#39 My ALS Journey—Consumed

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“The world tries to silence our expression of feelings of hopelessness and despair. This “shushing” breeds shame and an overall feeling that seeking comfort is selfish. As a result, we are made to believe that even God does not want to hear from us. Nothing could be further from the truth.”

Tricia Lewis

In my job with Reproductive Loss Network, we talk about reproductive loss as a loss that is often disenfranchised, meaning it is grief that is not “openly acknowledged, socially validated, or publicly mourned.” Disenfranchised grief consumes. It is a grief that always there but rarely appreciated.

I processed this more academically within the last few years, but it has been re-reading my mother’s blogs that taught me that, as Christians, no grief experience fits this definition. The Christian faith instead gives us language within the Word of God to lament and express our grief and read of shared suffering. We have a God who hears and sees (Gen. 16:13), a Holy Spirit who helps us pray (Rom. 8:26-27), a body of believers with whom we can publicly mourn, and Christ the Son who is abundantly qualified to comfort us (2 Cor 1:5; Phil 2:1).

Dane Ortlund writes, “Our pain never outstrips what he himself shares in. We are never alone. That sorrow that feels so isolating, so unique, was endured by him in the past and is now shouldered by him in the present.”

My mother here is lamenting. She is acknowledging that her life is unspeakably sad in many ways; she is consumed. But as she writes, her focus remains steadfast on the things of God as she articulates her complaints and shares them with us. Because she trusts in the comfort of Christ, she is not alone and her words become sweet to God who hears.

–Tricia

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The other night, as I was making one of those midnight trips, the thought came to me: my ALS consumes me. I realized every waking moment, I think about how the disease is affecting me.

Consume— a verb.

To destroy or expend by use; use up; devour

When I read the definition, it is understandable why there are so many Scriptures admonishing us not to worry. One of my favorites is “Don’t worry about tomorrow. Sufficient enough are the troubles for today (Matthew 6:34).”

Boy, that is the truth.

It is evident being consumed with something that is not of God can and will do as much if not more, spiritual, emotional, and physiological damage as the disease itself. I hate the fact that I have this disease. There is nothing fun about it. I hate that it consumes my thinking and gets in the way of everyday joys. I hate that I am constantly on guard for the next physical change. I hate how it affects Cliff, the constant worry and concern I read on his face.

Then, I think about those around me, and I wonder what consumes them, what distracts them from everyday joys. I wonder, are they bothered when an idea or thought “consumes” them, eats them up, devours them, destroys or absorbs them, when they cannot focus on anything else but that one situation or problem? I think that is why the Bible warns us not to worry because the difficulties of life do and can consume us.

I can tell you, I don’t want to be consumed by ALS. I do not want it to destroy, devour, or absorb me; I do not want it to rob me of my joy or delight. So what do I do and wish I would do more often with all my heart, with all my mind, and with all my strength? The only thing I know to do: is trust God.

–Susan

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