Amazing Race Ain’t Got Nothing on ALS

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The pope, the president and I walk into a bar. Ok, it didn’t go exactly like that but you get the idea. A couple weeks ago we had our foundation’s fourth annual culinary spectacular at Hearth restaurant in New York City. We thought we had the perfect date picked out, after Labor Day but before Fall was in full swing. Unfortunately, we failed to cross check the calendars of two of the most powerful men in the world!

Despite the pope leaving the city and the president arriving to address the United Nations, our event was a tremendous success, despite nearly every other street being blocked off and every hotel room booked. It wasn’t easy — traveling with ALS never is — but thanks to the best team in the world, we made it work.

Our trip started Sunday morning. My girlfriend Elizabeth was double checking every item and making sure our suitcases were perfectly packed. When I was younger and not living with ALS, packing was always a last minute, “I’ll figure it out when I get there” part of the trip. Hell, I once went to Europe, by myself no less, without a single accommodation planned! Boy has that changed.

Due to hotel rates exceeding $400 a night and the general high cost of NYC, this would be a rapid trip to and from the Big Apple. Traveling with ALS requires packing as if we were leaving for a week long getaway. Elizabeth perfectly packs both of our clothes into one suitcase with no issue. It’s all the other crap for lack of a better word that takes so much time and space.

Our second suitcase is full of devices and nutritional/medical materials. I sleep with an AVAP, which is similar to a CPAP. Also taking up space is the suction machine I use throughout the day to get rid of excess saliva. It’s just like what the dentist uses except this particular model looks like it is from WWII and sounds like it’s from a Harley Davidson factory.

Once the machines are secured, it’s time for the good stuff. At least that’s what homeland security thinks. I imagine our bag sets off every red alert possible with its small machinery, all of which has hoses and wires wrapped around it AND a number of different size containers full of white powdery substances. We probably look like Pablo Escobar via x-ray, but we are far less notorious. Those powders are simply protein shakes for my feeding tube.

Once at the airport, the real fun begins. As you can imagine a direct flight from Sarasota to NYC has it’s fair share of wheelchair passengers all fighting to board first. Thankfully my set of wheels usually gets the right of way. I take my chair down the jet way and must transfer into an aisle chair. If you’re unfamiliar with this apparatus, it’s the ice-cold metal stroller-looking machine right outside the jet door.

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I am still able to stand and pivot which allows me to get from my power chair to the aisle chair with Elizabeth’s help and the watchful eyes of usually 3-5 airport/airline employees. Once seated in the world’s skinniest wheelchair, an onslaught of straps seem to come from every direction. Think 50 Shade of Grey but far less sexy.

The chair and my tightly secured body are then rolled onto the plane and down the aisle. Thankfully this is normally a short trip to the bulkhead, as I typically fly Southwest. Unfortunately, Elizabeth and I were a few rows back. This makes a huge difference when it comes to transferring from the aisle chair into my aisle seat. As Elizabeth directs the team of helpers, I look like a deranged killer, only missing the mask and a side of fava beans, my mom is outside the plane preparing my power chair to go into the belly of the plane.

We were first on and able to successfully get to our seats with smiles on our faces. Elizabeth may have set the record for the earliest bloody mary order after take off, but that only helped keep the smiles.

Posted on October 13, 2015 at 10:07 pm

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