Anxious

"Seven days since my last post. I cannot let a week go by without writing something."
"Seven days since my last post. I cannot let a week go by without writing something."
"Seven days since my last post. I cannot let a week go by without writing something."

A sample of today’s incessant self-talk. I have some sort of behavioral program set deeply into my psyche about this blog. I can't say I have anything I really need or want to say, but I just can't let it go for more than a week.

I think about updating you all everyday, but words fail me. The processing I have done in the last week has not felt blog-appropriate. It’s been an internal journey of grieving, watching and waiting. I have cried many tears this week with John. I have told him how much I love him and how much I miss him. Our relationship remains tender and loving, peppered with funny moments and jokes, truth-telling and weeping, prayer and puns, and yet deeply altered.

John's physical health is not too bad, considering. His blood work numbers are good and he is moving around well. We went on a walk together on the Prairie Path on Saturday. I told him that when I was in grad school, Dr. Butman wanted us to sum up our assessment protocols by suggesting the 5 most Striking and Salient Characteristics of each person. As I have reflected on John's progression through this illness, his most Striking and Salient Characteristics have come to mind many times. As we slowly walked through the emerging signs of Spring Saturday morning, I told John how my heart aches for him. The changes and losses he has experienced since we were married are staggering. When we first met I would say that his three most Striking and Salient Characteristics were:

A love for God and a life of prayer and worship, gift of faith and healing, desire to bring others into the presence of a holy God.

This is completely intact and present. John's entire being is directed toward eternity, as it always has been, but with a growing openness to the idea that the Lord may be ushering him into his presence sooner than later. He opens his hands and lays them on his lap many times a day. He quietly inquires of the Lord, "What should I do, Lord? What are you going to do with my life?” Right now I think the Lord is saying I should take a nap.

A brilliant mind, quick wit, nearly limitless vocabulary, proficiency in at least four languages, insatiable curiosity, avid reader…

John continues to amaze me in the way he expresses himself, but his thinking is quite confused. He tells me his dreams as if they were fact and begins to realize this disconnect as the story goes on. He is not able to recall names and places including where we went on our honeymoon. A few days ago John asked me, “As far as you know, do you and I still have the same bond?” I said, “Do you mean are we married?” “Yes.” “Yes, Honey, we are married. Do you remember how we had 500 people at our wedding and you played the piano, and then there’s Charlotte and Josiah…” The stories spark memories and connections.

Can I admit to a small grin on this one? This is the first time in our entire married life that I have been able to talk without being interrupted! I’m enjoying having a captive audience.

Physical strength and endurance, boundless energy, motivation, get-up-and-go, running, biking, dashing…

Beginning with exercise-induced seizures a while back, John’s ability to exert himself has been severely curtailed. Increasing pain and general weakness continue to limit what John can do. He has lost 100 pounds since we were married and is no longer able to run, bike or work. When John’s desire and energy intersect, he plays the piano, takes walks and enjoys going out to eat.


So much has changed since those exciting days when we dated and married. And yet, as I told John today, “Although two of your most striking characteristics have drastically changed, your heart remains the same. You are kind and exude deep goodness. You are full of love and I am delighted to be married to you.”


John’s sister Katherine encouraged him to pray a prayer repeated by the main character in Elizabeth Goudge's book The Scent of Water. It has been a blessing and I hear him pray it daily.

Lord Jesus Christ

Thee I adore

Into Thy hands