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Learner’s Permit

Learner’s Permit

Someone recently asked how long it would take them to get used to having MS because it currently felt like everything was out of control. Those early few months when I was first diagnosed with MS, it certainly felt like I was just along for the ride.  I imagine most of you reading this know that feeling as well.

My neurologist, Aaron Boster, M.D.,  likes to talk about how initially MS is in the driver’s seat- steering us to where it wants to go.  Symptoms, doctor appointments and emotional ups and downs are all driven by the words Multiple Sclerosis. It seems to take a good year or so to learn to live with MS as a constant companion on this road trip.  Slowly, we regain control of the vehicle and take over the driving, and our MS moves over to the passenger seat, but it often acts like the back seat driver – interjecting and interrupting with other thoughts of where to go.  It’s hard to ignore that back seat driver, but not impossible, and even though we hear the MS, we learn to not let it dominate and determine our direction. Maybe we will just crank up the radio and drown out its noise.

Finally there comes a point where you have had enough of MS trying to dominate the trip,  and  you pull over, push MS out of the car and shove it into the trunk.  You might hear a few muffled protests but for the most part for the majority of us, it stays out of the way and we can get on with the journey.  Of course there are times when that trunk pops open and  MS highjacks the driving for a while, but each time it happens we  will have more experience with understanding how to coexist and then regain control.

It would be nice if we could treat MS like a hitchhiker, but unfortunately we can never just pull over and push MS out, leaving it at the side of the road while we drive off happily into the sunset. That unwanted co-pilot can pop back into temporary control when new symptoms emerge or the latest MRI makes us question if our therapy is the right one, but as we spend more time with Multiple Sclerosis and gain experience and knowledge,  we do find it easier to stuff it back into the trunk and regain control of our lives, MS or not.

I often read comments from people who have lived with MS for a decade or more and hear a different tone in their voice –often they are just trying to reassure the rest of us that living a good life, despite MS, is possible. We all go through the time with our learner’s permit for MS  – being in control with MS in the beginning is nearly impossible but with time and experience it is possible to take the lead again.

MS is with us and will always be with us until a cure is found, but as we spend time and learn to live with it, MS no longer remains the driver of our lives.  How long that takes is different for each of us but  almost all of us get to that point where our  MS, no matter what havoc it is creating with our bodies, is no longer in charge.

Wishing you well, Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Penny
    5 years ago

    Laura,
    It never ceases to amaze me how many people are patients of Dr.Bosters lol. He literally aggressively treated my MS to get mine into remission after 2 yrs of nothing but failed therapy and flares. I absolutely think he is the best.Everyone I know in Springfield where I live who has MS is also his patient and unfortunately that list is growing. Great article!

  • Laura Kolaczkowski author
    5 years ago

    Considering about 4,000 people go to the clinic at OSU, I find it very common to come across other people who also know him. I have to confess at times I wish he weren’t quite so good – that way I wouldn’t have to wait so long to see him. LOL!!

  • north-star
    5 years ago

    This is a great analogy, Laura. Different vehicles for different ages, stages and temperament, just like each of us has a different “MS-octane blend” of symptoms, progression rates, and serious issues.

    I also carelessly tossed MS in the trunk of my first Relapsing-Remitting, kind of a sporty little car. Then I graduated to my first Secondary-Progressive, a solid, reliable family sedan that kind of hid my secret. I’m in a Secondary Progressive compact car these days, driving with hand controls and using another set of wheels: a rollator, when I reach my destination. Nothing’s hidden away and, once i gave up feeling dorky, I’ve been okay with that.

    It helps that I have a parking placard, too 😀 Oh, if I own it and it has wheels, it has a cup holder.

  • Laura Kolaczkowski author
    5 years ago

    northstar – I like your changing of models. My husband longs for a Corvette, but neither he or I would be able to get in and out of it – that sedan is our current speed. Ok, the rollator has a cup holder but does it have its own license plate? 🙂
    thanks for the smile, Laura

  • Lowdramamama
    5 years ago

    Let’s see…in 1985, age 25 – I was dx’d w/MS. I IMMEDIATELY stuffed it into my trunk, covered it up with trunk “crap”… and then just continued to drive until 2010, age 50. What I didn’t realize was that the whole time it was “hidden” in my trunk…it was making a mess of my car’s computer system and engine! Now my front seat passenger is SPMS. I NEVER buckle “it” up in hopes it will get thrown out and run over by an 18 wheeler ! 🙂 Thank you Laura for writing about things that are so common to the MS community. It’s reaffirming to read your writings & responses that help me to feel less-crazy than I already am! 🙂

  • zenhead
    5 years ago

    i can appreciate, and be in awe of, people who can put ms into the back seat and get on with their lives. but every time i stand up and take a step, there it is again. when i look out the window at my beloved forest, and remember that i can’t go out there any more, there it is. when i am in the mood to play my guitar, but my hands won’t do it, there it is. when i wake up at 2 in the morning with painful leg cramps, there it is again – front and center. there is a certain amount of acceptance that there are things i can’t do, and i struggle to be in that place. but MS is my constant companion, never allowing me to ignore it.

  • mymultilicioussclerosis
    5 years ago

    Thanks for sharing your story Laura! What a sweet way to describe the denial we are in at the beginning! I can totally relate.

  • NRD
    5 years ago

    Living with MS for several decades, I have to disagree. MS takes control of the vehicle and doesn’t let you even suggest where to go.

  • Margarite
    5 years ago

    I agree that MS gets to be more in charge the longer you have it. I am at the start of my fourth decade with MS and though i am in control of my life, MS is in control of my MS.

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