My Grandmother’s Funeral, Or, Isolation and Chronic Illness

Nearly twenty years after my paternal grandmother’s funeral, I still feel deep sadness when I remember that day. As I stood in front of the room reading a poem I had written to commemorate her life I realized that the only people in attendance were her immediate family and two women who had lived next door to my grandparents for thirty years. Two illnesses—alcoholism and dementia—had so isolated my grandmother that by the time of her death almost no one remembered her well enough to attend the service. This despite the fact that I have in my possession many photos showing a woman who in her youth gramyoungwas quite beautiful and whose life was full of parties and other social connections. When she talked to me about her youth, her eyes lit up and she often broke into gales of laughter as she described the boys she dated, the pranks she played, and the people she knew. Once when I was telling her that my friend’s parents had a car with bucket seats (a phrase I had just learned) she giggled and told me that when she was in college she rode to school on a “real” bucket seat. Seems a young man she knew had a car in which only the driver’s seat was permanent. He filled the rest of the car with overturned buckets on which as many as ten people rode (for a few cents per week) to and from school. From what she told me, I gather that those rides were full of uproarious laughter and the kind of camaraderie that develops among people who share common experiences on a daily basis.

And my grandmother’s rich social life did not end after college. My grandfather once told me that she was always the beautiful and stylish life of the party. I have one picture of her striking a sexy pose against a fireplace and another of gramsexyposeher—clearly at a party—hamming it up for the camera. I know that she was active in women’s groups, that she had close friendships with many of the women in her neighborhood, and that she belonged to a homemakers’ club, which once honored her with a table setting award. My mother tells me that my grandmother always treated her with kindness even though there was much familial scandal because I was conceived “out of wedlock.” According to my mother, the Thanksgiving before my December birth she was grateful when my grandmother insisted on saving her the trouble of cooking and took to my parents’ apartment a fully cooked, ready to serve holiday meal. My grandmother was known among her friends and family as an extremely talented seamstress. She made the vast majority her own clothes and she also made most of the clothing I wore from the time I was born until my parents separated when I was a child. By the time of her death, though, most of her connections to other people had been lost, first to the isolation that allowed her to hide her uncontrollable drinking from friends, and second to the years of dementia that in her later life robbed her of even the most basic ability to connect and communicate with others.

Ever since MS forced me into early retirement from a career that sustained me both intellectually and socially, made it impossible for me to drive, and shortened my days with extreme fatigue and other symptoms that make it difficult for me to socialize as much as I would like, the isolation my grandmother faced in the latter part of her life has loomed large in my consciousness. As the school year begins, I envy the people I know whose social lives pick up pace as they head back to classrooms full of students, to the constant meetings that are so much a part of academic life, and to interactions with national and international colleagues at conferences and other professional gatherings. Though I am keenly aware of my inability to do the work I once did, I want nothing more than to be swooped into the hectic pace of the school year. I want to plan courses and write syllabi. I want to be immersed in university politics. I want to feel the pressure of deadlines. Even in the second year of my absence from daily work at the university, I grieve both the pace and the sociality of that life.

The isolation of my new life extends to my relationship with Deb. She and I met at work and for 17 years our offices were never any more than a few feet away from each other. We were careful to separate ourselves at meetings and to maintain individual professional identities, but we spent much of our time at home talking about teaching, the professional service in which we were involved, and other issues related to our daily work. What’s more, we co-edited books and co-wrote articles and a book, so a significant part of our intimate relationship revolved around our professional interactions and collaborations; we both deeply valued and found a kind of passionate intimacy in that constant connection. Recently, when we discussed the impact MS has had on our lives, Deb pointed out that though I have the disease and I am the person who must deal with most of its physical and emotional cruelties, MS has happened to both of us. Referring to the fact that we no longer have a common work life, Deb said, “I hate to think about what this awful disease has taken from us. I resent it all of the time. I miss you at work every day.” During that conversation we discussed the fact that we now depend on other people to meet many of the daily social needs we once met for each other, a discussion that left me in tears over the loss.

Though I am not usually inclined to think much about my own death and/or funeral, I must admit that my memory of the vast sea of empty chairs I saw at my grandmother’s funeral reminds me always how easily and imperceptibly chronic illness can isolate us. As we lose our ability to work and to make our own way in the world, our lives separate more and more from those of the people around us, the ones with whom we once interacted naturally and frequently. And that social isolation is deepened when it’s necessary to explain to people we meet that we once lived very different lives than those we live now. When the newspaper in her city published a beautiful story about my mother-in-law’s early teaching career at a local private girls’ school, she asked Deb to please be sure to share the barb.kidsstory with our grandchildren (her great grandchildren) because she wanted them to know that there was a time when she was not the elderly, dependent woman they have always known her to be. As my life changes from one full of motion and natural social connections to one full of solitude I feel some trepidation when I remember realizing how isolated my grandmother was at the end of her life. In much the same way, I feel deep sympathy for my mother-in-law who hopes that her great grandchildren will know that before she became isolated by her aging body she led an interesting life and made important contributions to the world.

