My Struggle
Food was one of the last accessible pleasures plucked from my increasingly barren vine of human experience. I can understand why people who are facing the convulsive agony that is ALS would be inclined to undergo surgery to handle food and drink; with my body in a state of deplorable decay, I stare down each cup of liquid with a concentrated vigor heretofore reserved for only the most demanding of enterprises; each one a villain to be fought with emphatic earnestness; each victory enthusiastically celebrated, each defeat silently set aside and forgotten.
With the struggle to drink a simple cup of juice simultaneously increasing in complexity while diminishing in capability, the feeding tube keeps coming to my mind as an escape from the constant stress of careful consumption perhaps appears as a viable option; but that flies in the face of my decision to refuse any surgical procedures to prolong my stay in this crumbling house.
I guess that got me thinking about the motivation behind eating. The question behind most of my food choices was “Does this have any value to my body?” I’m obviously not talking about recreational food, but the staples on which we run our magnificent fuel converting, self regulating, self repairing and fully automated machines that we call bodies. When I realized that everything I understood about the nature of food was suddenly irrelevant, I adopted a peculiar flippant ease about the types of food that I ate. The fact that something was high in a particular fibre or vitamin was obsolete. Taste became the deciding factor; well, that and texture.
The truth of the struggle is starting to wear pretty heavy on my furrowed brow. I am increasingly sleepy but sleep itself has become elusive and awkward. I hurt in places too numerous to consider and my joints are seizing up. All in all, pretty consistent with a body that has had enough. The nurses agreed before Christmas that I didn’t have months to go but weeks. You know how the big questions are; how much more of this can a person handle? and, is God saying anything about healing or heaven?
The truth is, I don’t know for certain.
So how am I, many of you ask. Am I at peace (as many of you suggest) or is my soul in need of rescue (as another has suggested). I guess it’s difficult to know for certain from the outside, isn’t it? I mean, what does this kind of struggle look like to your eyes? One thing is certain; the paradigm through which you peer at my suffering is completely biased and significantly alters your perception of it. The only way to answer how I am doing will likely be from an eternal podium, free of the sins and judgment that colour our views now.
Until then, I am (hero or a ham, saint or sinner) just myself
Hi Stephen,have you ever read this encouraging story???
"The following story is a great example of how the Lord teaches and molds us through life's trials.
There was a group of women in a Bible study on the book of Malachi. As they were studying chapter three, they came across verse three which says: "He will sit as a refiner and purifier of silver." (Malachi 3:3) This verse puzzled the women and they wondered what this statement meant about the character and nature of God.
One of the women offered to find out about the process of refining silver and get back to the group at their next Bible study. That week this woman called up a silver smith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest in silver beyond her curiosity about the process of refining silver. As she watched the silver smith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities. The woman thought about God holding us in such a hot spot--then she thought again about the verse, that he sits as a refiner and purifier of silver.
She asked the silver smith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left even a moment too long in the flames, it would be destroyed. The woman was silent for a moment. Then she asked the silver smith, "How do you know when the silver is fully refined?"
He smiled at her and answered, "Oh, that's easy--when I see my image in it."
If today you are feeling the heat of the fire, remember that God has His eye on you."
Author unknown
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Steve, I have always known you to be WITTY and highly INTELLIGENT, but your writing in this blog, the last two I have read is absolutely AMAZING! THANK YOU FOR BEING YOU! By the way, Alvin's girl, Kendra may be going on a Quebec exchange and that's why I called the Epp's. I've been thinking about you a lot lately, wondering how you are and I am so glad Alvin told me about your blog.
Hugs! \o/ Gail
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Dear Stephen,
It has been many years since Harry and I have seen you. Good old Valley days. I have been reading your blogs over and over again. Harry's uncle had ALS, so I am familiar with the process. But hearing what you are saying is so overwhelmingly raw. So real. So true. I can't even put words to it. I cry a lot while reading these blogs, not because I understand, but because I don't. How can anyone? How does anyone contemplate their future when seen through your eyes? I just want you to know that I think you are an awesome man of God. Period. You see, think and feel both inside AND outside of the box on a daily basis. You have incredible insight. You are so right about each and everyones paradigm. We are all biased in some way, and for that I repent. I am so humbled by how God is using your words. Thankyou, Stephen. You are my hero.
Shelly Wielenga
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Hi Stephen,
What an amazing and strangely humorous description of your condition. More grace to you my friend.
Jim
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Hi Stephen: A few days ago, Bill and I were watching some VHSC tapes from 1996/1997 and were amazed to discover that it contained a segment of you and your family who had gathered at your folk's home in Richmond to celebrate Angela's arrival and their first grandchild. The close up of Angela's tiny face still bears resemblance to her features today. It was a wonderful occasion and we were privileged to be a part of it. Of course, we were all finding physical similarities between Angela and her extended family!! This little anecdote reminds me that life on this planet is precious and brief. You are demonstrating (through your blog) how to face impending death as a Christian and your courage and honesty is a witness to all who have followed your journey.
2 Corinthians 4:7-17, the apostle Paul says: "But we have this treasure (the gospel) in jars of clay (our frail bodies( to show that this all-surpassing power is from God and not from us........We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body........Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." Our prayer for you, Stephen, is that God be glorified in your struggle as you touch many people with the hope and peace that comes through a relationship with Jesus Christ.
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