How Could ALS be Called a Gift?


Here’s How Could ALS be Called a Gift?

My dear friend Jeanne passed away from ALS last week.

I’ve written about Jeanne several times, including my recent post about kintsugi, the art of finding beauty in the broken. Jeanne had an amazing way of finding beauty in everything, particularly the broken, and after she saw my post she showed me gorgeous kintsugi vases that she got someone to make for her family for Christmas. They were fitting representations of Jeanne’s life — her ability to find beauty in what people discarded, and the beauty of her life even with her body broken by ALS.

Jeanne taught me a lot of things, one of which is grieving honestly. She freely admitted her fears of dying which meant leaving behind everything and everyone she loved. Death felt daunting. I’m often not that honest. I am quick to speak theology, but sometimes I’m verbalizing what I want to believe rather than how I actually feel. In her position, I might have proclaimed that I was ready to die when I really wasn’t. But Jeanne was authentic in everything she did. She wasn’t going to say something that she didn’t feel just to sound spiritual.

Jeanne clung to life because Jeanne loved people. She loved her family and her friends deeply, called us her forever friends, and loved helping others. Jeanne and her husband John started Sola Coffee 10 years ago, a coffee shop which quickly became a popular gathering place in Raleigh, where they knew their regular customers’ names and their stories. Jeanne’s most verbalized regret as she declined was that she couldn’t serve others. Every time I went to her home, she’d say, “I wish I could be serving you right now. And I’d make sure you had a napkin and everything you needed.” She remembered my physical limitations in the midst of her much greater ones.

The last time I saw Jeanne, she said she was ready for heaven. It was a few days before she went to be with the Lord, and her last words to me were “I want to meet Jesus.” And now she is rejoicing with him.

Jeanne died April 12 and her husband John spoke at our church’s Easter service a few days later about Jeanne’s hope in Christ. His words were unforgettable. The Scripture text for the Easter message was 1 Corinthians 15, and our pastor talked about why that passage is perfect for Easter because the resurrection of Christ means we too will be resurrected. That we will be live for eternity with the Lord is the bedrock truth of the Christian life – for if our hope is only in this life, we of all people are most to be pitied. (1 Corinthians 15:19). We sang “O death where is your victory, O death, where is your sting?” rejoicing that because of Easter, death no longer has power over us – it holds no sting for Christians.

At her funeral, John and their daughter Sally spoke about how Jeanne prized things that others discarded. She loved repurposing broken items and finding overlooked gems in thrift stores and was even known to dumpster dive – proving that one person’s trash is indeed another person’s treasure. Jeanne loved the beach and brought home countless treasures from there including sea glass, seashells and interesting weathered and waterlogged items that had washed ashore, often to her family’s chagrin!  She truly saw beauty in the broken.

John spoke at the funeral about purpose and called ALS a gift. A hard gift. Like much of our suffering, it is a gift wrapped in black, but a gift, nonetheless. It is not good in a human physical sense, as day by day it ravaged Jeanne’s body and made her increasingly dependent on others. I know from experience how hard it is to give up independence, and Jeanne saw her extraordinary creative abilities deteriorate until she could do nothing for herself.

ALS was indeed a strange gift that John said served them for good ends. He wrote,

“God has used ALS to loosen our grip on the things of this world, move our hearts towards heaven and Jesus, where ‘He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.’” (Revelation 21:4)

One morning after Jeanne’s diagnosis, the women in our small group went over to her house to pray. We were at a loss for words, so we prayed through Psalm 142, corporately lamenting together. We read a few verses, and then following the psalmist, added our own words of complaint and protest, moving to requests and pleas and ending in trust.

I love the gift of corporate lament because it allowed us to simultaneously acknowledge the horror of ALS and all it would entail, while trusting God together. Usually it’s hard to do all those things in the same prayer and friends often fall onto one side or the other – commiserating and sympathizing with someone who is suffering, but leaving them feeling hopeless, or just encouraging them to trust and praise God, leaving them feeling minimized and misunderstood.

One of my favorite passages in Scripture is 2 Corinthians 4:16-18, which Jeanne loved and memorized as well. It’s fitting for ALS, for post-polio syndrome, for everyone whose body feels broken, and for all of us on earth who are awaiting the redemption of our bodies.

“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.”

Psalm 116:15 says, “Precious in the sight of the Lord is the death of his saints.” While we on earth are grieving, heaven is rejoicing that Jeanne is home.

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