Mademoiselle V, Depression, and Multiple Sclerosis

It hit like a body blow – fast, hard, and unexpected. In the course of a day, I went from feeling unwell but reasonably happy to deeply depressed. I heard myself begin to apologize for every bit of space I inhabited, for every need, for every way that my life touched the lives of those around me. For the past few weeks I have awakened morning after morning sad, lonely, and insecure. It is as if all the years I spent developing a place for myself in the world and building loving, egalitarian relationships have suddenly melted away and I have reverted to the damaged child I was when I emerged from my difficult childhood. Even as the weight of my life rests on my shoulders, the cause of my sudden, desperate sadness is clear to me: after months of trying different treatments, my breathing problems have persisted, and the pain and fatigue have finally worn me down. For the first time in the months of struggle against this symptom I lost track of the loving care I consistently receive from my family, friends, and doctor and fell into the narcissistic abyss of self-loathing.

Of course, I am not the first person with MS to become deeply depressed. In the 19th century, Jean-Martin Charcot, known as The Father of Neurology, was the first physician to provide a detailed clinical description of the disease we now call MS. He observed patients over their lifetimes and then studied them post-mortem, thus confirming that the source of their symptoms was MS scarring in the brain and spinal cord. His lectures on MS describe an array of symptoms he charcotsuggested physicians use to identify MS in their patients. As early as 1870, when referring to a patient he called Mademoiselle V, Charcot identified severe depression as one symptom of her disease. Charcot’s connection of Mademoiselle V’s depression to her disease was supported by the fact that she also suffered from a host of symptoms we now know are common to MS—emotional lability (inexplicable and uncontrollable fits of laughter or tears), double vision, vertigo, paralysis, and spasticity so extreme that she could not stand without the assistance of two aides.

Over a century later, I think of Mademoiselle V and her role in Charcot’s lectures, her pained body moving in ways she could not understand. What, I wonder, was she thinking? Her intellect was probably unaffected by the disease, so she was aware of her body’s slow deterioration and I can’t help but imagine that she felt misery and loneliness when that deterioration intruded on her life day after day. The illustration that appears on the cover of the collection of Charcot’s lectures that contains Mademoiselle V’s story portrays a naked woman, her arm throwncharcotookcover over her head in what appears to be an uncontrollable spasm, and a contorted face full of pain and fear. What Mademoiselle V could not have known is that by the 21st century MS would be considered the most common neurological disease and that according to the National Multiple Sclerosis Society it affects 2.1 million people worldwide. She could not have known that there would be a host of organizations whose work is to support patients, to help fund research, and to provide information to MS sufferers and their caregivers. More than that, she could not have known that one day the Internet would provide people with MS companionship and that we could communicate with others whose experiences are similar to our own and who can sustain us as we struggle to understand the debilitating changes our bodies impose upon us.

As Mademoiselle V stood before those men, her body and emotions out of her control, she also could not have known that even in the 21st century the symptoms she experienced would still be significant impediments to the happiness and comfort of people with MS and that even at this late date there would be no cure for the disease. The paralysis, spasticity, difficulties with speech, vertigo, emotional lability, and depression that were so much a part of her life would still plague people with the disease. While contemporary sufferers certainly have medications that help control MS symptoms, their effectiveness is sometimes hit and miss and more often than not a drug that relieves a symptom like spasticity exacerbates others—like muscle weakness and fatigue. I am deeply moved when I think of Mademoiselle V; I wish I could reach back to her, offer her support and camaraderie, and tell her that her suffering changed my life, that she not only helped give my disease a name but also helped me know that my own depression has a reason, that it makes sense and can be explained. I would be sorry that I would have to tell her that even after all this time MS cannot be cured and that in many cases its progression cannot be halted.

This brings me back to my own recent struggles with depression. Approximately 50% of people with MS will in their lifetimes experience some form of depression, and these depressive episodes can range from short-lived to chronic. There seem to be three main causes of MS depression: stressors like the progression of disability, loss of career and livelihood, changes in familial and/or romantic situations, etc.; demyelination of nerves in the brain that control emotions and emotional expression; and medications used to control symptoms or to help decrease the number of relapses in patients suffering from the relapsing-remitting form of the disease. Of course, many more circumstances faced by people with MS can cause or contribute to depressive symptoms, but these are considered the three most common.

As I say above, depression seems an obvious and even rational response to the daily experience of progressive MS. In my case, the severe spasms in my bronchial tubes and the girdling sensation I described in my last post distract me from most of the activities that are important to me. I awake each day determined to write a blog post, to participate in my online support groups, to answer e-mails, or to engage in the other activities that bring me joy and comfort these days. But day after day I find myself distracted and fatigued by the struggle to breathe against the intense spasms. More often than not, I am quickly reduced to a quiet sadness. Lately, as I have read about Mademoiselle V and pictured her there alone, sad, and in pain before those healthy men I want nothing more than to sit with her, to offer her some companionship, to share with her a song called “I am Willing” (performed by MUSE, Cincinnati’s Women’s Choir)   that brings me solace when I feel most alone, and to let her know that though Charcot is credited with naming and describing MS, her suffering contributed in ways she could not have known. I would tell her that it brings me real comfort to know that my own depression has an explanation that can be traced back to the earliest acknowledgement that my disease exists and that I thank her for that.

