collection of poems

Ok so I haven't posted in a while. Here's a catch up combo cross post of some poetry I posted to the ALS group. For hoyer hangin' you may need to Google hoyer lifts images or patient lift videos to catch the meaning if you're not familiar with this extremely helpful and totally ridiculous contraption.

I’m hoyer hangin'

Hoyer hangin'

Like a potted plant

In the corner hangin'

Knees up, bottom down

Gently swayin'

Hoyer hangin'

Hoyer hangin'

Catch 'o' the day

I got no say in

Cheeks spread, face red

Feet just danglin'

Hoyer hangin'

Hoyer hangin'

The birthday suit 

And sling are chafin'

Shower chair launch 

With a lunar landin'

Hoyer hangin'

Hoyer hangin'

Please don’t drop me 

I keep prayin'

Up here awhile now 

I’m still waitin'

Hoyer hangin'

Hoyer hangin'

Legs numb, drafty bum

I’m just sayin'

No rush but let’s push 

The button for layin'

Hoyer hangin'

Hoyer hangin'

Towel dried bottom

Like a moonshined raisin

Dignity's gone

But I’ll keep singin'

Hoyer hangin'

I’m hoyer hangin' ...

Likewise the cough assist machine is a helpful way to dislodge mucus and phlegm build up in my airway when I can't produce a strong enough cough to clear it. 

I can't help but poke fun at the ridiculousness of what we have to endure as the result of this stupid disease. I know many of you feel the same way. I also know that many with ALS or caregivers of, find it difficult to impossible to find any humor under such dire circumstances. To you especially, I want to encourage you to know you're not alone! I still have to fight through the periods of desperation with my wife. I find that it's in these lowest moments, that when I truly surrender myself, not to ALS, but to God, that I meet His Son Jesus Christ on the cross and feel His victory over death. I used to be resistant to this very same kind of witness by others. It wasn't until I was truly honest and open with myself that He burst open the flood gates. It's this power that lets me make fun of my situation despite its cruelty and allows a garden to grow amidst the ashes of devastation. 

Any hints of a Christmas tree in this garden are purely coincidental. 

Oh cough assist, Oh cough assist, 

Your huff and puff, I can't resist. 

You blow so hard, you fill my toes. 

You suck my lungs, out through my nose. 

Oh cough assist, Oh cough assist, 

A midnight tryst, my shop-vac kissed. 

You find the phlegm, that I can't seem 

To hork up like, I was a teen. 

Oh cough assist, Oh cough assist, 

Not used by my, proctologist. 

Though constipation, burdens me 

I'd rather not, be helped by thee. 

Oh cough assist, Oh cough assist, 

Stick to mucus, I insist. 

The machine that suc-tions up your prize 

Took my tonsils, cheeks and eyes

Oh cough assist, Oh cough assist, 

I thank you even though I jest 

And finally, a simple ode/prayer that reminds me that we all feel stuck under something many times. But that doesn't have to make us feel trapped. 

Underfunded research, for a disease misunderstood 

With underwhelming support, by those that govern if they would

Leaves unsupported families, islands in a public unaware 

Unable to stop a tragedy, under so much loving care 

Undergoing life's last chapter, unforgiving to the last 

Understanding the futility, unable to make it last 

Dear Lord, please help me out from under this dark cloud 

Your Grace will be sufficient, before I'm under ground 

I lay prostrate under foot of your most Holy Son

Under no pretense of worthiness, my suffering undergone 

My baptism under water entrusts my soul to you 

Under your divine protection, I'll awake to life anew