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Priya Sankaran

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Part 1: My Struggle With the White Man's Disease

Posted: 05/16/2013 2:52 pm

This is the first of a two-part series. Read the second part here.

For the shortest of stints during the spring and summer of 2007 I had a desk on what's affectionately known as "Reporter's Row" in the television newsroom of the CBC's Toronto Broadcasting Centre. I was 33 years old and working the local news beat with the CBC's supper hour news cast. It was a tough, daily grind, hectic and stressful. But I was thrilled to be part of it.


After years of effort and sacrifice, I'd finally achieved a long time aspiration. I was a reporter in Toronto, one of the biggest markets in North America. That desk on "Reporter's Row" symbolized to me how far I'd come; that my hard work had paid off. I loved every crazed minute of reporting those few months. It was a career high.

But then the universe hurled a wicked curve ball my way. On the Tuesday morning after the Canada Day holiday, I tripped and fell in the newsroom, scraping my knee. Forty-eight hours later I was admitted to Emergency in a Toronto hospital. And I learned that something was terribly wrong with my health.

That first week of July was a hot one in Toronto. I had always liked the heat. But lately I had noticing the ultra-cool air-conditioning chilling the office seemed to suit me better than heat.

That Tuesday, the morning assignments had just been handed out to each the reporters filing for the supper hour news cast. Mine was a compelling story about a ten-year-old Vietnamese orphan brought to Toronto for surgery at Sick Kids Hospital. I decided to go to the Visual Resources tape library for some stock footage I would need.

I headed in the direction of the library, but all of a sudden I wiped out and fell to the carpeted ground. I laughed out loud, embarrassed, looking around to see if anyone had witnessed my dive. I also wondered what made me trip? There was nothing on the ground, no extension cord or computer wires. I was wearing a skirt and solid flat sandals. Perplexed, I picked myself up and tried to walk on, but I stumbled again. I moved more slowly and deliberately. And then I noticed my right foot was dragging. No matter how hard I concentrated on lifting it, it wouldn't budge. Either my brain wasn't speaking to it, or my foot wasn't listening to the instruction. For the rest of the way to the Library, I clutched my right thigh and helped lift my foot in order to walk without falling. There was no pain. I wasn't wincing. It was a strange feeling of nothingness. disconnecting my foot from the rest of my leg. I continued awkwardly for the rest of the day.

Later that evening, walking home with a friend from work, I showed her my wonky foot. "That doesn't look good," she said. "Have you been to the doctor?" I told her I'd decided to wait another day. That I'd probably pinched a nerve. I told her it didn't hurt, it was a little tingly. She told me to keep an eye on it. We parted ways. I went home and crashed out on the sofa into a dead sleep. Somehow for the last year, I had needed good rest in a different, almost desperate way. I'd chalked up my declining energy level to the hectic life of a reporter.

I limped around for two days with my draggy foot, trying my level best to not let it mess up my day. I didn't need this sort of annoyance tripping up my stint in the Toronto newsroom. I wanted a career as a reporter, maybe even a chance at foreign assignments.

But on Wednesday evening, walking home with my friend again, she insisted I call Tele-Health Ontario, the provincial service where nurses answer health related questions. The very nice nurse who answered my call went through a battery of questions about what was happening to me. Then, she did it again. Then a third time. The exercise made me a bit giddy. It felt as though she didn't believe what I was saying, like she was listening for me to stray from the story. But at the end of it, she told me to go to the emergency. Any hospital. Immediately. My symptoms might be those of a stroke.

Really? I was walking around, going about my business, albeit with a wonky foot. I was maybe a little tired. But a stroke? Fortunately, I lived right beside Toronto Western Hospital and -- unbeknownst to me at the time -- its expert neuroscience team. I quite literally dragged myself through the ER doors and was formally admitted as a patient. Twenty-four hours later after a CT scan, two MRIs, ultrasounds, blood work, x-rays, and a spinal tap, the attending neurologist stood at the end of my hospital bed, gave me the kindest smile, gently tugged on the big toe of my right foot and told me I had Multiple Sclerosis.

***

What I knew about MS is what I suspect many people living in North America might know. My references were from popular culture. I'd seen an interview, years ago, on Entertainment Tonight with Annette Funicello. A happy-go-lucky Mickey Mouse Club member, Hollywood actress in her youth, later in life confined to a wheelchair struggling to string together a sentence, her body shaking. Funicello had Multiple Sclerosis.

The Multiple Sclerosis Society of Canada says the illness is a complex disease; "unpredictable, affecting vision, hearing, memory, balance and mobility. Its effects are physical, emotional, financial, and last a lifetime." I trolled the Internet for happy ending stories, good news, hope. But every source I Googled left me with a sense of doom. There is no cure for MS.