Waiting for Bloomers, Or, From Corsets to the MS Hug

Though our political and social attitudes could not have been more different, my paternal grandfather and I shared an intense emotional connection. During the last years of his life we talked on the phone almost every evening and I visited him several times a year. Most often, our conversations focused on the minutiae of daily life, but not infrequently my grandfather lamented the physical distance between us and wished aloud that my father, my sister, and I lived closer to him. At those moments, he shared memories of his childhood, which was populated by extended family living within blocks of one another in downtown St. Louis. During one of our visits, we talked as he leafed through a box of family greatgreatgrandmother.3snapshots. I looked casually at the pictures he passed over to me; eventually, I commented that I had always been puzzled by the fact that I am heavy while everyone else in my father’s family is small. His response was to produce several pictures of his grandmother (Mary Blackburn). Every one of those pictures shows a rotund woman wedged into a corseted dress, her ribs bound tight while her breasts stand at attention above and her belly expands below. In one of those pictures she sits on a bench next to her husband; he is dressed casually (for the time) and appears relaxed and comfortable next to his rigid, restrictively clad wife.

At the end of that visit, my grandfather handed me the photo so that I might keep it as a reminder that my body has a “history” in our family. I have since that time kept the picture of my great great grandparents framed and displayed where I see it often. Lately, I have found myself thinking more and more about the woman I see when I look at Mary—the one whose body seems to resist both the form and fabric of her dress, the one who in my imagination struggled always against clothing designed to cinch her middle and reshape her recalcitrant body. Though I long ago gave up uncomfortable clothing whose tightness promised to “slim” my belly and hips or create the illusion of a small waist, the recent progression of my MS symptoms has reminded me of the discomfort (and even pain) that restrictive clothing imposes on women’s bodies. By the time corsetdeformitiesMary worked herself into that dress, the style of its bodice was all that was left of a long history of women’s attempts reshape their bodies using corsets to reduce their waist size and create the desired “hourglass figure.” As a matter of fact, some women went so far as to practice “tight-lacing,” which involved pulling the corset so tight that it actually modified the body, displacing organs and in some cases making the torso so weak that a woman could not stand erect without the support of her corset.

I have for the past couple of months felt a kinship with Mary Blackburn and her corseted predecessors. Slowly but perceptively, my ribs have begun to tighten the way corsets once tightened their torsos. My breathing has become more and more labored, I work to take in enough breath to fill my lungs, and my diaphragm resists my efforts to will it into motion. Like the women whose ability to stand came to depend on their corsets, my midsection has weakened and I am no longer able to stand erect for more than a minute or so. The tightness in my ribs is related to a not uncommon symptom of MS that its sufferers often call “the Hug” or “girdle banding.” This symptom is thought to occur when lesions in the thoracic portion of the spine cause the intercostal muscles between the ribs to spasm. As is true with most MS symptoms, these spasms manifest themselves differently depending on the person experiencing them. In my case, I feel a kind of “banding” in my back and intermittent pain under my shoulder blades, but the real pain is concentrated in my rib cage. When the pain started, I tried to ignore it because I was certain that it was MS related and that it surely had to do with the general progression of symptoms I have experienced since my diagnosis. As the pain intensified, though, I began to have more and more trouble breathing. I could take shallow breaths, but deep breaths were impossible most of the time. Eventually, I begged my neurologist for some kind of relief.

Always careful to avoid the pitfall of attributing all of a patient’s symptoms to MS, thus leaving other illnesses undiagnosed, my neurologist admitted me to the hospital and did a battery of tests to rule out other causes for the problems I was experiencing. Not surprisingly, the tests showed that aside from having a progressive form of MS, I am quite healthy. According to my neurologist, the spasms in my rib cage, like so many of my MS symptoms, can be attributed to spinal cord lesions that have “aged.” My lay person’s understanding of the situation is that in the earlier stages of the disease the body develops “work arounds” to compensate for nerve damage caused by MS lesions. As the disease progresses, the body is less and less able to compensate for the lesions’ damage and there is a steady progression of symptoms.

Over the years since my diagnosis I have come to a real understanding of the old adage “Hindsight is 20/20.” As is common with people who are diagnosed after they have progressed from Relapsing Remitting MS to Secondary Progressive MS, I can often look into my past and identify a history of particular symptoms worsening and then dissipating and sometimes even disappearing entirely. The spasms and tightness in my rib cage that I am presently experiencing have been intermittent visitors in my life for decades. I have no idea why, but I can actually pinpoint the first time I experienced them; I was an undergraduate at Salisbury University on the Eastern Shore of Maryland. At the time, a wildfowl art museum was housed in one of SU’s campus buildings. Though I had no particular interest in wildfowl art, one day I decided that, like seeing The World’s Largest Ball of Twine, visiting that museum was one of those quirky experiences I would be foolish to pass up. As I walked through the exhibit, I became aware of a tightness that seemed to move in waves across my rib cage. After chastising myself for giving a few moments’ worry to the idea that I might be having a heart attack, I chalked the feeling up to stress over impending exams and took it as a clear sign that I had seen enough of the museum and should return to my studies. Over the years, that tightness returned from time to time, but as it had that day in the museum, it eventually subsided so I continued to attributed it to stress.

