When Achilles was an infant, his mother was told that he would die young.  She carried him to the River Styx, the dark water that separated Earth from the Underworld, and dipped him in its waters to make him impervious to harm.  Achilles grew up without fear of injury until a poison arrow landed in his heel, where his mother had held onto him many years before.  He died and became a warning – there is always a weakness, no matter how strong something seems.

I have an Achilles’ heel, and it is airports.

Since July 2014, I have travelled by plane to the following places: Seattle, Colorado, Orlando, Los Angeles, Hong Kong, Beijing, and Colorado again.  I talked to lots of people who are more intrepid travelers than I am and got their advice.  I talked to my doctors.  I got all the paperwork and all the notes. I organized everything and made sure I had enough meds, port supplies, ostomy supplies and safe foods in case we got diverted or delayed or cancelled.   I called the airline the day after booking tickets several weeks before travel.  They were always very courteous and attentive and assured me I would not have any trouble.

The problem happens at the airport.  Specifically, it happens at the check-in counter.  I always ask for a wheelchair to meet me at the counter because while I am certainly much more stable than I was a year ago, standing up, especially in one place, pulling heavy things, is not my strong suit.  So I get to the counter and identify myself and ask for the wheelchair.  Then, while we are waiting for the wheelchair to come, it happens.

They tell me I can’t bring on my two luggage containers of medical supplies and insist that they will make me gate check one, and also that my bag holding my infusion pump and medication WHICH IS ON AND ATTACHED TO MY BODY counts as my personal item and has to be stowed overhead.  So I can only take half of my medical supplies and the bag with a line pumping medication to my body has to go in an overhead bin that will close on the line.  And so it begins.

The last eight flights I have taken were with Popular American Airline That I’m Sure You Can Guess.  I like Popular American Airline for a few reasons: their seats are bigger, they understand that I have a legitimate need to have more space (to juggle IV meds), they eventually agree that it is impossible for me to stow my pump because it is attached to my body, and they have movies and Wifi.  I pay more to travel with Popular American Airline because once I am on the plane, I generally don’t have huge problems.  I expect to get questions, I expect for people to not know things, that’s fine.  But once we have a brief exchange, they agree that what I was told by their disability services people is accurate and I have a pleasant flight.

That is not the case with the people at the check-in counter.

I have been told many tales by the people at the check-in counter: that I cannot bring all of my necessary medical supplies onboard (which is not true); that I can only bring one medium sized piece of luggage with supplies; that I have to bring multiple small pieces of luggage with supplies; that I can bring one small piece of luggage and then the rest have to be in “compressible” bags; that I can bring one small piece of luggage and it has to meet the weight limit; that I can bring one small piece of luggage and it doesn’t have to meet the weight limit; and so on.  So I never really know what I’m going to get, and calling ahead of time never helps.  I get a different answer depending on who is behind the counter.  They eventually call a supervisor, and then the supervisor tells me whatever they happen to think, which is also inconsistent.  It’s always a nightmare, and for the last several flights, I have literally started crying within fifteen minutes of being at the airport.

No amount of preparation or education helps.  Popular American Airline will not give me a letter explaining what I can bring that I can show at the counter.  They cannot “keep notes about me” so that they have a copy of my fit to fly letter on file.  They will not put in writing that I can use the pump.  Best of all, everytime this happens, they send me an email that says that they are sorry that I did not have a good experience but that they “respectfully deny” that they violated any regulations.  I don’t call them everytime this happens because I know they don’t care.  They just automatically send me an email that is basically an enormous fuck you.

What I find really funny about this situation is that sometimes, the people at the check-in counter will tell me that the reason I can’t talk those supplies with me is because TSA won’t let me.  TSA is much maligned and I have to tell you that I have not had a bad experience with TSA since I started travelling again in July 2014.  They know what PICC lines, ostomies and ports are. They are courteous and efficient. I plan to get patted down and have my bags opened and my things and my person swabbed for explosives because these people are trying to make sure no one blows up airplanes and I am carrying large amounts of liquids, glass vials, syringes, needles, adhesives, medication bottles, an endless amount of pills, a clicking infusion pump, packets of cromolyn and a partridge in a pear tree (sung).  They are always very careful to be sure they don’t contaminate any of my line supplies or medications.  TSA is not the problem here.

So I get all excited to go on these trips and see people and do things and I premedicate and call and call and jump through all the hoops and then I get to the airport and within minutes, I am so frustrated that I am crying.  And then that’s it, I’m the girl who cries at the airport and you can never un-be that girl.  And it has gotten so bad that it makes me not want to travel.

In my heart, I have always been a traveler.  I have always wanted to get on airplanes and go places and see new things, even mundane things, even by myself.  Before I got sick, I would board planes with my iPod or Discman (I know, I’m dating myself here) and a small journal to write in.  I would write and listen to music while looking out the window.  I didn’t just like being in different places.  I actually loved the change of the environment, the little lights below at night, the reddening of the sky as the plane chased daylight.  I was a good traveler.

