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.