My Diagnosis and Other 20 Year Old Tales

Why is it that I’ve been blogging for more than a year and until now, haven’t discussed my diagnosis? As I struggled to complete this entry I realized it wasn’t a time I care to revisit in such great detail.

Far be it for me to leave anything unsaid!

I bring you to 1988. A time before email, Google and Amazon, before texting and ichatting with people all around the world and selling them your priceless “junk.” Before we had access to watch two Chinese boys lip-syncing the backstreet boys in their dorm or the dancing guy traverse the continents.  It was a time when “vinyl discs” were known as records and sold on main street and the only Bush was the VP running against Michael Dukakis in the election that was my first opportunity for a presidential vote. It was also the year I moved from my teens to my twenty-somethings. Little did I know at the time, it would be a year I would be recounting ever since.

Entering my third year of film school after transferring to Baltimore from the College Park campus of University of Maryland, I had made plans to live with my friend at Johns Hopkins before finding a place for myself in the Baltimore suburbs. The chaos of this change was dimmed by the changes of the 3 years prior. Just back from a teen trip to Israel, I learned that my parents were divorcing. My mom moved out of the house over the next year and ultimately to Florida before I graduated high school. So by 1988 I had made it through two years in college without much in the way of parental guidance. In fact, the only reason I was at University of MD was because my friend sent me an application. Any help with big decisions from my parents had evaporated.

I was in NJ for the weekend visiting a friend when I woke up with half of my body numb and tingly. The feeling divided me in half running right down the middle of my face and the center of my abdomen. It immediately struck me as a brain issue. I had taken psych 101 during that Spring semester and spent a lot of time studying the hemispheres. I couldn’t imagine how sleeping wrong could result it this sort of experience… but I tried to shake it out none-the-less. As the morning progressed the sensation remained, so I put a call in to my GP. I went to see her and she did  a standard exam, finding no obvious cause for this symptom. After some blood-work, she told me to call if there were any changes. I did just that when the tingling got stronger and she met me at the hospital.

So there I was at JFK Medical Center, the hospital where 19 years and 362 days earlier I was born.  During this visit, I was prodded and poked in unfamiliar ways that are now ritual. Because my dad was in Miami at my sister’s high school graduation (she moved down with my mom) the only family in town was my older brother. He visited me and proved that the meal I wasn’t eating was pedestrian-worthy by finishing it himself. (lol) Not what you would expect of hospital cuisine.  It’s funny how 20 years later that point sticks with me.. yet I can’t remember which tests were performed! I guess that’s what stands out for a 19+ year old.

Anyway, this hospital stay found nothing and they released me so I could go get an MRI. I remember that first MRI with great clarity. Having never had this type of scan before- heck, I had barely heard of it, the whole thing seemed space age! What would become an annual ritual was very dramatic this first go round — though as I remember the procedure it seems comparably archaic.  I had to lie down and stay still in a tube within a huge magnet.  No mirror, no relaxing music, no “open air”  The banging sounded more like metal on metal than the thudding of today’s model. Yet it still felt cool. How cutting edge, how hi-tech, and within hours an inside look at my brain was available to my newly assigned neurologist.

And that is where we sat on June 21st 1988- my 20th birthday when he pointed with a pencil to the lesions on my brain scan that were evidence of the MS . He followed that up with “Don’t get too hot, or stressed out because that makes it worse” and thus was the end of our meeting. I went from feeling fine one week to having an incurable disease the next. I learned very quickly that this is not the typical diagnosis story. What takes years for some, happened overnight. I’m not sure which is better, I suppose they each have their pluses and minuses. Whatever the case may be, I had been diagnosed with MS and needed to learn what that meant.

So I went back to Baltimore– with no family, few friends, and a little support that could only be accessed by phone –  I forged ahead with a new title stamped on my forehead and a list of questions. Questions that no one could answer.  What was going to happen to me? Would I make it through college? Would I be able to work? Who would I be as a person who had this disease that guaranteed me an uncertain future with a lot of frightening options…  It was hard to find something to feel good about.

