Friday, April 19, 2013

Lucky.

Katie Jennings

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.


Katie Jennings keeps busy juggling a son, a husband, a job, an old house, a bossy cat and unpredictable Vermont weather. She was diagnosed with progressive relapsing MS in December 2012. She blogs about all of it here: http://steadyshegoes.com.

6 comments:

  1. Hi Katie - great post. MS is unique in its outcomes and predictability is just about non- existent. I have been managing MS since 2004 - a daily challenge. I SO agree about those I love and that love me and how their presence in my life is critical and so too my presence in their life is equally critical. I have lost some friends since my diagnosis which is so sad, heart breaking actually. Perhaps they weren't really friends at all. And so it goes......
    Love Gail
    peace......

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  2. I totally agree the small things seem to be so good... life is the little things.

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  3. I totally agree the small things seem to be so good... life is the little things.

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  4. 59f diagnosed 8 years ago, good hours, bad hours....that's how I look at it. Can't get right leg in the car this time? Ask someone walking by, get up close and personal:) It is frustrating in certain situations. My new fabulous female neuro has me on a new vitamin regiment and checks certain catagories often, that's something 3 other docs didn't do. So, good luck to, sound like you have a good outlook, that's half the battle, but be prepared for sad times, too.

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  5. HI Katie, Nice post and I can see from your post you are very newly diagnosed. I like the perspective you have on the disease. I was diagnosed May 11, 1995 at the age of 30. I spent ten years in human subjects research at UCLA and I have always been open about my MS.

    I have to parrot the caution of Arlene. As a peer counselor for the MS society for nearly two decades and as a person who is now relapsing progressive, and who had to end a 30 year career as a high level executive to go out on long term disability in 2011 as my MS became progressive, MS has no luck to it. It's a very sneaky disease I am like you a planner. My advice is to get long term disability insurance if you can. If you are not self employed check with your employer to see if they offer it. Also, be prepared for anything.

    I keep a very positive attitude but that doesn't make a difference when my brain can't talk to my arms or legs. So stay positive but at the same time stay in the moment because MS can literally change your life in a matter of seconds and you never see it coming.

    Wishing you all the best,

    Dr. Roy A. Teel Jr.

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