A husband and wife live together with a rare neurological disease. The illness profoundly changed their love and brought about a search for meaning.
BY JOHN JACOBSON
“ALL REAL LIVING is meeting,” I read last night. I was lying awake on the futon in the living room beside Claudia’s hospital bed. She was asleep. I was reading The Writings of Martin Buber by the yellow glow of a book light. It was an old red and gray paperback I had found in a used bookshop. The pages felt dry, as if they had not been opened in a long time.
Claudia was breathing rhythmically. Her oxygen concentrator puffed and hummed. Streetlights glowed faintly through the pulled curtains. Her chrome bedrails and the tall arm that held a triangular steel trapeze above her head glowed eerily. I was struck by this line. What did he mean?
This morning I am walking across Palmer Hill in the western Catskill Mountains of New York. The field is all straw colored. It falls to a line of leafless trees. The landscape rolls and heaves from there to Balsam Mountain, Hiram’s Knob, Dry Brook Ridge, Graham, Doubletop and Balsam Lake Mountains which stretch like motionless blue waves across the horizon. It is a day of contradictions. The wind is cold. Sun, when it appears from behind a cloud, is warm.
“Teeeship! Teeeship!” a blue jay calls from leafless sumacs with withered red plumes along the western edge of the field. “Teeeship! Teeeship! Teeeship!” He sounds like a rusty hinge on a heavy door. When he flies I catch a glimpse of his white-edged tail feathers. I wonder how he can weave his way so fast through the tangle of branches.
Claudia has Neuromyelitis optica, a rare neurological disease that has left her bedbound for the past thirteen years. Now there is a new worry about her health.
For years I only occasionally checked her glucose numbers. We were careful about what she ate. I cooked everything from scratch. I counted out carbohydrates.
She took 500 milligrams of the diabetes drug Metformin twice a day. She only needed insulin when she took steroids. It had been a long time since I checked her blood sugar, so last Monday, I pricked her finger and held the test strip against a drop of blood until the glucometer beeped. I watched black lines circle the gray screen until a number appeared. Blood sugar is measured in milligrams per deciliter. A normal range before a meal is between 70 and 130. The meter read 273.
I had some old insulin in the refrigerator. We had not used it since the last time she was hospitalized and was given the anti-inflammatory Solu-medrol. It had raised her blood sugar for days. The insulin was Novolog. This is fast acting insulin that begins to work about fifteen minutes after injection and peaks in about an hour. It was very near its expiration date. I gave her eight units. By Wednesday her glucose was 329 before breakfast. This level was near an emergency. I gave her eight more units. At lunch it was 333. I gave her eight units again. This was not getting better. Was this insulin too old? Was I not giving her enough? I called her doctor.
The clinic was closed to patients due to the COVID-19 pandemic. The receptionist scheduled a virtual appointment at noon. I tried and tried to download the app that was required. Finally I called the office again.
“Can we do this by phone?” I asked.
A few minutes later her doctor called. He prescribed Nateglinide.
“Take one pill before each meal,” he said. “We’ll talk again on the twenty-ninth. We’ll review everything then to see how you’re doing.”
The good news was that she only had three new pills. But this increased the total number of pills Claudia has been taking every day to nearly sixty.
I did some research and learned that Nateglinide stimulates release of insulin from the pancreas. It does this by closing potassium channels in the membranes of beta cells. Calcium channels then open. Both potassium and calcium are electrolytes and conduct electricity across cell membranes. Potassium ions are generally found inside cells, calcium ions are usually outside. Beta cell membranes contain vesicles which are insulin filled structures with a double wall of lipids. With the help of Nateglinide, calcium fuses with the vesicles and insulin secretion begins.
It’s a complex balancing act and it doesn’t come without some risk. Nateglinide’s side effects are seizures and yellowing of skin or eyes. Allergic reactions can include hives, difficulty breathing or swelling of the face. I wrote a note on Claudia’s medication checklist to be sure to give it to her before she ate and I left for the pharmacy.
It’s all so complicated.
The sun has gone under a cloud. Wind is cold on this mountainside field. I pull my coat zipper higher. Tall grasses and broken goldenrod stems lie flattened from winter snow. I pass a milkweed stalk with three empty pods lying in the path. The stalk is striped with gray. The insides of the pods where seeds were are golden. In the distance a woodpecker pounds short drum rolls. A nuthatch calls with nasal notes from tall maples along the stonewall dividing this field from the next. A robin pecks at the ground until I am too close. He flies off with warning chirps. As I so often do, I feel a sharp pang of longing to belong to a flock. I want to meet this world with others instead of meeting it alone.
I remembered how it wasn’t always this way. She was once strong, beautiful and independent. I loved her for that. Now I was checking to be sure the head of her bed was inclined about thirty degrees and that her oxygen tubing was still in her nose. This is how I love her now.
I continued reading Buber last night in the glow of my book light as Claudia’s oxygen concentrator puffed. I came to the line,“… the separation of the human body, as the bearer of its perceptions from the world round it.”
I put the book down and thought about this. Our meetings with the world form feelings and perceptions that only exist inside of us. Some cause wonder. Some bring worry. Some are so everyday that we miss their wonder or worry. I looked over at Claudia. Darkness was all around us. I remembered how it wasn’t always this way. She was once strong, beautiful and independent. I loved her for that. Now I was checking to be sure the head of her bed was inclined about thirty degrees and that her oxygen tubing was still in her nose. This is how I love her now.
