Changes Later in the Year

When I started writing my blog Treasures in Plain Sight I thought I would need another one for poetry, etc. so I began Stand and Tip. Now that I am more experienced in the practice of posting I think I will take my husband’s advice and consolidate the two blogs into one. When it is time to pay Word Press again I will let you know a few days in advance to expect only one blog from me with both kinds of writing.

So when I wrote “Tiny Baby in the Background” in 2014 I never thought it would be posted for the whosoever to read. But I am so glad you care enough to read my things and hopefully take some comfort with you.

Tiny baby in the background
crying, crying
and I am drawn to her
as the tiny baby inside me
cries write it, write it

Struggling under the fog of constant pain
drugs, drugs,
distraction to nth degree
rock that baby and hold her
comfort her, rock her

Unconditional love and kindness
will prove again the victor
as, given time,
the words will come
Be at peace

I See You

The human soul anguishes over being invisible.

Gratefulness.org recently sent out this quote.

“The only choice we have as we mature is how we inhabit our vulnerability, how we become larger and more courageous and more compassionate through our intimacy with disappearance. ”   David Whyte

There are photos of my ninety-four year old mother-in-law as a child. In one she is one her father’s lap. In another holding a dog. Was it a pug? I do not remember the dog or its name but it makes me wonder what was important to her as a child?

I remember being amazed when I learned after many years of my marriage to her oldest son that her adult children were afraid of her. Most of these folks were married and had children of their own by then. She had a temper and ruled her family with the anger of a true matriarch.

Now at 94 she is just a shell of herself. Literally. She is skin and bones, under 90 pounds. At a recent oncology appointment she told her adult children, “I have no idea what he just said. Do what is best for me. I just want to go home.” Now she is in hospice care. She has to be willing to accept the help of others to get her meals, take her medications, have clean clothes and also to her horror to be bathed and get clean. She is quickly becoming intimate with disappearance. All that control and matriarchal power has been removed.

How will we inhabit our vulnerability? Will we be large, compassionate and courageous through our intimacy with disappearance?

As the adult child of an alcoholic I often felt invisible. It seemed I was often not heard, understood or accepted. That left lifetime scars of feeling invisible. I have to check myself, even now in my late 60’s, to be certain I am not transferring those feelings from childhood into my adult relationships, even my marriage. Inching towards death, as this quote reminds me, I will become intimate with true disappearance. No longer a being in the room with an opinion or issue to be dealt with, but gone, a memory to some, long forgotten by most.

God is called El Roi in the Old Testament, meaning the God Who Sees.[Genesis 16:13]  I was thrilled to learn that name, realizing God has seen me each and every stage of my life and continues to hold me close. He sees each of us and He cares. Will we trust Him as we continue to age and grow closer to the only exit plan guaranteed to each each of us? Death.

What are your plans for inhabiting your vulnerability and becoming intimate with disappearance? For one,  I need to print that quote and keep it before my eyes!

#6 Fibro Mudpot

Though the Lord may give you the bread of adversity and the water of affliction, yet your Teacher will not hide himself any more, but your eyes shall see your Teacher. And when you turn to the right or when you turn to the left, your ears shall hear a word behind you, saying, “This is the way; walk in it.”

ISA 30:20-21

There is phenomena in Yellowstone called a mudpot. Wikipedia says: ” A mudpot, or mud pool, is a sort of acidic hot spring with limited water. It usually takes the form of a pool of bubbling mud. Mudpots form in high-temperature geothermal areas where water is in short supply. The little water that is available rises to the surface at a spot where the soil is rich in volcanic ash, clay, and other fine particulates. The thickness of the mud usually changes along with seasonal changes in the water table.

Well, having a recent diagnosis of a chronic illness is sort of like becoming a living mudpot in human form. Imagine having an acidic hot springs with limited water in your body. The high temperature of intense life changes was nothing short of boiling my brain. The fatigue from fibromyalgia can be stunning. I often awake feeling as if I was hit by a Mack truck. It is always a loaded question to ask me how I feel. Especially in the morning, because more often than not I wake up and I am NOT refreshed.

Photo I took of boiling mudpot in Yellowstone National Park

I had the boiling pot of chronic pain, fatigue, confusion about what was happening to me, frustration trying to explain it to others … yeah my life had become an entire field of boiling mud pots. How would the Lord my Teacher reach me in the midst of all this? He was not hiding Himself capriciously, just using every available resource to encourage and instruct me.

One resource was Macrina’s book a pictured here. It has a new cover now. She wrote, “There is nothing so healing in all the world as real presence. This can happen only if you are willing to unwrap the ordinary by staying with it long enough to harvest its treasure.” I had to ask myself if I would be there with my eyes wide open or would I remain blind to the holy because I’m too busy to see? I do not remember before this book that anyone gave me permission to trust my own experience as prayerful and holy.

I read the quote below just the other day on Gratefulness.org.

The big question is whether you are going to be able to say a hearty yes to your adventure.


