I’m a woman with MS, but more significantly I’m a writer, an educator, a native Texan, who’s passionate about literacy & creativity. I believe stories matter, that they hold transformative power for both the teller/author and the listener/reader. A good story wakes us up, opens our minds and deepens our capacity for compassion—for others, as well as ourselves. I’m convinced that stories connect us, as family, community, tribe. My stories connect me to myself, in that they help me to know myself better. Which is to say that through story I attempt to divine what’s meaningful, what I’m willing to speak out for—fight for, what I desire, what I’m grateful for. I ask myself a lot of questions in the process of taking in other people’s stories, as well as in the writing of my own.
How can I make a difference, do I make a difference? What do I believe? What is true? Is there ever justice and are some things beyond forgiveness? How do we know whether to hold on tighter or to let go? How do I live with regret, fear, pain and grief? How might I give more? And one of my favorites, What’s wrong with this picture?
Stories, in essence, are how I figure things out and grow to a better understanding, how I come to a place of acceptance or divine that acceptance is not an option. Stories are how I learn, how I heal, how I come to terms and how I move on, how I mourn and I how I celebrate. To say I love stories would not begin to cover it; I actually believe that I know how to live better, to love better, because of what stories teach me. In those few times of utter despair and seeming-endless darkness, stories have restored to me that which I needed to choose life and find light again. Through stories I’ve found not just the reasons to take that next step, the next breath—but the momentum and the oxygen necessary to follow through.
As we all—each of us—are, I’m made up of many stories. This year I told myself a new version of an old story that I’d been boring myself with for a long time. Actually, what I did was craft a different ending, one that made way for a much better story than I ever imagined. And for somebody who considers creativity to be her forte and deems storytelling to be both her gift and her salvation, that’s quite remarkable. That’s as close as my life comes to experiencing a miracle.
I’m a very lucky woman. I consider myself extremely blessed. Most of that luck and blessing arrives in the form of people; some of it comes to me on four furry feet, and in the form of opportunities. Sometimes, at first, pieces of luck and blessing masquerade—look more like a problem, a curse or burden, than something that will turn out to be a gift in the long run. My latest journey of the miraculous involves a story of people, the luck of timing and coincidence, one of my all-time-favorite dogs, a spectacular pity party that I throw for myself once a year (where I’m the only guest—sans cake, hat or noisemaker), and more than one challenge that seemed capable of providing nothing but frustration, confrontation, disappointment and loss. Like some of my favorite stories, there are heroes (even some superheroes); like no story I’ve ever read before, there’s a trike (a recumbent one, at that.); there’s a quest and a race. It began like this.
I saw the mention of the 2010 MS 150 in the National Multiple Sclerosis Society’s monthly newsletter that I receive via e-mail. The annual bike race to raise funds and awareness for MS was something I both anticipated and dreaded every single year since being diagnosed in 1998. For some reason I felt more upset and sad than in years past. I’d come to use the MS 150 as a kind of anniversary, an annual “invitation” to allow myself to really acknowledge and grieve the losses, the changes, the pain—in all its variations—associated with multiples sclerosis. This worked for me.
The rest of the year I focused on being well, on meeting and conquering difficulties, on finding silver linings and the humor in just about everything MS threw at me. When you experience fatigue and pain more often than you don’t, it’s imperative to redirect your focus elsewhere. So, unless I just couldn’t help it, I saved things up. I put everything that I thought would distract and mire me from daily life into boxes, onto out-of-the-way shelves, like the winter clothes and things we keep for sentimental reasons but don’t need or use everyday. And then, once a year, I let myself take down the boxes—slip into one of the worn sweaters, finger the weight and frayed edges of the keepsakes. Then after a few hours or days—however long it took—the boxes were packed and sent safely back to the sanctuary of the high shelf. Out of sight and reach.
This year was different, heightened. Each time something about the 2010 MS 150 would cross my path I felt sideswiped, like someone who’d been hit by a vehicle that sped away. I found myself looking ahead to catch a glimpse of what smacked me and threw me to the side of the road, lying there with gravel biting into my flesh. I looked back over my shoulder in an attempt to reconstruct what might have happened, a plausible sequence of events. And at other mentions of the MS 150—in the news or on Facebook—I felt as if I’d actually run something over myself. Something once alive and beautiful that I left crushed and bleeding out as I drove as fast as I could from the carnage I’d caused. There was that flash of adrenaline, the flush of heat in my face and neck, trembling in my limbs. I was flooded with guilt and shame. I just knew I was responsible and that I’d be held accountable. I was filled with something that felt so much like actual grief that I’d taste my own tears, and then realize I was crying.
So I went to my journal, which is what I do when something’s bothering me, when things aren’t making sense, when I need answers I cannot find in other, easier ways. As much as I love, require, stories—writing is often a last resort for me. Because it is hard work. Because it requires that I invest, that I explore, that I be willing and able to go to places that are less than pretty and pain-free. When talking to my husband and my friends, when analyzing and obsessing and trying to simply forget have all failed, I give in to what I know I should be doing anyway. I give myself over to the painful process of writing. Which in other words means an exercise of finding not just the truth, but what’s true for me here and now, as it applies to the current situation of concern. It means I have to look at things I don’t like to look at, have to wrestle with ideas that confuse or terrify or disgust me, have to find a way to conjure from thin air that which might be right in front of me—even though senses and reason cannot appreciate them.
Writing like this takes courage, endurance, devotion, faith, rigor, every psychological, physical and spiritual resource I possess. Which is beyond exhausting for someone who can barely make it through each day as it is. This writing requires supreme vulnerability. A vulnerability so raw and whole and thorough that anything could walk right in the door, lay itself beside me, unzip its skin and take me over, envelope me to the point of possession—past any possible escape or extrication. In other words, I must become exactly the kind of vulnerable that has been the source of every great tragedy of life. But also the precise brand of vulnerable that has been the means by which each life-altering and life-saving person or opportunity or experience has been made welcome and been given permission to flourish.
It would be easy to look at my life and surmise that living with MS is the hardest thing I do. You’d be wrong. Writing is the hardest thing I do.
Writing’s also what makes living with MS—living at all—possible.