Genealogy, Or Fictions We Tell Ourselves

All my life I was close to my paternal grandfather, especially as I got older. As a matter of fact, for the last six or seven years of his life I talked to him almost every night. My grandmother had dementia and was unable to cmaryandxavierarry on a conversation with my grandfather, who was an extremely sociable person, so he had grown terribly lonely. Though I have to admit that he was terribly racist and conservative in ways that often made me cringe, at the time he was also the one person in my family who I was certain loved me unconditionally. Every time I saw him he hugged me with wild abandon. In fact, though I never let on because I loved it, he often hugged me so hard that it hurt a little. One day when I was visiting, I asked him why I was fat; physically I seemed to resemble the people on my paternal side, but none of them are large. My grandfather said, “Wait here.” He went into another room and returned with an old battered picture. There sat a man who looked very much like my grandfather sitting next to a woman whose belly hung over the tops of her legs and whose torso was bound so tightly into a Victorian dress that she looked as though she struggled to breathe. My grandfather told me that those were his grandparents – his father’s parents. I took that picture home with me and framed it. For many years, I have kept that photo visible as a constant reminder that I am a complicated mix of DNA influenced by generations of people about whom I know almost nothing.

I have recently returned to a project I started many years ago: family genealogy. Honestly, I don’t have much interest in thinking about my “family line”; what interests me about genealogy are the stories. When I see photographs of my own distant relatives – the ones who are so physically similar to family members I have known all my life. I am struck by things like the fact that the men on the paternal side of my family have looked strikingly similar for generations. Their height, their posture, and even the way they lean forward and rest their right elbows on their right knees are characteristics that can be seen in pictures of my 4th great-grandfather, my great-grandfather, my grandfather, and my father.

I found one reference to a couple in my family who died in the poorhouse in St. Louis. They are listed as paupers. I am struck by their story because these are some of the immigrants. They came to this country from Germany probably around 1840; they settled in St. Louis and the man (Valentine Schmidt) served in the Union Army, as did all of his contemporaries in my family. I suspect that the stresses of immigration might have been the force that tipped them toward poverty and made it impossible for them to recover, though I have no idea. I have read much about poor houses, but my suspicion is that none of it quite captures what it must’ve been like to live in abject poverty in the mid-19th century in the middle of a city. As we all know, at that time cities were dirty and overcrowded even in the best of circumstances; add poverty to the mix and one can only imagine the horror of the experience. Besides that, poverty tends to erase people whose lives it engulfs. The fiction I’m telling myself is that there’s something important and beautiful and real about making my ancestors’ lives visible even though they were probably invisible to everyone around them.

Besides that couple, it seems pretty clear that most of the people on my paternal side were relatively well-to-do financially. I am struck by the fact that on my paternal side there seem to be pictures that go back to the mid-19th century. The indication of that is that my family had plenty of disposable income if they could spend money on portraits when the technology was so new. I have one photo album that contains an entire collection of photographs – some of them tintypes, some of them daguerreotypes, some of them just early photographs on thick cardboard, but all of them were carefully labeled by someone who didn’t want the people pictured in them to be forgotten. I feel so lucky to have those carefully labeled photos as I work on the genealogy.

Though I had always believed that my family on both sides had emigrated from Germany, the time I’ve spent doing this genealogy has taught me that part of my father’s line originates in Nova Scotia. For some reason, the idea that a group of ancestors came from Nova Scotia – a place that Deb and I have visited and loved immensely – deeply pleases me. We remember our trip to Bay of Fundy with extraordinary fondness; much to my surprise and delight I discovered this morning that my ancestors lived only a few hours from where we were a couple of years ago when we visited Canada. We have always talked about returning to that area; now my desire for that return is even greater.

At some point, we will all be generations gone, but if we’re lucky someone might wonder about our lives – what our stories were, where we lived, who lived with us, who we loved, and what was important to us. In other words, someone might be moved to do our genealogy. Essentially, what that means is that our lives will be interpreted through the lens of someone else’s desire to explain their own lives. As I look through the pictures I have and explore the material on genealogy sites, I am aware that I am looking particularly for information that seems connected to my own experiences. I have looked for indications that people in my family line had progressive neurological diseases like MS, that they’ve chosen divergent paths when it comes to politics or sexuality, that they made some kind of unusual or interesting choice about how to live their lives, or that they shared my love of a particular climate or landscape. If someone is inclined to look back and think about how we lived it won’t be about us; it will be about them, just as the genealogy I’m doing now is about me. I think of these people and their lives in relation to myself and as a kind of puzzle because I can never know them. They are forever gone.