Joseph Campbell

Being slowed down to the new tempo of chronic illness, moving more slowly than ever before in my memory, I began to look about me, especially for my Teacher, the Lord, in my everyday ordinary life. I started to learn to trust my own experience as prayerful and holy even though I did not have a huge supporting cast of church members or even a large group of family.

Years later I would get to hear Macrina speak in person at the Sisters of Charity convent in Cincinnati. It was a joy to see her in person!

#5 Fibro and Finding my Way

As I mentioned earlier, when first diagnosed I lost many of my friends who thought I should be able to pray for healing and get it. The Lord on the other hand kept telling me, “I will be with you in this.” So I chose to follow Him. They say the best way out of something is through. This hymn often comforted me. They skip verse 2 , and that is fine.

The lyrics are below:


Written by George Matheson and Albert Peace

1. O Love that will not let me go,
I rest my weary soul in thee;
I give thee back the life I owe,
that in thine ocean depths
its flow may richer, fuller be.
 
2. O Light that followest all my way,
I yield my flickering torch to thee;
my heart restores its borrowed ray,
that in thy sunshine’s blaze
its day may brighter, fairer be.
 
3. O Joy that seekest me through pain,
I cannot close my heart to thee;
I trace the rainbow thru the rain,
and feel the promise is not vain,
that morn shall tearless be.
 
4. O Cross that liftest up my head,
I dare not ask to fly from thee;
I lay in dust life’s glory dead,
and from the ground there blossoms red
Life that shall endless be.

Years later a heard a similar melody at a conference. I called my husband to try to find it. I had to get home and find out what that original one was! And I eventually did. There are times when the Holy Spirit “haunts” me with music. He comforts me in ways no one else can by dropping the line or melody of a hymn into my soul. Then I seek until I find and there is God ready to hold me close again!

I wish someone would update the language on this hymn, set it to guitar music, and bring it back again. Would love to sing it in church!!

In terms of fibromyalgia, verse 1, O Love that will not let me go. Ever. I rest in You and give You back the life I owe. In Your ocean depths the flow of my life will richer, purer be. Verse 3, O Joy that seeks me through pain, I cannot close my heart to You. Ever.

Where has your comfort been in times of deep distress? Can you lean upon that source eternally?


			

#4 Fibro Pinball

Journal entry, April 1990: “Joint pain traveled 5-6 different places in 20 minutes. It is like having your body turned into a pinball machine.” My uncle had one of those at his bowling alley where my family often hung out. I can still hear the sound of those bells and paddles and points ringing up. If you do not have experience with pinball machines, watch a bit of the video to get the full lights and sounds experience. No need to watch entire video. As lights and bells occur just think shoulder, knee, elbow, shoulder, shoulder, shoulder, neck, back, knee. You get the idea.

Pinball pain – moves from point to point but there is a method to relax into it and not be so reactive to the pain.

When I was first diagnosed someone gave me a small book entitled “Celebrate the Temporary” by Clyde Reid. [ISBN 0-06-066816-4}

One chapter is called Lean Into Your Pain. The concept he puts forth is to move behind the pain. Most of us have a natural resistance to pain. So pain comes, you tense up against it and actually make it worse with that response. His idea was to find the center of the pain and slip behind it, so to speak. He says that ‘leaning into life’s pain requires small doses of plain courage.’ So I tried looking my pain in the eye. When the pinball paddles started slapping and the bells and lights began ringing and flashing I made it a practice to try to sit, breath, look for the source and learn to breathe into the identified point. He points out that when you concentrate on the pain it can actually diminish or even disappear.

I was receiving physical therapy at that time. The therapist was so amazed that someone could have ‘so many painful trigger points and still be walking around.’ She called other therapists over to examine my trigger points as a learning experience. I was amazed. You see, as a child I was told that I was a “ninny” and could not take pain. The therapists say I have a very high pain threshold. Now I must learn to listen to my body and take care of it better. The challenge with fibro pain is one is not always able to trace the pain back to HOW it occured! With acute pain you know you sprained your ankle. With fibro chronic pain you can lose your mind trying to figure out where it came from or what caused it.

So if you have a “pain flare” (an honest term) that turns your body into a pinball machine, stop, breath, look into the pain and try to see it diminish, even as you watch. If nothing else you might relax and stop tensing against the pain thereby making it worse!

#3 Fibro Journal Entry

Journal Entry 90-5-19 © Molly Lin Dutina

Notes from a talk: “Just as the women at the well in John 4:5-24, we must confess our helplessness, confess our own need. This leads to fulfillment, self examination, repentance, receiving forgiveness. We can be fulfilled as we find living water.”

I heard, “Molly, you must be willing to walk blindly. Do not look to tomorrow. Live in the NOW in My Presence. Trust Me. I love you. This will be a severe discipline. This will be for your strengthening. You will have more faith and be stronger for having gone through it. STAY VERY CLOSE TO ME. Be enfolded in a cloak of love by the Holy Spirit.”

(This occurred before the diagnosis was actually made.)

My friend, Kathleen, told me to document this illness. It is all happening so fast and I get so very weak. This could be extra hard. HELP, Lord!

