Me: I bet some people don't even know or remember what the name of your disease is or how it is affecting you physically. Want to fill them in?
Carl: It's a mitochondrial myopathy that is a genetic and progressive neuromuscular disease. The main symptom is muscle atrophy and it gradually affects eyelid function, speech, swallowing, weight loss (last time I checked, I weighed 79 lbs.) balance, gait and probably other things I have yet to experience...basically everything that is controlled by a muscle.
Me: What is the prognosis and is there any treatment?
Carl: The prognosis is slow, steady decline and there is no known treatment or cure.
Me: Maybe you could let people know what you do every day, now that your physical activity is limited...
Carl: Much of the day is spent in taking care of my personal needs, like eating, cleaning myself, and dressing--each one is done slowly and methodically. I spend the mornings in prayer. Afternoons usually involve a nap and a 1/4 mile walk up and down the street in front of our house. I still try to keep track of our finances, but recruit help in writing checks and paying bills online. I also supervise maintenance on our cars and mowers and house repairs but have to hire the work done.
Me: What is the hardest thing you are facing?
Carl: Seeing my independence and mobility ebb away. It is also hard to watch my family suffer as they experience my decline.
Me: What is God teaching you as you walk this road?
Carl: He has used my illness to lessen the grips of sin patterns in my life, enabling me to focus on Him. I have memorized several passages of scripture with Rev. 5:11-14 being one.
Me: Want to quote it now?
Carl: "And I looked and I heard the voice of many angels around the throne. And the living creatures and the elders and the number of them was myriads of myriads and thousands of thousands saying with a loud voice, "Worthy is the Lamb that was slain to receive power and riches and wisdom and might and honor and glory and blessing." And every created thing in heaven and on earth and under the earth and on the sea and all that is in it, I heard saying, "To Him who sits in the throne and to the Lamb be blessing and honor and glory and dominion forever and ever." And the living creatures kept saying "Amen!"And the elders fell down and worshiped.
(Note: Feel free to check his accuracy. I just typed while he recited. )
Another memorized passage that God has used to transform my heart is Psalms 9:1-4. It says, "I will give thanks to The Lord with all my heart. I will tell of all your wonders. I will be glad and exalt in you. I will sing praises to your name O Most High."
I have changed from being activity oriented to being more worshipful. It has increased my joy many fold.
Me: Is there anything you wish you would have done when you had the capacity?
Carl: Visited Alaska and bought a Jeep. (Haha). Seriously though, I wish I would have memorized more Scripture when I could still see to read. And, I wish I had taken Janae camping. Oh yes...one more thing. I wish I could have driven a NASCAR.
Me: Very funny. What is the greatest joy in your life right now?
Carl: Of course, my family. But Jesus Christ, who is a great King, is also my friend. When I call to Him, He listens. I have many stories of answered prayer. If you'd like to hear one, just give me a call!
Me: As your wife, I have observed your prayer life and I know that intercession is a regular and frequent activity. If others want to, how can they pray for you?
Carl: Pray that I don't start feeling sorry for myself and that I apply Psalms 9:1-4 to my life. Also on May 1st, I am having cataract surgery on one eye with the second to follow 2 weeks later. We are hopeful that it will restore a good deal of my sight. Right now, I see only cloudy images. Please pray for successful surgeries.
So...there you have it. Sometimes people ask me how I manage to carry the extra load for the family that keeps increasing in pace with his illness. Carl's attitude of gratefulness and his commitment to not being a complainer makes each new task he must hand me, so much easier. God's grace explains the rest.
Carl also wanted me to tell everyone that he is so grateful for all the faithful prayers and support that we have consistently been on the receiving end of all these years. I concur. Hoping this blog posting will spur you on to keep it up!
