I’d have had to miss the dance.
If you’re familiar with this country-western song, you know it’s about someone going through sadness, but the dance makes the grief worthwhile. The ‘dance’ in this context is a metaphor for life’s experiences. There would have been no sadness without the ‘dance’, the ups and downs. The beauty of life’s experiences is worth the sadness when it’s gone.
As I progress, I am helped from my power wheelchair to transfer to wherever I go. Very often, Howard stands in front of me and holds both my hands as I stand up, and we turn together, holding hands. Neither of us has done much dancing, of the nightclub dance floor kind, but we laugh and giggle as I go through this process and pretend that we are dancing as he helps me transfer. These moments of laughter and joy make the process bearable and even enjoyable.
If you’ve ever seen Howard Winters dance, you know that this slow two-step is the best he’s ever done. He practices, tries, and has the beat of the music, but not the feet to move to the beat!
ALS teaches us so many lessons. Some are easy, some are hard. Some seem obvious. Some are readily accepted. Most are resisted and challenged. Living with ALS and having independence and mobility taken away one little bit at a time is painful for the person affected. I can only imagine how difficult it is to watch someone you love go through the process. Having your spouse be your primary caregiver and care-partner is a challenging, rocky path. Yet we get to enjoy the dance.
Gone (or completely revised) are the plans for ministry together. Traveling is very complicated. Accepting that anything I want to do must be done by someone else has not come easily. Howard’s sassy “I do it all” comment on a regular basis exemplifies what his part is in our lives. He is not just a husband, but also my primary caregiver. If he doesn’t say “I do it all,” he says, “that’s what I live for.” My response, “You need to get a life!” is automatic! We’re not talking about big things here; We’re talking about Can you hand me my glass of water? Can you move my arm back up to the armrest? And this is in addition to all the big things. Like helping me get dressed, helping me shower, and fixing my dinner and helping me get that dinner into my mouth.
The intimacy and love in caring for someone you are married to, and love is a beautiful dance. I’m humbled daily by the love and compassion I see in Howard’s eyes as he takes my hand and lifts me to begin the dance: I am reminded of the beauty in our relationship. From the very beginning, I was fearful of losing my husband. Not that he would ever physically leave, but that I would become his patient, and he would become my caregiver. That has not happened for three years, and our relationship has only grown stronger and more intimate. That takes work and effort. Most of all, it takes communication. But none of that would do any good without Jesus.
So they are no longer two, but one flesh. What therefore God has joined together, let no man separate.” Matthew 19.6
Be kind to one another, tender-hearted, forgiving each other, just as God in Christ also has forgiven you. And This mystery is great; but I am speaking with reference to Christ and the church Ephesians 4.32; 5.32
