It has taken me a decade to admit that yes, I am a control freak. From wanting the bed made every morning, to checking in three times to see if my husband followed my to-do list when dropping off the baby at daycare: I have accepted the truth that I am not as laid back as I pretend to be. I realize it can be a funny or endearing term, but I also know from experience there is a deep-seeded anxiety that lives in all of us control freaks.
“If I don’t have the control then I am in danger.” ...
The night after your 7 month birthday, you and I were alone in the home. That evening, I would breastfeed you for the last time.
I sobbed, Naya. I desperately begged my body to file away and remember the feeling of feeding you, knowing inevitably I would forget how it felt the moment we were finished. And so I was mad. I was mad I had this disease. I was mad that I had to take these medicines. I was angry that the choice of when I was done feeding you was being ripped from me and no longer on our terms. Knowingly, you instantly pulled away from me and looked up at my face, perplexed. So I sat you up on my lap, each one of your tiny legs wrapped around my waist. And I spoke to you. Really spoke, for the first time in your life...
Before I found out I had multiple sclerosis, I told my family, my friends and my boss what was going on: the weak leg, the doctors, the MRI, the spinal tap. When I found out that the tests were positive, I pretty quickly told them that news as well. I was scared, but I was never alone with this.
I’ve learned since that some people take the opposite approach. They feel that they’re managing this disease well if they never have to tell a soul. And there are others who fall somewhere in between. MS is something to be mentioned only to those close people who really need to know...
I’ve been thinking about labels a lot lately. Specifically, the ones I use for myself. We all have them, don’t we? Especially with the inevitability of social networks these days, we’ve had to get more comfortable putting some kind of picture of ourselves forward to the world. And even if you’re a very private person, you probably know which boxes you fit into.
Me? I’m a woman and a sister by birth. I’m a Southerner because of where and how I was raised. I’m a wife and a mother because I chose to be so. I’m a reader and a writer by nature and profession. These are intrinsic, unchanging pieces of me, and have been for most of my life.
Fall is coming. The fields and farms out past my house are starting to look like they did last year, when I took a long walk in the late summer and noticed that one of my feet was dragging a little bit. When I walk out there now, and see the seasons changing, I can’t help but think about everything that’s happened in the past year -- my initial MRI, diagnosis, all the subsequent appointments, and the start of the medication and a different diet.
In a few weeks, I’ll have a follow up MRI and another appointment with my neurologist. Maybe the medication is doing what it should. Maybe all this healthy eating has done some good! If not, it’s back to the drawing board (maybe after a giant ice cream cone) and we’ll see what might come next.
I’ve been thinking a lot lately about my Auntie Rose. She owned a small, second-hand clothing store in Laguna Beach, where my mother shopped and worked part-time. I would get off the school bus early, walk down the hill to the shop, and stay there until closing time, when sometimes I was allowed to push around the fascinating, self-propelled Hoover. We went there often to visit with Rose. She and my mother would sit and chat, look at the new arrivals. At the age of ten I drew up adoption papers, illustrated and sealed with gold stars, to let Rose know that I was hereby adopting her as my aunt. She accepted.
We moved away when I was thirteen, returning to Laguna for monthly medical or orthodontic check-ups. Before heading back home, we’d cap off the day in Rose’s shop. While the adults chatted I would investigate the “Funky Closet,” a wardrobe bursting with lavish or eccentric clothes, feather boas, hats, ludicrously high heeled shoes and funky boots. On one occasion Aunt Rose held back a beaded sweater for me. I was fourteen and quite smitten with vintage clothing. On a knit field of navy blue, reflective and luminous strawberries were arranged in clusters, attached to yellow ribbon stems. Yellow ribbon trimmed the cuffs and collar, and the buttons were tight balls of rhinestone. Rose said I could keep it, no charge.
As of last week, it’s been six months since I found out that I have progressive MS.
This is the first of many milestones that I’ll pass. Six months, a year, or five years, or ten. I think it’s human nature to take notice of these moments and to find some way to mark them. But for me, and I suspect for you, they aren’t occasions for flowers and balloons. It's not a gleeful anniversary. So what to do?
I had just turned 40 when I was diagnosed with multiple sclerosis. That was a dozen years ago. Looking back on the way I reacted to my diagnosis, I see a few things I would have done differently.
My diagnosis came a few months after I decided I needed a well-patient checkup upon turning 40. I wasn’t aware of any symptoms at that time; I just figured getting a checkup is what responsible grownups do when they arrive at that milestone age.
People in wheelchairs used to be almost invisible to me as I passed them on a busy day when all I had to think about was cheer practice, my boyfriend and my grades...until I became one of them in December, 2011.
I had no idea what multiple sclerosis was, and when I felt a little tingling in my hand the first thing I thought of was carpel tunnel from too much texting. The headaches I brushed off as stress because I was preparing for the ACT, applying to colleges, and my boyfriend had just moved across the country to begin his four years at Cornell. It never crossed my mind that there could be something attacking my brain.
We often use the phrase “self-conscious” to describe someone who’s very aware of what other people think. A teenager in her first high heels, for example. She’s walking awkwardly, heels clacking, and looking around to see who’s noticing, thinking of what her friends (or that boy) might think, or wondering who sees her as she walks down the hall. She’s self-conscious, right? (I know, because I was her.)
Since being diagnosed with multiple sclerosis in December, I’ve become self-conscious in a much more literal way. At all times, day and night, I’m acutely, almost excruciatingly, aware of my own body. I’m overly conscious of myself.
Incredibly, it's been three months since I was diagnosed with multiple sclerosis. Time flies when you're busy and confused. These months have been a whirlwind of appointments and reading and exploration. I would not presume to give advice to the readers of this blog who have years of MS under their belts. But I would like to share my perspective about the bad and the good of being newly diagnosed, beyond just the physical symptoms.
The bad: I have no idea what's going on.
I'm a person who prefers specifics. I like plans. I like goals. I once ran a marathon largely because I printed out a schedule and refused to deviate from it for five months.
Since my diagnosis, I've spent a lot of time coming to terms with the fact that not everything is black and white. In January and February, I visited three different MS specialists, and each gave me a different diagnosis (relapsing remitting, primary progressive, and finally progressive relapsing). Each doctor – well-meaning and concerned – was absolutely sure about his or her findings and each gave me a completely different sense of what the coming years may have in store. Maybe I’m standing on the edge of a cliff. Or maybe I’m just looking out at some rolling hills.
If anything has become clear to me, it's that nothing is clear. To be told, "You have MS," doesn't actually tell you very much. Each of us will have a unique experience, and our experiences will evolve and unfold at a pace largely outside of our control. For a planner like me, that's very, very frustrating.
The good: I know exactly what I need to know.
I have a six year old, a full-time job, friends whom I never have time to see, and a family that lives too far away. Like many of you, I consider it a good day if I can return even half of the messages on my list. Life doesn’t leave a lot of time for considering the big picture.
But learning that I have MS has crystalized one thing for me. As hokey as it sounds, the things that matter are the people I love. If everything else is stripped away (and it might be!), those relationships will still be the things that matter. That’s not to say that I’ve given up on more trivial matters. I still care about whether my skinny jeans fit and where I’ll go on vacation this summer. But I have a clarity about my priorities now that I may never have gained without a big kick in the pants. MS is nothing if not a big kick in the pants.
I've chosen to be very public (obviously) about my diagnosis. In the past three months, I've heard from many, many friends – and some strangers – with messages of love and support. And however difficult the reason for them, I won't overlook what a gift those messages have been for me. I’m lucky despite it all, and I’m grateful. I hope you all have days that remind you of that as well.