The morning sky dawned pewter gray, and leaden light seeped through the plantation shutters. I climbed the stairs after my stationary bike ride and knee push-ups, and through a doorway saw Dad sitting on the edge of the bed, in profound shadows. He did not move, but stared at the wall, at the shutters, and I could feel him contemplating his next move, as in, Do I have the strength to slide off the bed onto the commode? Will this day deliver the same slow struggle? He knew it would. The nurse had called him the day before and had reported, “The doctor asked me to let you know your MRI looks good.” What does that mean? he had asked. She did not know. But I knew. A “good” MRI means no lumbar spinal condition is contributing to Dad’s profound leg weakness and wasting, to his paralysis. A “good” MRI means the certainty of a bad diagnosis, of diabetic amyotrophy, incurable, untreatable, a close cousin to Lou Gehrig’s disease, amyotrophic lateral sclerosis. The call annoyed him. He had questions for the doctor to which he wanted answers, like, Is there anything I can do to slow my deterioration? and Is there any connection between September’s meningitis/encephalitis and today’s diabetic neuropathy? “Your MRI looks good” answered nothing, but just eliminated a negative. Mom called to make an appointment, and the receptionist said Dr. Hunter would see him again in four months. (If he’s still alive, I could not help muttering to myself.) Watching Dad sit on the edge of his bed, I pushed away thoughts of his perpetual fight against despair; I do not have the strength to absorb his angst. But I can cook his dinner, and served a beautiful baked chicken and dirty rice baked in a French cast iron casserole. “Thank you for this lovely dinner, Rog,” Dad praised, and Mom giggled cutely for the hundredth time at being waited upon. We browsed through Netflix for 30 minutes, and finally settled on an obscure Norwegian movie with dubbed English dialog, and Dad promptly settled into a nap for the duration. I used the time to assemble his new office chair, since the hydraulic piston had broken on his old chair and it had sunk permanently to its lowest height, too close to the floor for him to get up by himself. He will feel lordly in the new (and inexpensive) black bonded leather chair, and much more comfortable as he writes letters to beloved family members, one who was injured by a drunk driver, one serving a Church mission in Massachusetts, one shivering in Montana, one in the Army in Honduras, one who is brilliant and has big questions and a good heart, and to others who he loves. These are his last contributions, the contributions he has the strength for, little actions with big meaning for those he loves.
(Pictured above: chicken and sausage on a bed of dirty rice, Cajun style.)
Pretty on the plate.
The old.The new.
I informed Mom and Dad I was cooking southwest wraps for dinner: ground turkey, black beans, corn, and rice rolled in tortillas and crisped in an iron skillet. He looked at me funny and asked, “Rats for dinner?” “Wraps,” I reassured him. Earlier in the day he had cut himself. He had reached through the bathroom doorway for his walker handles, and the door’s strike plate had sliced the paper skin of his forearm. The CNA wiped the floor clean with baby wipes, and bandaged his arm. He sat at the kitchen table telling me about it. My daughter Laura has sent me her ten favorite recipes—all winners—and I have made two or three each week to spice up Mom’s and Dad’s dinner time. Tonight, we gobbled up Cajun chicken with dirty rice, which I learned is rice cooked in the fats and juices and spices from cooking the sausage and chicken pieces. Dad praised the meal no fewer than six times before we finished eating. I relish the experience of making beautiful and delicious dishes which people enjoy. As we ate, Dad told me the results of his Mayo Clinic spinal fluid test. The nurse had called to inform him that his spinal fluid is “completely normal.” Completely normal. “My spinal fluid is completely normal,” he sounded discouraged. “But I am getting worse by the day.” Once again, the good news was hard to take. No diagnosis equals no treatment. Here was one more possibility explored. Here was one more hope disappointed. Here was yet another beginning of searching for elusive answers while suffering unanswerable pain and weakness and while fighting for his life and for his quality of life. I am powerless. All I can do is cook dirty rice. James the physical therapist stopped by after dinner to evaluate the effectiveness of therapy. He asked Dad all the same questions everyone else has asked. He poked and prodded and asked “Does that hurt?” a dozen times. Yes, it hurts. A lot. After ten minutes, James had figured out what dozens of doctors and nurses and tests and therapists had not figured out. The spinal nerves are inflamed, causing him pain, due to his age and his recliner sedentariness and his stooping over and due to his spinal joints not being moved and not circulating blood to the nerves which therefore are inflamed and causing him pain. Simple. Just do these exercises. And don’t sit: sitting kills your nerves. I am skeptical of any one person who has all the answers, and that quickly. But, could he be onto something? I will try to help Dad to the exercises. Meanwhile, he is too tired and weak to anything but sit in his recliner and kill his nerves. He invited me to turn on the Christmas lights wrapped around the bushes, and asked if they had come on despite the snow. Yep, I answered, for I had wrapped every joint and plug with black electrical tape to keep out the water, as I did last year, and the year before.
