My grandmother with my sister and me

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.

5 thoughts on “Blaming My Grandmother, or Bladder Dysfunction and MS
  1. This is absolutely so engaging from so many perspectives. The whole feminization of catheters push, the wrestling with societal taboos, the kind of anticipatory self-censorship of not gong places because one doesn’t know what will be available. One of the hardest winters I ever had, I was so sick and coughing and gagging so much that I had to wear adult diapers because I couldn’t contain pee. I was so conscious about the slight crackling noise they made, felt embarrassed and uncomfortable when they were wet, even though I’d been saved a bigger embarrassment. I’m not sure I want to think of catheters as the equivalent of lipstick, but I sure as hell want a society where they fall well within the range of normal in the minds of at least 95% of the population.

    • I know what you mean about adult diapers. I have been interested in the recent push to make Depends type products that are designed to be “invisible.” The advertisements feature a guy asking celebrities and sports stars to try a new type designed to be invisible–for “charity.” I feel conflicted when I see that ad. It’s great that they are working to make incontenance panties easier to wear, but the fact that the charity incentive is vague and makes me wonder what that’s all about. At least discussion about this issue is going on, though.

  2. Michelle, You write in a way that grabs me every time. Usually I’m smiling or maybe even chuckling as I read, and I ALWAYS come away with more knowledge and understanding than when I started. Thanks for that. And thank you for being so frank about stuff no one wants to talk about. You’re helping so many when you share your thoughts and experiences.

    Sarah-Hope, I love your last line; it’s as things hopefully will be as more and more people like Michelle explain and educate.

  3. Believe me, I am not trying to make light (as you say) of any of this, but, truly, the opening paragraphs are very funny. “I must have racked up hundreds of hours…studying the wallpaper.” For a minute, I imagined you laughing at your own sentence as you wrote it, a type of reverse-humor from the days of cracking up over the Decomposition Book. “Reverse,” because this is a brilliant sentence! …which only makes the rest of the essay, and what you must endure, especially moving and felt by the reader.

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