Writer, commentator and humorist Julie Danis is a Chicago-based strategic marketing professional, and a consumer insights lecturer at Northwestern University. She’s worked for Frito-Lay, Inc. and held senior level strategist positions at J. Walter Thompson/Chicago and Draft/Foote, Cone & Belding advertising agencies. An editor and contributor to The Works magazine, Danis wrote a column called “It’s a Living” featured in the Sunday Chicago Tribune, and has contributed workplace commentary to public radio’s Marketplace. She speaks to various groups on the subject “How to Make Work Work for You.” For part one of the story, click here.

My parents had seen neurologists. I knew the drill. Count backward from 100 by seven and answer the questions: Who is president of the United States? and Who was president before that? until you get to George Washington or can’t remember. I started cramming for the test: 100, 93, 86, 79. The written word cannot demonstrate how s-l-o-w-l-y I subtract by seven. Since I was still in denial over the recent presidential inauguration, I wanted to qualify my answer and say, “Bush is president but Gore was elected.”

The next day the newspapers carried articles on 1) the difficulty of getting second opinions from doctors because health care records are not electronic and patients have to chase down reports and x-rays, 2) advances made with stroke patients regaining their sight and 3) the increase in bankruptcies caused by medical bills. I vowed to pick up a copy of my brain scan and file it for easy reference and sharing and to review the terms of the long-term health care policy I had purchased a couple years before. My mother never had vision problems as a result of her strokes, so I ignored that article.

The written MRI report that I picked up at Levine’s office said, “Multiple sclerosis (MS) could be a possibility” for my type of lesions. MS. Dear Dr. Barry never mentioned MS. MS had never occurred to me. Wasn’t I too old to be presenting MS? For once being old could be on my side. My own personal diagnosis was that I had experienced TIA’s or mini-strokes. Surely that’s what caused my pre-wedding stumbling at the health club, I thought.

I confronted the doctor with the fact that he never mentioned MS before. He didn’t want me to worry, he said. But now since that’s the only thing he didn’t mention I was worried. No, not just worried, was convinced I had MS. Then he said, “The spots on your brain are not the kind that would be left by a stroke.” Now, I was sure he was sure it was MS.

Thoughts jumbling in my mind: Should my new husband and I complete the move into our new three-story house if I’m going to be in a wheelchair? How will my new husband react? This surely isn’t what he bargained for. How will we have sex? This isn’t fair. I’m just in the beginning of until death do us part, so help me God. I have my first real house with a real garden. I want to switch jobs. How can I switch jobs with this going on? Would I ever get insurance if I did? I don’t want to die, not now. Hushed phone calls to people familiar with people who had MS were made. Visions of Annette Funicello, former Musketeer and currently famous as an MS victim, stuck in my head. Hours were spent on mayoclinic.com and any and all MS sites. Reams of paper were consumed printing information on diagnosing MS, fighting MS and living with MS.

And dying from MS. I planned my funeral and told my husband I wanted a closed casket because I was vain and I had never seen a corpse with good makeup or hair. He wisely listened and agreed. Then in consultation with my cousin Mary, I decided to go with cremation instead. Part of my cremains would go with Mom and Dad back in the family plot in Dayton, the rest I didn’t designate. I picked out the eulogizers, the charities for donations in lieu of flowers, and then wondered who would come.

I didn’t want to die. I was in the middle of a middle-age makeover, just another late-blooming boomer looking for some new soil and sun. I was starting to pay attention to who I wanted to be, and accept who I was.

I wanted to be more than an upper-middle management advertising agency executive who knew too much about insect repellent and frozen pizza. I wanted my life work to make a difference. I could be a humanitarian. A scholar. An expert of any kind. Someone people seek out because what I offer informs, energizes, nourishes, nurtures, entertains. Of course, this has been the ongoing desire and struggle of my life, so why should I be given any more time to figure it out? I’ve had a surfeit of opportunity. Familiar prayers went through my head. Our Father. Hail Mary. Glory Be. I couldn’t remember the words to Glory Be and had to look them up.

Dr. Aggarwal, the neurologist, met with me to review the new, dye-infused scan. Interestingly, in his formal written report that I read later, he described me as a 49-year-old right-handed white female. I wondered if this was some type of codified neurological classification. Age, dominant hand, race, gender. Why was right or left important? He must have observed my preferred hand, because I don’t remember him asking. I was taking lots of notes. I always take lots of notes at a doctor’s office.

He was quite pleasant and spoke with just a slight Southeast Asian lilt to his English. Very calming. I passed the basic neurological exam with a report of “alert and oriented.” My pupils “reacted briskly” and “no facial droop or drift” was noted. I could walk a straight line and pass the finger-to-nose sobriety test. He never challenged my mathematical skills or knowledge of American history. Maybe he suspected I had memorized the answers.

Together we viewed the scans on the big light boxes hanging on the wall. Yes, there were white spots on the white matter. No denying my brain was spotty. The good news: The spots were inactive, meaning that whatever they were, they were old. He stated that he thought the spots were related to old viruses. Not MS. Definitely not MS. He also said that my brain looked like the brain of an older person, a 65-year-old. I was not surprised to hear the word “old” but dismayed he used it so many times. The doctor said that there wasn’t anything to worry about (why do doctors even bother saying that) and recommended another scan in six months, which, if done exactly six months from that date would have been one week shy of my 50th birthday. I was cautiously relieved until I read his full written report, where he had elaborated, “The MRI findings are somewhat nonspecific and may represent post viral states or small vessel disease. Other considerations include CADASIL.”

