It was 5:00 am, and our bedroom was just getting a glimpse of sunrise as I lay under my warm covers. I could make out Pam’s shadowy outline as she sat up on the edge of the bed, pausing briefly before she continued. As I watched her in those moments, I was so thankful for her and filled with loving thoughts. But just as quickly as those thoughts came to me, a sudden image of my sister, Sigrid, flashed in my mind, and my smile dissolved to tears.

I had just come back from Minnesota where I was helping care for my brother-in-law, Bob Johnson, who is in the final stages of ALS. He is an extraordinary man with a strong resolve in the midst of great health opposition. He is many things, a visionary, Emmy Award winner and a lover of people no matter their position in life…but most of all…a man of impeccable integrity.

Now he struggles to breathe. The combination of medications he takes is hard to regulate from day to day because his condition is continually deteriorating. The simplest of physical transactions are accomplished with great difficulty, and he sleeps a lot. He doesn’t have much of an appetite; there is understandable anxiety and confusion to some degree. He’s lost all ability to handle even his most personal needs and it is disconcerting to him. . His emotions are mercurial. He doesn’t want to linger, but fights to keep active and engaged. I say all of this to tell you that I have no idea what he is experiencing.

Bob is my age, seventy one and it seems to me that it’s too soon for something like this to happen…. After all, I’m the same age; I’m young aren’t I? He was just fine a few months ago…. and then this. It’s too abrupt, and it’s “not supposed to happen like this”, “this stuff happens to other people, not my family.”

Then the stark reality… I’m not in charge of arrangements. Death is as sure as life, and everyone gets their turn…I’ll get mine. People pray for those who are sick, and that’s important…praying against illness…but if God wants you; Honey…you’re goin’.

So what’s the big surprise? You know I never thought about dying when I was young….because I was going to live forever. As I grew older, and dying came to mind, I mused about how strong I’d be. I just didn’t want to hurt when I died…so I much preferred dying in my sleep or something easy like that. When I had cancer and the potential of a less convenient way to get my jet pack came in to view….my heart better understood the lyrics to an old hymn …”Whatever my lot thou hast taught me to say, it is well, it is well with my soul.”

Bob has the family title of brother-in-law, but for my brother, Corliss and me…he is our brother. We worked in overlapping shifts for about ten days to help my sister and their two sons care for Bob. It’s a constantly evolving experience. You have this confluence of hospice workers, ministers, nurses, schedules, equipment, family and friends wanting to extend their love and concern with phone calls, emails, visits…and of course scheduling meals to be delivered. There’s an issue with the air conditioner and workman add to the contained bedlam, the cleaning lady is there to clean, and someone is always at the door. There are technicians to help with equipment for Bob, the switching of machines due to insurance protocols…and all this along with Bob’s great desire to plan the funeral. Oddly enough, that process invigorates him because planning is what he’s done his entire life. This silent storm is continual and there is no such thing as sleeping all night for Sigrid. After a few days you’re in a survival mode and it can be periodically overwhelming.

I have the treasure of Pam…but soon, for my sister, there will be no one to look after, no one to snuggle up to, to feel the warmth of their hands, their smile, there hugs, their presence, their kiss. There are years of knowing this life and the familiar patterns…but then suddenly…. no more. I can’t imagine it…For now, all I can do is pray and weep.

One thought on “FOR NOW

  1. Oh, Greg, I’m weeping too! My heart goes out to you and Pam — and Sigrid and Bob. ALS is such an emotionally painful disease, but he’ll be glad when he’s on the other side! Your song ‘It Is Well’ was sung by her grandkids at our dear Leslee’s funeral. It comforts me and brings me tears at the same time! Rest in peace — in this life! — and may Bob die in his sleep! Love, Jeanne


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