ProfSpazz

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 suggested 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 thrown 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 couldn’t tell her that even after all this time MS cannot be cured and that in most 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.

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 marched 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 pump 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 1848 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.

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.

Until I learned the term “bladder dysfunction” I blamed my maternal grandmother for the extraordinary frequency of my need to “make water.” A woman who prided herself on her preparedness, she was convinced that the only way to guarantee that her granddaughter was road ready for even the shortest of trips was to ask over and over again, “Do you have to go before we leave?” No matter my answer, her response was, “You’d better go again just to make sure,” a command always followed by the warning, “You know that Grandpa won’t want to stop along the way.” I must have racked up hundreds of hours sitting on the toilet in my grandparents’ home studying the wallpaper and trying with all my might to squeeze a few more drops out of my bone dry bladder.

No matter how diligent I was about obeying my grandmother’s bathroom directives, as soon as I had settled into the backseat I worried that my incorrigible bladder had already begun to fill. My worry, though, was unnecessary; before my bladder could even begin to suck water from the rest of my body, my grandmother would make me her fall gal, her Potty Patsy. Her voice thick with sweet concern, she would say, “Grandpa, I think Michelle needs to stop,” her coded admission that she needed to urinate.  It would be years before I understood the language of road signs, so I thought of her as a kind of bathroom dowsing stick; invariably, by the time my grandfather could tilt his head, wink at me in the rearview mirror, and ask, “Are you sure Michelle needs to stop,” a town rose like a miracle out of the vast expanse of Iowa cornfields and a diner offered itself for our use.

Long before the invention of antibacterial moist towelettes my grandmother could disinfect anything with water, toilet paper, and bar soap–and so she did with the toilets in those diners. I marveled at the precision and fastidiousness with which she cleaned the seat and handle, then covered the seat with paper—one strip on each side and one at the back near the tank. Only after she had carefully inspected her own work and convinced herself that her preparations were sufficient was I allowed to enter the stall and do my excretory work. More often than not, as I sat listening to her prepare her own toilet I had to will my body to make water, for I knew that my release from that stall depended upon my grandmother knowing that my time on that toilet had been productive. I knew as well that upon my release I would find the slice of rhubarb pie my grandfather invariably offered as a reward for my stellar performance as my grandmother’s Potty Patsy.

For decades, I had no idea I had MS, so I blamed my grandmother’s conditioning for my bladder’s overactivity. In retrospect, I can see that bladder dysfunction, manifested as a constant feeling that I needed to “go” accompanied by a fear of “accidents” was one of my few unremitting symptoms. Over the years, I developed an irrational resentment of the amorphous “others” in public restrooms—the people I heard opening their bodies’ floodgates and letting the waters flow while I struggled to “tinkle” a little, despite the almost painful urgency that had become my bladder’s constant companion. My preparations for leaving the house always revolved around the toilet, and my partner responded to my announcement that I would be ready to leave “in a few minutes” by locating a crossword puzzle and settling into a chair for a long wait as I tried to empty my bladder.  Bladder dysfunction is not uncommon in people with MS; according to the American College of Occupational and Environmental Medicine, the incidence of neurogenic bladder in individuals withmultiple sclerosis can be as high as 90%. In most cases, the treatment involves the use of medication, intermittent catheterization, or some combination of the two. In some cases, though, people who suffer from bladder dysfunction are so plagued by retention-induced urinary tract infections and incontinence that surgical intervention is required.

Medical supply companies have been doing their capitalist best to “normalize” the use of catheters, particularly those specifically designed for women. Liberator Medical, for instance, has introduced us to Julie, whom they present as the typical user of what they call the Speedicath. Model beautiful and adorned with heavy makeup, Julie explains to us that she is for some unidentified reason (that I assume to be MS considering her relative youth) unable to urinate without a catheter. She then touts the Speedicath as a revolutionary alternative for women who use traditional straight catheters. The Speedicath, she tells us, is discreetly designed – the same size as a lipstick – and hygienic because there’s no need to touch the catheter itself. The first time I saw Julie’s testimonial, I was drawn in (if you can call it that) by her description of the Speedicath, for it seemed to me that I might feel liberated by a more discreet version of the catheters that have become so much part of my life. In the end, I found this particular variation on the catheter no better or worse than the traditional version, but I am still fascinated by the company’s attempts to associate catheters with traditionally feminine products (lipsticks) that are themselves adornments rather than necessities. What does it mean, I wonder, when television advertisements connect a troubling symptom of a disease that strikes approximately 4 times as many women as men with a beauty product? Does that minimize our experience of the symptom or does it make it easier for (female) catheter users to come out of the closet, thereby ameliorating our embarrassment about catheterizing?

Though I am sure that the opening paragraphs of this post seem to make light of my own experience with this symptom, many people with MS – myself included – experience bladder dysfunction as an impediment to achieving a desired quality of life. The fear of accidents and the fear of being stranded in places without a toilet or in a building whose bathroom is not wheelchair accessible, are reasons for me to avoid excursions outside my home. Even when I can be assured of access to adequate facilities, the idea of catheterizing in a public restroom is distressing not only because catheterizing can be difficult in unfamiliar settings but also because I have not yet gotten over my feeling of embarrassment about carrying catheters and disposing of them where they might be seen by others.

These days, I remember my grandmother’s urination rituals with bittersweet amusement, for I know now what I did not know then: that my grandmother suffered from Lupus, and that her own frequent need to urinate was likely a symptom of that disease. I empathize with the fastidious woman she was and I am cognizant of the steely determination it took for her to face those long trips through the countryside where bathrooms were few and far between. Even living in a city where bathrooms are abundant does not guarantee that one will be available and accessible when I need it, and bladder dysfunction itself changes the very meaning of the phrase “when I need it” from “as soon as I can find it” to “right this minute.” Social isolation has long been associated with MS, and the humiliation of incontinence caused by the kinds of bladder dysfunction that accompany this disease is, in my case at least, one of the reasons for that isolation.