at least, has been true for me and for many of those I know who find themselves living a monastic kind of life.

Notice I didn’t say we chose a monastic life. Instead, it seems to be forced upon us – often kicking and screaming. Upon reflection, this isn’t surprising considering that our culture wants and expects us to be anything BUT monastic.

Western culture is completely lacking in examples, models, or paradigms of non-vowed individuals living monasticism as a lifestyle. There are no educational or formative paths for individuals choosing monastic living except for those entering into religious life. Instead, our culture presents us only with examples of how to be a productive, contributing member of society – typically “work” that makes other people money. Nowhere does our culture invite us to explore the possibility of an inward, solitary, meditative life defined by being. Instead, our life choices are all directed outwardly, defined by what we do, how much and how hard we do it, our value defined by this doing.

In a world where we are valued and defined by our doing, and our personal goals are built around this doing, it is no surprise that a true monastic calling has to force its way past all of this in order to get our attention. We have to be awakened out of the fog of everything we’ve been told and all the expectations we have set for ourselves in order to hear this calling. Most often, it seems, we have to be brought to our knees or to the very edge of death before we hear the true calling of our soul – one that has absolutely nothing to do with doing, and everything to do with being.

As it relates to illness specifically, my calling to monastic living began in my childhood where I was plagued by illness, but no one would have recognized it as such. It wasn’t until midlife when this calling caught up with me, specifically through first an anxiety disorder, and then through a debilitating virus that caused permanent damage to my vestibular (inner ear) nerve leaving me with intermittent symptoms that impede my mobility – especially as it relates to driving, and that makes me sensitive to crowds, noise, and movement, and which on some days can cause me acute physical pain. In close proximity to this virus, I also became acutely aware of my empathic abilities (I’d always had them, I just now became aware of them). These abilities make it difficult, if not painful, for me to be “out in the world.” With all of this, I’ve been forced out of the constant activity that was familiar to me. Instead, I have turned inward and been made to embrace a quieter, more gentle, reflective existence.

My experience with illness related to making a choice for monastic living is not unique to me. Every single person I know who has found their way into this kind of existence has suffered a similar kind of fate. Whether it be a debilitating accident, a physical medical condition, chronic illness or what might be diagnosed as a mental health issue, there always seems to be something that forces us out of the “regular” world and into a world of our own.

Arriving at this new way of being is one thing – accepting it as a new way of life is something else entirely. In order to do so, we have to 1) decide we’re not crazy or that there’s something wrong with us. 2) grieve the loss of the former life with which we had become familiar. 3) detach from other people’s judgement of us and our new life. 4) unravel from all the conditioning that tells us we can’t spend our lives just being. 5) let go of our own compulsive need to be filling up all our time with doing when all we really need to do is be. And 6) find pleasure and grace with simplicity and peace.

When the Rejected Becomes the Cornerstone

/ Lauri Ann Lumby / 3 Comments

This week I was given a lived experience of a lesson I had planned for my online community. Instead, of being able to present the lesson, however, I was writhing on my couch in the lived experience of it. Interestingly, it is not unusual that I am required to live out a lesson before I’m able to share it.

The lesson I had planned was based on the following psalm:

The stone which the builders rejected has become the cornerstone.

Psalm 118

The Stone

This is how I came to live out the planned lesson:

I have a medical condition called chronic vestibular neuritis. What this means is layperson’s terms is that a virus caused permanent damage to my vestibular nerve.

From Wikipedia: The vestibular nerve plays an implicit role in maintaining blood pressure, maintaining balance control, spatial memory and spatial navigation during movement. 

Damage to the vestibular nerve can lead to intermittent and ongoing issues of vertigo, giddiness, sensitivity to light and sound, and migraines. This is exactly how I have experienced this disorder. I’ve exhausted all efforts in seeking a cure or effective treatment and have found neither. Instead, I’m stuck with the reality of this disorder:

  1. Due to this disorder, I can no longer drive on highways or long distances.
  2. Due to this disorder, I am often stricken with giddiness (feeling unbalanced, dizzy, or light headed).
  3. Due to this disorder, I am sometimes stricken with an excruciatingly painful migraine that might be limited to my head and neck, or sometimes encompasses my whole body.