What We Leave Behind

The Psyché  1876; "The Cheval Glass" by Berthe Morisot

The Psyché
1876; “The Cheval Glass”
by Berthe Morisot

During my first year of teaching at the University of Cincinnati, the father of one of my students appeared at my office door one day. It was Ash Wednesday and he wore the requisite symbol of the occasion on his forehead. Initially, I was unsure why he had come, but once he began to talk I realized that he simply wanted me to know that his son had not always been the young man whose emotional outbursts and tendency to wander in and out of the classroom had disrupted and frustrated me for most of the term. Though I was prohibited by law from discussing the son’s behavior and progress with the father, I felt the intensity of his grief, so I did what any of us would: I let him talk to me. According to this father’s narrative, the confused and angry young man I knew bore no resemblance to the joyful and intelligent child he had once been—a child whose life seemed charmed and full of promise. As the grief-stricken father talked, he revealed that earlier that year his son had been diagnosed with schizophrenia; he also described the family’s harrowing battle to find help for his son in this country’s often insensitive and ineffectual mental health system. He told me that his marriage had disintegrated under the weight of that struggle. That was all he said. For the next few minutes I served as the accidental witness to his mournful weeping. I never again saw the father or his son, but I have thought often of them both, the streak of ashes on the father’s forehead a testament to the grief he felt over the loss of his son to an illness that insists on constantly making its presence known, that every day steals a little part of the lives it touches.

Twenty years later, I look back and I understand from painful experience what it’s like to have your core life plans completely obliterated by a life change you could never have imagined. For that father, it was his son’s schizophrenia; for me, it was MS. When I was diagnosed at about this time of the year in 2008 I was initially convinced that my disease would not progress, that I would certainly be one of those people whose MS would be “benign.” By the time I finished my sabbatical in 2010 it was clear that I would not be able to return to work. For a long time – years – I was convinced that my productive life was over, that I had no way of leaving any kind of “mark” on the world. As I have begun to think about it, though, I have realized that there’s really no such thing as leaving a mark on the world – at least not in the way most people think about it. The only thing of any importance that we leave are the memories that resurface in our loved ones’ consciousness from time to time. In other words, what we leave is love. Of course, that sounds pretty sappy, especially for someone like me who tends to dislike the sappy. That said, it’s really true.

We will have done everything right if someone we loved looks at the colorful fall leaves we enjoyed so much and thinks of us, if someone passes a house we once lived in and thinks of the good times they had with us there, or someone remembers with great pleasure any time they spent with us. Those tender feelings we leave with the people we care about are our only necessary legacy. We need not worry about leaving anything else behind because nothing else matters. I have a set of Word computer documents that are starting paragraphs for blog posts. One of them that I wrote recently is focused on the sadness I feel when I think about everyone else going off to school at the beginning of the school year. That must’ve been written less than a year ago. Honestly, with everything that’s happened I don’t remember writing that paragraph, but when I look at it now I find that I don’t feel that way any longer. I am happy with the life I have built at home. The time I spend resting and otherwise taking care of myself makes it possible for me to interact with my children, grandchildren, and other people I love. In other words, I am able to live a life because I accept (maybe even embrace) the limitations this disease imposes on my life.

