migraine

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:

Due to this disorder, I can no longer drive on highways or long distances.
Due to this disorder, I am often stricken with giddiness (feeling unbalanced, dizzy, or light headed).
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:

Be vulnerable and humble enough to ask for and accept help with those things I can no longer do for myself (like drive).
Take advantage of my good days. Do what I can do, without pushing myself and let go of the rest.
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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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