HUMANITY HIKER

As a citizen from the land of steady habits, I call up the same type of music for each day of the week while I do the early morning chores. On Saturdays I call for the children’s music we played for our kids. This Saturday our favorite musician from that genre, Tom Chapin, was playing.

I change Cindy quickly and easily as she gives no resistance. From the neck down Cindy cannot move her muscles voluntarily. Above the neck she can lift or turn her head. She also can stick her tongue out. She did this as I moved her limbs for physical therapy and my face drew near to hers.

For years I assumed that Cindy sticking her tongue out was only a signal for food, even when there was none around. A few weeks ago I finally wondered if she wanted something else and kissed her.  I quickly discovered that an intimate kiss was precisely what Cindy wanted, perhaps has been wanting for years.

I admit to not feeling comfortable kissing Cindy as she lay helpless physically and verbally. In no way does this feel like “old times” for me. However, since I was Cindy’s first and only boyfriend, there can be only one image in her mind for who is giving her the satisfaction of a kiss. There still must be a vibrant memory, or at least a feeling, of one particular person residing in her mind. That thought is enough for me to always oblige her with a kiss, despite the awkwardness.

I change Cindy’s disposable mattress underpad as the last thing to do in the room before leaving to make breakfast. I used to shift Cindy to a chair in order to do this. Now I use another mode of affection.

I get the new underpad unfolded and within reaching distance on the bed. Then I sit on the swivel chair next to Cindy, at about the same level as the bed. From this perch I easily slide Cindy over and onto my lap, curled up with her right cheek against my chest. I switch out the old pad with the new. Then we spend one or two songs in this position while I rub her back and talk to her.

The song “Grow in Your Own Sweet Way” by Tom Chapin starts to play. This is my favorite of all the children’s songs when our kids were young; the only song that on occasion caused a tear to shed. The title says it all, a song about the innocence and growth of your little loved ones.

Listening to the song invokes bittersweet memories. I realize no time in our lives are as innocent or free of pain as they might seem to be in retrospect. Yet the juxtaposition of holding a declining adult in my lap, instead of a blossoming child, preserves the sweetness of the song without the promise.

Still, I am grateful for our two new modes of affection over the past few weeks. Cindy appears to be grateful as well, her cheek buried into my chest. Ironically, kissing my wife now feels awkward but holding her in my lap like a child brings comfort to us both. Both modes reinforce our love during our final journey together.

After changing Cindy and going through her physical therapy I put her “dancing shoes” on and swing her legs out of the bed. Her “dancing shoes” are a pair of sandals with rubber soles gripping the floor. Her sandals are not what you would want for actual dancing, but for Cindy they keep her feet in place and I can balance her weight over them. Even so I must plant each foot in the right spot and smoothly lift and transfer her weight from sitting to standing inside my arms.

Normally Cindy is six inches shorter than I am, but she slouches lower even with my support. Still, we are able to sway gently back and forth, this morning to a playlist called “Morning Acoustic.” My computer screen is blank, allowing us to see our reflections on the screen. I do believe this comforts Cindy further. I am grateful her head is so much lower than mine as we “dance;” I can shield my tears from her.

I keep saying there is a difference between depression and sadness. During Easter I saw a post, unfortunately without the foresight to bookmark the source, relating depression to the threat of resurrection. Depression occurs when someone has little hope for or even fears what may lie ahead; they even fear a resurrection. I assure you that is not me.

My life has been a series of welcoming the unknown; that has not changed. There was a time when I doubted my ability to care for Cindy at home until she passes away, but those doubts are gone. I handle her infrequent seizures now with a level head; I believe I can handle any of the unknown ahead and still maintain my health.

My tears are caused by empathy, sadness for Cindy, though not in the present moment. Cindy appears to be content with her face buried into my chest. In fact, I feel better by focusing on how Cindy must be feeling as we “dance.”

The tears are not even for how Cindy generally feels about her current condition. A few years ago a bout of self-awareness might have caused a tear in Cindy. More recently I see occasional looks of bewilderment, sensing that something is not quite right. Yet all along her affliction carries the blessing of not fully realizing the state of her decline.

No, what most often brings about sadness these days is empathy with the “past” Cindy. While I am doing everything I can to make Cindy’s life enjoyable, even succeeding to some extent, I cannot shake the realization that this is not what Cindy would want for herself. If “past” Cindy could see through my present eyes she would be overwhelmed with grief. Feeling this grief from a “past” Cindy causes my tears.

Ironically, I know that much of her grief would be the concern for how her illness was impacting others. I wish my mind could make “past” Cindy see that this has been no great burden to me. I know what must be done to maintain my health and I have been as conscientious about that as with caring for Cindy.

I am not afraid of any form of resurrection, or the unknown, or what life will be after Cindy. This is the ultimate test for why I know I can be sad but not depressed. As we sway together, cheek to chest, I hope the unknown is not burdening her either.