The MS society estimates that 55,000-75,000 Canadians live with multiple sclerosis. Every day, three more people are diagnosed, which gives Canada one of the highest rates of MS in the world (The disease occurs more often in countries located further away from the equator). Multiple sclerosis can occur at any age but it's usually diagnosed between the ages of 15 to 40 -- the career and family building years. One particular fact threw me for a loop: MS is three times as likely to occur in women, than men and is seen most commonly in people of northern European background. Caucasians.

Why me? I was a Canadian citizen. But my genes were Indian. Or so I believed. Could one of my ancestors have had an affair with a Brit during England's rule over India? Someone from Portugal? France? Both my mother and father's familial lines traced back to small villages at the very southern tip of the country, where all three colonial powers had ruled at one time. Might my illness reveal a family secret?

There was a puzzle here. In the battery of tests and investigations that went into making the diagnosis at the hospital, one question in particular seemed to hold hope for the doctors, held out the possibility that they could rule MS out. "Where were you born and when did your family immigrate to Canada?"

One of the prevailing theories about MS suggests if a child older than three immigrates from a place of low risk, such as India, to a place of high risk, such as Canada, the child will retain immunity to the disease common to the parent's country of origin. The doctors must have assumed I was born in India, close to the equator, meaning a country with a low risk of MS. But my parents immigrated twice: First to Germany, specifically Hamburg where I was born, then to Ottawa where I grew up. My family and I quietly wondered if we'd never left India, would I have MS? In the days and weeks following my diagnosis non-white friends, even my childhood pediatrician who was Indo-Canadian, wondered how it was I'd come down with what many considered to be a "White Man's Disease."

By the end of the summer the initial diagnosis (Remitting Relapsing Multiple Sclerosis) was confirmed by the neurologist who would become my MS doctor at St. Michael's Hospital.

I had another attack. It affected my speech and the grip of my right hand. I still have the sheet of paper with scribbles of my signature written over and over again. I woke up morning after morning hoping the ability in my hand had returned. But for two weeks or so I was unable to mimic my familiar signature. My tongue was heavy in my mouth, slurring my speech. It felt like MS was attacking the tools of my trade. A journalist who can't jot down thoughts on a note pad? A reporter who isn't able to enunciate? It was a blow to my psyche. My normally outgoing personality and gabby nature were subdued; I was shocked, intimidated and stripped of confidence. I had absolutely no control over what was happening to my body.

By autumn the attack on my nervous system had waned and my handwriting, speech and walking were back to normal. But I knew from what I'd read that the next attack was just around the corner. I sunk into a mild depression. My doctor reassured me that what I felt was normal given the circumstances. He called it a "life adjustment" and prescribed six months sick leave. As winter arrived, I was still scattered, troubled and sad. I lived in fear of the "what if": what if I suddenly lose my eyesight? What if the foot drop comes back or, worse, stays? What if my speech becomes slurry permanently? My parents thought a change of scene might help my mood and suggested I go visit my family in India.

This story was featured as a radio documentary on the Sunday Edition.

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  • Ann Romney

    Republican Presidential candidate Mitt Romney's wife's MS is central to his campaign. They often discuss her 1998 diagnosis, as well as how she <a href="http://abcnews.go.com/Health/ann-romneys-ms-highlights-unpredictable-disease/story?id=16221663#.T99GaytYvJV" target="_hplink">managed the disease while raising five sons</a>, ABC reported. <br><br> But she recently had to take a break from campaigning when her symptoms were aggravated. "I start to almost lose my words. I almost can't think. I can't get my words out. I start to stumble a little bit and so <a href="http://www.etonline.com/news/121147_Ann_Romney_on_Recent_MS_Scare_on_Campaign_Trail/index.html" target="_hplink">those things were happening</a> and I thought, 'Uh oh, big trouble,'" she said in an interview with Entertainment Tonight.

  • Montel Williams

    The Daytime Emmy award-winning talk show host announced his diagnosis in 1999, and he started the <a href="http://www.oprah.com/health/Montel-Williams-Battle-with-MS-Overcoming-Depression-and-Pain" target="_hplink">Montel Williams MS Foundation</a> to raise money for research into the disease. <br><br> His <a href="http://www.oprah.com/health/Montel-Williams-Battle-with-MS-Overcoming-Depression-and-Pain/3" target="_hplink">main symptom is pain</a>, he told Dr. Oz on an episode of "Oprah." "I've got pain from my shins to my feet, 24 hours a day, 365 days a year, and it's been there for the last 10 years." Then the pain spread to his face. "It literally feels like you're taking a fork and stabbing me right now. People say, 'How the devil do you deal with this?'" he said. "You have to get a grip."

  • Richard Cohen

    The Emmy award-winning journalist and husband to Meredith Viera <a href="http://www.usatoday.com/news/health/spotlighthealth/2004-07-07-cohen-spotlight_x.htm" target="_hplink">first learned of his diagnosis in 1973</a>, but was reluctant to speak up about it, he told <em>USA Today</em> in 2004. "I always resisted being defined by my MS," he said. "That's why I was obsessively secretive about it in the early years. It never dawned on me that people thought I had a drinking problem. Police even followed me home a few times thinking I was under the influence."

