Tuesday, March 8, 2011

What Does MS Equal To You?

MS = a twisted roller coaster, spiraling and without brakes.

I can’t recall the last “real” roller coaster I rode.  Honestly, I’m trying to rack my brain.  Was it during a visit to Disney World in 1985?  Or could it have been in a car driven by a speed demon? (That would be a figurative roller coaster, of course.)

During one ride, the anticipation and excitement about being strapped into a seat and allowing your body to be whirled through the air is intoxicating.  During the other ride, eyes are closed, feet are trying to push the imaginary brake pedal in the passenger seat, and the adrenaline rush is exhausting rather than exhilarating.  (Can you tell I have vivid memories of a car ride which scared the living daylights outta me?)

Living with multiple sclerosis is a bit like a roller coaster ride.  Many different and ever changing roller coaster rides, in fact.

When first diagnosed, I think that the roller coaster is ridden in total darkness.  You can’t see what obstacles, loops, twists, or drops are to come.  The fear of the unknown can be overwhelming and you just want someone to turn the lights on.

When living with MS for a little time, you begin to see patterns which repeat.  You get to know your own roller coaster track.  If you have relapsing-remitting MS, this analogy may sound very familiar.  Perhaps each relapse is like a separate ride which eventually comes back to rest.  However each experience changes you a bit and you can never really go back to being a coaster ride “virgin.”

Dealing with life with MS can be an emotional roller coaster as well.  You may have learned about the “stages” of grief which can generally be applied to dealing with a new diagnosis - shock, denial, anger, bargaining, guilt, depression, detachment, acceptance.    Of course, no one has to go through these stages in any organized fashion.  There are no hard and fast rules. 
I have found each reminder that MS is a companion who will not leave sends me out on the roller coaster once more.  It doesn’t matter how many times I’ve ridden the ride, or how well I know that I will never truly fall from the rickety supports, or that I will once again learn how to live with the new post-ride me.  I still get strapped in for a bumpy ride complete with anger and tears, sadness and guilt, and finally resignation to the new normals of life with MS.

A third type of roller coaster which I envision is the one where you can see the rides of other travelers on this MS journey.  Your initial coaster may be like the gentle teacups which swirl in circles.  As you learn more about the disease, you may begin to see what types of rides others experience.  Maybe somebody else has graduated up to a wicked tower of a ride, complete with loopdy-loops and straight drops.  You know that you might be on that ride also at some point. 

It can be frightening simply knowing what others experience.  Knowing what you might experience.  Knowing what you have experienced and may again (or always).  This knowledge is a type of anticipation which no patient or medical professional wants to burden you with, however “knowledge is power.”  It seems better to know what the possibilities are rather than always riding with your eyes closed.  Right?

No matter what the ride entails.  Know that we do not have to ride alone.  Others have come to the amusement park with us.  Our friends, family, loved ones, caregivers.  And, honestly, we (those who live with MS) do not have exclusive access to the park.  People living with other chronic and acute diseases may be there as well.

In fact, life itself is like a roller coaster, never completely flat nor static.  We each move forward (whether we intend to or not) eventually.  Perhaps we have a bit of control over which ride to take, choosing to become the strongest and healthiest we can be, choosing to open our eyes and face the monster down, choosing to let another person take the seat next to us.  Choosing to never go this journey alone.

MS = a journey to destinations known and unknown

MS = a community of travelers who support each other

MS = the reason I am here, right now, reaching out to myself


  1. Since I have always liked riding on roller coasters can I substitute Bumper cars...they sneak up behind you and smash into you when you aren't ready and then there is that bad moment when you car stalls - duh!

  2. You have reached out to me! Thanks for the info, it is comparable to a roller coaster ride....

  3. Roller Coasters frightened me, well into adulthood! So it's a good analogy, being that I'm often living in fear for what MS might do next. Thanks, Lisa.

  4. ah, bumper cars. I never did like the jarring crash those would cause. I think they could be substituted.

    Ja, the fear of the future is a biggie. No matter if we see the big drop coming, it is still just as scary. I guess I'd rather know where the twists and turns are (but then the course will certainly change). :)

  5. Well stated Lisa! As a fellow traveler on the MS roller coaster I have to say that you are so right in your assessment of our situation.

    I usually limit my reading of MS blogs because I find all the suffering unendurable. However, I visit your blog regularly because you have such a can-do attitude about it all.

    Thank you for sharing your thoughts and insights.

  6. What a great analogy, Lisa!

    I feel sometimes like I'm on my own roller coaster ride in my search for diagnosis, but you really helped me see what some of the individual experiences with MS are. Thank you!

  7. Well said, MS can be like a roller coaster ride. I like to call it my "Every Other Day Disorder", a day of activity a day of rest. It can be quite irritating.
    MS=More Steph for me....More stuff I (Stephanie) must deal with.

  8. Thank you Lisa, for expressing the ride so accurately and succinctly!

  9. I have enjoyed everything you have written and done. This post is no exception.

    Particularly I have enjoyed the videos on http://www.howifightms.com/ .

    For me hearing someone speak about this disease made my diagnosis easier. When I would read anything about MS, I'd get really sick in my stomach - which is an awful lot like your analogy.

    For me, I have found that with MS, I must = DFTBA. It's "Don't Forget To Be Awesome." I have felt the old me drift away. The new MS me is a mix of sick, down, and less capable than before. But, there is the awesome me in there somewhere. Each day I repeat the DFTBA mantra to myself to remember to show my awesome. The people around me each day miss the old me as much as I do sometimes, I need to fight to bring it out.

    Thanks for all you do Lisa.

  10. This comment has been removed by a blog administrator.

  11. Thank you for all of the great comments. It's wonderful to meet many new readers.

    also - "Don't Forget To Be Awesome" - that is great!! It means a lot that you have found my blogs and videos helpful. Very important to know that we are not alone on this journey.