I’ve been home from a nine-day stay in the hospital for a couple of weeks. But it feels as though I was gone for much longer.
It’s not that the house is dusty or that the laundry piled up; we have tremendously helpful friends who eased the burden of chores. It is more that I feel that I am interposing myself into new routines that Jay and Andrew developed without me. They are edgy around me, treating me like new hired help. Will I make them set the table with spoons? Do they need to break out the cloth napkins? My first dinner home was downright uncomfortable. Conversation stalled, and I asked too many questions about topics that had become outdated in my absence. Jay and I bickered over trivialities, rather than confront what felt like a moat between us. In the middle of this bad show, Andrew spontaneously announced, “I take daddy’s side, no matter what.” I felt angry at them both, ashamed at being angry, and utterly alone.
The tension has eased since that awful night. But still, my guilt at having left them for the hospital drags at me. I’m on new medication which slows my brain and my body, adding to my sense of irrelevance. Because I continue to have episodes of blindness every day, I can’t be alone in our house—with its two flights of steep stairs. We have had to prevail on friends to be with me when Jay cannot, so that I don’t tumble down the stairs or hit my head on a counter. Perhaps Jay and Andrew sense my trepidation, perhaps they have their own. Perhaps they feel as I do, that I have stepped out of my role as an adult. Like Andrew, I am now someone who needs care and monitoring. After nearly six years of escalating chronic illness, I continue to feel less competent and less autonomous. But I try not to press Jay or Andrew to talk about their feelings. Partly, I want to respect their boundaries and not force them to emote on my cue about their experiences during my hospitalization. But I’m also afraid of what they’ll tell me. They keep their distance.
One afternoon not long after I came home, Jay dropped Andrew off at a play date, crawled into bed next to me, and fell quickly and deeply into sleep. I saw this as a good sign, another example of them letting down their guards—albeit carefully, but down nonetheless. I was gone for nine days. We can’t return to “normal life” as instantly as I’d like. Andrew was having tantrums almost every day after school. He’d throw fits if I wouldn’t play with him, if Jay asked him to wash his hands, if we told him to put socks on. His behavior at school and at friends’ houses has been impeccable—according to all reports. I optimistically chose to view his rage as a sign that he was lowering his burden down. I told myself that the constant squalls were an indication—though a maddeningly inverted one—that our son feels safe enough to be angry and to sob. He felt obligated to be a “good boy” when I was sequestered away in a darkened hospital room. Now he could be how he felt.
Jay, awake or asleep, was haggard and pale. He has been holding our domestic world together with the emotional equivalent of duct tape and paper clips. He has been working, solo parenting, caring for me, sending e-mails to distant doctors, and fielding calls from family and friends who want to know how I’m doing. Somehow, he packed Andrew’s school lunch and then showed up at the hospital to hear the doctor tell us the two theories for my new neurological problems—either my neurosarcoidosis had become active again and was now inflaming my optic nerve; or scar tissue from my previous neurosarcoidosis was now causing seizures. Jay listened, asked intelligible follow-up questions, called the insurance company to see if we could arrange for home health care aides, and then went off to his job.
I was pleased that Jay ceded enough control to allow himself these minutes of sleep. I stayed quietly next to him for twenty minutes, watching him. His lips were chapped and white. He looked almost starved of oxygen. But, at least in sleep, the guarded lines of his face eased a little. With his eyes closed, he seemed softer. I knew that sleep had claimed him when he began twitching. His eyelids fluttered back and forth, his fingers jerked in my hand. Try as I might, I couldn’t fall asleep next to him. Instead, I pictured the electric current coursing through my husband’s body. Neurons fired in his brain, sending signals that traveled like telegraph dots and dashes down the wire. They commanded his heart to beat, his lungs to fill and empty, his fingers to spasm. Maybe it’s because of my new problems with my own body’s conduction system, but I was almost repelled by reminders of the current flowing beneath Jay’s skin. We are living beings, made of blood and mucus, bones and water. But at that moment next to him, it felt like we are actually more machine than flesh—like robots or computers animated by electricity.