It has been 20 years since I have seen either that Ash Wednesday father or his son. I hope that those two decades have been kind to both those men. I hope that the father has found some peace in his relationship with his son; I hope that the son has been able to find a treatment that offers as much relief from his disease as possible. As I’ve said in recent posts, I am in the process of returning to myself, of regaining a sense of emotional stability. Sometimes I remember some of the complicated feelings I felt during the year or so when I was having so much trouble with my medications and I become aware of how much emotional pain I was in. It’s hard for me to believe that the person who inhabited my body during that time is the same person who inhabits it now. People keep telling me that I am “back.” I feel that and I hear it in my voice and I see it in the way people respond to me. I value that and it feels wonderful to be back in the world with friends and family. Despite that, a part of me understands that even that other self—the one my partner, close friends, and I have come to call the “batshit-crazy” self is a part of me, that she exists somewhere deep inside my psyche and might reappear if circumstances dictate. Of course, my hope is that the circumstances will never be right for such a thing to happen, but I feel her as a real part of me. The idea of leaving her behind brings both relief and grief – relief because I never want her to be in control of my life again; grief because she represents a childhood I overcame in order to get to this stable place in my life. She is a painfully wonderful symbol of that which hurt me the most, but which I survived. To banish her from my life entirely would be too great a loss, so I keep her here close to me and hope that she resides quietly deep inside that emotional spot we all keep to ourselves.


Jill and I retiled a table recently. It’s a small piece, one that Deb and I brought back from her mother’s house when we cleaned it out after her mother’s death. The whole family made the trip to Santa Fe in July. We focused in and made quick work of sorting through a life’s accumulation of material objects. The time Table.blogwe spent there was in the middle of the time when I was having the most difficulty with my medications, so I was overcome with hallucinations and I was terribly paranoid; I was certain that the rest of family resented me because I couldn’t do as much work as everyone else. I was also quite depressed, so I was intensely aware of the poignancy of the project at hand. The idea that all of our lives come down to a collection of objects that others have to decide whether to keep or discard goes without saying. However, when I thought about it I wondered about the objects in my own life – the ones that surround me and that I value. What are their points? Why do I keep them? Why do I think I need them? What purpose do they serve?

The value of some objects seems obvious to me. I have in my possession all of my family’s photographs. What I have never done, though, is bring them up from the basement, sort through them, and have them digitized so that they can be shared with other family members and preserved. Instead, they languish out of sight and out of mind. There are also other objects that have sentimental value and a few that have real value. Mostly, though, the objects that surround me are strikingly similar to the objects that surround most people – televisions, furniture, etc. Right now, the tiled table has my attention because its beauty arises from the chaos of the tiles’ layout. The rows are uneven and there is very little symmetry in their layout. The fact is, though, that’s what makes it beautiful. Like most of the objects I choose to surround myself with, this table fits into my world because of its resistance to conformity.

That resistance, the tendency to go against the idea that the world is made up of things that “go together,” that match, pleases me because I have always felt like I don’t quite “match” the rest of the world. In some ways, I have come to embrace that feeling as part of my identity. In other ways, it’s hard not to feel a little vulnerable when I realize that I identify as an outsider. It’s what I want and what I value, but it’s also what makes me feel vulnerable and sometimes even lonely. In some ways, this table is special because it has a little history. We decided that even though it was just a little thing we would take it home because we thought it was cute. By the time it reached Ohio, though, all of the tiles had come off of the base. That’s why Jill and I decided to re-tile it. The choice to save it rather than dispose of it reflects the fact that I have developed a kind of emotional attachment to it in a very short time. Do I see myself reflected in its imperfections? Do I think of the table as symbolic – as a reflection of the way people behave toward imperfect objects (and perhaps even imperfect people) they value?

Honestly, it’s not clear to me what about that table that has touched me at such a deep level, but I feel connected to it the way one feels connected to all those objects that somehow seem to reflect our internal emotional lives. As I have returned from the crisis I was in for the last year or so, I have been consumed by a kind of sadness about the time that I lost. There’s so much that I don’t remember; there’s so much that I don’t know how to do; so much I changed that I now need to correct. Every day is a new set of chores – correcting changes I made to email accounts, untangling other kinds of account changes that I made, trying to remember why and how I changed providers of things like catheters, etc. Some days, I identify strongly with that table, like the pieces of my life simply don’t fit together right now. It’s a matter of continuing the struggle to organize the rows so that all of the tiles fit even if they are imperfect.