There are patches of snow beneath thornapples and between rocks of the stonewall where it is shaded by a stand of drooping Norway Spruces. One of the spruces creaks in the wind. The path is muddy. Heart shaped, round-toothed leaves of gill-over-the-ground are everywhere. Its scientific name is Glechoma hederacea. Gill-over-the-ground spreads by rhizomes. It forms dense mats of little leaves in shaded areas. It has several common names: ground ivy, creeping jenny and my favorite, run-away-robin. It is not native. It was brought to this country by European settlers centuries ago. Now I see it everywhere. Later it will bloom with funnel-shaped blue flowers that are so small and unassuming, they are easy to take for granted.
I walk on, down the hill along an old road through maple woods. Fallen leaves rustle around my feet. They are of all shades between parchment and the color of old pennies. I pass a tree with three trunks. A few dried fern fronds droop from the trunk’s divide. A carpet of moss descends from there to the ground below. Another old spreading maple stands down the hill beside a stonewall. Its trunk is ridged and muscular beneath scaly, lichen speckled bark. It has many dead, broken limbs. Still, it has more buds bursting into tiny red flowers that will become leaves than any of the others around it. These woods are made up of wounded trees.
Claudia was still asleep, and I was still awake. I have slept on this futon pulled next to her hospital bed every night for thirteen years. When I repositioned my pillow, the futon framework creaked. Long black screws with hex key heads hold the framework together. From time to time I have to tighten them up.
Martin Buber placed all of our relationships under two headings. Under I-It he included relationships with objects such as this futon, tables, chairs and my car. Under I-Thou he placed relationships with beings. The most pure of all of these is our relationship with God, but he also included those with other humans. I would add trees, birds and the earth itself.
Our meetings with everything, I-It or I-Thou, happen in the present. We have to be awake or we might miss them. Some time ago I underlined a line in Sartre’s Being and Nothingness: “There is a peculiar paradox in the Present: On the one hand, we willingly define it as being: what is present is—in contrast to the future which is not yet and to the past which is no longer. But on the other hand, a rigorous analysis which would attempt to rid the present of all which is not it – i.e., of the past and of the immediate future would find that nothing remained but an infinitesimal instant.”
The road leads past a crumbled barn foundation with briars and sapling trees growing up through what was once the floor. There is a rusted-out milk can next to a maple. Daffodils are in bloom where the house once was. I wonder how long ago they were planted.
I come to a signpost. Blue arrows with white letters read, “Parking Area, Upper Meadow Loop and Lower Meadow Loop.” I follow the Lower Meadow Loop. The path leads across a steep hillside. I hear birds chirping, but they fly before I can focus binoculars on them. Chickadees are calling in old maples along stonewalls that border this field. Wind bends the few standing stems of orchard grass. Gray headed goldenrod stems sway. I wish I was wearing a warmer hat.
At the far edge of the field the trail leads over a tumbled stonewall into an old sugar bush. Huge maples in varying states of decay stand regularly spaced between spindly second growth trees. Gray boulders are everywhere, capped with thick moss. Here the wind seems quieter. The oldest trees are heavily scarred. They are near the end of their lifespan. Some have fallen and lie blackened and moss covered in the brown leaves. I have read that sugar maples can live as long as three to four hundred years. I wonder how old these are.
The sugar bush is on a south-facing slope. By the stonewalls that surround it and the low spreading limbs of the oldest trees, I suppose cows once grazed between them and that farmers gatheredsap from buckets hung on the trees with a team of horses and a bobsled in late snow. I imagine them taking it to a steaming saphouse to boil into maple syrup.
Overhead, I hear scratching and a soft mewing call. It comes from one of the old maples. Part of its trunk has fallen away exposing a canoe-shaped blackened hollow center above gnarled roots. There is a large burl bulging above the hollow. The trunk bends to my left, the right half of the tree lies in pieces on the ground. Higher, the trunk straightens into a live, moss spotted branch. There are rows and rows of tiny sap wells visible on it in my binoculars. Higher still I find a female yellow-bellied sapsucker, Sphyrapicus varius, clinging to the scaly bark. Sap glistens at the end of her bill. Her back is copper speckled black. It is astonishing how her subtle, but beautiful coloring blends so perfectly with the maple’s bark. When she turns her head, I see that she is unusual. Most females have a red cap. Hers is black.
This is the first sapsucker I’ve seen this spring. They are migratory here. I see another movement above. A male, with red cap and chin is descending, tail first toward the female. They hitch around the trunk, dipping their beaks again and again into the shallow wells.
The futon creaked when I sat up and repositioned the pillow again. Thirteen years of opening and folding has worn its framework. It seems to be loosening more frequently. I’ll tighten its screws tomorrow. I’ll have to track Claudia’s glucose and make sure she takes her new pills too.
Clauadia’s illness hands us one blow after another. I read another line from Martin Buber: “the one thing that matters is full acceptance of the present.”
Why is it that I am never ready?
About the Author
John Jacobson lives in the Catskill Mountains of New York with his wife Claudia, His writing has appeared in many publications including About Place Journal, Aji Magazine, The Curlew, Intima Journal of Narrative Medicine, and Longridge Review. His essays have been nominated for a Pushcart Prize, Best of the Net and a John Burroughs Nature Essay Award.