As if on cue, my own internal conduction system showed its faults. Without warning, I was lost in my body electric. Lightning forked and crackled in my left peripheral vision. My heart hammered as if it was also caught in this electrical storm. I tried to catch my breath, but it was as if I had no capacity for breathing, that I was indeed a machine playing with human parts—and failing. The lightning widened and thickened, taking up more and more of my vision. It no longer merely sparked on the fringes of my sight, but expanded from a branch of lightning to a massive strobe light. The light consumed the objects my eyes were trying to see. The light was brutally white. This is the white of teeth and claws, of electricity and roaring waters, of avalanche. I always thought that blindness would mean living in darkness. Instead, I was made sightless by this devouring light. I blinked to no avail. Jay was gone; the blue-gray bed spread was gone; the navy flannel sheets were gone. I could not see my own hands or the table next to the bed where I keep rocks from a New Zealand beach and coral from Palau. I could see Andrew’s drawings tacked up on the wall, the broad pine planks of the floor, the huge semi-circular window that filters the sunlight and the view of snowy hills through a bamboo shade. I panicked in my blindness. I thought I would never be able to see again, and that somehow, I had never really had vision. The thirty or forty-five seconds of the episode stretched on like hours. Had I only imagined the world of color and texture? Was this terrifying terrain of white the true reality? Or was I dying, moving towards and then into “the light” that is supposed to come with death? If so, why was the light so terrifying and so debilitating?
I don’t know if I tried to call out to Jay. When my vision returned, all at once, with a slamming force that knocked into me and again left me breathless, he was still sleeping next to me. I felt as though I had done battle, but whatever I confronted did not bring harm to my husband. He had moved into deeper and calmer sleep. I watched his chest rise and fall as I tried to catch my breath. Sweat—cold and sour—poured down my face. Now that the visible world was returned to me, I found it physically overwhelming to take it in. The colors that were lost to me were now ultra-saturated, as if someone had tinkered with them. I wanted to rejoice in my sight, but I could not find my bearings. I still couldn’t breathe. My mouth was dry and sandy. Also, the vision in my left eye was off-kilter. I saw double out of this eye. I looked back at Jay, only to see two of him napping side-by-side next to me. I blinked rapidly to try to restore the normal world, but the double vision remained.
In a few seconds I stopped caring about whether I saw two or four Jays because pain poured into my head just as quickly as the whiteness had taken over my eyes. I have been dealing with pain like this since 2007, when a case of aseptic meningitis announced the arrival of sarcoidosis in my nervous system. The disease had hop-scotched from my lungs to my liver to my heart to my joints since it first appeared in 2004, and I had dealt with frightening consequences of its presence—such as cardiac rhythm abnormalities that at first prompted my doctors to talk about implanting a defibrillator (luckily, I was able to avoid this extreme treatment because massive doses of prednisone reduced the effects of the disease in my heart), and joint pain so intense I couldn’t hold a pen. But none of this came even close to the shit storm the disease unleashed in my nervous system. The granulomae—or microscopic balls of white blood cells that are sarcoidosis’ calling card—clung to the cranial nerves that emerge from my brain stem and garbled the messages that sped down these internal wires. In 2007, it was Cranial Nerve VIII—or the Vestibulocochlear nerve, which carries the brain’s impulses for balance and equilibrium—that was compromised. Because of this, I lived in a state of constant vertigo. It was as though my brain was sending desperate telegraphs that I had left solid land and was now living aboard a small ship in stormy seas. Just as my heart had launched into confused arrhythmias because its accustomed conduction paths were impeded by sarcoidosis, now my internal sense of balance had gone haywire.
For a terrible few months, I had trouble walking from my bed to the bathroom, and I even broke a rib when I fell over in response to a surge in the sea invisible to all but my confused nerve. Along with the sense of whirling that made it impossible for me to drive, read, and sometimes stand, came a pain in my head that was so intense that I hesitate to call it a “headache”—because it was so unlike any headache , including migraines, I had ever before experienced. No doctor has ever satisfactorily explained to me why this pain, which bore into the same two spots behind my left eye and in my left temple and which sometimes was so violent I would vomit, was part and parcel of the neurosarcoidosis. “We know so little about the disease; we know so little about the brain” was a frequent response I’d get to my questions about why I felt like someone was driving tacks into the space behind my eyes.
