A Big Step Forward: Using Public Transportation With MS

As anyone with chronic illness knows, leaving the house requires planning. There’s much more to think about than what’s visible, especially if you’re relying on public transport.

In the days preceding last week’s appointment with my multiple sclerosis (MS) nurse, I was contemplating just how long it’d been since I managed public transport on my own. It took me a while to recall because I haven’t done it since hurricane MS stormed into my life and paralyzed me.

I realized that the last time I’d been on a train alone was at the dawn of my optic neuritis, which triggered the tests that led to my relapsing-remitting MS diagnosis in the winter of 2016. Coincidentally, I’d been taking the train from work to the hospital for another unrelated appointment. I remember standing at the traffic lights and realizing that I could barely see to cross the road. To explain, it wasn’t a sudden onset; quite the opposite. It’d been creeping in slowly over the past month. So slowly that I didn’t notice. My body had simply compensated.

It seemed bizarre to me that it’d been five and a half years since I was on a train. (Of course, COVID-19 has something to answer for there, too!)

Naturally, knowing I would be using the train to get to my appointment last week, I was anxious and apprehensive. I tried to bury the nerves by implementing a lesson that living with MS has taught me: planning. “One step at a time,” I told myself.

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Planning makes perfect

I have been able to be much more independent since moving home last year and being lucky enough to get a mobility scooter, which allows me to attend appointments alone by train or bus, if I wish.

Having not been on a train alone in so long and never needing extra help with accessibility, I first researched the train company. It turns out there is a cellphone application that allows me to choose the journeys I require assistance with. Many options allow me to specify exactly the help I require. In my case, as it was only a 10-minute journey, all I needed was a ramp to board and disembark, but the app would’ve also assisted with luggage should I have needed it.

In my experience, even the most seasoned planner can’t plan for everything. By no means would I call myself a “seasoned planner,” but indeed there was something I overlooked: the accessibility to the platform for my outbound journey from Ludlow station. I think because this is a familiar childhood station, it didn’t occur to me to check where wheelchair access was. I’m glad I’ve learned to allow more time than I think I’m going to need (usually) because the access required me to scoot some 60 meters (about 66 yards) past the station up a hill to go over a bridge to get to the other side.

I rolled onto the platform just as the train pulled in.

Being such a short journey, I stayed seated on my scooter. Had it been longer, I wonder how I would’ve been able to maneuver in such a tight space. There was only space to drive up the ramp into the vestibule and reverse out straight. Well, that’s a question for another time.

During the stifling journey, I pondered directions to the hospital once I was in the town of Leominster, my destination. I may have grown up in the area and been familiar with it, but having to consider sidewalks, curbs, and accessibility is an entirely different ballgame. I’m unable to cross in places that I once could. I wasn’t too worried about timing, as I knew I had an hour before my 10:30 a.m. appointment.

I navigated easily enough to the hospital, albeit slowly since the sidewalks were such awful quality that I worried about my scooter’s suspension. I came prepared for the wait with some neuroscience research papers to study for my degree.

I’d been waiting about half an hour when the crushing fatigue of all the planning hit. Luckily, I’d made a list of things I wanted to discuss; otherwise, I simply wouldn’t have been able to recall anything.

At this point, I was genuinely worried if I had the wherewithal to make the return. Of course, I had no choice, and I did it — although I don’t recall anything other than sleeping for the rest of the day.

My verdict: I’m very proud of myself for doing something I was anxious about, but was it worth it for an appointment that lasted 20 minutes? I’m not so sure.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.