Night
I wake up shivering. My body aches. It feels like the Flu. Is it? Probably not. I know better by now. How long have I been asleep? It’s still dark outside. I tightly wrap the covers around me and fall back asleep.
My alarm wakes me. This time it’s 4:30am, my normal wake-up time to read and pray before the daily circus begins. Nothing is quiet, no fragile item is safe unless our young boys are sleeping. But I silence my alarm and fall back asleep.
Morning
7:05am I’ve heard people describe deep full-body pain the day after a bad car wreck. Those descriptions immediately come to mind as I slowly get out of bed. Everything hurts. Everything. My fingernails and fingertips hurt. As I wrap my fingers around my toothbrush, my hands feel arthritic. Clothing irritates my skin as it gently moves against my body. But I force myself to keep moving. Ironically, laying in bed on a day like this can me feel worse. My bare feet feel bruised.
Looking Back
My feet. That’s where all my pain began many years ago. Severe feet pain and fatigue. Working on my feet as a barista during seminary didn’t help. I eventually spent 6 weeks on medical disability, finally returned to work, only to quit when I couldn’t finish one shift. For the next two years, I used public wheelchairs any place where long periods of standing might occur.
Creep
But the pain slowly started to creep – my legs to my thighs, my low back, my fingers. I became restless with pain when sitting still for too long. My muscles twitched in bed and often woke my wife. And with increased pain came increased fatigue. No amount of sleep could make me feel rested.
Then came the frequent illnesses, colds, viral sore throats, cold/flu symptoms but no fever [now I know these were Fibromyalgia flare-ups], asthma, severe stomach viruses that sent me to the ER, weight loss, and a gnawing mental fog that I couldn’t shake.
Eventually, doctors diagnosed me with three autoimmune disorders: Celiac’s disease, Immunoglobulin A Deficiency, and Fibromyalgia. Sometimes, I now see that one disorder can influence the other. For example, I think a very mild virus last week (with the midnight fever and multiple sores in my mouth) triggered a very intense Fibromyalgia flare-up.
My Celiac symptoms quickly disappeared after switching to a gluten-free diet. My other two disorders, however, continue to slowly deteriorate my health. I radically altered my diet this summer, which seems to have helped. But my energy is still on-par with someone 40 years my senior.
Outside of this blog, I rarely mention my symptoms, even with my family. In fact, I sometimes forget my ailments until someone asks about my health. The brain’s coping mechanisms for such chronic pain and fatigue are awe-inspiring; I learned to compartmentalize and suppress the milder symptoms. In other words, I’m good at faking it.
Interruptions
As you might imagine, it’s often difficult to maintain a normal work schedule or normal work pace. Interruptions are now a part of life. I have plenty of ‘not bad’ days, but I no longer have ‘good days.’ I now mentally plan ‘recovery time’ after simple tasks like mowing the lawn, or walking for long periods of time.
[Since typing the previous sentence last week, I confessed in a church leadership meeting that I could no longer complete several manual-labor tasks around our aging church facilities and faithfully pastor people; I simply don’t have the physical strength for both. I even asked help mowing the Parsonage (our house on church property) lawn. I’m a thin healthy-looking 33-year-old male, and I can’t mow my lawn. That’s embarrassing.]
I attended our first Cub Scouts meeting with our 5-year-old last week. The Scout leader mentioned camping and hiking. I immediately became a little nervous. One bad night’s sleep can put me into a Fibromyalgia flare-up. It’s not uncommon to wake up sick the day after I mow the lawn. How will I do after hiking and sleeping in a tent?
Lawn Work
My wife takes our son to school. I put on work clothes. It’s Lawn Day. Heavy rains earlier in the week and my procrastination mean I’ll now spend hours working outside before company arrives in the evening.
I enjoy lawn work. When in junior high, I planned to become a Landscape Architect. I read books on landscape design and, one year, requested a Better Homes & Gardens magazine subscription. Man, I was a weird kid.
God’s plan to keep me humble now includes a lawn I don’t have energy to maintain. And by, “maintain,” I mean “create an award-winning front yard that gives me citywide recognition, get’s featured in my favorite schoolboy magazine, and makes for great Instagram photos where I show my boys but really want you to notice my flowerbeds.” Don’t judge me.
Faith Comes By Hearing
Listening to something in my headphones helps distract from the overwhelming pain and exhaustion. I try to “redeem the time” (Ephesians 5:16) by listening to either an audio Bible or a Christian book while doing other work. God especially has grown my faith as I listen to the biographies of great Christian saints. For me, quite literally, “faith comes by hearing” (Romans 10:17).
Today, I’m listening (for the fifth or sixth time) to 101 Hymn Stories by Kenneth Osbeck. Each story includes a short audio portion of the hymn, then a biographical sketch about the author/composer.
I spend the day, and the next few days, hearing how long-dead saints praised their Heavenly Father. My flare-up doesn’t lessen until Saturday morning (I’m still dealing with it two weeks later).