Because of the nearly constant pain and vertigo, I started a treatment regimen that included chemotherapy (specifically a drug called Cytoxan) every-other week, higher doses of prednisone, Thalidomide, and Remicade (an immune-suppressant developed to treat rheumatoid arthritis). Extreme circumstances called for extreme measures, I believed. I was afraid I would never be able to rise from my bed, that I would miss my son’s entire childhood, that I would kill myself because of the never-ending pain and the constantly tilting world my confused conduction system thought I inhabited. A year of chemo every other week was awful in its own right. But it seemed to chip away at the pain and the vertigo. I had days of relief, and started to rebuild my life during the weeks I didn’t get chemo.
Who knows what triggered this latest relapse? Was it because, as my doctors recommended,On I had recently cut back on both the dose and the frequency of the chemo? Was it because I had two major injuries—a broken foot and a torn ankle ligament—that launched my body’s inflammatory response, and what began in my ankle spread to the wiring in my head? Whatever the reason, I was again struck down by the disease. This time, the familiar vertigo and pain had a more terrifying companion—the blind spells. I’ve had between two and five of these every day. I can detect no pattern to these frightening “white outs.” The only constant is that after each episode, the head pain intensifies, almost as though it is clamoring for attention. With the advice of my sarcoidosis specialist, my local doctor administered an IV dose of 1,000 mg. of prednisone. It had no effect (well, except to make me very jittery and very hungry). When I could no longer control the pain at home with my collection of heavy-hitting pain killers, I had to check myself into the hospital, where I was hooked up to a morphine pump, given more prednisone, and started on an anti-seizure drug called Keppra—in case my blind spells were actually seizures and also because the drug has helped control neurological pain in other sarcoidosis patients.
Since my stay in the hospital, we have learned that my blind spells are most likely not seizures caused by scar tissue from a previous neurosarcoidosis episode impeding the smooth path of my cranial nerves. Rather, this frightening new manifestation is probably the result of yet another flare-up of active neurosarcoidosis. However, this time, the disease has attacked not only its familiar target of Cranial Nerve VIII but has expanded its colonization of my internal wiring to muddle the functioning of my optic nerve (Cranial Nerve II), whose job is to transmit visual information to the brain. Receiving the news that my neurosarcoidosis had re-started itself like some machine invested with demonic powers (think Hal in 2001) was oddly somewhat comforting. If it were seizures causing my blindness, there was little my doctors or I could do to make them stop. As far as I knew, there was no remedy for scar tissue. But active sarcoidosis can be fought. There was no path to follow except forward. I had two men—my husband and my son—waiting and needing me to be better.
Fighting this disease is not a simple proposition. Sarcoidosis is the proverbial “ghost in the machine.” As I have written before, even finding sarcoidosis is not straight-forward. It will appear in an MRI one day; the next day, the scan will show nothing out of the ordinary. When sarcoidosis has taken hold in the heart or the brain, getting the “gold standard” of diagnosis—the biopsy—is virtually impossible. So doctors follow a process of elimination. After ruling out other diseases that could cause the problem, only then do they arrive at sarcoidosis as the likely culprit. Once this is settled, there’s the question of how to treat it. I have chosen to believe (and have selected physicians accordingly) that sarcoidosis is an auto-immune disease, that it is caused by my own body’s defense mechanism gone awry. Therefore, most treatments involve inhibiting my immune system in some way. Remicade helped my joint pain, but was clearly doing little to impede the neurological progress of the disease. On the other hand, the ass-walloping regimen of Cytoxan every-other week had seemed to keep the neurosarcoidosis in check. So I would go back to getting it on that schedule. Prednisone didn’t seem to be controlling the neurological side of things any better than the Remicade, and after the insane doses I’d gotten intravenously, my body simply couldn’t take any more corticosteroid bombs for a while. But a minimum dose of between ten and twenty milligrams a day seemed to control the cardiac sarcoidosis. So I’d have to continue to put up with prednisone and all its unpleasant side effects. In addition, I would once more take a daily dose of Thalidomide. It had seemed to help my 2007 flare-up relatively quickly.
