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People: Carl Allen, Traveler with TAR Syndrome



It was my third day in Reykjavík. For the first time in Iceland, I woke up without any jet lag feeling. I spent my first day being startled by the freeze, and fighting the symptoms of hypothermia in the mountains at night with the shy Aurora Borealis. She was my main reason to fly the thousands of miles, but the lights didn’t dance as how I imagined. The second day was better, although I almost cancelled my winter caving and snorkeling tour due to the dizziness. I’m glad I didn’t, though.

Sunrays shoved the cold wind. Foreign smiles greeted warmly as I crawled up my seat in the middle of the jeep. My eyes struck a small body settled next to me. Short arms bent oddly toward his torso. Curved fingers emerged from the folded jacket sleeves. Kind rounded face, smiling to me.

“Hello,” I couldn’t hide my amazement. Everyone in the car introduced them selves. “Hi. I’m Carl, from Leicester.”

The 4×4 beast galloped to Þingvellir National Park, where the fire married the ice. We were going to make our round at the famous Golden Circle. Carl stand beside me on a wooden bridge in the middle of the bursting ground, straggled with silver snow. He’s shorter than my 150cm height. We strolled between the open cracks like Moses walked through the Red Sea. I walked side by side with Carl. Some part of me was feeling that we were in the same boat as we were both going alone in the group. Some was because I felt that we both emitted the same childish appearances. And the remaining was because my doctor’s instinct felt worry that he might need a hand, though he doesn’t seem to be concerned at all. His left leg wielded in a strange way, but he scrambled the road like nothing was unusual. A lady in our group jogged to reach us, to zip his jacket up. I’d just realized that it was wide open.

“Don’t worry, I don’t get cold easily,” he said cheerfully, whilst I was trembling in my three layers of clothes.

Carl & I

“Nice camera. Did you get a good picture?” I said to him on his Galaxy Cam, as the great Strokkur Hot Spring erupted. All tourists were congregated around, waiting patiently to get a good shot every time the geyser spouted. His head bowed as he held the camera in his clubbed finger, just next to his chest. With that height and position, it seemed to me that he only got limited angles to take. He lifted his head up to me.

“You can try it if you want to,” he handed the camera over.  Wow, I thought, great shots indeed.

I watched him eating when we were having lunch at a café in that geothermal valley. He bent forward to chop his meal, fork in the clubbed right hand, knife in the left. He swung his head down right, putting the food into his mouth.

Thrombocytopenia Absent Radius Syndrome caused the absent of bilateral radii of the forearms, and also the twist in his left knee which came without the cap. The incidences are 4,2 per 100.000 live births. Other than a lot of blood transfusions he gone through, he underwent an operation on the left hand when he was an infant as both hands were clubbed. It was decided not to operate on the right hand as he was showing sides of adapting then. As information about TAR Syndrome was not easily generated by the time he was born in 1983, he and his family had to look after stuffs to make his life easier. Carl’s dad made some equipment himself, like a hook to pull things up and down.

“Everything was easier when there was Internet,” he wrote in his email weeks later as we became friends, “As I got older I started researching sites on the web and looked at things not specifically for my disability, I looked into sites where people had a bad back and couldn’t turn or move their arms that much. I found long handled hair brushes, long handled wash brushes and also an innovative shoe horn that not only helps with putting your shoes on but the other side, two plastic curved hooks which I needed to pull things up and down with.“

He needs more time to do “normal” things than other people do, wearing his clothes on, brushing his teeth, carrying his luggage. He needs to make sure that he could go on every trip he’s going to make.

Carl Allen

The trip to Iceland wasn’t his first solo travel. He had gone to quite a lot of places with his family and friends. He went snorkeling in The Caribbean. He tried sea fishing in Mexico. He experienced horse riding in the steamed Tunisia. But his first time going abroad on his own to The Azores was the highlight of all his journeys.