But on this time through the book, one pattern emerges in technicolor… the number of hymn writers who struggled with debilitating illnesses and/or chronic physical disabilities: Isaac Watts, Fanny Crosby, Thomas Chisolm, Frances Havergal, George Matheson, Elizabeth Clephane, Charlotte Elliott.
Google them. You won’t regret it.
Night
The lawn work ends. My condition hasn’t improved by the evening. I grimace when picking up a dinner plate; it feels like a large dumbbell. All my muscles are tender. My forearm is too weak to open a small bottle I’ve grabbed from the fridge. If my wife wasn’t meeting with several other young moms in our front room, I would have asked her to open it for me. Pride prevents me.
Our boys are now asleep in bed. My bed calls out to me. But I leave home to see a couple who recently visited our church. The wife feels scared about upcoming medical tests and wants prayer. Ignoring my pain and exhaustion during my conversation is as easy as ignoring someone screaming in my ear.
I arrive back home around 9:15. I climb in bed, quickly fall asleep
Morning
I wake up Friday morning, but feel just as bad. This is my life. In spite of many faith-filled prayers, God has not yet chosen to heal me from these debilitating and incredibly inconvenient illnesses. Surprisingly, my faith to pray for healings has grown, not shrunk.
Charlotte Elliott
I spend the day working on tasks that won’t easily tire my body. Powerful words from one hymn writer sound through my headphones on Friday afternoon. Charlotte Elliott was a devout Christian woman who spent much of her life as an invalid. She even edited and compiled a hymnbook entitled The Invalid’s Hymn Book. Seriously.
I back up the audio and hear the quote again. I paused until I could find the words online view the text as the words again float into my ears. They deeply sink into my soul…
“He knows, and He alone, what it is, day after day, hour after hour, to fight against bodily feelings of almost overpowering weakness, languor and exhaustion, to resolve not to yield to slothfulness, depression and instability, such as the body causes me to long to indulge, but to rise every morning determined to take for my motto: ‘If a man will come after Me, let him deny himself, take up his cross daily, and follow Me.”
Black Velvet
The audio book continued.
My symptoms remained the same. My circumstances didn’t change. But I finally recognized my Great Inconvenience for what it truly is… an old friend.
19th Century British pastor Charles Spurgeon said:
“When pangs shoot through our body, and ghastly death appears in view, people see the patience of the dying Christian. Our infirmities become the black velvet on which the diamond of God’s love glitters all the more brightly.”
Yes. Weakness is my friend. Anyone who daily, for almost 15 years, causes God’s love to shine more brightly in my life is a great friend, indeed.
Ode to Weakness
Weakness, my old friend, you bring out the best.
In me? No. Of course not. You bring out the best in my Lord, making His love glitter all the more brightly against the black velvet you spread over my body.
When I need help to open a bottle… I see Jesus. He suffered for us to the point of total exhaustion and needed help to carry his cross.
When fatigue tempts me to act selfishly, thinking of relieving only my own body’s pain… I see the Messiah. He regularly sought retreat to rest his body and soul yet, when the masses found him, he did not turn them away and felt compassion for them.
When vanity consumes me, questioning how others interpret my frailty… I see my Savior, who thought only to please His Father.
When pain tempts me to sinful irritability… I see God’s Son on the cross. With the nails through his flesh, he prays for his murderers.
When I carry my pain with bent-body in the early mornings… I see the Lamb of God, who carries the pain with me – “Surely he has borne our infirmities and carried our diseases” (Isaiah 53:4).
When depression sets in, considering all the work I no longer have strength to complete… I see my Heavenly Father, whose strength “is made perfect in Weakness.”
When I read the Bible with heavy eyelids in the early mornings… I see the Light of the World, praying at night in the garden while his closest friends fell asleep.
When my hands ache and my tender fingertips type these keys… I see the Savior’s nail-pierced hands.
Weakness, my old friend, I commit to a new Attitude of Gratitude when you are near. I trust my Father will heal me one day, putting an end to your daily visits. Until then I will live with gratitude for your black velvet, against which “the diamond of God’s love glitters all the more brightly.”
Just As I Am
Just as I am, without one plea,
But that Thy blood was shed for me,
And that Thou bidst me come to Thee,
O Lamb of God, I come, I come.
Just as I am, and waiting not
To rid my soul of one dark blot,
To Thee whose blood can cleanse each spot,
O Lamb of God, I come, I come.
Just as I am, though tossed about
With many a conflict, many a doubt,
Fightings and fears within, without,
O Lamb of God, I come, I come.
Just as I am, poor, wretched, blind;
Sight, riches, healing of the mind,
Yea, all I need in Thee to find,
O Lamb of God, I come, I come.
Just as I am, Thou wilt receive,
Wilt welcome, pardon, cleanse, relieve;
Because Thy promise I believe,
O Lamb of God, I come, I come.
Just as I am, Thy love unknown
Hath broken every barrier down;
Now, to be Thine, yea, Thine alone,
O Lamb of God, I come, I come.
Charlotte Elliott, 1836