Finally, after much consultation, my sarcoidosis specialist and my local doctor decided to add a new potion to the mix. The specialist had just finished a small clinical trial (and all clinical trials involved with neurosarcoidosis are small; I’ve never seen one that enrolls more than ten patients) testing the efficacy of Rituxin in fighting neurosarcoidosis. Rituxin was first used to treat lymphoma, but recently has shown promise for auto-immune diseases, particularly rheumatoid arthritis. As best as I can understand, Rituxin suppresses part of the B-cells in the immune system. I didn’t bother to conduct much research. Much like in 2007 and 2008 when I was desperate for anything to improve my health and had thus started getting Cytoxan, I agreed to the Rituxin infusions without any hesitation. I was afraid of losing my sight, of living permanently in the world of terrible whiteness.
I like plans. I don’t know if the cocktail of pills and infusions my doctors have concocted for me will work, but I cling to the possibility that they will. For the first few days of my recent hospitalization, when I counted every one of the ten minutes between each time I could push the button on my morphine pump to administer a fresh 10 milligrams the , I lived only with pain and fear. I oscillated between the awful blankness of blindness and the equally awful darkness of pain. I didn’t hope. I didn’t plan. I didn’t worry about Andrew or appreciate Jay. The pain, for whatever reason, eased enough for me to think about coming home. But it wasn’t until we had devised a new treatment plan that I found the strength to think about more than the moment in front of me.
I think I am feeling a little better. But I don’t trust my body anymore. Too often, my circuits have gone haywire—without warning, without even a minute’s notice. I have no faith that I won’t be flat on my back in the hospital again, or that the flashes of temporary blindness won’t swell and devour my vision altogether. But at least I am back in a fighting mood; I refuse to cede another micron of my brain’s nerves or my heart’s electrical pathways or my bones’ network of calcium channels to this mercurial disease. But when I am lost in the shocking blankness of blindness or when I have lost my breath to the pain, I cannot help but feel that I am broken beyond repair. It doesn’t help that my daily drugs slow my thoughts and thicken my tongue, or that I am more dependent on my family and friends than ever before. It makes me feel like I am regressing. Thankfully, I seem to dwell in despair a little less each day. Perhaps I am simply adjusting to new limitations—not being able to be alone in my own home, not being able to drive, not being able to go for a simple walk around the block. Or perhaps I am finding hidden wells of strength and hope I didn’t know existed.
Ever since that afternoon when I watched Jay sleep next to me, when I watched the electricity flowing beneath his flesh and then got lost in my own body’s damaged conduction, I can’t quite shake the weird feeling that we are more machine than mankind. Before sarcoidosis wove its way into the threads of my heart’s pathways, I hadn’t ever worried that we are (to steal from Walt Whitman) a “body electric.” But back then, before I had ever heard of sarcoidosis, I certainly had treated my fragile self like a machine. I expected my physical self to perform without question and without pause. Hike twenty miles, ride my bike a hundred, stay up all night working, fast for two days because I wanted to lose weight, drink wine until the room spun. All that functioning without any sense of the complexity of the systems that made it possible. It was like how I use this computer—I turn it on and expect it to work without any knowledge of what makes its working possible. I confront my ignorance and its complexity only when it malfunctions. So, too, I suppose, with the miracle of myself. It is only when my body’s pathways became blocked that I lingered to marvel at the thought of impulses winging down cables within me.
Walt Whitman’s poem, “I Sing The Body Electric,” is (among other things) an ode to the physical self. He records in exquisite detail the internal and external wonders of the flesh.
He goes on down the body.
The lung-sponges, the stomach-sac, the bowels sweet and clean,
The exquisite realization of health
Jay and Andrew have eased me back into their lives. Last night, they gave me three cheers for making dinner. There is no more taking sides across the table. When I want to stop fighting, I must remember them as they were last night, glorious and bright. I must remember Whitman’s poem.
I SING the Body electric;