THE BLOG

I Am Not Free to Move About the Cabin

02/23/2015 08:08 pm ET | Updated Apr 25, 2015

We have all been there before. White knuckles wrapped around the steering wheel, constant glances at the clock, turning down the radio while you go over your mental packing list. That frantic ride to the airport, the one that began fifteen minutes later than originally planned. We love that moment of relief that happens the moment after the airport is in sight; a sense of "we made it" is short lived because we know the journey has just begun.

The daily life of ALS is constantly filled with challenges for everyone involved. It is not just me, the patient (I hate that word), but for everyone around me. This is never more true than when travel, especially air travel, is on the horizon. If caring for someone with ALS was like juggling, caring for someone with ALS and traveling would be like juggling while riding a unicycle on a treadmill.

Thanks to my acrobat-like girlfriend and a group of dedicated friends, I was recently able to travel to NYC, the city I called home for almost seven years. The trip was the perfect blend of business and pleasure. We had a jammed packed itinerary, but the highlights were a A Life Story Foundation meeting with our NYC chapter and a dear friend's off-Broadway premier.

A late morning flight out of Milwaukee meant a relatively calm start to the trip. That is only because I am leaving out the hours my girlfriend spent packing the night before. Remember, she is not just packing for herself (a challenge within itself), she has to pack my clothes, medications, equipment, and enough food for my feeding tube to last for four days.

I used to scowl at the family of five trying to maneuver their way through the security line with their car seats, baby bottles, and what seemed to be more little shoes than there are feet. Let's just say I kindly smile at them these days. After Betsy (the girlfriend) explains why she has bottles of water and Boost cartons and I am done getting felt up by the TSA agent, we are off to our gate.

If there is one good thing that comes with ALS it is being able to board the plane before everyone else. Before ALS I was a frequent traveler and typically avoided Southwest Airlines because I hated the "cattle call" boarding required. However, now I fly Southwest exclusively. Their customer service from the ticketing desk to the ramp operators who are responsible for handling my 250-pound wheelchair are always incredibly kind and professional.

Once our boarding passes are scanned, I zip down the jetway and say goodbye to my wheels as Betsy helps me with the short walk to the first row of seats. Once I am seated, she reclines my seat and puts on my foam neck brace, then scampers back to the chair to take off the headrest and seat cushion, both of which are very important and could be easily damaged in the cargo hull.

Imagine that feeling of anxiety and that increased body temperature that occurs when you trying to secure your items in the overhead compartment. Standing in the aisle, people looking and wondering why you are moving so frantically, all the same while all you want to do is sit down and get this plane in the air!

As the jet taxis to the runway, Betsy has her hands on my forehead so my head does not fall down due to the weakening of my neck muscles. We always get nice smiles and small talk from the flight attendants who are seated a few feet in front of us. There is no better sound than the intercom bell that indicates we have been cleared for takeoff. It is not the excitement of the destination, it is actually the speed that the jet hits in order to take off, the "g" forces gently press my head against the seat until the moment we land in the Big Apple.

By the time we are "wheels up", I think we are already on hour five or six of the trip. That seems excessive for an hour and a half flight, doesn't it? But that, unfortunately, so is traveling with ALS.