I have never been on safari. I have read a lot of books on what ‘going on safari’ is like. I have seen movies, too. I imagine that these are poor substitutes for the actual experience. Kind of like “reading” about the impact of TLE is not exactly like “living” through it. I still imagine sometimes what it would be like to actually go on a safari, riding in a Jeep or Scout and armed with the best cameras I could afford. And when I think about the excitement and beauty of it I also laugh at myself for not really factoring in all the effort and discomfort.
The amazing painting below is by John and Suzy Seerey-Lester. It shows all too well some of the pitfalls of a trip like that. Danger hiding just outside the door. But we all know how that feels. That impending feeling that danger of some sort associated with TLE is right outside the door.
Last weekend I had a lot of time to think about that danger. I was flying from one part of the South to another, coming home from a trip to see family. The trip was expected to take most of the day with me changing planes in Dallas. I was confident that things would be OK even though I was flying alone, because I had added time into my schedule in case of weather delays. I was sure I would make it through the trip and not have any cause for panic.
Panic in an airport was an entirely new feeling for me when I first started dealing with TLE. As early as 6 years of age, I was flying alone between parents. When my sister, three years my junior, began to fly with me, it was no big deal. I simply took her by the hand and set off. If I got lost, I would look for someone in a uniform, such as a stewardess or priest. This was during the 60s. I was safe and had remarkable freedom and no trouble at all, even when required to change planes. And I so loved the beauty I saw out the window of the plane. It calmed and awed me.
In my last two jobs, I flew often and dealt with all kinds of problems and reversals associated with the frequent flyer. I always felt confident and calm, having no fear that things would be sorted out as quickly as possible. I was on the last plane to land in Houston as Tropical Storm Allison hit the city hard. The plane tried the approach to the only runway open three times before the winds and rain allowed a moderately safe landing. Still no panic on my part.
After 9/11 (and I was scheduled to fly across country on that day) I got used to all the extra twists and turns with air travel. I calmly exited Las Vegas airport during a bomb threat and once entered a deserted Banger, Maine, terminal during sub-zero temperatures without a clue as to how I would get to a hotel. I flew without fear, and a problem solved during the journey was a gift. This ability evaporated with the onset of TLE and light sensitivity.
After I began to struggle with TLE, I became more and more light sensitive. No one really understands what or how this began, or even where in my brain the problem exists, only that it causes extreme nerve pain and seizures. The seizures from this are simple seizures. I am conscious during them, but they alter my thinking. Quite a bit. I start to feel threatened, paranoid, confused and panicky. I cross boundaries, too. When I am fine, I would never think of butting to the front of a line and grabbing the arm of an attendant, but I have actually done that after a few hours under the lights.
To be honest, I don’t trust myself after a prolonged exposure. But there is no safe place to go in an airport to avoid the lights. And there are so many people, so much noise. I imagine the danger, like the picture above, so close and so intense.
The last weekend when I was traveling, I ran into extreme delays due to weather. I sat in very crowded gates, feeling myself react under the glare of the fluorescent lights and the sound of all those people waiting for their delayed planes along with me. As I sat sandwiched between some very large travelers, I felt the nerve crawl up the right side of my face and the tingling all over signaling the beginning of a major problem. Sit still, I told myself, and you will live through this.
Travel for me must be a bit like I imagine a safari. You must carry your own food, deal with being desperately uncomfortable, learn to avoid stampeding mammals and crowded watering holes, and above all else be aware the threat of danger that is ever present. But like the safari in my mind, the run-of-the-mill air travel can display moments of breathtaking beauty and awe.
I doubt if things will ever be easy again when it comes to travel. The key for me is control and achieving a panic-free experience. The danger is always lurking, but if you are quiet and careful, it might not get you that day.
Surviving Wonderland: Living with TLE 
I’m sorry, and I hope my light sensitivity is never that bad. But something else about your story rings all too familiar with me: already feeling vulnerable much of the time out in public–I never like crowds to begin with, and the excess stimulation, well, you know. I’ve spent a couple of decades cultivating a calm and in-control exterior, which goes a long way towards actually believing everything will be all right. (I love to travel, as well.)
i can cool-headedly manage a hundred problems at once, but when you put that hundred and one in front of me. . .BAM, I do a complete reversal, and watch out, woe to those near me. For the most part I don’t regret the Siamese-cat sang-froid I’ve learned to project, but it does make it that much worse when I completely lose it.
Say Thank you so much for sharing this!
Sorry, didn’t men to put “say” in there.
I love your last line – “the danger is always lurking, but if you are quiet and careful,it might not get you that day.” I often feel like that. Some days I feel ok and it is such a relief to get a reprieve from TLE, even if it is for a short while. Thanks for sharing Sharon, it’s nice to hear how you are coping, it provides some hope.