Meet Archy, the CMTA Mascot

Our thanks to Tina Marie Thomas, who made the initial drawing of Archy. Tina drew him with high-arched feet, hence the name “Archy,” and thought he would be a great mascot for CMT. We thought so, too, but we had even grander plans for Archy. We thought stories featuring Archy would be a great way to help parents talk to kids about CMT, so then-editor of The CMTA Report Patricia Dreibelbis began working on “The Adventures of Archy,” a series of stories that explained how Archy coped with CMT in a variety of situations from going to school to going to the doctor to getting braces.

And, while we didn’t think there was anything funny about CMT, we did think that it was important to appreciate the joy and humor in life, so most of all, we wanted Archy to provide kids of all ages with a way to look at themselves, accept their differences, and smile as they coped with the challenges they faced because of their CMT.

Archy’s adventures (written by Pat but inspired by us all) were featured in The CMTA Report from 2009 to 2014 and soon became favorites of young and old alike. We’ve reproduced them here, and we hope you enjoy the humor and the enduring wisdom of Pat and Archy.

Archy, CMTA Mascot
Archy is a very proud turtle since he became a mascot for the CMTA.

My name is Archy. I’m a turtle, but I’m a little different. My mother says that makes me special, but sometimes I just feel different. My feet are shaped funny with a high arch (that’s why my Mom named me Archy) and I walk on my toes. Most turtles are really flat-footed and kind of thump down when they walk. I can’t get my heels down, so I get teased for being a sissy and walking on my toes. When you’re little, it’s not fun to be different. I’m not sure if it’s ever going to be fun to be different, but my parents tell me it will get better. I sure hope so.

The one place I really feel like I’m special is in the water. When I swim, no one can tell I’m different. In fact, I think my arched feet actually make me go faster. I’m on our school’s swim team, and I can even dive pretty well, so no one teases me when I’m in the water. I’m also fairly smart, so the teachers are nice to me and even let me take a little longer to get from one place in school to another. I do all my homework and really study hard to make my parents proud of me. If I can’t be a superstar athlete, I can be a superstar student.

Still, none of this makes it any easier to deal with the bullies in our school. You might think all turtles are quiet and well-behaved animals, but it’s not true. The biggest and the dumbest of us are bullies. I get abused on the school bus and during recess. I don’t mean physically abused, but they do call me names and they pick on me and anyone that befriends me. It’s very hard to take. Sometimes, I get pretty upset about it all. I pull my head inside my shell and won’t come out for a long time. I have to get up my courage to come out of my shell and face the kids again. The only reason I can face up to my bullying is that my Mom and Dad are really great and they really love me. So does my older sister, Tara. They remind me that I’m a special kid and that I can do great things. In fact, they make me feel sorry for the turtles who bully me because they point out that they aren’t great students and they don’t have loving families. So, I get reminded of how lucky I am, in spite of my weird feet, to be so loved.

Just the other day something really special happened! I met a lady named Tina, and she thought my funny-shaped feet were so great. She was really happy that I had these high-arched feet because she said she does, too! Can you imagine? Well, she has something called Charcot-Marie-Tooth disorder and that makes her feet pull up into a high arch just like my feet do. Even better was the fact that she wanted me to be the CMTA mascot. Suddenly, I really was going to be special. My face was going to be on a website and no one would think my feet were silly; they would have the same kind of feet. This is by far the best thing that has ever happened in my life.

So, here I am now, sitting on the website and catching the eye (or so I hope) of kids, who, like me, are a little different. I guess I really want kids to know that it’s okay to be different and it’s okay not to like being different, sometimes. I work hard at doing what I can do really well and not worrying too much about the things I can’t do. I’m slow, but I’m steady. You’ve all seen that story about the tortoise and the hare…well, I’m very much like the tortoise. I won’t win any races of pure speed, but when smarts come into play, I’m a sure winner. That’s okay with me. “Win when you can; lose when you must; and always try your hardest.” That’s the lesson my parents taught me, and I’m sharing it with you. I hope it serves you well in life. It works for me.

    • Archy Gets a Diagnosis (July-August 2009)

      For a long time, I’ve struggled with my walking. I’ve walked on my toes; I’ve walked on the outside of my ankles; I’ve fallen more than I’ve walked sometimes. So, it wasn’t a surprise to me when my mother told me I had an appointment with a new doctor. When Tina had approached me about being a mascot for the CMTA, the topic of her disorder and my strange-looking feet had come up. My mother was very surprised to know that there was a name for my problem because we always thought I had the Turtlebaum feet. My mother’s father had feet like mine and while my mother walked perfectly well, she always mentioned that my feet looked like her father’s. Still, we thought it was just a Turtlebaum problem, and the idea that I might have something that thousands of others had was pretty amazing.

      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.Not necessarily good, but amazing all the same. So, on a Tuesday, I missed school so that I could go see a new doctor, a type called a neurologist. He was a snake (I don’t mean that to sound like name calling; he really was a snake) who had studied under some really famous neurologists in a place called Detroit, and he knew exactly what CMT was.

      He rather matter-of-factly checked out my reflexes by hammering on my knees, and my reflexes were totally lacking. Then he watched me walk and pronounced that I needed an EMG and an NCV (some scary-sounding tests that send little electrical signals down my legs) to determine if I had CMT and which type it was, if it was CMT.

