Through It All
(written by Andraé Crouch)
I’ve had many tears and sorrows
Through it all
I’ve been to lots of places
Through it all
So I thank God for the mountains
Through it all
HE GIVETH MORE GRACE
by Annie Johnson Flint
1) He giveth more grace when the burdens grow greater,
He sendeth more strength when the labors increase;
To added afflictions He addeth His mercy,
To multiplied trials, His multiplied peace.
His love has no limits, His grace has no measure,
His power no boundary known unto men;
For out of His infinite riches in Jesus
He giveth, and giveth, and giveth again.
2) When we have exhausted our store of endurance,
When our strength has failed ere the day is half done,
When we reach the end of our hoarded resources
Our Father’s full giving is only begun.
3) Fear not that thy need shall exceed His provision,
Our God ever yearns His resources to share;
Lean hard on the arm everlasting, availing;
The Father both thee and thy load will up bear.
Annie Johnson Flint
Born ~ December 24, 1866 – Vineland, New Jersey
Died ~ September 8, 1932 – Clifton Springs, New York
My favorite instructor during paralegal studies was and still is a brilliant, witty civil defense attorney. Always dressed to a T in his smart suit, tie, and polished shoes, he excelled in making Introduction to Civil Procedure a captivating course. Each week, after assuming his place in the front of the room, he emphatically declared—followed by a long-drawn-out pause:
“Class . . . PEOPLE LIE”
Why did he repetitiously accentuate something so obvious? Because he wanted his students to keep at the very forefront of their minds and never forget:
People will look you directly in the eye and
without so much as a flinch . . .
LIE TO YOUR FACE!
For the past 16 months, I have become accustomed to meeting and communicating with—
medical professionals in my ALS Team at UCSF
people involved with the ALS Association, and
individuals at the Martha Olson Fernandez Foundation (MOFF).
All of these people model patience, understanding, and a keen awareness of ALS traits.
Last week during an appointment unrelated to my diagnosis, a medical professional who has not followed my disease and may lack a clear understanding of ALS, caught me off guard. Whether the individual realized it or not, once they heard my muddled voice, they downshifted their speech speed and began enunciating more emphatically.
American Heritage Dictionary – to form (an opinion, for example) before possessing full or adequate knowledge or experience
Macmillan Dictionary – a preconceived idea or opinion is formed before you have a lot of information, experience, or evidence and is therefore probably wrong
Merriam-Webster – to form (an opinion) prior to actual knowledge or experience
As a person diagnosed with ALS, my verbal communication skills are progressively worsening. My speech is markedly garbled. The sheer mental and physical effort it takes to try to formulate words and make myself understood leaves me utterly wiped out. But please don’t fall into the trap of assuming my messed up speech is an indication that my cognitive skills and/or my hearing are also jeopardized. My mind still thinks, reasons, and processes just as well as it ever has; however, my tongue and lips no longer clearly articulate. My hearing hasn’t diminished. Good news! You don’t need to speak louder, slower, nor enunciate more dynamically when you speak with me. I can understand you just fine.
The above holds true for most people who have been diagnosed with ALS. While there are some people with ALS who exhibit symptoms associated with dementia, by and large, most retain full mental capacity up until their passing. If you are interested, WebMD has an article delving into cognitive changes in some ALS patients.
Researchers have increasingly begun to recognize that in some cases, people with ALS can experience cognitive changes that are severe enough to be called dementias. Dementias are a type of severe brain disorder that interferes with a person’s ability to carry out everyday activities that involve attention, memory, planning, and organized thinking. Research on the relationship between ALS and dementias is ongoing.
The year must have been 1958. It was Christmas. My parents (probably my dad’s idea) gave my brother a luge on wheels. They looked so cool and promised to be loads of fun . . . for boys! In reviewing internet remarks, some people refer to this as a Flexi-Flyer while others call it the Flexy Racer. Doesn’t really matter to me. I’m calling it . . . Lawsuit on Wheels.
Here’s a 1996 online comment from a fellow named Jim Kershner (emphasis mine):
Not only did I have a beloved Flexible Flyer sled, but I was the proud owner of a Flexy Racer, a Flexible Flyer product that was simultaneously the most fun toy on my block and the most dangerous toy on earth.
