The opposite of being alone

Last Thursday morning, I flew to Los Angeles for the long awaited meeting with my mastsister Addie and her family. I arrived at Logan Airport two hours before my flight. I have flown seven times in the last year so I am overly familiar with the routine. I carry on one suitcase with medical supplies and clothes, a laptop bag with my computer and my backpack that holds my IV supplies and infusion pump. I carry a letter from my doctor stating I need these things when I travel; aside from the fact that the large fluid bags are always swabbed for explosives, it is never a problem.

I was deposited at the gate almost an hour before my flight. Anytime I book a flight, I call the airline to reiterate that I need to infuse while I fly. They always seat me in the first row so there is more room for people to navigate past me when leaving the row. I have been advised that since the IV line is attached to my body, the FAA views it the same way as an insulin pump, and that I just have to hold it in my lap while we take off and land.

The gate agent came over and began asking questions about my backpack and IV fluids. I told him that it is attached to me, showed him the bag and pump, provided my letter. He and his supervisor made several phone calls and peered at me from behind the counter while talking about me in hushed voices.

The man came back over and asked if I had a fit to fly form. Most of the flights I have taken this year were with this same airline; I took two flights with them just over a month ago. I have never been asked to provide this form and would have gotten one had I been told to.

They continued calling people. I was now the only person not boarded and getting pretty irritated. I walked over to the counter and asked them what was going on.

“If you need IV fluids, then our medical team says you can’t fly,” he told me.

I explained that I had done this several times in the last year and had a note from my doctor that says “Lisa needs the following medications on her person when flying” which would obviously not have been proffered if I couldn’t fly. I explained about my disease and that I have lived with it for a long time and was fully capable of handling any symptoms. They decided I could board the plane but stopped me feet from the plane. The pilot came out and asked further invasive questions about my health and about my IV fluids, which had already cleared security. (In case you’re all wondering, the answer is that no, my IV fluids are not explosive.)

They let me board and the entire population of the plane stared at me while the crew discussed whether or not I was, in their estimation, healthy enough to fly. With their exchanged looks, I felt my personhood being stripped away. All that was left was a complication.

I keep thinking about that other life, before I looked sick enough that a gate agent felt entitled to ask me deeply personal questions about the state of my health. I did so many things. I went to a lot of places. I was able, physically and mentally. And now I’m… not able? Unable? I don’t know what I am, but whatever it is, I’m not the same.

It’s hard to live in the present sometimes. It’s hard not to compare everything I do to a previous iteration that came before I got sick. I can feel myself walking backwards, covering every step I took to get here, trying to find the moment when my fate was sealed. I wonder if I had known back then what was wrong if it would have made a difference. I wonder if I would still be this way, if I would still be unable.

I landed in Los Angeles six hours later without so much as a mast cell hiccup, my infusion pump clicking along happily. Addie and I compared ports and medicines and discussed Frozen at length.  We camped at Newport Beach this weekend and met up with some other masto friends. Ten people with mast cell disease on a beach by the bay, looking for dolphins in the evening light. Ten people with mast cell disease swimming and accessing ports and taking Benadryl and listening to coughs and eating smores. It was calm and breezy and safe. It was the opposite of being alone.

Me and Addie

 

2 Responses

  1. Mark Beckwith May 4, 2015 / 7:50 am

    I am so sorry to hear this happened to you, Lisa. I hate to think it would have been an act of My Favorite AArline but I suspect the chances are good. Today I am writing with my patient advocate hat on (my day job). I agree completely that these were egregious acts on the part of the airline, and wanted to let you know this (pretty much exact same thing) happened to one of our constituents only about a year ago. Besides the obvious (WTF were all those various airline professionals thinking?), which I think we agree on, I wanted to let you know that in this other case, when called on it, the airline was quick to settle for a cash settlement. Which I think means you have a good lawsuit on your hands should you choose to pursue it. Our constituent family was not interested in suing the airline, so they took the money.

    I have found that airline people and TSA people, for the most part, fundamentally are eager to please. They understand that without you they would not have a job, etc. But every once in a while you get a lineup of relative idiots and it becomes a comedy (or tragedy) of errors. Like your day, for instance.

    When my (then 14 year told) daughter had part of her brain removed to relieve the symptoms of her neurocutaneous melanocytosis (my day job again), she was concerned that the 21 metal fasteners in her skull “would set off the metal detector,” and she “wouldn’t be able to fly anymore.” I took the opportunity to show her how one may not get what one does not ask for, and we arranged a (homeschool) field trip to the airport and met up with TSA brass to learn the answer. Of course, the fasteners are titanium and non-magnetic, to wit the 3.0 Tesla MRI she had after her procedure, and she has always passed through airport security since without a problem.

    If it were me, Lisa, I would pro-actively contact the airline, have the conversation, and get a letter from them, in addition to all your documentation from your doctor-side (and also that “fit to fly” nonsense). Ideally you could wind up with the airline’s Director of Customer Relations’ private cell phone number in your speed dial. In fact, when you grind them to settle, you could make that a requirement. I think they are going to want to work very hard to help you recover a good feeling about their airline and your experiences with them. You are sitting on a powder keg they will work hard to not let go off if they can help it.

    Do please let me know if you need any help.

    • Lisa Klimas May 4, 2015 / 9:56 pm

      Thanks for this, I appreciate it. I will be calling them when I get home and may reach out to you as this is not something I’ve had an issue with in the past. On the positive side, I stayed calm the entire time, so there is no chance that they could chalk it up to something behavioral or whatever. I fly this airline all the time and have never had an issue, so I’m going to assume it was the result of several missteps on their part, and give them a chance to fix it. My experience with them has always been great so I don’t want to start over with a new airline.

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