As I suspect was true for women who wore tightly laced corsets day after day, I am not able to identify the first time I experienced the breathlessness and weakening in my torso. I know that climbing stairs and other forms of physical exertion winded me long before they seemed to affect others around me, but that experience is as likely to be related to the body type that Mary and I share as it is to be caused by MS. Until recently, it never dawned on me that breathlessness and weakness might actually have a physiological explanation; as I am sure was true for women bound by their corsets and for Mary stitched into her dress, I have always embraced the idea that breathlessness and weakness were due to some fault in my character that kept me from exercising hard enough or moving more gracefully.

I can only imagine how Mary Blackburn felt in her dress or what women felt when they wore corsets, or more dramatically, modified their bodies through the practice of tight-lacing. The discomfort of corsets and the deformities created when a woman practiced tight lacing, though, seem to me not unlike the MS symptoms I am currently experiencing. The shortness of breath, the tightness and pain in my torso, the weakness in my midsection—these constrain me in much the same way that corsets constrained the women who wore them. In their cases, their marriageability (and thus their livelihoods) depended upon their ability to make their bodies look and behave in ways that were at the time considered desirable; their lack of strength, breathlessness, and weakness were all considered characteristics of upper class femininity. Though more than a century separates me from women who donned corsets in order to modify their bodies’ form and function, I have come to understand something about the sacrifices they felt forced to make. The constant constriction of my ribs, my difficulty breathing, and my increasing difficulty standing erect are constant distractions from the joys of daily life and dramatically decrease the number of functional hours I have each day.

MRSA, Baclofen Pumps, and Mormon Crickets

Over the years, Deb and I have many times traveled to New Mexico to visit her mother; more often than not, we extend those visits into vacation “road trips” through the western United States. As we drive, we listen to audiobooks or talk about science and medicine (about which we have many theories and scant knowledge), politics (about which we are passionate and convinced that we have all the best ideas), and about the price of gasoline (a topic of particular interest to Deb). Several years ago, one of those road trips took us to Idaho to visit an old friend of mine. As we always try to do, we took as many back roads as possible, and at a certain point as we drove along one of those roads, we fell into a comfortable silence and simply enjoyed the extraordinary landscape that surrounded us. On one side were breathtaking mountains and on the other was a lush green valley dotted with sprawling ranches whose back pastures were bordered by more mountains. As I often do when we travel, I lost myself in fantasies of life in the homes I saw. What, I wondered, would it be like to wake each morning and see mountains outside your front and back windows? Where do the people living in those houses work? Where do they shop? What animals and/or vegetation do they raise on those ranches?

Suddenly, though, I was shaken from my daydreams by a scene right out of a B-movie. The mountain to our left was in motion; a huge swarm of red brown bugs MormonCricket2marched slowly down its front and made its way toward the highway. The creatures flowed into the road where many had already met their demise; the road was so slick with brown ooze that Deb wondered aloud whether we might slide into a ditch if we attempted to drive over it. Even with what was obviously an extraordinary loss of their numbers to the local motorists who ran blithely over them, the army of bugs seemed as massive on the other side of the road as it did on the mountain itself, and I could see that they were headed directly for a home.

As soon as we arrived at my friend’s house, we described the scene in some depth, both of us certain that she and her family would be as astonished as we had been. We were, however, surprised that their response was one of bored familiarity as they announced, “Oh, those are the Mormon crickets.” Since that summer, my tendency to become intrigued by trivialities has motivated me to read quite a bit about Mormon crickets. I have learned that they always travel in swarms like the one we saw that day and that they devour all of the vegetation in their path as they move across the land. Of course, I have no idea what people who are familiar with these bugs experience as they see them marching toward their homes, but I imagine myself scurrying about in search of ways to eradicate the pests, or at the very least, create an impenetrable barrier between them and my front door.

At the risk of sounding melodramatic, I have begun to believe that Mormon crickets are an apt metaphor for my experiences over the past few months as I have navigated a number of “medical life changes.” I last wrote for this blog in September and at that time the surgery to implant my Intrathecal Baclofen baclofenpump.betterpump was scheduled for late October. The day of my surgery I quelled my nervousness about “going under the knife” and presented myself in the same-day surgery department at a local hospital. After a flurry of activity that included the insertion of an IV, a blood draw for “typing” should I need a transfusion, and a number of other preparations, one of the surgeons who would be assisting with the procedure appeared at my bedside, lifted my gown to reveal my naked belly, and looked askance at a sore that festered there. Before he could even mark my body with his Sharpie, he left the room to phone the primary surgeon. Not long after that, she arrived at my bedside, examined the sore, and delivered the disappointing news that the surgery would have to be postponed.

