Entering Into the Full Human Experience

Kristin Neva avatar

by Kristin Neva |

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This Christmas season, we reflect on Jesus’ entering into this beautiful, yet broken world. God incarnate entered into human life where he would know both love and betrayal. Fellowship and forsakenness. Hospitality and hostility.

He experienced the joy of eating and drinking with close friends. He celebrated at a wedding party. He took children in his arms and blessed them. He loved and laughed, but since he was fully human, he also cried. He was hungry. He was tired. He felt despair.

Before he left this world, he told his people to love one another. He knew that we would need one another to make it through this world.

When we sign up for marriage and commit to love our partner in sickness and health, we enter into each other’s lives. Our lives are intertwined to the extent that both our joys and sorrows are one. An ALS diagnosis is devastating for both persons in a marriage, and the needs are overwhelming, so we need other people to enter into our crazy ALS world.

My mom is part of our life on a day-to-day basis, giving my husband, Todd, nightly massages and moving his limbs to maintain range of motion, as well as helping with our kids. Others enter into our lives by providing financial support to hire nighttime caregivers so we can sleep. And yet others enter with encouraging notes, calls, or visits.

I have a friend who walked with me — quite literally, with our babies in strollers — during the dark days after Todd’s diagnosis. We are no longer neighbors, but she still checks in with me on occasion by email or phone. She doesn’t offer platitudes or try to fix the unfixable, so I feel free to be honest with her about how I’m doing.

After sharing the hard things we were dealing with a couple weeks ago, she wrote me an email saying, “I am so sorry, my friend. For everything. There is nothing to say except it is so damnably hard. And I can do nothing but listen and grieve for you.”

It’s exactly what I needed to hear. I appreciate her so much.

I’m a problem-solver by nature, which is a useful quality when navigating the complexities of healthcare for someone with ALS. I find medical professionals, secure needed equipment, manage medications, and keep my husband’s throat and lungs clear.

But sometimes I just need to sit with Todd in his pain and say, “I’m sorry you are going through this.”

I regret at times jumping into problem-solving mode. Especially when Todd is really frustrated, I need to zip it, because there isn’t anything to be said, except that it is so damnably hard.

I need to enter into the pain with him.

On ALS forums, we enter into each other’s pain, and when asked, offer advice. At times, it’s helpful to problem-solve with those who know the ins and outs of dealing with the disease.

Whether this holiday is a fun, gift-giving tradition or it holds deeper religious significance, Christmas can remind us all that entering into the lives of others is one of the beautiful things about the human experience. We are doing God’s work when we help each other make it through this painful world.


Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


Ellyn Maloney avatar

Ellyn Maloney

Well said and so helpful to those who may not know the right thing to say. May faith and hope be yours this Christmas.

p.s. Keep laughing


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