The text came at 2:32 a.m. “I am sick. Siiiiiick.” Vomiting. Chills. Sweats. Body Aches. Withering weakness. He thought it might be food poisoning from the cold cuts or hard-boiled eggs sitting in the hospital cafeteria cartons for who know how long. Or a bug. Either way, he was down for the count. The next night, Mom threw up, but she did not get sick, just a bit tired. I drove Steve to the airport Sunday morning, glad he was better, glad Mom did not get sick, glad I had escaped. But about 2:45 a.m. the next night the scene replayed itself, and I was siiiiiick. I was useless to the world, no help to anyone. I just hunkered down under the covers, chugged Pepto Bismol, slept, tried to watch movies, tried to stay hydrated, tried to keep the family abreast, tried to stay abreast. The hospital had sent us home with a norovirus. A gift. A joke. Sarah has held down the hospital fort, with Carolyn and Megan for company, even though her own father-in-law passed away in-between-times. She goes back to work tomorrow, at the facility to which Dad will be moved, perhaps tomorrow. Jeanette flies in the next day to take a long shift. We are all managing, if barely. And it is enough.
(Artist renditions of pathogen by Gerd Altmann from Pixabay.)
“It’s a joke!” Dad has said to me many times. He drops something on the floor and stares at it, unable to bend to pick it up. “It’s a joke!” He relies on Mom to pull on his socks and pant legs, to straighten his shirt collar and do up the buttons. “It’s a joke!” The push mower pulls him faster than he can follow and he falls, but not, of course, until he has reached the concrete driveway. “It’s all a big joke!” I have never thought these jokes particularly funny, but I can certainly recognize the ironies. And at the hospital he found new things to declare a joke, like when he couldn’t hold his spoon and we fed him his mashed potatoes and meatloaf. A joke. And the newest: radiculitis. Encephalitis, as I understand it, is a swelling of the brain. Meningitis, they tell me, is a swelling of the membranes protecting the brain and spinal column. They are dangerous and painful, caused by invading vectors, bacteria or virus. They can kill you. But all of Dad’s spinal fluid tests were negative for both. Had the cause been bacteriological, antibiotics would have been the treatment. Had the cause been viral, merely time and careful attention. Now a new theory, the meningitis and encephalitis are not caused from the outside, but from the inside, from some internal mechanism creating the inflammation in the membranes and nerves, radiating out from the central nervous system. Radiculitis. “Guess what?” Dad quipped. “I have ridiculitis! It all a joke! Ridiculous! My central nervous system is trying to kill me! A big joke!” And he laughed. I was glad he could summon the mental and physical wherewithal to laugh. They injected strong steroids for three days, and he began to move again, and raise his legs and feet, and feed himself, and engage intellectually and coherently with the physicians and therapists. And to be willful and stubborn again.
(Artist rendering of neural network by Gerd Altmann from Pixabay.)
The year was 1945, the last year of the great and terrible War, and Dorothy languished from pneumonia. The family thought she would die. Mom was the oldest child, but still a little child. At his last house call, the country doctor said he could do no more for Mom’s mom. But when he came to the house another night, he offered a glimmer of hope: he had a new medicine to try. “I don’t how much to give you,” he hedged as he filled a syringe full with yellow fluid, “so I’m going to give you a big dose.” Six years old, Mom watched the physician inject the fluid into her wasted mother. “We’re just learning how to use it.” Called Penicillin, it showed promise, he said. Professor Alexander Fleming discovered in 1929 that the Penicillium bacterium produced a “juice” deadly to rival bacteria. In the early 1940s, Penicillin had transitioned from a laboratory curiosity to a serious infection-fighting medicine, of special value to wounded and diseased soldiers. Penicillin became widely available to the public in the spring of 1945, just in time for my grandmother Dorothy. Very quickly after the injection, she turned a corner and began her journey back to the land of the living. These 77 years later, Mom asked rhetorically as she reminisced on her childhood, “Can you even imagine the world before antibiotics? People got sick and just died!” How grateful I have been, as I have carried and rocked sick babies in the middle of the night, for the miracle of antibiotics. Without antibiotics, I myself would have died a dozen times over.
