The Walk

When my wife and I first started our journey towards an ALS diagnosis, we were chasing the idea that a meningioma was causing fasciculations (muscle tremors) and the weakness in my right leg. After numerous falls and, finally, a concussion, the subsequent MRI turned up evidence of this benign growth in the rear part of my brain. I thought it would be a simple process: open up my skull, remove the offending tissue, sew me back up, do a couple of months of rehab, and I would be up and running again. No problem. But, I knew it wouldn’t be this straight-forward. The one thing in the back of my mind (besides the suspected tumor, Haha!) was the thought that once you crack the shell open, things would never be the same.

I was anxious about the surgery and the possible complications that would come with it. I went to consult with a neurosurgeon and told him about my symptoms. He immediately said my ailments were not the result of a tumor. After observing my gait with the right foot dropping, he referred me to a neurologist.

What, no surgery? Maybe this isn’t as bad as I first thought.

My appointment was two weeks away. I didn’t like waiting for answers – in my pre-ALS days, patience was not a virtue I possessed – so I passed the days researching my symptoms. Everything I came across lead to ALS. I found out it was also known as “Lou Gehrig’s Disease.” If you’re an avid baseball fan like I am, it’s impossible not to know who the great Lou Gehrig was and that he also died from this mysterious disease.

Okay, not good, this is serious, but,  wait a minute, Kip. Don’t panic, yet. Surely, after all of this time, there must be a cure. Alas, I found out the cold, hard fact that, despite it being almost 75 years since his death, a cure has not been found – it remains to this day a terminal disease.

My heart sank, I called my wife from work (sorry, bosses) and told her what my hypothesis was. Still, this dismal probability couldn’t deter us from holding on to hope. Maybe, the neurologist could up with other possibilities of what was responsible for my symptoms.

I remember my first appointment and the aftermath all too well. My heart was beating faster with every step I took toward her office door. I couldn’t get a solid grip on the doorknob because my palms were so sweaty. I remember that my breathing was out of control, and I was on the verge of hyperventilating. On top of that, the fasciculations were relentless and firing off over my entire body.

She watched me walk up and down the hallway. After I had done it, we came back into the exam room and sat down. She proceeded to tell me that I wasn’t going to like what she had to say. Before she could get the next sentence out, I blurted, “It’s ALS, isn’t it.” She nodded.

The neurologist sent me downstairs to the lab for a blood test to eliminate the possibility of heavy metal poisoning. There was a long corridor between the waiting room and the lab. I vaguely remember my wife asking me if I needed any help with walking down there. I told her no, I thought I would be fine.

As I began to walk, I could feel my wife studying me with her eyes watching to see if I needed any help. The dimly lit passage was empty: no passing strangers to acknowledge; no activity of any kind to divert my attention from my encroaching thoughts. The only sounds were coming from my slow, shuffling footsteps on the white, tiled floor. I concentrated on walking straight and upright. I was determined to not let my wife see any sign of weakness.

My left foot swung in front of my right flawlessly; I heard the quiet “pat” as the bottom of my left sneaker made contact with the floor. However, my right foot had a mind of its own. To compensate for the drop-foot, I had to raise the leg up, make sure the top of my foot cleared the floor while I swung it in front of the left, then keep it from dropping to the floor with as much grace as I can muster – this takes more strength to accomplish with every step I took.

Pat, shuffle, clump!  Pat, shuffle, clump!  Pat, shuffle, clump! I focused on the rhythm of my gait hoping this would pacify my consciousness so it would block the pure terror that was trying to claw its way into it.

Oh my God, I’m going to die!  The proclamation shot up from the depths of my soul, out from the dark abyss where I thought had successfully buried it. This was to be the first volley of an onslaught of ghastly phrases that soon followed. I’m too young to die… You’ve been cheated… What will happen to my wife?… She’s going to watch me die… If she stays… Will she leave?… I’ll be all alone… What about my sister?… My dad?… He’ll have to bury me… No parent should see their kid die… Paralysis… Suffocation… Drowning… A slow death… Alone…  You have nobody… You’re gonna die alone…  

I felt my knees get wobbly. The tip of my right foot caught the floor as I was swinging it forward. I grasped for the side railing as I began to fall forward. My hand found it in time to recover my balance.

Why did God let this happen to you?… God, oh God, where are you?… I need you… It was this thought that brought me to the floor. On my knees, doubled over in agony, all I could do was cry. My torment echoed off the walls of the vacant hallway down to the waiting room where my wife was watching me with tears in her eyes.