A Flexy Racer was essentially a Flexible Flyer with rubber wheels. No need for snow; all you needed was a nice steep street and a high tolerance for friction burns. You could steer it like a sled, and it had rudimentary brakes on the front wheels. However, the only reliable stopping method was to veer off onto somebody’s lawn and roll off.
Imagine the thrill of being 8 years old, screaming down the street at 20 miles an hour, six inches from the asphalt, no helmet, no gloves, no long pants. No wonder I loved my Flexy Racer more than any other toy; no wonder they quit making them 30 years ago, no doubt on advice from their lawyers.
UNDER HIS WINGS
by William Orcutt Cushing
1) Under His wings I am safely abiding;
Though the night deepens and tempests are wild,
Still I can trust Him, I know He will keep me;
He has redeemed me, and I am His child.
Under His wings, under His wings,
Who from His love can sever?
Under His wings my soul shall abide,
Safely abide forever.
2) Under His wings—what a refuge in sorrow!
How the heart yearningly turns to His rest!
Often when earth has no balm for my healing,
There I find comfort, and there I am blest.
3) Under His wings—oh, what precious enjoyment!
There will I hide till life’s trials are o’er;
Sheltered, protected, no evil can harm me;
Resting in Jesus I’m safe evermore.
William Orcutt Cushing
Born ~ Hingham, Massachusetts – December 31, 1823
Died ~ Lisbon Center, New York – October 19, 1902
Have you, on occasion, experienced a moment when something profound comes alive in a brand new sense? In a “eureka moment” this past week, I had been thinking about how disheartening it is to no longer be able to communicate verbally with Jon, my family, our little mixed-breed terrier, Emma, neighbors, and friends. It wasn’t a pity party—just a genuine grieving for the loss of something so personal and precious. 😢
In my February 9 post “Let’s talk tongue,” an excerpt from PubMed.gov includes:
Loss of communication effectively imprisons
the patient in a state of isolation.
Deeper contemplation of the word “imprisons” brought to mind accounts of people unfairly incarcerated. Having committed no crime worthy of such harsh punishment, their confinement was ordered by hateful, totalitarian regimes. Sometimes their imprisonment culminates in horrific executions. Ultimately, others are released.
A prisoner in isolation is alone in a dark cell. He or she still has their voice but have no one to talk to. In a 180 degree flip-flop, a person with bulbar ALS does have people to talk to but no longer has a voice to communicate.
So what was my eureka moment?
We’re almost there . . .
Grasping a truth, as if it was the first time . . . the same God Who made me, loves me and has graciously communicated with me through the Bible and His unparalleled handiwork in creation.
He HEARS ME even though I cannot audibly talk.
HE KNOWS MY THOUGHTS!
Here are the appropos words of David recorded in Psalm 139:1-4 (Amplified Bible)
O Lord, you have searched me [thoroughly] and have known me. You know my downsitting and my uprising; You understand my thought afar off. You sift and search out my path and my lying down, and You are acquainted with all my ways. For there is not a word in my tongue [still unuttered], but, behold, O Lord, You know it altogether.
What could be more reassuring—
God is listening and understands me
even when I don’t utter one single word!!!
I am not isolated from His presence!
He’s got me firmly in His grip.
He knows what this disease is doing to my body.
He understands my groanings—
even though I cannot utter intelligible words.
God needs no intrepreter.
If you live in San Luis Obispo County,
please consider participating Saturday, February 22 in the
MOFF HIKE x BRUNCH.
Click on the link below to register.
Jon and I plan to be there for the panel
featuring ALS Therapy Development to learn about
the latest ALS research.
Has anyone ever told you that the tongue is a muscle? Well, that’s only partly true: The tongue is really made up of many groups of muscles. These muscles run in different directions to carry out all the tongue’s jobs.
The front part of the tongue is very flexible and can move around a lot, working with the teeth to create different types of words. This part also helps you eat by helping to move food around your mouth while you chew. Your tongue pushes the food to your back teeth so the teeth can grind it up.
The muscles in the back of your tongue help you make certain sounds, like the letters “k” and hard “g” (like in the word “go”). Try saying these letters slowly, and you’ll feel how the back of your tongue moves against the top of your mouth to create the sounds.
The back of your tongue is important for eating as well. Once the food is all ground up and mixed with saliva the back muscles start to work. They move and push a small bit of food along with saliva into your esophagus, which is a food pipe that leads from your throat to your stomach.