I Can’t Remember

I can’t remember what happened a few hours ago. I can’t remember a few minutes ago. In fact, I can’t remember. I have become accustomed to this kind of not remembering. I can feel the pulse in my neck; I am dizzy with nervous energy yet somehow exhausted at the same time. I’m afraid of losing my mind. Not going crazy; just losing my mind. I feel like I’m sweating though I know that I am not; in general, this is frightening and uncomfortable.

My grandmother lay in bed for years and years before her death. I remember her writhing, turning from side to side, her body engulfed in delirium tremens, her mind overwhelmed by thoughts she could not control. Why do I remember that? Why does my mind return to her, feel the presence of a woman so long gone? I have always feared my resemblance to her – the blonde hair, the round body, the blue eyes. Will I spend the last years of my life wearing Depends, lost in memories of my difficult childhood? Will I wish that I had accomplished more, loved more, been more lovable? Like her, I am more and more secluded, more and more alone. I have no idea how to be around people despite the fact that once upon a time I loved being social.

This is terrible. The solitude reminds me of a time when I was nothing but social. I worked, I taught, I loved my students. No one could say that I was anything but a teacher. My whole life was wrapped up in that wonderful occupation. My office had a revolving door – students in, students out, students in, students out. My days were spent welcoming students in, mourning as students went out. Now, I don’t see students at all. I am alone. I am alone. This is terrible.

Chicken in the Sky

Chicken.3 (2)When Deb’s mother died we inherited a house full of art – all of it beautiful. One of my favorite paintings we already owned, though. It is one we bought ourselves; it’s called Chicken in the Sky. It’s an oil painting on canvas done from the perspective of a passenger in the front seat of a car on a highway in the countryside. The road ahead has the kind of gentle hill you get on flat land. The highway and the few vehicles on it take up only about a third of the painting. The other two thirds is sky; its background is a brilliant blue and white and its foreground is filled with gray clouds, many of which are shaped like chickens. Yes, I said chickens. The scene captures a moment in a road trip Deb and I took with her cousin Jane. At one point we were bored and tired so we took turns resting in the backseat. When it was Jane’s turn she lay there and just when the car was dead silent she suddenly exclaimed, “The chicken in the sky is not moving!” All of us startled a bit at the sudden announcement in the silent car and then we fell into gales of laughter at the oddity of the comment and at our startled response.

Jane is a professional artist and when Deb and I heard that this painting was for sale in one of her shows we laid claim to it. When Deb’s mother died we combined ours with the paintings by Jane she had in her home and hung them all in the den where we spend most of our time. We call it the “Jane Room.” I find myself looking at the Chicken in the Sky frequently during the day, not only because it’s an interesting piece of art but also because it reminds me of a wonderful trip. Not only was trip was one of the most enjoyable we’ve ever had, but it was right before I was diagnosed with MS making it feel like a kind of last blast of life among the “Normals.” All of us – Deb, Jane, and I – look back on that trip and see that the MS symptoms were very clear at the time. We were traveling in the middle of summer out west. More often than not when we got to a site that required walking my legs simply would not move. Nonetheless, that summer was the last time I enjoyed blissful ignorance about MS. Beginning the next fall MS would be constantly on my mind. I would think about it, research it, write about it, read about it, talk about it, and live with its constantly progressing symptoms every day.

It seems to me that one of the painful things that chronic progressive illnesses do to the lives of people who have them and their families is that the diseases themselves become ever present in the world we inhabit. They aren’t just ours and they aren’t just in our bodies; they live, they breathe, and they take up space. No matter how hard we try to push them to the periphery they consume our bodies and our lives. Some days, I realize that I have talked about MS almost exclusively during the day. I am a trained academic who has any number of interests in a wide range of topics, and at one point in my life I talked about all of those all of the time; now that my body changes constantly I feel so aware of the physical symptoms that it’s hard for me not to wonder where they come from and what they are going to mean in my life. Will they be permanent? Will they progress? Are they related to the disease? Are they related to the medications? All of these questions and the constant discomfort lead me back again and again to the topic of MS.