I have no idea how I made it to the lab. The only other thing I remembered about the rest of the day was holding my wife tightly in bed that night with fasciculations popping off all over my body. I was so nervous that I couldn’t fall asleep. I was too busy looking up at the ceiling, staring into the unknown.

Copyright © 2016 Kipling A. Jackson

 

 

 

 

 

 

Watching You

“Watching You”, my new story, will be released on Friday, July 1st, 2016. It will be available in paperback and as an audio book – these formats will not be ready for purchase until late July or August. However, you can pre-order your ebook copy on Amazon.com now. Just click on the icon to the right.

Don’t have a Kindle? No Problem. Click on this link to download the free Kindle app.

http://www.amazon.com/gp/digital/fiona/kcp-landing-page?ie=UTF8&ref_=sv_kstore_4

Do you remember your first crush, most everyone’s had one, right? You remember feeling the warmth in your heart and your face flush bright red whenever you saw that one special person. Then, if you were lucky, they flashed you a smile, said “Hi”, and from that moment on you were hooked. You would do anything, it seemed, to make them acknowledge your presence. This would range from hours spent in front of the mirror debating with yourself about which outfit looked the best to instructing your goofy parents to drop you off far away from the school entrance so that no one could see you getting out of the family van (No, mom, I won’t kiss you goodbye!). The crush was a hellish roller-coaster filled with days of euphoria when your obsession noticed you and intense depression – even anger – when you’re ignored.

When you finally got home from school that day, you found out you couldn’t concentrate. Homework be damned, you had more important problems to deal with than figuring out what x was. Lying awake in bed, you didn’t fall asleep because you were too busy wondering what you did wrong.

Before class the next day, you discovered the reason you’d been overlooked: they were hanging out with their special person. Your heart was crushed by the sudden act of betrayal. Like most kids, in time, you would recover and go on with life.

You never forgot about the classmate who refused to accept the rejections. You remember hearing the rumors of a couple of stays at a psychiatric hospital. What happened to him? In today’s world,  information is so easy to come by, so you grab your smartphone and look him up. There, before your eyes is a picture of him; he seems to be well-adjusted and, judging from his clothes, you know he must be successful with his career. The images make a believer out of you, and you think he’s left those dark days far behind. But, your wisdom gained over the years interjects and tells you the pictures don’t tell the whole story –  they only show what the person wants you to see. Then you begin to ponder: what are they hiding? After all, everyone has their secrets.

My Sweetest Love,

Tonight, I sit here watching you in this busy restaurant laugh and gossip with your friends. You have no idea that I’ve followed you here. Except for a few fleeting encounters, my existence – in your eyes – remains, at best, a trivial one. I’m not a part of your world, and it seems like you don’t care. It drives me insane.

No one can ever love you as much as I do. I will never hurt you nor do you have anything to fear from me. I am your lover, protector, and savior. Why can’t you understand this?

I do have a confession to make.  I’ve been observing all aspects of your life to see what I can do to be a wonderful, future husband to you. I make sure I’m the first person that sees you in the morning. I’m there to welcome you home at the end of your day. I watch TV with you – your shows have now become my favorites. And when you go to bed at night, I always make sure you’re tucked in and safe. You see, I’m already a big part of your life, and you don’t even know it.

The possibility of living without me is not an alternative I want you to consider. Therefore, I’ll take responsibility and eliminate this as an option. You belong to me, and I shall stop at nothing to see this through. I won’t live without you, and I’ll make sure you’ll never live without me – that’s a promise.

Until the day you finally accept my everlasting love and devotion, I’ll be watching you.

Eternally yours,

J.

 

My Forever

Here’s another old poem I stumbled across while going through the old Jackson archives.

My Forever

I cannot see them but I know they are all around me.
Watching over me, Taking care of me,
Cradling me with their majestic wings – so white and pure,
Absorbing my tears of sorrow and pain.
In a paralleled existence, there to catch us when we falter,
As we have so many times and are destined to do so many more.

I will someday break forth from this motionless body and fly through the sky with them.
Higher and higher will I soar,
My winged soul reaching for the edge of Heaven,
Only to discover what infinity truly is.
I will become one with them and will also wipe away the tears of others.
This is my hope, This is my blessing, This is my forever…

Do not cry when I get my wings,
For I will be there watching over you, wiping away your tears.
I will be there to catch you when you fall.
And on that day when you are set free,
I will be the first angel you see, I will be the one to give you your wings,
So that we may both soar on our wings together reaching for the edge of Heaven.

Kipling A. Jackson 9/18/2013

Dedicated to my lovely wife, I LOVE YOU!

©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

 

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
5/11/15

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.

5/12/15

© 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!!!
Kip

© 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