(Photo from Scientific American, used pursuant to the Fair Use Doctrine.)
Mom keeps a list of Dad’s prescription medications in large-sharpie print on a white posterboard taped to a cupboard. And underneath are the pillboxes, one for morning and one for night. With his late-night reading, Dad often doesn’t take his a.m. medications until the p.m. “Did you take your pills, Nelson?” Mom badgers from her recliner, knowing she has to badger because he forgets and procrastinates. When he sheepishly shakes his head “no” she fires back, “You have to take your pills!” Bad things can happen when the pills remain in the pillbox. But eventually all the day’s pills get swallowed. What a great little invention the pillbox is. I even use one so the day’s medicines and vitamins and supplements are all ready to bottoms up. A pillbox is especially handy when traveling, so I do not have to take a bag full of bottles, although I have learned the hard way to strap the box closed with rubber bands. Come Sunday evening, Mom and I are filling Dad’s and my respective pillboxes. You have to take your pills!
During gym class, playing volleyball—that’s when it happened. My heart started to flutter and I became weak and light-headed. Sitting on the sidelines with my fingers pressed to my jugular, I managed to count 300 beats in a minute. Then it stopped, and I was fine. I was 17. My doctor trained me to stop the runaway heart-beat using vagal maneuvers, bearing down while holding my breath. Normally, lying on my back was all it took to slow the beat. Fully 40 years later, the vagals would not work, and my friend took me to the emergency room after two hours at 180 bpm. My cardiologist explained SVT—supraventricular tachycardia—a condition in which the electric circuitry of the heart becomes confused momentarily and takes an unintended and incorrect short cut, sending the heart racing. He thought low-dose Metoprolol would do the trick, and it did.
The roofing inspector had come to examine the 25-year-old shingles, and Mom watched from the back yard, seated on the rock wall. She began to feel funny in her eyes and head, stood up, became dizzy, and collapsed. The mortified inspector helped Mom to a chair. Her lip had glanced on a rock and was swollen and red. A brain MRI showed no stroke, no tumor, no inflammation, nothing but a very healthy brain. But the halter heart monitor revealed repeated episodes of rapid heart rate. Mom’s doctor, a neighbor, called me to explain the test results, the textbook symptoms, and the treatment. Knowing all about SVT, I jumped in to inform him of my condition and treatment. We chuckled in astonishment and excitement at the genetic coincidence. “Looks we know now where you got it from,” he said, amused. Chuckling felt appropriate, because Mom’s condition is not a heart defect, just a minor electrical short, and easily treatable, and because after four weeks of tests and consultations and worry, we both felt so relieved to have the answer, and such a positive one. Mom took her first dose tonight, and is already back on the stationary bicycle, albeit slowly and carefully, her fear ebbing, on her way to renewed strength.
Roger to his neurologist ten years ago: “I had a brain MRI two years ago.”
Neurologist to Roger: “Really? What did it show?”
Neurologist: “Really?! Well, I’m sure it showed that you have a brain!”
Roger, soto voce, Oh, you are just so clever, aren’t you?
Mom describes her brain MRI as a horrifying experience, one of the worst experiences of her life. And this from a woman who had her childhood cavities filled without Novocain. Despite the standard-issue ear plugs, the rhythmic clanging banging of the MRI machine smashed past the plugs and into her cranium and rattled around tortuously. While I fell asleep during my last MRI, she did not know if she would survive hers. She was so spent and disoriented after the scan, she found walking implausible and opted for a wheelchair, and was never happier to be home in her recliner. I will see to it that her next MRI is preceded by a dose of valium.
Her MRI report has come in, with its “supratentorial” this and its “intraparenchymal” that, showing conditions “not unexpected for age” but otherwise “normal in appearance.” No signs of stroke. No tracks of tumor. No inklings of inflammation. Mom wanted to jump for joy, but settled for a grinning cheer and a shaking of upraised hands. She felt so relieved! So did I. But the mystery of fainting and abrupt general decline remains. Still, with nothing now to fear, Mom has resolved to resume exercising on the stationary bicycle and walking to the mailbox and back. Get well cards arriving by U.S. mail all look forward to her quick and total recovery. And her name is being uttered in many a fervent prayer.