Back to Myself

I have always hoped that one day my life would calm into a kind of predictable rhythm, that each day would follow the next smoothly without notable incident, that years of positive experience would teach me that there is more to living than steeling myself against the constant threat of things falling apart. I’ve spent most of the last few decades working to build a life full of the kind of stability that would allow that rhythm to develop, and until recently – even as the symptoms of my disease have progressed – I was beginning to feel confident that I had accomplished the goal of building that calm and stable life. This year, though, things fell apart. I began slurring my speech, falling on the floor when I was in the middle of even the most basic transfer from my chair, being unable to stay awake for even short periods during the day, and experiencing an utter inability to read or even follow short news segments on television. I was paranoid, by which I mean that I honestly believed that no one loved me and that everyone was talking about how much they hated me. I was not able to maintain relationships because I could not communicate effectively with other people. That same paranoia made it impossible for me to ask for help. Deb, my neurologist, and many friends tried to convince me that I needed the kind of intervention I could only get in a hospital setting, but because of the paranoia I was certain that I was being abandoned and that those people simply wanted me out of their lives and safely tucked away where they would not have to think about me again. In short, my life had disintegrated, and even though I was terribly sad and lonely, I was unable to do anything to correct the situation because I was not cognizant of what was going on.

Besides these symptoms, I was also caught up in an inexplicable struggle with hypothermia. My body temperature went as low as 91°F and tended to range between 93°F and 95°F. All of these can be symptoms of MS, but most of them are rare and most are the result of high volumes of brain lesions. Most of my lesions are in my spinal cord, which means that most of my symptoms are in my body, not in my brain. This made the symptoms all that much more inexplicable. About a month ago, I was transferring from my stair lift to my power chair and I fell to the floor in the middle of the transfer. I did not have enough strength to get back up off the floor. Deb and a friend took me to the emergency room and eventually Ibaclofenpump.better was admitted to the hospital. After a battery of tests, the doctors determined that the problem had to do with the dosage from my intrathecal baclofen pump; though this is simplifying matters too much, essentially, I was receiving a kind of “overdose” of intrathecal baclofen. As a result, I was having all of the symptoms I describe above and hallucinations that picked up on my worst fears and most troubling childhood experiences. In short, I was a mess!

As I return to ProfSpazz and begin again to write this blog I feel conflicted. On the one hand, I feel extraordinarily relieved to be back in the world and doing the kind of reading and writing that means so much to me. On the other, I feel intense sadness, because the idea I had that I would cross a temporal line beyond which there would be no possibility of things in my life “falling apart” was simply magical thinking, a hopeful way of looking at the world but a way that has very little basis in reality. Like so many of us do, I misled myself with hope and looked forward to events that I was convinced would change my life for the better. Though hope seems a positive emotion, it does not serve us well if it has us always looking toward an impossible future. Rebuilding my life has meant thinking of the future as a kind of unknown and accepting that reality. I have spent too much time and energy working to control a life that resists my intervention at every turn.

After a battery of tests, the doctors realized that the problem was the baclofen pump. Essentially, the settings were delivering a constant overdose of the medication and my body simply couldn’t handle the level of medication it was receiving. The weakness, paranoia, and even the hypothermia could be explained by an overdose of baclofen. When I emerged from my delirium and realized what had happened I was – not to put too fine a point on it – PISSED. It took me 15 minutes with Google to learn that all of my symptoms could be attributed to a baclofen overdose, but a patient should never need to consult Dr. Google for medical advice. The physiatrist whose job it is to oversee the dosag on my pump should have questioned the dose and checked for side effects. At the very least, he should have seen me so that he could observe my behavior firsthand.

I have never been one to fantasize about the outdoors. In fact, I can think of nothing that interests me less than pursuits like fishing or hunting. That said, I have of late fantasized about long afternoons spent quietly drifting on a lake in a rowboat. Nothing to do but feel the breeze off the water. It is as if my body needs relief, a place it can go where nothing is required of it, where the only thing it must do is come back to itself. For so long I had this idea that there was something I needed to do to make things right, to make up for what the disease has made me unable to do. I worked to create the illusion that I had embraced the idea of disability, that I was adjusting “bravely,” that medications and sheer force of will could make my inadequacies invisible. What I seem to have forgotten is that the idea of fading off into invisibility goes against my very nature. I am more inclined to be an in-your-face kind of woman than someone who sinks off into a corner and apologizes for her existence. These days, on those rare occasions when I go out I wear T-shirts that say things like “You can have my parking space as long as you take my MS too” or “I’m Only in it for the Parking” or “At Least I Always Have Someplace to Sit.” In other words, I seem to have returned to myself.

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.