Changes in barometric pressure or dramatic weather changes can trigger my symptoms. Wine is sometimes a trigger. Poor seating ergonomics and too much time on my computer are also triggers. Sometimes I can’t point my finger at what the cause might be. The position of the stars? A comet flying past? Solar flares?  Who knows!?

The Rejection

This week I was struck by the symptoms of this disorder and was forced to spend two days on the couch.

To say I hate that I have this condition would be an understatement.  Since 2016, when I was first stricken with the virus that caused vestibular nerve damage, I have struggled with the ongoing and intermittent symptoms. Mostly I have struggled with the limitations caused by this disorder.  I hate that I am no longer free to just get in my car and drive where I want.  I hate that I have to ask my friends or my children to drive me. I hate that there are some days when even local driving is excruciating – like on those bad weather days where the wind is blowing, snow is pouring down, and my windshield wipers are going. Between the pressure and the movement, I feel like I’m going to die.

My overachieving workaholic “needs to be productive to feel valued” self, hates that there are many days where I am completely unable to work because the pain, the light, the sounds, the smells, and any kind of movement forces me to retreat into darkness.  I writhe in pain while wallowing in the inner voices of chastisement telling me I’m being weak and lazy for not pushing through the pain to get things done. UGH!  (Who said the “protestant work ethic” was a good thing?  I’m not even Protestant!)

In short, chronic vestibular neuritis and all its accompanying symptoms has been a stone that I have rejected. I have hated this about myself. I have been frustrated at the medical professional’s inability to offer me an effective treatment or cure. Even the diagnosis took years to confirm (I knew what it was through my own research YEARS before my doctor could tell me what it was!). I have grown tired of all those well-meaning folks who try to offer up their own cures and treatments for something about which they do not know.

The Cornerstone

During all these many years of rejecting the stone of vestibular neuritis, has also been the whispering invitation of surrender and acceptance. After exhausting all other efforts, what choice does one really have?  I can continue to be angry, frustrated, resentful, impatient, and condemning of my symptoms, but what good does that do me?  Instead, (along with the accompanying symptoms of grief) I have tried to look at what this disorder might be inviting me into.  The invitation is really quite obvious and is known in what the disorder has forced me to do:

  1. Be vulnerable and humble enough to ask for and accept help with those things I can no longer do for myself (like drive).
  2. Take advantage of my good days. Do what I can do, without pushing myself and let go of the rest.
  3. Surrender to the bad days. It’s ok to do nothing. It’s ok to cancel plans. It’s ok to forego commitments.

The more subtle invitation has been to reorder and restructure my life away from my workaholic tendencies, and toward a gentler, more ease-full flow. No longer do I feel the need to fit into the standard American model of work. I have more and more fully embraced the fact that I couldn’t work a “regular job” if I tried. Only in running my own business do I have the freedom to work in a way that is necessary to maintain my health (oh yeah…..there’s that degenerative kidney disease I have too) and respond to my unpredictably changing symptoms.

In doing this, the rejected stone of chronic illness has become the cornerstone upon which the current foundation of my life is established.

What have you rejected about your own life experience that might be seeking to become a cornerstone?

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Chronic Illness and Modern Monasticism

/ Lauri Ann Lumby / 1 Comment

There is an interesting correlation between the modern monastic calling and chronic illness.  When I look at the community of women (and a few men) who have found their way to my offerings, it is uncanny how many of them are struggling with some sort of chronic, often debilitating, condition. It is also curious how many of these chronic conditions defy modern medicine – either eluding diagnosis or resisting treatment.  