That was the moment at which I began to learn about Methicillin-resistant Staphylococcus aureus (MRSA). I had, of course, heard of MRSA, but I thought of it as an extraordinarily rare infection that only afflicts people who have recently been hospitalized; I never once considered that I might acquire a MRSA infection, since I had not been hospitalized in years. I would learn, however, that MRSA is now more common than most people realize; while most cases of MRSA are still Hospital-Acquired (HA-MRSA), a growing percentage of cases fall into the category of Community-Acquired (CA-MRSA). My general practitioner said that the number of MRSA cases she treats in a year has increased manifold since she began practicing. The general surgeon who lanced the sores and collaborated with my general practitioner on treatment made a similar observation. In my case, the initial goal was to halt the MRSA outbreaks long enough to allow for the pump surgery and the post-surgical recovery period. An extended course of Clindamycin and Bactrim beat the MRSA “crickets” from my door long enough to achieve that goal, and by December, the infection was controlled enough to allow the surgery to go forward. After some discussion with the surgeon about where to locate the pump in order to avoid the sites where most of my MRSA outbreaks occur, I was cleared for a surgery that was—thankfully—uneventful.

The morning after the surgery (as soon as the anesthesia had worn off), I became aware of an excruciating pain in my left leg. I had heard from online friends who have had the surgery that they experienced very little pain afterward, so I began to wonder why the pain in my leg did not subside. To make a long story short, it seems that the catheter feeding baclofen from the pump into my spine was doing battle with one of my nerves. My understanding of the surgeon’s explanation (refer to the above admission about scant medical knowledge) is that the kind of pain I experienced occurs when the catheter comes to rest on a nerve. In my imagination, the nerve and the catheter are engaged in a battle for a prime position in my spine. Mostly because of my own stubbornness, I’ve not done a particularly good job of beating back these painful “crickets.” One of the common treatments for nerve pain is the drug Lyrica, and though I experienced relief from that medication, I was ultimately unwilling to accept its side effects, which for me included a general grogginess. In the end, I decided that I preferred the minimal relief of Ibuprofen to the grogginess I experienced with the more effective Lyrica.

At this point, the methodical process of calibrating the pump so that it functions at full capacity is underway, and I am in the capable hands of the nurse I have come to call The Goddess of all Things Pump. I am slowly becoming aware of pump’s benefits and less dependent for spasticity relief on oral medications. Not surprisingly, the MRSA has returned and I have begun another extended (6 months!) regimen of combined Clindamycin and Bactrim. The crickets, though, refuse to keep their distance. Perhaps due to the process of adjusting the medication I have developed an inexplicable intermittent shortness of breath. Though my normal breathing is fine, I am unable to take deep breaths without careful concentration and sometimes not even then. The physician who oversees the control of my pump says that he has seen similar situations in the past and lowering my pump dose temporarily has provided some relief. Thus, I assume that this nasty swarm of crickets will at some point be a red brown stain on the road to a fully functioning baclofen pump.

If you are like me, you have since the end of the third paragraph of this post wondered how those nasty little bugs got their odd name. Here’s what Professor Google has taught me: In 1848—the first spring after Brigham Young led the first band of Mormons into what is now Salt Lake City, Utah—the settlement’s crops were threatened with total destruction when a swarm of these bugs (which are not actually crickets, but katydids—a distinction only an entomologist could love) descended upon them and threatened the crops on which they depended for survival. According to the diaries of many of the Mormon settlers, in June of miracleofgullscartoon.good1848 a mass of gulls (which are native to the Salt Lake area) arrived en masse and began eating the crickets. According to the tale, the birds ate, drank water, regurgitated, and kept eating until the bugs were eradicated. Some historians express doubt about the story’s accuracy; nonetheless, the myth has become known as the Miracle of the Gulls and it is an integral part of Utah’s history, and a Seagull Monument memorializing the event stands in Salt Lake City’s Temple Square, and the California gull is Utah’s state bird.

Becoming a Person I Hardly Recognize

I’m intimidated by physicians. It’s not a concern about intellectual equality; I spent my career surrounded by brilliant, highly educated, and talented people whose intellectual prowess attracted rather than intimidated me. It is unrelated to my insecurities about my body. It’s not about the sterility of doctors’ offices and other healthcare facilities. It’s not related to the vulnerability I feel about being ill. It’s not about physicians’ behavior toward me; as a matter of fact, since my MS diagnosis I have had the great good fortune to have excellent doctors who treat me kindly and with respect. Almost immediately I trusted and felt connected to my neurologist – the physician most people with MS see regularly – and these days I even look forward to seeing him. But when I see any physician for the first time I become a person I hardly recognize; I feel agitated, insecure, and deeply concerned about whether I will be “liked.” Before those first appointments I feel certain that the physical difficulties I am having will not be visible and that I will not be believed when I describe them, and I imagine that my symptoms will be labeled psychosomatic or that I will be accused of malingering or melodrama.

My worries about that possibility are not completely unfounded. As a teenager, I experienced an extended bout of partial blindness. At the time, the ophthalmologist and other doctor I saw were sure that my symptoms were psychosomatic or that I was, for some unknown reason, “faking” them—and my mother believed their assessment. The adults in my life went so far as to insist that I wear very large glasses with glass rather than plastic lenses because they believed that the heaviness of those spectacles combined with their unattractiveness would “cure” my desire for “attention.” The humiliation I felt about being accused of faking my blindness inspired me to spend the next several decades avoiding doctors as much as possible. And, for fear of being dismissed as mentally ill, I did not speak about that experience to the few physicians I did see—that is, until I met my current neurologist. I don’t know what question he asked me that prompted my disclosure about the blindness and the doctors’ assumption that it was psychosomatic, but I now realize that my revelation helped him diagnose my MS. For many people, partial blindness like that I experienced when I was a teenager is the earliest symptom of the disease. When he delivered the news that I had MS, the embarrassment I felt about being told that my blindness was imagined was significantly relieved when he added, “Do you remember when you were a teenager and everyone thought you were crazy? That blindness might well have been your first symptom.”