As I’ve become aware of the way MS takes over my consciousness I have worked to counteract that phenomenon. Each day I read something unrelated to the disease. I talk about something unrelated. I make sure to laugh a little, to try to live in the present and be happy, and to enjoy what my body can do now as opposed to worrying about what will happen in the future. That said, it’s hard not to think about the progression of the symptoms when I feel it happening consistently in all parts of my body. There’s no way to sugarcoat it; MS does what it does and there’s nothing we can do to change it. At that the side effects of the powerful medications we take to control the symptoms of the disease and the struggle to occupy my mind with topics other than the disease is nearly impossible. So, thinking about that chicken in the sky and the trip we took that last summer before I knew about MS reminds me of what it was like to be blissfully ignorant of this disease and the ravages it visits upon my body.

Fall Risks

As I said in “Back tdalio Myself,” one of the effects of the overdose of medication that I experienced recently was hallucinations. Among those was the personification of inanimate objects that I saw around me. For instance, when I was in the hospital I was on the neurology floor, so there were many “fall risk” signs within my line of vision. In my hallucinations those became tiny animated figures whose purpose was to help me behave appropriately so that I could work my way back into the good graces of the people around me. The figures were dolls; the signs themselves were their faces and they wore knitted red caps, green sweaters, and little khaki pants. They communicated by blowing puffs of air in patterns; each word had its own number of puffs and its own rhythm. Though I knew instinctively that they were trying to help me, they were frustrated by my inability to understand their language and that frustration came out as irritation. The clock on the wall became my daughter. She wore a little graduation cap and a choir robe; she stood with her arms crossed over her chest and when I tried to enlist her help to interpret the impenetrable language the fall risk signs were speaking, she stood with a severe look on her face and simply shrugged her shoulders as if to imply that there was no reason I shouldn’t be able to understand it if I tried.

I think of that experience now with a mixture of amusement and melancholy. One can’t help but smile at the thought of miniature people clinging to the walls and speaking in little puffs of air. For some reason, I know now that they were trying to tell me to “slow down.” I have no idea when I figured that out, but it is as clear to me now as the words on this page. When I get frustrated with myself – when I feel that I’ve begun to move too quickly or to try to do more than is reasonable – I remind myself to “slow down,” but the reminder is in the same aggressive tone I heard when the fall risk signs issued the same warning. In other words, for some reason, I have internalized the irritation and anger that I imagined when I was in the midst of my hallucinations. It seems to me a bad idea to put much stock in ideas that came to me in the midst of a hallucination, but I seem intent on judging myself with the same level of harshness.

These days, my intellectual abilities have returned because the dose on the baclofen pump has been dramatically reduced and my oral medications have been changed to ones that don’t affect my cognitive functioning. The restoration of that part of my life, though, is not without cost. Without warning, my body seizes dramatically and uncontrollably. Sometimes I reach forward and my arm snaps back toward my chest, or my legs begin to bend and contort in painful spasms. This is the trade-off I have chosen: increased spasticity for a return of full cognitive functioning. Deb tells me that my neurologist told her that the physical symptoms of MS are sometimes so overwhelming that people choose to sacrifice their cognitive functioning for the relief medications can bring. On some level I really do understand that choice; uncontrollable spasms and general spasticity are painful and distracting. Some days the spasms hurt so deeply that they bring me to tears and I find myself seeking a place where I can sit quietly by myself and ride out the pain.

Deb tells me that for a while after I was admitted to the hospital it was not clear what was causing my problems and she was concerned that they might be caused by the MS and thus be permanent. She says that she spent a lot of time sitting by my bed and weeping because she couldn’t imagine what our relationship would be like if we couldn’t talk about issues and banter the way we always have. When I think of her sitting with that kind of loss, I understand the weeping, the sorrow; at the time, I was so caught up in my own sadness and confusion that I could not be aware of what was going on around me. But now, when I think about the way my pain radiated out and touched the lives of so many people, I understand the relieved looks on their faces when they hear my voice boom out strong and confident. I hear that strength too, and it pleases me; every day, though, I am reminded again that this disease is a cruel taskmistress, who insists always that I face my choice head-on and make it fully aware of its cost.



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.