Living, Moving & Being

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The following is a conversation I recently had with my husband, Kevin:

Me: Thank you for still loving me. You're amazing dear. Many men would be long gone if their wife was in my condition. 

Kevin: You're stuck with me. You couldn't get rid of me if you wanted to! I love you. 

Me: (tearing up) There isn't much of me left to love. 

Kevin: What do you mean? All of you is still here, it's just that your muscles don't work. I love you, not what you can do. You're a human being not a human doing! 

Me: (Many more tears. How I love this man!)    


I still tear up when I think about that conversation. The day to day life with ALS is a blur of many needs and requests. Out of necessity I know I take much more from my husband and family than I can give. But they faithfully stand by me. Such an amazing gift! Their constant love is a beautiful reminder of God's love for me. 

I recently watched a YouTube short of an Asian man caring for his wife with ALS. It showed him carrying her up the stairs of their camper and arranging her floppy body on the bed. It was a sad reality check realizing that physically I'm much worse off than she is! But it's interesting that my family and I don't see me as so "bad off.” 

After watching the video of the man caring for his wife, Kevin remarked, "I don't see you like that. I see you as active, vibrant and involved. You're still my helpful wife and best friend, giving me needed advice and encouragement."

Our kids have said on different occasions, "People looking in must be sad and shocked to see you and how we live, but for us it's just our new normal. You're still the same mom, with the same love for us."

Others may not know how to relate to me, a paralyzed lady with a ventilator and feeding tube, who can't speak or even swallow her own saliva.  However I'm so thankful that like Kevin said, no matter what my physical condition is, it doesn't define me or give me my worth. 

As I was reflecting on Kevin's statement that, "You are a human being, not a human doing”, Acts 17:28 came to mind. "For in Him we live, and move, and have our being..." This verse highlights our complete dependence on God for life, movement, even our very existence. Our life and breath is sustained by Him each moment of every day. Although I'm about as helpless and dependent as someone can get, God sustains me and helps me moment by moment. In Him I have my being. 

Friend, you may be facing a heavy burden with very low confidence and self-worth. You may feel all alone, perhaps without the support of a loving family. However, no matter what you are going through you have the same faithful, loving Savior as I do. Lean hard into Him with your challenges. Remember that He is the One who has promised to sustain you and give you your worth. He doesn't see you as "bad off" because He knows that it's in Him you live and move and have your being! Praise Him!

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