  • Richard Pryor

    The comedian was first <a href="http://www.usatoday.com/life/people/2005-12-10-richard-pryor-obit_x.htm" target="_hplink">diagnosed with MS in 1986</a>, and eventually became debilitating enough to drastically affect his work,<em> USA Today</em> reported. <br><br> He died in 2005 of a heart attack at age 65.

  • Teri Garr

    The actress, well known for her roles in "Young Frankenstein" and "Close Encounters of the Third Kind" was diagnosed with MS in 1999, <a href="http://www.rd.com/health/actress-terri-garr-battles-multiple-sclerosis/" target="_hplink">after 16 years of symptoms</a> like tingling, tripping and stabbing pain, according to <em>Reader's Digest</em>. <br><br> She <a href="http://www.everydayhealth.com/multiple-sclerosis/teri-garr.aspx" target="_hplink">spoke out publicly about the disease in 2002</a>, according to Everyday Health, becoming a pair spokesperson for an MS medication and a National Ambassador for the National Multiple Sclerosis Society, and advocating for research and education.

  • Tamia Hill

    The singer and wife of NBA player Grant Hill opened up on "Extra" in 2005 about <a href="http://telepixtvcgi.warnerbros.com/v2/news/0505/27/3/text.html" target="_hplink">her diagnosis nearly two years before</a>. "I went from being physically active to not being able to get out of bed," she said. <br><br> But she knew she had to push through and <a href="http://www.nationalmssociety.org/online-community/personal-stories/tamia/index.aspx" target="_hplink">speak up about the disease</a>, she said. "I just felt it was important to get it out there and let people know it's not a sign of weakness. You have good days and bad days."

  • Clay Walker

    The country musician was <a href="http://www.nationalmssociety.org/online-community/personal-stories/clay-walker/index.aspx" target="_hplink">diagnosed in 1996 at the age of 26</a>, according to the National Multiple Sclerosis Society, after losing feeling in his right hand and leg. <br><br> Through mediation, diet and exercise, he has regained feeling, continued on in his music career and worked to raise money and awareness of the disease. He was <a href="http://www.nationalmssociety.org/online-community/personal-stories/clay-walker/index.aspx" target="_hplink">named Ambassador of the Year</a> by the National Multiple Sclerosis Society, only the fourth person to receive the distinction in nearly 60 years.

  • Alan And David Osmond

    Alan, entertainer and producer (and brother to Donny and Marie), noticed he was tripping on nothing while he was on stage in 1987 and was <a href="http://www.nationalmssociety.org/ms-awareness-week/alan-osmond/index.aspx" target="_hplink">diagnosed with MS</a> a few years later, he told the National Multiple Sclerosis Society. <br><br> His son, David, known for his turn on "American Idol," was <a href="http://www.nationalmssociety.org/online-community/personal-stories/david-osmond/index.aspx" target="_hplink">diagnosed in 2006</a>, and says one of Alan's favorite sayings -- "I may have MS but MS does not have me" -- keeps him performing. <br><br> <em>Photo: Left to right: Alan, David and Donny Osmond</em>

  • Joan Didion

    The writer, who <a href="http://www.independent.co.uk/life-style/health-and-families/features/lsquothis-is-what-ms-looks-likersquo-2122567.html" target="_hplink">detailed her diagnosis in "The White Album,"</a> told the <em>New York Times</em> she went <a href="http://www.nytimes.com/1979/06/10/books/didion-calif.html?pagewanted=3" target="_hplink">blind for six weeks</a> due to the disease.

  • Michaele Salahi

    The "Real Housewives of Washington D.C." star revealed a <a href="http://www.foxnews.com/entertainment/2010/09/15/exclusive-michaele-salahi-says-multiple-sclerosis/" target="_hplink">17-year battle with MS</a> on a 2010 Fox appearance. She said she hoped to use her fame to help others.

  • Michelle Obama

    The First Lady <a href="http://news.yahoo.com/blogs/cutline/michelle-obama-letterman-isn-t-oprah-where-laughs-231917424.html" target="_hplink">spoke about her father's multiple sclerosis</a> on a recent episode of "The Late Show With David Letterman." "I never knew him to be able to walk, but my dad worked so hard and he loved us so much," she said. "I think from him I learned just absolute, complete unconditional love, the notion that kids really don't need anything but to know that their parents adore them."

  • J.K. Rowling

    The author's mother passed away in 1991 after a <a href="http://www.people.com/people/article/0,,1147497,00.html" target="_hplink">10-year battle with MS</a>, People.com reported. She said that her greatest regret is that her mother didn't live to see the wild success of Rowling's Harry Potter series.

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