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
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
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
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