Tasting Misery and Joy #2

In 1990 I began a medical journey that continues to this day. After the diagnosis of Fibromyalgia came the challenge of learning about it and learning to live with it. I also dug around in my history. Interesting! Grandma Snapp had something they called rheumatism. She often applied vaseline with camphor and menthol to her aches and pains.

Something similar to this lovely can. And guess what!? They evidently still sell it at WalMart and other locations.

My mother called hers arthritis and used a combination of BenGay and alcohol to treat the symptoms.

I tried the BenGay, too. Alcohol does not heal anything.

I am most likely to use China Gel which my good friend Betty made me aware of. China Gel is a mixture of: Menthol, Camphor, Ginseng Extract, Angelica Extract, Lavender Oil, Aloe Vera, and Witch Hazel. Betty’s massage therapist uses it.

I teased Betty once when I found it at Amazon writing , “Look! We can order it in the handy gallon size!”

So this condition seems to be moving through the generations. Most likely to be in women, though men are known to suffer from it. The chronic pain brings the bread of adversity and water of affliction. The Lord has kept His promise though and never left me!

Though the Lord may give you the bread of adversity and the water of affliction, yet your Teacher will not hide himself any more, but your eyes shall see your Teacher. And when you turn to the right or when you turn to the left, your ears shall hear a word behind you, saying, “This is the way; walk in it.” Isaiah 30:20-21 (NRSV)

He led me to a group that informed me about the condition. I read up on as many medical journal articles and new publications as I could. The #1 treatment is exercise, and sadly, the hardest people to motivate to exercise are people with Fibro. Exercise does NOT make us feel better. It does help us cope in the long run.

For example, in 1991 I went to an aerobics class with my sister and could keep up with most of what they were doing. I did not feel bad at the time. The next day I could hardly get out of bed, walk or function. Such unrelenting pain and stiffness.

Do not tell a Fibro person “You are only as old as you feel.” Oh goodness, then I must be pushing 90!

Tasting Misery and Joy Fibro #1

How can it be that we can taste these things simultaneously? Don’t they seem mutually exclusive?

Yet in Isaiah 30:18-21 (NRSV) we read,  Therefore the LORD waits to be gracious to you; therefore he will rise up to show mercy to you. For the LORD is a God of justice; blessed are all those who wait for him.  Truly, O people in Zion, inhabitants of Jerusalem, you shall weep no more. He will surely be gracious to you at the sound of your cry; when he hears it, he will answer you.  Though the Lord may give you the bread of adversity and the water of affliction, yet your Teacher will not hide himself any more, but your eyes shall see your Teacher.  And when you turn to the right or when you turn to the left, your ears shall hear a word behind you, saying, “This is the way; walk in it.”

The bread of adversity, water of affliction accompanied by clear direction, instruction from the Lord Almighty. When I was diagnosed with Fibromyalgia in 1990 I experienced this misery and joy in combination. It was a weird time to say the least!

The doctors had difficulty diagnosing me and finally admitted me to a hospital for tests to rule out the other “big nasties.” For example, it was strange to have results come back from a brain scan that showed there was no brain tumor, and instead of being relieved my husband and I were frustrated and angry. After each test, with no definitive results, we kept thinking if this illness is not that, then what is it?

Fibro is a strange disorder. The diagnosis is basically process of elimination and a few factors that should be present for 3 months prior to diagnosis. I have now lived with Fibro for 29 years. At the time I had never heard of it. Today the Arthritis Foundation says:

“To diagnose fibromyalgia, your doctor will ask you about your health history and give you a physical examination. A physical exam can rule out other conditions that may cause chronic pain and fatigue.

A diagnosis is largely based on your input on the following criteria:

  • Widespread pain index (WPI) score: The WPI lists 19 areas of the body where it’s common for people with fibromyalgia to have pain. You get a point for each area selected.
  • Symptom Severity (SS) score, in which you rank the following symptoms on a scale of 0-3:
    • Fatigue
    • Waking unrefreshed
    • Cognitive symptoms
    • Physical symptoms such as headache, weakness, bowel problems, dizziness, numbness/tingling, hair loss
  • Symptoms present for at least three months
  • No other health problems that would explain the pain and other symptoms.” https://www.arthritis.org/about-arthritis/types/fibromyalgia/diagnosing.php

So while my charismatic friends were telling me if I only prayed hard enough, or had enough faith I would be healed, the Lord was saying “I will be with you in this.” Should I try to pray this away when the Lord is speaking otherwise? Yikes. This is a long story and I hope to tell it well. Probably in several sections. Hope it brings enlightenment and encouragement to many. Not every person gets every symptom. Not all symptoms stay permanently. Sort of like living on a nightmare-go-round with symptoms instead of horses and carnival music.

There are a lot of artwork, posters and diagrams about Fibro online. Many of them sound sarcastic. That is likely caused by the fact that people with fibro do not LOOK ill and are often not believed when they talk about their symptoms. Below is one that is not too offensive, but descriptive.

They spelled stiffness wrong! Must be due to Fibro Fog.