Still More on Lola

Are you fricken kidding me? Am I talking about Lola again???! I better get a new published writing gig soon so I don't become boring.

Lazy Julie has some regular visitors from outside the Boston area (and the state, and the country!) so I'm cutting and pasting the Lola article here. This is not EXACTLY the same as it appears in the printed magazine, but it is the version I submitted:

TRUE STORY: Maybe I'm Just Lazy
I’m gorgeous, hilarious, and an amazing mom. Why should Multiple Sclerosis get in the way?

(This subhead was definitely NOT my idea. I would never have described myself as "gorgeous." "Stunning" or "beautiful" maybe, but not "gorgeous.")

You’d never guess I have MS. I’ve got some other stuff going on. I’m a single mom, a writer with a day job, a friend of some awesome women, a girlfriend to Bald Hot Ken, a member of a rather bizarre family, a clean and sober alcoholic/drug addict, and a spiritual, but not religious, person.

Before diagnosis last September, my life was perfect. I was stunningly beautiful, had only 10 percent body fat, was great in bed, won “Mother of the Year,” and I paid all my bills on time. (Okay, I am great in bed, but the rest is just wishful thinking.)

My diagnosis story is unusual. Probably because this is a disease that affects twice as many women as men, it can take years for seemingly random symptoms to be taken seriously. I’ve heard many stories of women with MS who are given referrals to psychiatrists rather than MRIs. Not me. I was diagnosed three days after I called my GP to get a script for conjunctivitis, which I thought was the reason behind my sudden loss of vision in my right eye. Instead, I got a referral to an ophthalmologist, who sent me to a neurologist, who sent me for an emergency MRI that showed probable MS. What the hell? I came in for pink eye!

I was convinced that this was a medical mistake. Keep in mind, I was blind in one eye, partially blind in the other, I couldn’t drive (the RMV frowns on blind people operating motor vehicles). I had fatigue that made me long for the first trimester of pregnancy, I had shocks up and down my spine, headaches, muscle aches and pains, numbness and tingling, and I was getting IV steroid infusions in the ER every day in the hope of sending my MS into remission.

Over the next couple of weeks, I had two more MRIs of my brain and spine; vision, blood, and neurological reflex tests; and a lumbar puncture (which is just a fancy way of describing a hot neuro resident jamming a long needle into your spine). To confirm the diagnosis, doctors have to rule out all the copycat diseases and try to identify some MS markers. I was lucky, I guess. I tested negative for all the other diseases (Ken was relieved when syphilis was eliminated). The MRIs showed a dozen old and new lesions, and the spinal fluid revealed three bands of protein that are often visible with MS. It was official.

When all the tests finally broke through my wall of denial, I told the kids, 8-year-old Ruby and 4-year-old Zane, who took it pretty well. They let me read them a story about a mommy with MS, they asked a couple questions, and then they asked if we could stop talking so they could watch Curious George.

On the other hand, when I tell grownups about the MS, I often get one of three responses:

“I’m so sorry. That’s terrible!” The speaker has wide eyes filled with horror and pity and it comes with either a hand pat or an arm squeeze. I smile, say “thank you,” and assure them that MS is not fatal and that the advances in treatment mean I will probably live a near normal life. What appears in the thought bubble over my head, however, is “Jesus Christ! Aren’t you just a ray of sunshine!?”

“But you look so good!” This statement is accompanied by an expression of disbelief and a glance from head to toe. I recite the list I’ve memorized of all the famous people with MS who also look pretty good: Ann Romney, Montel Williams, Lena Horne, one of the Osmonds. What I want to do is drag one foot, slur my speech, drool a bit, and then ask if that’s how someone with MS is supposed to look.

Total denial. My family is particularly fond of this one, making comments like “What makes you think you have MS?” (Oh, I dunno, three MRIs, a lumbar puncture, and a team of neurologists at two of the world’s leading hospitals.)

I shouldn’t be surprised by the responses I get from people in my gene pool. I was born into a somewhat crazy family that included the future spouses of circus performers. My youngest brother married a woman who traveled with the circus as a child. My older brother married a professional fire-eating, unicycle-riding juggler. My sister, who works really hard at being normal, married an amateur magician. I don’t think these are coincidences. After growing up in our home, carnival folk were right up our alley.

My unconventional father, who loves me very much, responded to my MS diagnosis by purchasing a 1994 Buick on eBay and shipping it from Florida to Boston via auto-transport. Not your typical reaction to a chronic, debilitating neurological disease, but appreciated. In addition to the Buick (which I bartered for housecleaning on Craigslist), I received cards, letters, calls, emails, and even a delivery of chocolate-covered strawberries. (Had I known there’d be cars and snacks, I might have gotten MS sooner.)

My women friends have rallied around MS Me in a big way. When I was first diagnosed, Liz drove up from DC to chauffeur the kids and me around. Christina dropped everything at her power-chick job to rescue me when I started to go blind at work, and she paid for a Merry Maid to clean my messy house. My nurse friend Gina held my hand when I gave myself the first injection of MS meds that I have to shoot up three times a week. I don’t have the cushion of a husband, but I have a pretty warm patchwork quilt of supporters.

That wasn’t always the case. Before I got sober, I ingested whatever drink or drug was available as often as possible with the single goal of blacking out. At my bottom I was just shy of 19, but I felt old and tired. I lived in my mother’s attic, where she left room-for-rent ads on my floor; I was fired from my minimum-wage job after I woke up far from home at punch-in time, wearing a clown costume after dropping acid at a Halloween party the night before; and I regularly considered stepping in front of a bus so I wouldn’t have to get up the next day and do it all over again.

After I went to rehab, I set off on a mission to figure out who the hell I was. I did a lot of lot of typical recovery stuff – 12-step meetings, therapy. I went to college and discovered that I still had brain cells left. I wasn’t drinking or drugging, but I found lots of other ways to escape.

One of those escapes was my ex-husband. He was the cute chef in the kitchen when I was working my way through college as a waitress. I loved that everyone else wanted him and I was the one who got to see him naked. Fifteen years later, we owned a home, were married with two children, and had nothing in common. When we split, I became a dating machine, going out with anyone who answered my online personal ad. I made up mnemonics to remember their names. Pants Too High Tom was my first date after almost 20 years of monogamy; I can’t forget Blue Dress Gene (don’t ask); and then there was Bald Hot Ken. He was there holding my hand when I got the MS news. He even suggested an upside to MS: I might be able to get a service monkey.

MS has not changed the fact that Bald Hot Ken and I love each other very much. We do not, however, live together. Like me, he’s a divorced, custodial parent, so cohabitation would be akin to teaching my cat to pee on the toilet – not impossible, but definitely not easy. I’m the only grownup living in my apartment, but I am not alone. My two children remind me on an hourly basis that I am not the most important person in the room, much less on the planet. If I respond to MS by lying around feeling sorry for myself, who would take Ruby to Counting Crows concerts and play Hot Wheels with Zane? Who would roll up the windows in the car so we can all scream at the top of our lungs when we’re having a rough morning?

At the risk of sounding like an insufferable Pollyanna, I can already see that MS is a gift in my life. It’s a weird gift I never asked for, kind of like a painting that the Universe left on my doorstep covered in bird shit. Once you get past the smell, you do a little scraping and find the beauty underneath. I can bitch and moan or I can make something out of it—which I’m doing by writing a book about my experiences. The best part of MS is that it’s given me my voice as a writer. Now just try to shut me up!

Julie Baker is a writer who lives in a messy apartment south of Boston and commutes into Boston for her day job in marketing. Julie is writing a book about her journey with MS. To learn more, visit: http://lazyjulie.blogspot.com.