CADASIL had never been Googled so fast. Wikipedia informed me that CADASIL is an acronym for “the most common form of hereditary stroke disorder. The most common clinical manifestations are migraine headaches and transient ischemic attacks (TIA) or strokes, which usually occur between 40 and 50 years of age….” I was beginning to resemble my mother in so more ways than I ever imagined or hoped. I had gone way beyond sharing her black hair, facial features, shape of her fingernails, size 6 ½ AA shoe, 5′ 1/4” height (okay, she was a quarter-inch taller) and love of anything chocolate. Of course, since calming Dr. A never directly mentioned CADASIL I was convinced that he was convinced that was it.

I spent the next six months planning and replanning events, visits, trips and celebrations for my 50th and trying to put Gail Sheehy’s life-expectancy pronouncement out of my head. An ENT and some drugs cleared up the mastoid problem. I stopped staggering in the mornings. For the most part I didn’t worry out loud, and tried not to overreact when I found myself communicating with gestures instead of words. I set the next scan appointment for September, after my birthday, when I reasoned I would be more mature and better able to handle a negative reading. The actual birthday was spent mostly in bed in a fabulous resort with a fabulous summer cold and a new pimple under the bridge of my new trifocals.

One week after the big birthday, while walking home from another friend’s fifty-fest, I fell right out of my pink summer mules on the cracked city sidewalk and broke the fifth metatarsal on my right foot. My husband was walking in the street because, as he said minutes before my fall, “the sidewalk is dark and uneven and someone could easily break a foot.”

I ended up in the ER where, for the first time since turning 50, I was asked my age. “I’m 50 years and one week old,” I said. The doctor started talking about aging bones and calcium. I cut him off and vowed to up my calcium intake.

The last brain scan, seven months after the first one, still showed those pesky high signal white matter lesions, but the doctor said he just suspected they were due to post-viral inflammation and not to worry. For the first time in a long time, I chose not to worry, at least not actively or continuously. It’s not as if I don’t remember I have the brain of a 65-year-old. It’s just that I try to forget. My family history of stroke, heart disease, breast cancer and almost anything else that ails you except for diabetes means I should adopt a few more healthy habits.

My speaking irregularities still arise from time to time, most often when I’m tired or stressed. I still grope for words and ask, “What was it that made me come into this closet?” I’ve accepted this as new-normal behavior.

I don’t believe I have MS or will develop MS. (Knock on wood and never say never.) My doctors say another brain scan isn’t warranted without another episode. But I intend to ask for another one at my next physical for my peace of mind. And for my husband’s. He’s a bit of a worrier. I’m convinced I’m prone to stroke. In anticipation, I have identified the nearest stroke center hospital and ripped out a magazine article that describes the signs of strokes in families, showed it to my husband and then filed it where I can’t find it.  So I went to the Internet and taught my husband to think FAST.

F is for face: ask the person to smile and see if one side droops.
A is for arms: ask the person to raise both arms and check for weakness.
S is for speech: ask the person to repeat a simple sentence. Listen for slurring and memory problems.
T is for Time: call for help immediately if any of the above signs of stroke exist.

I’m not convinced that I’ll live to 92. Not even sure I want to. Mom died at 85, nine years after her first stroke. It was an awful nine years for her and me. Inexorably, she declined into silence and immobility. I grieved the loss of the Mom I once knew. But I’m still not ready to die anytime soon. I’m firmly in the middle of that “how to make an impact” process and am committed to completing it.

I’ve accepted but not given into the fact that I’m 50-something. I may not be able to run a 10K anymore, but I can race-walk it. Sensible heels and ballet flats have replaced unstable high-high heels. I’ve developed personal cooling systems to deal with the flashes and sweats when they force their way in to my life. (Recipe for Ice Pillows: Reduce temperature in bedroom to frosty. Place extra pillow next to bed, bringing it to room temperature, and place pillow on head or body during flash.)
Just last year, on my 53rd birthday, Zoë, my 19-year-old niece, gave me a birthday card that sums up my approach to this stage of life:

We don’t stop playing

Because we grow old;

We grow old

Because we stop playing.

-George Bernard Shaw

She signed the card, “Wise words to describe an awesome aunt.” Not bad for someone with a spotty brain.

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  • Jill January 15, 2012 at 7:23 pm

    Just curious if you had echocardiogram to look for a possible PFO? Your story is so similar to mine & I have been on the MS-Stroke_MS_Stroke wheel for a year now..Good luck to you! x

    Reply
  • Annie February 25, 2011 at 3:21 pm

    To Julie, I met you at my parent’s in FRANCE long ago. You were such a pretty girl, my brother searched you on internet, found you and today I am happy to see you are a glamorous lady. Whatever your health troubles are I just wanted to say “live your life until life leaves you” but live it like a gift and make every day full of happiness. We have not forgotten you and wish you all the best.
    Annie

    Reply