“I was scared and a bit worried I wouldn’t be able to do some things, like putting certain clothes on, being able to reach some things, making sure I could get in the boats, was the lava cave I went into it safe for me. I had so many things going around in my head. I went to the boat and we had to put these coats on and I had the skipper come over to me, knowing that I might need a hand, as the coats were long sleeved I would be slapping people with them. We rolled up them up to make it easier and make it more comfortable. Throughout the week we ended up helping each other as group. I also went down a lava cave, it had approximately 150 steps to get down too. We all had to put helmets on, as there were pointy rock formations that could do a bit of damage. I had to bend down really low to get under some of the formations and also climb up some rocks as well. I was never rushed and as a group we all achieved it. I remember at the end getting out of the cave, everybody was so contented. I must admit I was proud of myself too. Some of the group admitted they were struggling but said that they saw me as an inspiration and I helped pull them through.”

Carl in Azores

“It was quite emotional when I got back as I realized the world is now my oyster. I can travel anywhere without the fear of struggling.”

As the jeep danced over the snow taking us high up to the white-hooded Langjokull Glacier, we leaped up on our seats. People started to laugh and sing, following the quirky tune of Of Monster and Men’s song coming out of the stereo. I turned to Carl every now and then, made sure that I had fastened his belt and that he was okay. When he had a coffee break at a café at Gullfoss Waterfall, he disappeared. I looked for him in the café, in the shops, and outside, but I couldn’t find Carl.

“You’re so nice to him,” the kind lady in the group said. At that time, I felt like my protective instinct as I always have to a friend, was talking. It was starting to rain when Carl came. We were outside, preparing to walk down the stairs that led us to the giant, half-frozen waterfall. Turned out that he was going himself to the waterfall.

“You know, people are always happy to assist you. I told myself not to be afraid to ask for some help. It also helps to break the ice anyway,” he wrote.

Carl never seemed to have difficulties in building connections with people. When he was 8, he went on a catamaran in Tenerife with his family. He got along well with the staff and he disappeared from his family’s view. His mom went to the captain’s deck, worried that he might have fallen into the sea, and there he was, driving the boat. It was also his first time seeing pilot whales, in which he got hooked up ever since.

Upon his arrival in Iceland, he stayed in Grundarfjörður for 4 days. There in the calming village, Aurora performed every night and he managed to see the killer whales. Whales and dolphins have always been his passion. They travel along the year, creating bond with the place they are in. Carl, too, had been doing it for all his life. Not just the extra efforts he made, but on top of all, being adaptable.

Carl and Aurora

“A couple of times I had a few moments where I sat there and thought, Carl what are you doing here on your own, with people you don’t know? What would happen if you got in trouble? I really don’t need to worry though, as I think I’ve put on here before. I’m patient with myself, I analyze the situation and then think how am I going to do this… then I put it into place and go for it.”

As an Asian girl who travels abroad on my own, I certainly had been through the same fears. Sometimes I think my small, childish appearance doesn’t make it safe to go around alone. The climate difference has also been my concern since I live in a tropical country where everything is steamed all year long. Also, given the situation that I live in a developing country like Indonesia, even as a general practitioner I need to plan my finance very carefully each time I put myself into a trip. Not to mention the freelance jobs other than medical I took. But seeing Carl on his journey, doing things with his disability, I smiled. There is no reason to not getting to anywhere you want.

We were all quite as the wheels bumped the road down to Reykjavik, half tired, half under the spell of the magnificent Golden Circle.

“Do you believe in elves?” Svarnar, our young guide broke the silence from behind his wheel. He pointed to the brownish green hill at the right side of the road. Stone mounds swelled on its curves, with a small wooden door in the front of each. According to the Icelandic myth, the elves can only be seen by those who believe.

“Well, we already have one in here,” Carl chuckled.

“Make it two,” I added, smiling. These ones certainly were not afraid to be seen.

I turned to the milky land outside, to the stories it whispered. The tales we brought and built, the true goal of a journey. Carl’s had led me to mine.

When I came back to the city that night, Aurora wore her statement dress of green, violet and pink. She danced cheerfully over Reykjavík.

2 comments on “People: Carl Allen, Traveler with TAR Syndrome

    Desember 8, 2015

    Wonderful story and journey!!! Carl, sometime i want to meet him, sharing alot things 🙂 don’t give up even u have an obsticle. Please keep writing ur adventour, i’d love to read ur story…

    • nindyalubis
      November 29, 2016

      Hi, sorry for the almost-one-year-late reply! Thank you very much for reading it. Will try to start writing again. 🙂

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This entry was posted on Juni 5, 2014 by in People, Travel and tagged , , , , , .
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