Case in point. I have a long list of chronic conditions:  polycystic kidney disease, Epstein Barr, a form of PTSD, chronic vestibular neuritis, migraines, anxiety, depression, and panic disorder. This smorgasbord of intermittent symptoms has forced me to prioritize self-care and has removed me from “regular” employment. The capitalistic model of drive, strive, and achieve are no longer options for me. Neither is the 80 (or even 40) hour work week.

Privileging self-care confronts the western cultural paradigm, especially when the reason for self-care falls into the stigmatized category of chronic illness.

Our conditioned way of being (work hard and make money) no longer works for many who struggle with chronic illness (if it ever really did) and forces us to explore other ways of being..

The capitalistic model of drive, strive, achieve, and cajole, where success is measured by money, status, and power, simply does not work for those called to the contemplative life.  Furthermore, our world has become too loud, too bright, too violent, too divisive, too……everything…..for the sensitive, empathetic, and compassionate nature for those called to modern monastic living.

In this age, the monastic calling doesn’t present itself directly. Instead, it becomes apparent because all other options have failed.

There is nothing in our upbringing that prepares us for the possibility of a contemplative calling. Instead, we are forced to flail about in the darkness until we find what our souls have been seeking all along. Chronic illness is one of those conditions that helps us find our way. I have often wondered if the chronic conditions that many of us face are simply for the purpose of leading and supporting us in choosing the contemplative life and that this calling has become necessary in a world that has simply become too violent. It cannot be an accident that many of us who are called to a more monastic way of being are empaths, highly sensitive people, intuitives, and introverts. Perhaps we are here to show the world another way.

When the world has become out of harmony with itself, Love sends gentle and contemplative souls to bring the world back into alignment.

Perhaps we are those souls – sent to find a way to live in greater alignment with the truth of our Souls, while showing the world there is another way.

Excerpt from the Whispers from the Cave interactive web series. Learn more HERE.

Questions for Reflection:

  • How has the “modern” world contributed to or caused your chronic illness?
  • How has self-care become more of a priority in your life?
  • How has chronic illness supported you in finding a gentler, more easeful way of living in the world?
  • What inner resources have awakened in you through your experience with chronic illness?

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Illness Designating Power

/ Lauri Ann Lumby / Leave a comment

Our whole lives we’ve been told that illness means there’s something wrong with us.  What if the reverse, in fact, is true?  What if illness is a gift that designates our power? Can we take what we’ve been told and have chosen to believe and turn it on its head? What if what we’ve been calling illness (chronic illness especially) is really the body’s only way, in an upside-down world, to create the environment the Soul needs to thrive?  What if chronic illness is the body responding to abuse of the Soul?  What if when suffering chronic illness (ie: fibromyalgia, chronic fatigue, Epstein-Barr, migraine, vestibular disorders, anxiety, depression, panic attacks) there’s nothing wrong with us but is our body pointing out everything that is wrong with our world? What can we learn about our Soul and our body’s true needs through the symptoms our chronic illness throws at us? What happens if instead of fighting against illness we give our bodies what they need to feel safe in an unsafe world? How might our world begin to change when we start tending to the deeper needs of our Souls? How might our super-powers begin to emerge when we start tending to the needs of our Soul as dictated by our body?

Waking the Dead

I sang skin back onto my bones like a blanket’s warm embrace.

Enfolding in acceptance all that I am.

A dream within a dream of much more than simple acceptance.

A celebration really,

where a blanket becomes a robe of the deepest blood red.

Sovereign-earned.

Invoking a blessing of holiness

where that which I formerly condemned is honored as gift.

Where pathology is given a new name signifying magic.

And where illness designates power.

Then I sang a song of amens and hallelujahs!

Copyright Lauri Ann Lumby

Grief

When we are struggling with chronic illness or other debilitating and troublesome symptoms, we are cast into a grieving process. We experience all faces of grief – denial, bargaining, anger, depression, and sorrow as we move in the direction of coming to terms with our symptoms.

For twenty-five years, Lauri Ann Lumby has supported people in all forms of grieving. If you are in need of support in grieving your diagnosis (of often lack thereof), please reach out for an appointment.

Learn more HERE