Being at the airport now is a reminder that my experience in the before matters very little.  It doesn’t matter that I used to be a good traveler, because now I’m just a crying woman who needs a wheelchair and wants to bring too much luggage onboard.  I have had some incredible, life changing victories in the last two years, but it has been hard won.  It takes such a toll on me, both physically and emotionally.

Last week, I went to visit one of my best friends in Colorado (hi, Priscilla!!!!).  I stayed for four days, which is pretty short for me, but I couldn’t take more time away from work right now.  We stayed over in Denver, hung out at her place in Summit County, went to Garden of the Gods and drove back to her place through mountain backroads.  I have been to Colorado ten times in the last nine years, and that drive home was the most stunningly beautiful landscape I have ever seen.  Purple mountains, blue skies, unblemished snow fields, no clouds.  So beautiful it feels like I am different for having seen it.

The day I flew home was one of the longest days of my adult life.  They right away started with you can’t take all this stuff on the plane, then there was a mechanical issue with the plane after we had boarded and we all had to get off and then they cancelled the flight.  One of the gate agents really put her ass into making sure I could get home that day and I got a seat on a direct flight with another airline that night.  By the time I got home, I was really in bad shape.  I literally couldn’t stand for more than a minute or so at a time.  Bad.

I want to be a traveler again like I used to be and my Achilles’ heel is airports and I’m so fucking sick of this shit.


10 Responses

  1. Carol Wong January 27, 2016 / 8:52 pm

    I went on a group to China back in 1992. That was when I took a lot fewer medicines, I want to go see my son who works in Chengdu bu I wonder how I will be able to do with the amount of medicines, inhalers, and special creams (for Nodular Prurigo). I will need a wheelchair too but without a lot of teh medicare gear that you have, I have no idea what I could store the stuff in and I don’t dare check any of it/

    • Lisa Klimas January 27, 2016 / 9:18 pm

      I pack in hard case luggage and put ice packs right in there.

  2. Lisa Cairncross January 27, 2016 / 10:11 pm

    Thank you for another wonderful post!

    I am a hiker, skier, water skier, camper, runner and all around adventurer. Turned 50 this year and have not been able to do any of those for a very long time…..but I will. As will you and all of us with a puzzle that really is just starting to be solved by science.

    Better days and loads of adventure ahead…hang on!


  3. Jess Hobart January 28, 2016 / 4:43 am

    There is one airport in the world where I consistently have my epi-pens confiscated and are told that they have to check with the airline to see if I’m allowed to take them on board. Off they march with my passport and my epi-pens to god knows where while I stand there waiting, feeling anxious with every increasing meter between me and my epinephrine. Once I was stupid and didn’t have a letter with me saying I need them… and eventually they accepted my MedicAlert card as proof that I need them. Now I carry the letter, but they still check them every time. And I think to myself, why this airport and why nowhere else amongst the nearly one hundred airports I’ve visited in my lifetime?

    • Lisa Klimas January 28, 2016 / 12:58 pm

      I carry a letter on me at all times that is notarized because I have so many meds/supplies/things. The fact that it is NEVER TSA/Airport Security that gives me trouble is what is the most frustrating because it indicates that it’s not a safety issue – they’re not concerned that my medication will hurt someone or break, they are just giving me a hard time for the hell of it.

  4. Kate January 28, 2016 / 5:55 am

    God love ya – high five! Nothing like telling it like it is.

  5. Shawn January 28, 2016 / 9:40 am

    So sorry you had such a bad experience, especially after the heads up. It all seams so chronic. Just keep those visions of the purple mountains, blue skies, unblemished snow fields and no clouds in your head and retreat there. It sounds like it was so worth it. The truth is, the World is just not ready for us.

  6. Lucy January 29, 2016 / 1:42 am

    The take away’s are the hardest part of my SM. Most of my bad experiences now days are because I forget or minimize my limitations. It always hurts when I realize I can never eat that or do that again. Colorado has a train system that goes from Denver to Winter Park, I think you might enjoy a train trip.

  7. Sean-Michael January 31, 2016 / 12:47 am

    I can relate to this. It’s why I almost never fly and we got an RV. We decided to Try to travel in a turtle shell sort of bring my safe zone with us way. So far it’s been ok. But it limits where we can go and it’s more expensive than you would think

  8. Michelle Dellene February 20, 2016 / 1:08 pm

    This disease has left me a practical hermit, which isn’t so bad because I spent my childhood and early years traveling and saw everything I wanted to see. Now at least I have those memories and am fortunate to have a view of the tops of the Grand Tetons on a clear day out of my picture window. And on good days I can drive up there and play tourist and pretend I am normal. But yeah, despite that, I am pretty sick of this being sick stuff too. 🙁

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