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
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