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.


© 2016 Kipling A. Jackson


A Blue Pellucidity

Surrounding me is a deep, clear blue,
In this place my dreams come true.
An eternal love, a never ending warmth, and security,
We enter into my Blue Pellucidity.

The Blue Pellucidity

I find myself sitting before a dark blue grand piano beneath a moonlit sky. The piano – its spotless shine reflecting the cool, blue moonlight on to my face. My long fingers touch the keys. They move gracefully over each of them, searching and feeling every curve, every distinct edge separating each note – tantalizing my senses. It has been a long time.

My fingers press down, the keys give under the pressure. The first notes play. My ears hear the delicate warmth of the tones. My fingers, strong and tight, flow without hesitation from one key to the next. The warmth finds its way into my soul surrounding it with an ecstasy so pure and true making it impossible for my disease to break through.

Upon a whispering evening breeze the notes carry the medley into this immaculate evening. I know this is a dream, but I am in a place where dreams come true – The Blue Pellucidity.


© 2016 Kipling A.  Jackson

Thank You Notes

In honor of this being Friday, I will do the Kip’s Krusader version of Jimmy Fallon’s “Thank You Notes.” And without further ado:

Thank you, caregivers, for holding conversations while transferring me to my wheelchair oblivious to the fact that certain “things” hang low during the transfer process.

Caregiver 1: “Oh, you say there’s a bra sale at Lane Bryant’s?”

I start feeling light-headed.

Caregiver 2: “Yeah, 40% off! Lasts till Saturday.”

A cold sweat breaks out on my forehead.

Caregiver 1: “Wow! That’s a great deal! Mine are worn out, the wire is coming out and everything – ”

My vent alarm goes off.

Caregiver 2: “Why is his face all purple?”

Caregiver 1: “And why are tears streaming down his face?”

I’m thinking, thank God, they finally noticed me. I look down at my crotch hoping they will interpret my eye movements.

Caregiver 1: “You need suction?”

My eyes say no.

Caregiver 2: “You need to be burped?”

What! Aw, come on, guys. Y’all know this one, we’ve only been doing this for three years. Again, I look at my crotch.

Caregiver 2: “Scratch your feet? “

No, no, no and NO! My ball sac is twisted like a pretzel and my ‘nads are squashed beyond recognition!!! Father, please forgive them for they have absolutely no clue as to what is going on… I look down at my crotch for a third time. Their eyes follow mine down and a look of clarity washes over their faces. Divine intervention has arrived. One hand reaches down and searches. It seems like an eternity. Come on, I’ve got a Caitlyn Jenner tuck job going on down there. Oh, for the love of God, what is taking so long. Finally, her hand finds purchase, she pulls…  Ah! My vision returns to normal and my vent’s alarm shuts off. All is right with the world again.

Road Trip

We took a short road trip to the lake house. My thoughts:

I fell in love again today. I rediscovered God’s incredible creation.

My senses absorb the luscious green of trees and vegetation as we travel by.
Eyes slow down the motion, inspecting every tree, drinking in every ounce of beauty.
I dream of running through the spacious grassy pastures,
Climbing up the rolling hills and tumbling down the other side,
With fresh grass in my hair, I pick the yellow and white wildflowers under a rich blue sky.
And the sky, oh so blue, I never knew how much I have missed you!
Clumps of yellow and white in a sea of green underneath a never ending blue.
A warm, delicate breeze blows softly through my hair,
Picking up the sweet scent of the bouquet, I breathe in deeply.
Tears stream down my cheek because I feel my God’s love,
There is no doubt, I am in His presence.
I realize that one day this dream will come true. 

Y’all have a safe weekend!!!

© 2014 Kipling A. Jackson

Article for MDA Arkansas Newsletter

A Tale of Two Lives

                What a mid-life crisis I had. Not even a month had passed after my fortieth birthday when I started to fall hard and often. The odd thing about it was that these falls would occur when I was walking normally with no obstacles in my path. One fall was so serious it sent me to the hospital with a concussion. It was this event that began my trek to an ALS diagnosis on July 3, 2012.

Part of accepting my fate, I believe, was looking at my life as two separate entities: my life before ALS and the life I am living now. In my past life, I was not the greatest person. An aggressive, over dramatic, quick tempered quality permeated my every move. I was not a very friendly person, the only time I really smiled was after having a couple of drinks. The best thing that ever happened to me was falling in love and marrying my best friend, Robin.

