I am constantly disappointed by the fact that I now spend day after slow, quiet day engaged in activities I once thought of as pastimes – reading online newspapers and blogs, staying caught up on Facebook “news,” watching television and DVDs, and incessantly checking e-mail and discussion boards. Now that multiple sclerosis (MS) has forced me to “retire” I find my life so reduced in scope that I look forward with great anticipation to the smallest of reprieves from disease-induced progression of physical and cognitive disability. I long for the infrequent days when my hands are coordinated enough to make beaded jewelry or when I am strong enough to cook a simple meal. Mostly, though, life in the house I inhabit with my partner is marked by disappointing sameness.

Why, then, do I regret the end of each day and look forward to the beginning of the next? Honestly, I have no real answer to that question. I do, however, have a sense that these simultaneous feelings of disappointment and anticipation originate in a desire to return to a time when I could “count up” my daily accomplishments, to experience again the need to make lists carefully organized by what must be done today and what can wait, and to bask in the illusion that what I do impacts others’ lives. These days, what I do or do not accomplish is of no consequence. No one depends on me to “show up” or write a report or prepare for class or schedule a committee meeting or deliver a presentation. No one depends on me at all – and the fact of the matter is that this is best for everyone, for MS has rendered me eminently undependable. I cannot tell you when I’ll be able to make a phone call, shop for groceries, or even dust the furniture.

More often than not, I find myself waiting for my partner to come home – hoping for news of her day and feeling too deeply my emotional and physical dependence on her. In our old lives we worked at the same university, taught the same students, and shared the same colleagues. Our offices were never more than a few doors apart and we were likely to bump into each other in the hallways. At meetings we carefully situated ourselves across the room from one another in an attempt to illustrate our separateness, our difference, our identities as colleagues as likely to disagree as agree. In short, we worked hard to be seen as individuals rather than as a couple. In our new lives it is no longer necessary for us to work towards separateness, for she is always there and I am always here. In our new lives there is loneliness. That loneliness, I am certain, is another reason that I regret the end of each day. When in the early evening my crushing fatigue forces me to separate myself from my partner and retreat to my bed I begin immediately to look forward to the next evening and its promise of a few hours spent gossiping and laughing in the easy way lovers do.

More than once, I have heard the phrase “I have MS, but it does not have me.” I see the wisdom in such thinking – its attempt to disempower the disease, to admit that it has power over the body while denying it power over the psyche. I am perhaps not as wise as those who have embraced this attitude; no one will ever hear me claim that this disease does not “have” me, nor will I ever profess gratitude for all that I have learned from or been given by this disease. As I have said, my days are now slow and quiet and I have time and space enough to enjoy solitary pastimes. That said, I am not grateful to MS for providing me the “opportunity” to enjoy a life outside the hustle and bustle of the workaday world. This disease denies much more than it provides. I am grateful for relationships that sustain me, for a partner who loves and cares for me without complaint or visible frustration, and for the material privilege I experience. I am grateful for friends who remain in my life despite my relative lack of ability to socialize and for the Internet friends who also suffer from MS and can therefore relate to my experience with the disease. My desire to experience all I can of these relationships makes me lament the shortness of my days, to look forward to the very repetition I often despise.

17 thoughts on “The Shortness of Days
  1. speak to us.

  2. You’ve found a new niche. More than a pasttime.

  3. Thank you for sharing such a personal view of your life experiences. Much of what you describe is very similar to what I also go through day to day and can identify with unfortunately.
    Hang in there and know you are never very far from my thoughts.
    HUGS…. and not the MS bad ones 😉

  4. This brought me to tears. You are awesome. But one thing is wrong: You are the most dependable friend one could ever have. xo

  5. So long as you are writing, you are having an impact on people’s lives. Brava, Michelle!!!

  6. I love you, Mama Michelle! This is amazing, heartbreaking, and profound. Thank you; I look forward to reading more! And to depending on you for lots of things, like advice (about whether I need to call the police :), among other things) and love and edgy banter.

  7. I love you, my friend. You matter to me, and your life matters to me.

  8. Thank you for writing this, for taking the time to find the right words. I love the precision of your voice. You most certainly can (and do) still affect others’ lives. Maybe these moments can’t be counted on or scheduled regularly, but they most certainly exist.

  9. Awesome! I love it! You bring so much to the people that know you. Believe that!

  10. Thank you, Michelle, for sharing your days and evenings and thoughts in such a beautiful, plain-spoken and moving way.

  11. Michelle, this was just beautiful. There are so many things we take for granted in our lives, and you have pointed out how the most trivial things can become a challenge or even source of frustration. However, in the end you have found a nice way to continue making amazing contributions to the lives of others. Thank you. Gracias querida profesora!

    I am depending on more of this writing as well.

  12. Thank you all for all of your support. I cannot express how much you and your support mean to me. Believe it or not, this blog is already becoming an important part of my life. I am in the process of writing next week’s post. You are all awesome!

  13. Love you, love you, love you — suffering might teach us, but it does not in itself enoble. That’s a hard line to roll your scooter down, but that’s the line I see in your post. So smart! So precise, so incisive!

  14. Once a week-that’s all? I was hoping for every day! I love your writing.

  15. Exquisitely written and the best criticism of the I Have MS, MS Does Not Have Me platitude I have yet seen. When our lives are forever changed because of this disease we are unquestionably had.

  16. I love the new blog. I know mine has let me spout off when I needed to and just share stories when I’m feeling good. I hope yours provides you with something you need. At least know that others do enjoy reading it.

  17. I, and my co-author, are writing a book about living and loving with MS, entitled “A Dose of Devotion”. We are in the process of compiling the stories of couples who have faced the challenges of MS with courage, grace and most of all, love. We would like to include a gay couple in the book. Would you be willing to call me at 530-613-2042 to discuss this further? Thank you in advance. Ronda Giangreco (author of “The Gathering Table”)

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