Over the past month, though, I have become keenly aware that recent positive experiences with my neurologist have not fully allayed my fear that physicians will see me as a medical “drama queen” or as a person who “fakes” symptoms to garner attention. Concerned about the high doses of anti-spasticity medication needed to control the MS-related muscle spasms and rigidity in my legs and arms, my neurologist suggested that I might benefit from an Intrathecal Baclofen pump. The pump functions by delivering very small amounts of liquid Baclofen (one of the most commonly prescribed anti-spasticity medications) directly to the spinal cord, thus dramatically decreasing the amount and increasing the efficacy of the medication. I am no medical professional, so my knowledge of these matters is rudimentary at best, but from what I understand, by the time oral Baclofen makes its way through the bloodstream and is otherwise “processed” by the body it is difficult to determine the amount of medication that actually “works” against the symptoms it is meant to treat. What’s more, oral Baclofen and other anti-spasticity medications tend to cause excessive drowsiness and other side effects that interfere with basic daily functioning. I am told that because intrathecal Baclofen is delivered directly to the spinal cord, the dosage is measured in micrograms rather than in milligrams. This significant reduction in the amount of medication needed to treat spasticity, combined with the pump’s direct delivery (which means that the medication need not be processed through the brain), significantly reduces medication-induced fatigue and other side effects.

The process of determining whether the Baclofen pump will work for me and then of having it surgically implanted has required a number of appointments with doctors new to me. The first of these was a physiatrist who met with me once to describe how the pump will function and then again to oversee the pump trial. The first time I saw her she commented that my spasticity seemed under control when she did her examination. My defenses went immediately into overdrive and I asked – probably quite defensively – what she “meant” by her comment. I might even have asked whether she thought that the pump would not be useful for me. My unspoken assumption was that she was expressing her disbelief that I was experiencing severe spasticity. Of course, her response to my question was that she meant that the high dosage of anti-spasticity medication I was taking was working well. She added that the high dosage itself was reason enough to move ahead with the trial because she shared my neurologist’s concerns about the dangers of taking large doses of this medication over an extended period. The day of the pump trial I was instructed to skip my morning dose of anti-spasticity medication. I did as directed, but I was nearly frantic with worry that my spasticity would not be obvious after only one missed dose. I imagined a scenario in which I was told that my spasticity was minimal, that I was exaggerating its intensity, and that I needed to go home, reduce my level of medication, and quit being such a drama queen. What really happened was that when my pretrial spasticity was measured it was classified as a “strong 3” (out of a possible 4) on the Ashworth scale. In other words, my symptoms were acknowledged rather than dismissed.

Because the trial showed that the injection of liquid Baclofen into my spine is extremely effective for relieving my spasticity, the next step was for me to visit the neurosurgeon who would implant the pump and place the catheter that will release the medication. Once again, I was struck by an absolutely inexplicable worry that I would be judged negatively by this physician I had never before met. The night before I met with her I dreamed that she told me to leave her office, to stop wasting time that she could be devoting to patients who really need her, and that I was probably faking MS in the first place. When I arrived for my appointment, the person taking my information asked me if I was still working and as I answered in the negative hot shame filled my body. Though the question was nothing more than a part of the process of gathering demographic information for my records, I was overwhelmed by the fear that the surgeon I was about to see would interpret the fact that I am no longer working as  clear evidence that I am nothing more than a malingerer. During my appointment, I asked the surgeon whether she believed that I should get the pump – by which I really meant that I wondered whether my spasticity was “bad enough” to warrant the pump. Her response was that my neurologist and the physician who had overseen the trial had already determined that I needed the pump and that it would benefit me; the purpose of her examination was merely to discuss the logistics of the surgery itself.

Over the past couple of weeks, I have struggled to find a conclusion to this post. I keep asking myself, “But what does all of this mean? Why write about my ridiculous neuroses? Who will care?” I have tried reading the previous paragraphs time and again, thinking that they would certainly reveal their own meaning. The writing has, however, failed me because its focus on my personal experiences seems to imply that there is something unique about them, that the intimidation I feel around physicians I am meeting for the first time magically appeared on the wings of a traumatic event in my childhood. My suspicion is that this is so far from the truth that it amounts to a lie; I have heard from friends that they share my fears that their physicians will think them melodramatic or otherwise “difficult.” One of the problems with chronic progressive illnesses is that the person who is ill is aware that the severity of specific symptoms is increasing long before that progression is visible to others. Another is that the progression of symptoms is frightening, and it’s not uncommon for the person experiencing it to wonder whether she is somehow responsible for her advancing symptoms. Perhaps she hasn’t exercised hard enough or long enough. Perhaps she hasn’t tried the right supplement or diet or medication or treatment. By the time she enters a physician’s office, she has been bombarded with infotainment “news” stories about people who have “overcome” their diseases, shed their canes and wheelchairs, and are now living “normal” lives.  With all of that ringing in our ears, is it any wonder that our sense of vulnerability might be heightened when we find ourselves in situations that make us acutely aware of our need to be heard and believed?

