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.


20 thoughts on “Back to Myself
  1. I hope you love that returned to self because I sure do. What an illuminating and deeply honest piece of writing. You are back home.

    XX

  2. Bravo!

  3. I’m glad that you have not only figured out what the physical problem was but also that you found yourself again.

  4. Kudos, & much love to you!

  5. Well done Michelle !! Well done 💕

  6. I’m glad to have you back. So many things in the last year have reinforced the often repeated trope “just because you have MS doesn’t mean you don’t get sick.”

  7. I am so, so glad I was in Ohio to share in your “return.” I have that imaginary boat, too, though mine glides down a slow-moving, tree-shaded river.

  8. Michelle, glad to see you blogging again. You are always so poignant and frankly – real. I always like reading your posts. They are thought provoking in so many ways.

  9. Yes! This is so pitch perfect–love it! Man, I’m glad to hear your straight-talking voice again. xo

  10. Oh Michelle it is lovely, just lovely, to hear both you, and your voice. Love you. Keep writing, in this deep way. xoxoxo

  11. Welcome back, ProfSpazz!
    Glad you found your self back, with the complexity, depth and humour intact

  12. Wonderful post, Michelle. When I saw you last week, the difference from two months ago was astounding. Radiant Woman is back!

  13. Awesome as always, M!

  14. I too am glad you’re back to writing. I love to read your posts. And I WISH we were better served by our health care teams.

  15. Michelle, I am so glad to “see” you again! You have been missed.
    ((hugs)) Embee

  16. Dr. Michelle! Good to hear from you, and I am pissed, too, that you had to go through so (way too) much just to learn of a med dosage problem. Grrrr. May you find your floating raft this week, whatever that may be. A

  17. Michelle, this was lovely! I’m so glad you’re better. Calm waters….
    Guitar_grrrl

  18. I do not have calm smoothly.
    A kind of predictable rhythm
    More stay awake living than steel
    Self. Less stability, more notable
    Incidents constantly falling apart
    On the floor.

    Chairs, unable to stay awake during
    Basic transfers, paranoid by short
    Periods. Love me, hate me; effectively
    Impossible me. Intervention is safely
    Tucked hospitals. A kind of predictable
    Rhythm.

    Terribly disintegrated, cognizant of
    Struggle. Lonely, inexplicable hypo-
    Thermia in my body and high volumes
    Of sad in my symptoms. Pumped with
    Battery tests, a kind of overdose sim-
    Plifying matters.

    Essentially conflicted world, determined
    As a result, picked fears and troubled
    Hallucinations. I blogged. Conflicted
    Medical reading hand I feel a kind
    Of predictable rhythm. Again. Magical
    Falling; hopeful basis.

    I misled hope toward impossibly cold
    Rebuilds. Convincing the unknown of
    Changing delirium. Pissed with Google.
    Consulting paranoia. Accepting a fine point
    Observed in pursuits like neurologist or
    Physiatrist.

    Quietly drifting on the breeze, my body
    Attributed off the water where it comes
    Back to itself. Nothing more invisible or
    Brave I have returned, created what I have
    Forgotten; a sheer force of calm on
    The advice of predictable rhythm.

    ** Thank you Michelle for letting me play with your words. seenjo11

  19. Hello, Michelle-
    My being, is instantly filled with a sense of excitement, the minute I see a new posting! It is so, true when it comes to the, “created,” expectations we lay out, for ourselves…forgetting what we’ve lived, over and over; the disease dictating our abilities, and reach. This, “hoping to be something I’m not,” has been something I’ve been dealing with, for quite some time. Just, recently I have found, within myself, a, “true,” word of hope… “Surrender.” This, has brought me much needed rest.
    Thank you for pushing through the -stuff- and continuing to write. I cherish the time we get to spend, together because of you, doing so!

  20. This rings true for me: “Though hope seems a positive emotion, it does not serve us well if it has us always looking toward an impossible future.”

    So glad you wrote this. I hear your voice in these posts.

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