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 I 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.