Dignity and the Disabled Body

As I remember it, my first-grade classroom was a child’s paradise. There was a reading table stacked high with boxes of SRA readers and an assortment of children’s books. A rabbit lived in one corner next to an ant farm and a lizard. A math table was adorned with a colorful abacus and an assortment of other manipulables.  I loved the time I spent at the art table, which offered modeling clay and paint and the most astonishing mosaic tiles. And Mrs. Diaz knew how to let us use our days – a few minutes here and there in instruction and the kind of goal setting children can do – then just enough time at each table to leave us anxious to return the next day. The only thing that marred my early school days was the time I spent away from Mrs. Diaz—in the schoolyard and at the mercy of “Coach,” whose favorite pastime it seemed to me was torturing those children who lacked athletic prowess.

Eventually, my constant failures at running Coach’s laps, doing his pull-ups, and dodging balls in the brutal game he seemed to love so much were more than I could stand. I had seen my friends present Mrs. Diaz with notes excusing them from Phys. Ed. and I had been envious of the time they spent alone with her in the classroom. I knew, though, that my parents could never be convinced to write a note like that, so I set out to write my own. I cannot remember what illness I invented, but whatever it was I hoped it would be dramatic enough to buy me a week in the classroom and out of Coach’s control. When it was finally complete, I knew that my note was an extraordinary document, carefully written and finished off with what I believed to be a perfect forgery of my mother’s signature. I was sure that I had done what any adult would: I had written the note on a piece of my mother’s stationery and sealed it in a matching envelope with Mrs. Diaz’s name carefully penned on the front. My only disappointment was that I could not reveal to my beloved teacher that I was the one who had done such beautiful work.

The next thing I remember is a blissful week during which I spent recess working at tables, feeding and caring for the class animals, and organizing the supply drawer in Mrs. Diaz’s desk. Looking back, I imagine Mrs. Diaz struggling to hide her amusement when she saw that note, but she accepted it without revealing any doubts about its authenticity or concern about the exercise I would miss if I were excused from Phys. Ed. I was a round child, not exactly fat at that point, but not skinny and decidedly NOT athletic. I was the kind of uncoordinated kid who was always the last chosen for sport teams, and my lack of athleticism was a source of constant ridicule from both the adults and the other children in my life. The fact that Mrs. Diaz did not respond to my note by lecturing me about the importance of exercise and weight control was at that time a welcome anomaly to me.

Today, as my MS symptoms progress, I am reminded of the humiliation I felt as an uncoordinated child. In my adult life before MS, I prided myself on my independence and on my ability to make my way in the world with little material or physical assistance. I had outgrown my constant awareness of my body and the space it occupied. I felt independent and even at times somewhat graceful – and I loved that feeling. However, because MS has brought with it a growing dependence and gracelessness, I have lost much of the physical and emotional confidence I spent most of my adulthood working to develop; as a result, I have begun to isolate myself more and more. I am hesitant to attend social events at which I will be forced to navigate my chair through crowds of people I do not know; when I do go out I am inclined to apologize to everyone I see for the “extra” space I occupy.

The humiliation I feel about occupying more space than I did when I was able-bodied is eclipsed only by the humiliation I feel about my inability to “rise above” my disability, to “emerge victorious” over the disease. Before MS began gnawing away at my ability to function “normally” in the world, I was blissfully unaware that people with chronic illnesses are constantly inundated by the message that we should do “battle” with our diseases and spend every ounce of our waning energy resisting the physical and cognitive impairments they visit upon us. Media segments about chronic illness feature stories about disabled heroes who overcome the ravages of their disease to climb mountains, run marathons, or accomplish other extraordinary physical feats.  Celebrity physicians make sweeping claims about how  exercise and strict dietary or pharmaceutical regimens will transform our diseases into “manageable conditions.” What these claims ignore is that most chronic illnesses like MS take varying forms and that exercise, diet, and pharmaceutical regimens are “hit and miss” in terms of their success for any given individual. Nonetheless, media doctors’ overblown and inaccurate claims shape attitudes about the level of control we have over our symptoms, often leaving those of us whose progression continues unabated to wonder what we are “doing wrong.”

It may seem silly to endow one experience with so much significance, but I have thought a lot about Mrs. Diaz lately, about her willingness to accept that note and the child who wrote it. Though she clearly knew that I was perpetrating a deception she respected the fact that I was also expressing an honest need for a reprieve from physical challenges I was unable meet. I’m not yet able to articulate how my experience with Mrs. Diaz relates to my current struggle to make peace with a body that insists upon losing function, but I know it has something to do with dignity, with the quiet way we must come to accept our bodies and ourselves despite the myriad ways they fail us daily.