Everywhere I looked for more information to help me better understand this disease only scared made me more. With no Internet and few resources, I called the MS Society in Baltimore. I was sent a big packet of information to read through. Unfortunately it only made things worse. The big answers I Ionged for weren’t there– What was going to happen to me?  How on earth would I deal with this- whatever this is?

~~~

 

It was a challenging time in so many ways. In retrospect however I realize that it was the beginning of something big — something bigger than myself at that time. These details are the beginning of what would become an empowering lifelong story that is thankfully still in progress. I believe that MS has shaped my character in significant ways. My ability to cope continues to amaze me as my disease course is always evolving… creating roadblocks in my effort to accomplish what life offers me. But I know, no matter how challenging the symptom is, I will persevere. I wish I could have had a glimpse in 1988 of the person I am in 2008. It would have been very reassuring.

Things have changed a great deal for individuals who are being diagnosed with MS today. There are now a number of disease modifying drugs that have proven to slow the progress of MS and there are many new ways to help patients to cope originating in the neurologist’s office, the MS Society and in some cases on the web. Yet my early experiences with researching MS have only magnified in the age of the Internet-  a time when too much information can easily overload the newly diagnosed or lifelong learner with Multiple Sclerosis. In response to that, I’ve designed a learning approach for the web to address those issues – that once developed with fill the gap in learning that exists for people who need to learn about their health in a way that doesn’t increase their anxiety. If you are interested in reading more about it… clickhereor here.

So, if you are looking for a pick me up, check out my other entries for a lighter read. I usually require a little more humor before I hit “publish”.  And if that doesn’t work, there is always the two chinese boys lip-syncing the back street boys orthat guy dancing all around the world.They always make me laugh!

Thanks for reading~

 

 

6 thoughts on “My Diagnosis and Other 20 Year Old Tales

  1. Abby says:

    Hi Amy, I’m here from MerelyMe’s post. This post about your diagnosis is almost the same as it was for me. My diagnosis was officially given to me on Sept 10 of this year, but all of a sudden the right half of my body went numb at the end of July, from the neck down. Like someone drew an imaginary line down the center of me and pronounced numbness to the right half. Scary, so I know just how you feel! I will come back and read more, and I’m also going to add you to my links.
    Take care!
    Abby

  2. Lisa Emrich says:

    Amy,

    It’s so good to see more blogging and to hear the beginning of your story. The first time I went through an MRI machine was 1993. We were looking to see why I had had trouble with my eyes and continuing headaches. Basically, it was to rule-out a brain tumor. Man, I wish I had those films and a copy of reports. But I don’t.

    The MRI machines I use now still don’t have cool music or anything. There is a little mirror but since I can’t see 2 inches in front of my face without my glasses or contacts, the mirror is useless to me. And I dont’ even know what an open MRI would be like. Oh well.

    I really do need to spend some time looking into your project. Talk to Margaret about Alice Kreuger and Second Life. Seems that might be another place to put MS-SoftServe.

    BTW, very nice interview and write-up that Merelyme did. Thumbs UP.

  3. Thanks for sharing this story. I also was diagnosed with an MRI right after my symptoms appeared. I too had always been healthy. Lucky for me I was diagnosed in this information age and I realize that MSers are like snowflakes, all different but with some commonalities. I am also lucky to have resources like you to turn to. Nevertheless, MS really does change your life…

  4. Jodi says:

    Although my 1988 lacked an MS diagnosis, certain details of your post not directly related to MS are eerily familiar to me in more ways than one: “Just back from a teen trip to Israel, I learned that my parents were divorcing.” The juxtaposition of how parallel yet different our lives were that year is striking to me, even (or maybe especially) 20 years later. I guess there is more that I could say here, but I will leave it at that. My head feels muddled now thinking of those years, and that summer.

    Thanks for sharing more of your story.

  5. Mitch says:

    Trust me, I was there to visit and support my sister, not for the cuisine.

  6. Herrad says:

    When I saw the neurologist for the MRI results in July 2006 we waited for one and a half hours and then in five minutes were told that I had primary progressive MS and not to look it up on the internet.

    I should wait til the next appointment when he would give me all the information on MS. Within minutes we were back in the hall, stunned, shocked and both crying.

    The neurologist had not shown a shred of sympathy or compassion nothing
    Months later the same ‘kindly’ doctor gave me a ten years out of date book to read.

    Luckily we had looked it up right away and had not waited for the doc to tell us.

    Cheek of the man telling me to stay ignorant, and a very unpleasant man who was publically even nasty to his own colleagues.

    Luckily I was sent to another hospital for a second opinion, finally saw the Professor
    in December 2006 and got sent for another set of MRI’s in March 2007 they were not ok and had to redone finally happened in June and after various hitches the good Professor told me in the autumn that I had abit of MS abit?!

    I could not walk and already needed carers to wash and dress me and help me go to the toilet. A bit of MS!!!!!!

    In January 2008 saw the Professor for the last time he was obviously not a happy man as he could tell me nothing about the course of my MS.

    Then I had to see the first neuro again last April, by then I was fulltime in a wheelchair and he actually asked me how I had managed to get into a wheelchair so quickly!

    Don’t see any neurologists anymore as there are no drugs for me and they can’t make a diagnosis something that makes them nervous and unhappy.

    My GP is good which is a bonus, she is very supportive of me and Richie and it’s good to be able to talk with her.

    And Richie looks after me wonderfully well he keeps me happy despite being in bed since 21 August last year because of a nasty pressure.

    Will look in at your blog regularly, going to add you to the link list.
    Take care.
    Love,
    Herrad

    Ps came via Lisa’s blog
    Richie’s blog is
    http://screamingrichie.blogspot.com/

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s