Bad, Bad, Bad

Sorry, folks. After reading what I thought would be the final version of my story, I cannot bring myself to publish it. I’ve always joked about my writings being my own contribution to bad American literature. But, this story is terrible and, as a result, I have condemned it to my literature Purgatory – a vast wasteland filled with past ideas and writings wondering about awaiting their fate.  Will they be resurrected and given a new life, or will they be tossed into the fiery depths of my memory to be obliterated from existence? Only time will tell.

Alas, I cannot, in good conscience, take your three bucks for what I have marked as an inferior product unfit for public consumption. The good news is that Kroger has a sale on cottage cheese this week. You guessed it, a 16-ounce container is going for just a little under three dollars – much more fulfilling instead of settling for my cheese.

Copyright © 2016 Kipling A. Jackson

 

 

The Phoenix

A couple of phrases revealed themselves to me last night. Below is the finished product. A poem of darkness and light and hope entitled “The Phoenix”. Enjoy…Kip.

The Phoenix

Under grey cloud I ponder,
Of dreams and wishes I chase away.
As darkness falls over the land,
Am I awake or in deep slumber?
The blackness surrounds and destroys,
Time measured upon apathetic plunder.

Whispering wind flowing through my hair,
Breaking through the morning fog,
A new hope shines down.
I turn to face the rising sun,
To bear witness, the birth of a new day.
Emerging from tainted depths,
The binding ashes shed,
My body aglow in Its healing light.
Bathing in Its warmth,
With magnificent wings spread,
I rise.

12/8/15
Kipling A. Jackson

 © 2016 Kipling A. Jackson

What Is Wrong With Me?

Most of everything you hear about ALS is negative. After reading Facebook posts  from  patients/people with ALS on Facebook , they are depressing. and in almost all of them they are complaining about their ailments and impending death.  There are very few positive posts out there in internet land.The reality of having ALS means there is a good chance I will die of complications from the disease – sooner rather than later. I will die… But so will YOU. Dying is natural: every single thing that has ever lived has died, everything living at this moment will die, everything that will live will inevitably die. The fact of life is death.

The reality of having ALS means there is a good chance I will die of complications from the disease – sooner rather than later. I will die… But so will YOU. Dying is natural: every single thing that has ever lived has died, everything living at this moment will die, everything that will ever live will inevitably die. The fact of life is death.

Make no mistake about it, ALS is a horrible disease. Yes, I wish there was a cure. I would love to be walking and running around instead of having my ass planted in my wheelchair for the rest of my days. I would love to grow old with my wife. I want to see an eight-team college football playoff. I want to write stories and music.

I don’t see my terminal condition like the majority of pALS see it which leaves me in the extreme minority. Being a part of this group exhibiting an attitude that certainly is not the norm brings on self-conscious tendencies every human being experience when their viewpoint goes against the grain.  To me, this suggests there just might be something wrong with me.

3/25/16

© 2016 Kipling A. Jackson

 

ALS Association’s Corporate Breakfast

Here is the transcript for my ALS speech that I made at the ALS Association’s “Walk to Defeat ALS” corporate breakfast on January 31, 2013 (Please excuse my bad grammar). You can see the video on the Kip’s Krusaders page on Facebook.

Good morning Ladies and Gentlemen. I’m going to start things out a little bit differently, I want to share with you a pledge I have written to myself, I think this will provide some perspective on the attitude I have and how I choose to live my life:

I will live each day to its fullest, enjoying the present moment, and, as soon as it passes, I will savor the new memory.
I will not let this wheelchair become a symbol of sorrow and despair, instead, whoever sees me in this chair will see me as a beacon of light radiating from within it.
I will adjust to a new disability when it presents itself, I will adapt to the new process of living which accompanies it, and I will overcome its obstacles.
I shall persevere through God’s amazing grace and everlasting love.
I absolutely refuse to be negative, and I will “Fight Like Hell” to the very last.
This is my pledge to myself, this is my promise to you, Robin, and this IS my battle cry to the world.

I was diagnosed with ALS on July, 3, 2012. It’s a common practice to get a second opinion. Mine came on October 9, 2012, confirming the diagnosis.

ALS affects its patients differently. For me, I noticed weakness in my right leg that quickly progressed to my left leg. Today, I can stand with assistance but I cannot walk. The disease is now progressing into my shoulders and hands and affecting my voice.

For the ALS patient, the simple act of standing or getting into the shower or transferring from the recliner to the wheel chair becomes a daily struggle where the prize is reaching the goal safely and the consequence can be a nasty fall. The results can be irreversible damage to the body or death. These hazards are always in the back of the mind. And it is a constant reminder that you have to think ahead of the disease:

“How will the disease progress in the next few months?” “What will my needs be in a week, in a few weeks, or even a couple of months from now.” “Will I be able to get out of bed?” “Will this be the day that my legs refuse to work?” “When will my body no longer cooperate with what I need it do?”

For me, with the progressive weakness in my legs, we knew the day would come when the legs would no longer provide the strength to lift me up from a fall onto the floor. We knew a morning would come when my legs could no longer lift me out of bed. We asked the ALS Association for a lift that would be able to transfer me to wherever I needed to go, the loaner closet operated by the association provided us with one within a week. Now, because of the ALS Association, I have a safer way to transfer wherever I can.

The loaner closet is full of extremely expensive medical equipment that a lot of time the Insurance Companies will deem as medically unnecessary. Instead of having to wait on this approval/denial process, with your donation, the ALS Association will be able to make this medical equipment available now, when it is needed by the patient. The association also provides for simple needs. For patients who are losing their hand strength the simple act of eating becomes a frustrating one. The association provides oversized eating utensils for a better grip as well as plate guards to keep the food on the plate. Your donation will allow the association to continue to provide these necessary tools to the ALS patient making their eating experience a more pleasant one. The Association also helps the patient through education and support groups. With these, the patient is not afraid to think ahead of the disease. Your donation will insure that these services that the ALS association provides will continue.

Finally, having a terminal disease makes you look at things differently. It makes you appreciate the little things. I woke up last Saturday morning to sunlight coming in through the shades. I thought about it, this sunlight originated from a star located 93 million miles away from us. It has been travelling eight minutes through space to reach us, yet its energy is still powerful enough for life to flourish: it enables our plants to grow, it powers our weather, it provides us warmth from the coldness of outer space. All of these things are necessary – they are little pieces of the puzzle that we need to sustain life, without one piece, life would cease to exist.

Every one of your donations to the ALS Association is a single piece of the puzzle. Each donation will fit with the other to form a larger, beautiful picture of a higher quality of life and a safer environment for the ALS patient to live in.

Thank You so much for joining us in the fight against ALS.

Kipling A. Jackson
1/29/13