MS Cognitive Impairment and Fatigue

I have been wondering for quite some time how I can describe what it feels like to live in the grasp of MS induced cognitive impairment and fatigue. Though I pride myself on a good vocabulary, I find that the words available to me seem insufficient for describing these symptoms. I want to say that I feel as if I am stranded in the middle of an ocean with a working radio, but that even if I were able to muster the energy, I would have no access to the words necessary to call for help. I want to say that I feel as if I have not slept for days, as if my body is depleted of energy because in my time stranded in this ocean not a drop of fresh water has passed my lips. I want to deploy the metaphor of sun and salt leaching every ounce of energy from my body, leaving me so limp and confused that I don’t even know how to help myself survive. I want to offer these as descriptions of MS cognitive symptoms and fatigue, but I know that these metaphors reek of the kind of melodrama that makes them seem insincere and overstated.

Is it enough to say that even though this blog has become a lifeline for me, a way of connecting with people in a world that seems to bustle on at a pace that I can no longer maintain, fatigue and cognitive impairment have for the past several weeks kept me from it? I have come to my computer almost every morning, donned my Dragon headset, and attempted to compose. Until today, all I had for my efforts was a collection of unfinished, disconnected paragraphs. Anyone who suffers from MS induced cognitive impairment and fatigue will likely know what happened before they even begin to read the next few sentences. My concentration waned, I was overwhelmed by the simplest cognitive tasks, and much time was lost to events and menial chores that would in my life before progressive MS have been minor distractions in otherwise full and productive days. Each day at about midafternoon, it was clear that another day would pass without a completed post. I cursed my own limitations and told myself that I MUST publish a post the next day.

Of course, I know that no amount of determination or sheer force of will is powerful enough to stand against the paralyzing effect of MS cognitive impairment. Most people with MS will experience some cognitive symptoms as a result of the disease, and for many of us that means slowed thinking, speech and attention deficits, and frequent and intense bouts of crushing fatigue. Some of our friends and loved ones will, out of a generosity of spirit, attempt to normalize our experiences with these symptoms by comparing them to the slowing of cognitive function that often comes with age. Some might even liken MS fatigue to the fatigue they feel at the end of a busy day or week. These are in many ways useful comparisons that allow those who do not suffer from MS to begin to understand the impact of cognitive symptoms in the lives of those of us with the disease. However, MS cognitive impairment and fatigue differ dramatically from those experiences; they are inexplicable, ongoing, and extraordinarily intense.

Because those who suffer from these symptoms sometimes appear healthy in every other way, their cognitive impairment is “invisible” except to the extent that it interferes with their ability to complete tasks in a timely fashion and to avoid mistakes. The result is that many people with MS are accused of laziness and incompetence when cognitive symptoms interfere with their performance on the job or keep them from participating fully in their personal lives. Though I am hesitant to say that my need for a wheelchair is in any way positive, I do believe that my cognitive symptoms are often met with compassion because even people who do not know me well receive visual “proof” of my impairment. As I said in a previous post, strangers have even assumed that my mobility problems indicate that I am impaired in other ways. The fact that I am confined to a wheelchair, then, motivates even people who do not know me to respond with forgiveness to my forgetfulness, speech difficulties, and fatigue.

Cognitive impairment and fatigue were the primary reasons for my early retirement. A year or so before I was diagnosed, I began to notice a feeling like my brain was wrapped in cotton. That cotton was a barrier to the expression of my thoughts, for it stood between my thinking and my speech and many of my thoughts seemed trapped in the web of that fabric. The severity of this feeling varied throughout the day; it was less intense when I awoke in the morning and virtually paralyzing a couple of hours later. When I noticed these symptoms for the first time I was still working and my days were filled with intense cognitive activity – teaching courses that required deep concentration and on the spot responses to students’ comments and questions, and meeting one-on-one with students and colleagues throughout the day – so I chalked my cognitive problems up to stress and believed my fatigue was caused by overwork. As a result, I tried to “push through” and function at the level I always had. I soon found, however, that pushing through was not an option. Once the fatigue hit I was absolutely unable to function. I could not speak, I was overtaken by bouts of uncontrollable yawning, and I was overwhelmed by a need to rest.

I find it difficult to distinguish between cognitive impairment and cognitive fatigue. The two are inextricably intertwined in my experience; my cognitive symptoms are exacerbated by fatigue and the cognitive symptoms are themselves fatiguing. I am aware that my speech and attention deficits are ever present and that they are more severe as my fatigue increases throughout the day. I am also aware that each day brings a moment at which I have no choice but to rest and/or sleep. As my fatigue increases in the late afternoon so too do physical symptoms—trouble standing or taking the few steps from my wheelchair to the toilet or another seat, for instance. Late afternoon fatigue also brings with it double vision. These physical symptoms, then, are signals that whatever cognitive symptoms I am also experiencing are probably related to fatigue. Experientially, though, the distinction between cognitive impairment and fatigue is unimportant; what matters most to me is that I am forced to spend so many of my waking hours managing both the impairment and the fatigue.

Writing this post has been an exercise in managing conflict.  On one hand, I feel the pull toward cultural imperatives to avoid hyperbole and to end on a positive note; on the other, I feel an abiding loyalty to others who suffer from these symptoms, a loyalty that can only be honored by resisting the impulse to understate and provide a “feel good” conclusion. Many of us have tried medications, supplements, exercise regimes, and changes in diet, but have not experienced significant relief from these symptoms. As a result, the scope of our lives decreases daily as we struggle against cognitive impairment that seems indescribable and against fatigue that itself robs us of the energy to even attempt that description.