I do not let this diagnosis burden me. Yeah, sure it can be depressing to live with a terminal disease, but I have accepted this fact. I choose to live with ALS refusing to submit to the negativity this illness brings. ALS has taken my movement and my ability to eat and breathe, but it cannot touch my soul. My appreciation in the beauty of a new spring – ALS cannot touch this. My intense love for music and writing – ALS cannot touch this. My insatiable will to live – ALS cannot have this!

Technology is amazing. Since I am a quadriplegic, everything I do revolves around eye-gaze computing. For instance, I am writing this article on my Tobii I-15. I had a tracheotomy done recently and am being ventilated with the portable Trilogy. This is a great asset because I can go to the park with my wife and dog, Allie. With today’s technology, along with future developments, the quality of life for a pALS has never been better and will continue to improve.

I am happier than I have ever been in my life. This ordeal has brought my family closer together. More importantly, my now intimate relationship with God grows daily, and my faith is unbreakable.  It says there will be a cure someday – hopefully sooner rather than later.

Kipling A. Jackson 4/21/2014

I KNOW, I Know, I know…

I KNOW, I Know, I know…

I’ve been away for a while. But now I’m officially “retired” from work. No more STRESS!!! I’m really gonna miss the people I work with.

I’m trying to get organized and set up in my home office. Dad has built me a huge desk with lots of room underneath for the wheelchair. It has an L-shape to it and will take up a large part of the office. I want it to be a one stop entertainment shop. I’ll have my PS3/Blue-Ray player, my computer, my monitor, a dvd player, and my stereo on it.

I will be doing a HELL of a lot of writing. Side note here: it’s amazing how fast the day goes by when you’re watching TV. So now that I have caught up with my favorite TV shows, it is now time to be productive.

This blog will be about my experiences with ALS (as I write this, my left hand doesn’t want to type). We’ll talk about how beautiful life really is. I’ll put in some snippets of short stories I am working on as well as other writing projects. And then sometimes, I will just talk about stuff – there’s a lot of “stuff” out there so be warned. I think I will enjoy writing on this blog because it will give me a break from the formality and restraint of what I hope will be very well-written prose. I’ll try to make my grammar proper in this blog but I’m not promising nothing (how’s that for a double-negative).

I am excited about “retiring.” I really do believe my best days of life both spiritually and creatively are ahead of me. ALS will take away my ability to move, it will take away my smile, it will take away my breathing, but this disease CANNOT TOUCH MY SOUL!!!! It cannot touch my ability to love and to be loved. It cannot touch my passion for reading and writing. It will not touch my obsession and love for music. I will not give up. I will fight to the very last. There is so much to live for! And I will live each day to its fullest.

I love you guys! Thank you for your support!

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

Almost Ten Years

It has been almost ten years since my friend Chad Buckley died from brain cancer. His obituary with his picture is still tacked up on my writing desk. I draw inspiration from it and am reminded that he never complained no matter how much pain or disability he faced. I also am comforted by the fact that he is looking down on me right now and will take care of me. One of his favorite phrases was “Carpe diem.” It’s true, we should all “Seize the day” and enjoy every moment of it. Love you, brother.

Kipling A. Jackson

Here is a poem I wrote right after his death:


Through His arms, and
Into His Kingdom,
Our God welcomed me.

All at once, I saw the true meaning of existence,
I knew this was the answer.
For if all could see what now fills me,
No one would dare to offer resistance.

It wasn’t so plain to see,
Through all of life’s pain and misery,
But now it is so very clear to me,
Because now my soul is truly set free.

I now sit here among the stars,
Watching all of you from afar.
Wondering why it is so hard for me,
To understand why you don’t know what I easily see.

It seems to me,
Why all of you do not care to see.
It’s the destination all of you seek,
Not the meaning of the journey.

“Carpe diem!” Dear friends,
Don’t let the instant pass.
Capture the moment and make it last.

Kipling A. Jackson

Why “Blue Pellucidity”?

Blue is absolutely my favorite color.  It has a deep, richness about it that soothes my soul whenever I look at it.   And, to me, the word “pellucid” means purity – the object, whatever it may be, is perfect and has no blemishes.  Together, the phrase simply means: a purest blue I could possibly imagine.

When I see a clear sky on a cool, autumn morning, I see Blue Pellucidity.  Every time I look at the sapphire on my wife’s wedding ring, I see Blue Pellucidity.  Remembering how clear the waters of the Caribbean were on our cruise, I see Blue Pellucidity.

Kipling A. Jackson 2/8/13