vestibular neuritis

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. 

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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