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