When Worlds Whirl

What a crazy summer. Twists and turns. Forward and backward.  Sense and  confusion. Well, that’s how my summer has gone.

I just re-read my last post which I wrote at the end of June in honor of our country’s 250th anniversary. I wrote of our young nation’s deep, historical roots (represented by four cities: Jerusalem, Athens, Greece, and London). I quoted founding fathers. I quoted from George Washington’s first inaugural address given on April 30, 1789:

“No people can be bound to acknowledge and adore the Invisible Hand which conducts the affairs of men more than those of the United States. Every step by which they have advanced to the character of an independent nation seems to have been distinguished by some token of providential agency.”

Does this collective view of “providential agency,” the hand of God in history, apply on an individual and personal level? Logically, it does. The individual is a part of the collective. Biblically it does. Proverbs 16:9 declares, “A man’s heart plans his ways, but the LORD determines his steps.”

It seems that the differences between our plans and the LORD’s paths compose a dance in which I wait or move and God affirms or redirects. The movement seldom is straight forward. I dance by faith not by sight, seeking to follow Jesus.

I recognize that God provides many good options; not all decisions are a matter of right or wrong. I also realize that some decisions are life-changing, and that I will not always know when a little choice will alter the river’s course. Such knowledge is not entrusted to me. My trust is owed to “the Invisible Hand,” who is trustworthy, adorably so according to George Washington.

Therefore, I recognize that my husband’s and my crazy mixed up summer is not an indication that the “Invisible Hand” was withdrawn from our experience, leaving us whirling and swirling dizzily with no hope of sense and meaningful progress. God has been involved, always present in the whirling swirls, directing our steps for purposes currently unnecessary for us to understand.

Do you identify with our experience?

We thought we were moving from Fort Wayne, Indiana to central Florida this year. We were. We weren’t. We were. We weren’t. Now, we’re not. Not this year. Next year? Maybe. Maybe not.

Your dancing walk with Christ may not involve such a move, but you are dancing daily too. I’m sitting down now. There is more here than the story of whether or not we relocate to Florida. Actually, health and relationship issues are highly interwoven into our decision-making.

I’m going to be more open and specific with you than I think I ever have been.

My health. I feel crappy all the time. Crappy (a crass word I was never allowed to say). The crassness of the word and its connotations perfectly fit how I feel day and night and have for years and decades. I work hard to live above the inner noise, to move through the invisible blizzard, to tolerate outer noise and sensations, to control my responses. And it drains and drains and drains me. I feel trapped. Imprisoned. I can’t escape myself, except when I’m truly sleeping. I want breaks from being so aware that I am alive. I’ve lived with chronic pain since I was twelve, but chronic sensitivities goes back to babyhood.

I am so tired of being alive in this decrepit body, but I am so loved by my dear Paul. I see the deep pain he senses at the thought of losing me. So I try. I hang on. I know God loves me, because He gave me Paul.

I do not understand God. I do not question Him much anymore. I’m too tired to question. I don’t worry about my pain. I endure it with some level of emotional paralysis. Emotional numbness. I don’t cry much anymore, but I do sometime.

I’ve been diagnosed at Cleveland Clinic twice (around 1985-86 and 2001-02) and treated there, but that was long ago, back when they truly did not know what they were dealing with.  I’ve tried various programs, protocols, and treatments. I’ve tried numerous diets and supplements. Paul has spent lots of money on me.

I explained some, but not much of my story in my book, A Traveler’s Guide through Suffering & Joy.  Maybe you’ve read my book. It’s not about me, although I share a little, but my book is as much for me as it is for you. I learn from my book, over and over. Good spiritual food needs to be eaten and digested regularly and repeatedly. I need my daily nutrition. So do you.

Paul wants to move me to Florida, because he has noted that I do better to some degree when we live in the south (Florida for last seven winters and Arizona for the previous eleven years). Paul sacrifices so much for me. I am helping him accumulate tons of eternal rewards, I believe.

My major diagnosis, at least for the chronic pain and fatigue, is called Fibromyalgia (FM). It is such an embarrassing diagnosis. Why? Because I grew up in such a lovely and godly home. No abuse or family trauma. (Trauma seems often to be the door into FM.) My father was a joyful lover of God and people. He was a hoot! I was close to both my parents until the day they died! I believe my health issues stem from genetics, a physical accident, and neurological disorders. FM is also embarrassing because as a diagnosis, it has such a confusing history, causing people to question its reality. Then people such as I feel more deeply stigmatized, sad, and isolated.

Looking back, I note a number of turning points in which my FM took on a new twist and moved me into another chapter of life. I was able to adjust and live what appeared a rather “normal” life through each of these stages until I turned 45, and then FM took me down for a number of years. With Paul’s help, I developed a “fight for my life plan” and have since re-written it a number of times.

I entered my most recent and current chapter in August 2023 when I had dental surgery, and I did not heal properly. I entered a new era of constant face pain combined with my headaches, migraines, and FM (body wide pain). This last year my body added another chronic pain cluster that I will not explain here.  My current chapter is overwhelming, relieved by the love I receive from Paul, my family, and some close friends.

I had to leave our local church here in Fort Wayne because of my hyper-sensitivities. As I realized that our local, evangelical church was committed to a kind of worship service that was becoming more and more intolerable (to me, loud noise and dark space), I saw that I was dreading entering the gathering hall. Often, I’d have to leave and go home. This was upsetting and grew to be rather traumatizing. I realized that God was not asking me to be in this setting in order to worship Him with other members of the Body of Christ.

We have a winter church home in Florida that does not exacerbate my hyper-sensitivities and pain levels (or seldom does). Of course, there are times when I know to just stay home and not risk being out somewhere. Since it did not work for us to sell our house this summer and move to Florida permanently, we have to navigate a way of maintaining connection to other believers without my attending corporate worship services.

We are seeking God’s direction on this, and I’ll describe this in my next post.

I am wondering how other people with special needs navigate being a part of a local church. Maybe you have some insight or scenario you’d like to share. I’d love to hear from you.

Fibromyalgia is hard to explain, and it expresses itself differently in each of its sufferers. After decades of dealing with it and learning about it, I avoid viewpoint and information overload. However, I want to share with you a video from Dr. Michael Lenz who specializes in FM. I appreciate (in small doses) much of his work . It may help you to understand better, and see the connection between FM and some other health issues.

How does God’s Word encourage us, in our frailties and in our care for one another? When my worlds whirl, Psalm 139 reminds me that no matter where I am, He is still with me. George Washington reminds me “to acknowledge and adore the Invisible Hand” providentially holding me close and giving me hope, even when I don’t understand.

Psalm 139: 1-18 (ESV)

O Lord, you have searched me and known me!
You know when I sit down and when I rise up;
you discern my thoughts from afar.
You search out my path and my lying down
and are acquainted with all my ways.
Even before a word is on my tongue,
behold, O Lord, you know it altogether.
You hem me in, behind and before,
and lay your hand upon me.
Such knowledge is too wonderful for me;
it is high; I cannot attain it.

Where shall I go from your Spirit?
Or where shall I flee from your presence?
f I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
If I take the wings of the morning
and dwell in the uttermost parts of the sea,
even there your hand shall lead me,
and your right hand shall hold me.
If I say, “Surely the darkness shall cover me,
and the light about me be night,”
even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.

For you formed my inward parts;
you knitted me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.

How precious to me are your thoughts, O God!
How vast is the sum of them!
If I would count them, they are more than the sand.
I awake, and I am still with you.

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If you have time and interest, check out the following. (You may want to divide this into a number of listening sessions, or you may not want to listen to all of it).