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Picture [Jesus] as a bridge…His life is life, but it is also the truth about life and it is also the way between the two. He is the way and the truth and the life. Take Him out of the story and the connection between life and truth is gone…
Andrew Klavan, The Truth and Beauty
Throughout the play Hamlet, the prince attempts to find the answer to Pontius Pilate’s question: What is truth? How can we distinguish between fact or fiction, imagination or reality? Maybe you share my mother’s plight and shake your head at how crazy your life is. You can’t believe you are living it–even if you are experiencing a season of bountiful blessing! Do you need someone to pinch you and bring you back to your “right mind?”
My mother had boundless energy. She was game for just about anything, especially if it meant connecting with people. She was as courageous and bossy as she was compassionate. She moved at a pace few could keep up with. Even through her sickness, she flourished. What was her secret? What gave her clarity of mind, strength for the day, and bright hope for tomorrow?
As a Life Coach, she would ask you: “Where do you run when you think you’re going mad?”
–Tricia
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Welcome to my world.
Sometimes I think I am living a dream and not a good dream. I remember the first time I needed a letter from my doctor to my employer requesting some extended time off, and I saw the word “fatal” associated with my name and my disease. I tried to play it off, thinking we are all fatal, but that did not change my reality. When you have fatal written next to your name, “Susan Catlett has a fatal disease…” it has a devastating effect. And to think it only started with a small problem with my left foot…little did I know where this would lead me.
As an opportunity to bring everyone up to date, I am including the definition of ALS from the ALS Association website:
Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing, or breathing.
Is this my Imagination or my Reality? Is this Fact or Fiction? This disease plays such a mind game. Since every patient exhibits symptoms differently, it is difficult to compare whether or not my disease is progressing slowly or fast. All I have as a guide to my progression is the statistical information provided by doctors and researchers. Most ALS patients have two to five years to live from the point of diagnosis. I was diagnosed in August 2011. The good news is:
* Over 50% of people with ALS live more than 3 years.
* Twenty percent live five years or more.
* Ten percent live 10 or more years.
* Five percent will live more than 20 years.
What is my current medical status? Much to my chagrin, from sitting too much (as if I had a choice), I have gained too much weight, which some medical personnel cheer. It seems losing weight tends to exacerbate the ALS progression. My legs continue to get weaker. Thankfully, with much difficulty, I can still stand to transfer from my power bike to my chair, bed, and toilet. This is good news.
Frequently, I experience muscle spasms and muscle twitching which is known as fasciculation in my legs, arms, hands, and abdomen. This does cause me anxiety. Is this the prelude to the next set of physical challenges?
In the last couple of weeks, I have experienced a stiff neck and shoulders. New muscle weakness, or just sleeping the wrong way with the wrong pillow?
My suspicion is my core muscles are getting weaker. I get very tired trying to sit up straight for any length of time. In my head, I hear a change in the sound of my voice. Is it allergies, a cold, my imagination, or ALS? Last week, while at the movies with my husband, it seemed as though my lower lip was twitching, and the tip of my tongue seemed to be numb. Fact or Fiction, Imagination or Reality? Welcome to my world, which now seems to be off balance. So where do I go, and what do I do?
There is only one place I know to go when my world is off balance, and that is to The Lord. Only He can put my world straight. He gives perspective. God is my Reality.
Psalm 31:1-3 & 5
In you, Lord, I have taken refuge; let me never be put to shame; deliver me in your righteousness. Turn your ear to me, come quickly to my rescue; be my rock of refuge, a strong fortress to save me. Since you are my rock and my fortress, for the sake of your name lead and guide me…
Into your hands I commit my spirit; deliver me, Lord, my faithful God.
–Susan
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