Suffering Well…Through ALS

Suffering Well…Through ALS

The following reflection is the first of two from an interview of Eric C. by Nathan Oates recorded on February 12, 2024:

This is what God has for me…not that he gave ALS to me… but it is for his glory…

N. What have you learned through this experience?

E. Our bodies have a life…we all have a battery…we’re losing charge. We’re all going to die. I’ve learned to be grateful for every breath I have because ultimately ALS will take my breath away. My decline is palpable. I can feel the disease actively taking my life away.

Actually, God has given me this gift. I don’t miss running, biking, flying. He has removed self-pity…removed my capacity to feel bad for myself.

Before ALS I would always wonder, when would I have a career, when would I get married, when would I live on my own? I would wonder why do I have all these things? Health issues and struggles in school? But I persevered through them. That’s what prepared me for ALS.

N: What would you say to those who are suffering?

E: extend grace to yourself. Ask God to reveal himself to you. It’s OK to have self pity, however recognize that this is a season that is preparing you for something bigger. This will be part of your story.

ALS is only a fraction of my life. I lived 34 years without ALS. Got diagnosis at 35. Only going to deal with ALS for a little while. ALS does not define me. God defines me. God is my identity. It’s taken 34 years to recognize that. Trusting God each day. To the younger person I’d say, “you don’t have to understand why.”

You don’t have to understand why.

I don’t ask “why?” I ask “how?” How can I give God glory in everything I do?

N: you said (in the men’s group), “I don’t have the energy to ask why and I don’t have the time to ask why.

E: ALS provides the practical application for spiritual wisdom: I’m exhausted by everything: talking, writing, using my phone is a workout. So why waste my thoughts, energy, brainpower on asking why? I literally get exhausted by everything I do. Being awake is tiring. So I just don’t have the time to even think about why, let alone even ask why.

A couple days before Sunday, God, in reference to Dr. David Timm’s [teaching about] thin spaces, how there are certain areas of life where you can touch heaven. I’m living that literally every minute of every day. … One of the spaces he mentioned in the sermon was communion. A couple days ago I had a revelation or word from God or however you might say it… [This:] as I walk up to receive communion I’m approaching the throne of Christ…closer every time…no longer a hypothetical reality…every time I wheel my chair to communion I’m 50 feet closer to God.

N: Why is that a thin place?

E: Awareness. Spiritual awareness. I’ve had the hand of God on my life since I was 5 years old. I had to have eye surgery. I was going under … and vividly remember a ladder going up to heaven and being in the presence of angels. It was very angelic and bright. Then I woke up from surgery and my parents said – I don’t remember this part, I remember walking up the latter to heaven – but my parents said I met Jesus and that I saw a bright light. Since that day I’ve never had a dream like that. Real people real animals. Not spiritual. Not angelic. I don’t live in that. I’ve never ever denied God in my life and now here I am 36 y/o on fire for the Lord. And I’m about to have surgery again – only the 2nd time in my life – we had the conversation last night: you might actually meet Jesus now and forever. I will wake up: to Jesus or to my mom and dad. My lungs are at 54% so I might not wake up.

I don’t fear death. I don’t fear death. I don’t fear actual surgery.

N: what’s the surgery?

E: feeding tube. small. however I want the surgery and at the same time I don’t want it. It will help me eat when I lose the ability to eat.

N: why did your parents say…?
E: they told me that’s what I said: I saw Jesus, I saw a bright light.

N: did you cross over of did Jesus just meet you in the moment?
E: He absolutely met me in that moment. I remember it just like it was yesterday.

N: What has helped you to suffer well – to move closer to God not bitterness?
E: I don’t know how to say it except it was a miracle. I didn’t “do anything” to deserve how easy it has been. The body of Christ, Emmaus Church Community, mom, dad, brothers, hundreds of friends who have loved on me: physically, spiritually, emotionally there for me.

Never once have I felt alone. For any of us – young people – a lifetime of loving and serving the LORD has boosted me through this season. I haven’t had an easy life. I think that was my practice field. Now I’m in the game. I remember – before ALS – for a long time I would drive down the street and I’d drive under this oak tree that’s no longer there. And I would ask God “Am I only going to have 3 years of ministry just like Jesus?” (This is long before ALS) I would always ask God “how is my purpose going to be lived out?” And I knew my purpose was to “impact thousands one at a time” but I would ask – probably weekly – but I would always ask how.

Then I was given this diagnosis lifespan 2-5 years. God is by a long shot getting all the glory during a time when I have nothing.

I have my voice, I can control my wheel chair, I can hardly pick up my cup of coffee. I can’t do anything without the help of others. What a beautiful illustration of how God wants us to live our lives looking to him.

I always wanted my life to have meaning and purpose. I knew it did. But we all struggle with wanting to see the fruit of our labor. Almost self deprecating [I would pray]: God if it’s only 3 years, can you make [my purpose] known?

All my brothers have marriage, career, kids, home… and I don’t… in a matter of a few years all that self pity and asking why is gone. He revealed [my purpose] through ALS.


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