See Author's notes for more information
about Bud, ALS, and references.
ALS. Lord! What a mess, Lord!
Am I in all of this?
I used to work. I used to play.
I used to hunt and fish.
I once did this. I once did that.
“I can not,” now, I say.
I struggle just to brush my teeth.
To feed myself. To pray.
My mirror bluntly tells the truth.
I slowly melt to skin.
I’m scared. I’m mad. I’m overwhelmed!
Deny. Argue. Give in.
Have I really known myself, Lord?
At peace with God and men?
Makes me wonder about ‘then,’ Lord.
Who should I ‘then’ have been?
Was I just what I could do, Lord?
Or just what I have said?
No! I know I was much more, Lord!
Than words and what I did!
Look at all the friends I have, Lord,
who shower me with love.
I count on them, as they ‘stop by’,
and all ‘my’ jobs get done.
My wife joins in. She smiles. We joke.
We hug. We pray. We cry.
I hold to faith. I hold to hope.
I know You are nearby.
You draw me closer, closer still.
New form begins to show.
Will ‘I’ appear before my death?
My 'spirit-self’ I’ll know?
Friends, when I go, don’t weep and say,
“A shame! An empty shell!”
My Jesus led me safe away.
I’m whole. I’m strong. I’m well.
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Author Notes
My Bud was diagnosed with ALS in August of 2014. Bud and I are both Christians. If you've never been told, being a Christian does not make you immune from problems, doubt, anger, fear, denial, and despair. What being a Christian does 'do,' is make you 'more than a conqueror through Christ who lives in us'. We depend on Him now in this life and we depend on Him for the next. This poem attempts to communicate our process of petition, acceptance, faith, trust and praise, only made possible because we know ... that we know .... that we know, God is our refuge.
Psalm 62: 5-8
My soul, wait in silence for God only,
For my hope is from Him.
He only is my rock and my salvation,
My stronghold; I shall not be shaken.
On God my salvation and my glory rest;
The rock of my strength, my refuge is God.
Trust in Him at all times, O people;
Pour out your heart before Him;
God is a refuge for us.
Romans 10:9-11
If you confess with your mouth, 'Jesus is Lord,' and believe in your heart that God raised Him from the dead, you will be saved. For it is with your heart you believe and are justified, and it is with your mouth you confess and are saved. As the Scripture says, 'Anyone who trusts in Him will never be put to shame.'
2 Tim 4:6-7
I am already being poured out like a drink offering, and the time has come for my departure. I have fought the good fight, I have finished the race, and I have kept the faith.
ALS (amyotrophic lateral sclerosis) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
Amyotrophic (from the Greek language) means 'no muscle nourishment.' Without nourishment the muscle atrophies (wastes away). Lateral identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As the area degenerates it leads to scarring or hardening (sclerosis) in the region.
Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. Progressive degeneration leads to motor neuron death. When motor neurons die, the brain loses the ability to initiate and control muscle movement, and the patient loses the ability to exercise voluntary muscle control. Eventually the ability to move, speak, eat, and breathe are lost. Mid-course decisions involve wheel chairs, adapted motor vehicles, adapted housing, alternative communication devices and full-time caregivers. End of life decisions involve the use of feeding tubes and breathing machines and hospice.
Much research is underway, and progress is being made, including a drug trial which may help about 7 percent of the ALS population. Researchers estimate an effective drug to help the entire population is at least 15 years out.
For more information, see ALS Association at http://www.alsa.org/about-als/what-is-als.html.
Bud has contributed blood to the Mayo Clinic, Jacksonville, ALS blood research repository, housing thousands of ALS patient samples, as well as thousands of control samples. Blood from that repository is shared with universities and other research facilities needing comprehensive sampling. Bud has also contributed genetic material for a specific Mayo Clinic, Jacksonville, DNA research project. At this point, Bud's condition is not serious enough (thank God) to be included in current clinical trials - dosages and chemical composition are highly experimental, with significant risk of lethal side effects; clinical trials are only for end-stage participants.
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