      I’m a fairly brave turtle, but the machines he hooked me up to were not pleasant looking. There were lots of wires and beeping sounds and, frankly, I was scared. But, my mother stood right by me and held my hand, and Dr. Pythonic explained about the little jolt I was going to feel when they sent the current down my legs. It sounded worse than it really was. I wouldn’t necessarily want to have it done again, but the pain was not that bad and it was over quickly.

      My results told them I did, in fact, have Charcot-Marie- Tooth disorder, and it was a demyelinating form. I have no idea what that means, but my mother seemed to be following the doctor’s explanation. She said that the myelin around my nerves (kind of like insulation around an electrical wire) was breaking apart and that kept the signals from getting down my legs properly.

      The type you have is important to know for reasons related to research and possible cures, but otherwise, everyone with CMT looks pretty much the same and deals with the same problems. In my case, my biggest problems right now are walking and falling. The doctor has something in mind to fix those problems, according to my mother.

      Dr. Pythonic’s nurse was a real fox (again, not name calling— she was a fox named Ms. Redd) and she gave us some papers to read that explained about CMT. It was weird, but one of them was all about the CMTA, the group that I’m going to be working with. I felt pretty important when I thought about how much good I could do by telling my story and being a role model for others who get diagnosed with CMT. I’m hoping that I won’t get a lot worse if I do everything the doctors and therapists tell me to so I can continue to do all the activities I enjoy.

      My sister didn’t get the Turtlebaum feet, so I feel a little special. I know that my PopPop handles his bad feet and legs pretty well, and I’m going to be like him. He doesn’t let anything stop him from doing what he always has. I know he doesn’t climb up on the roof of his house anymore, but, frankly, I haven’t ever wanted to do that. He takes care of his pets and he does the gardening, and I know he’s a great swimmer like I am. So, we have lots in common and that is pretty special because I love my PopPop a lot.

      All in all, going to the doctor’s wasn’t as bad as I had feared, and now that I have a name for what’s wrong with me, I feel more like I’m part of something bigger and more important than just my life in the pond. I have a feeling I might wind up doing something great. Stay tuned.

    • Archy Goes to the Orthotist (September-October 2009)

      I’m not looking forward to today. After school, my mother is taking me to the doctor’s to see what can be done about my ankles and feet. I have really high arches in my feet, and when I walk, I tend to turn over on my ankles. I fall if the ground is uneven and my feet hurt if I walk too long. I live near a pond, where the ground is almost all uneven and rough, so falling is a pretty common event. My mother is worried about it because I wind up with bruises and skinned knees. I’ve even dented my shell from falling down.

      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.

      Anyway, I made it through the day at school, and when Mom picked me up, she explained about what was going to happen at the doctor’s. He was going to watch me walk and see what could be done to correct my “gait” (that’s the way you walk.) Sometimes, I guess they do operations and sometimes they send you to physical therapy and sometimes they make some kind of plastic brace that helps hold your foot and ankle in the right position. I spent the entire drive praying that I would only have to go to physical therapy, because I’ve done that before and it’s fun. I work in a pool and I do balancing exercises with a rocking board. The thing is, physical therapy has made me stronger and more coordinated, but it hasn’t stopped me from tripping and falling.

      Once we got to the doctor’s, he made me walk back and forth in front of him. Then, he put me up on a bed and he turned my ankles with his paws. He’s a very nice doctor. He’s big, and his voice is a little gruff, but he’s a bear, so I think that’s normal. But he’s gentle and kind, and I really trust him because he talked about other animals he knows who have my same problem. The result of his examination was that he thought I needed braces. He called them AFOs, which I thought sounded like some alien ship or something, but he said it meant ankle-foot orthoses. They were going to be made for my back legs, and they would keep me from tripping over my own toes and turning my ankles to the sides. He examined my front legs, too, but he said I could just use some splints at night to keep those feet from turning in. That was good, because I have to use my front legs to draw and write, and a brace would have made that harder.

      We went right from the doctor’s office to the office of this man who makes braces. He’s an orthotist, which means he makes these AFOs that I need. He watched me walk, too; then, he put me up on a high table so my legs dangled down. He wrapped them in a cloth and then covered the cloth with some stuff that dried really quickly and got hard. He had to draw lines on the mold where they would cut it to fit me perfectly. It felt a little weird, but it didn’t hurt at all. He used a little electric saw to cut the mold off of me. He warned me that it would sound loud but wouldn’t even touch my leg. It didn’t. I liked him, too. Like the doctor, he was nice to me and he, too, had made braces for others with CMT. That makes me feel better. Just knowing that there are others with the same problem is kind of comforting, and now that I’m the mascot of the CMTA, I look for others with CMT whenever I can.

      He told me my braces would be ready in about two weeks. Because he’s a beaver, I actually think they’ll be ready sooner because they are known to be really hard workers. I went home feeling pretty good about my experiences and knowing that I should be able to walk better once I get my new braces. Ten Days Later….

      After school today, we are going for my new braces. I’m excited and a little afraid. I don’t want to look different from everyone else at school. Braces will make my problems more visible, and I’m afraid I’ll get teased a lot. I want to talk to my Mom and Dad about it, but I’m kind of scared. I know that they are doing what is best for me, and I don’t want them to think I don’t appreciate it.

      We waited in the outer office for a while, and I got to see a lot of other animals with walking problems. One of them, a raccoon, had on braces and used crutches, too. A deer had one artificial leg because of a hunting accident he had been in. I couldn’t decide if seeing all of them made me feel better or worse. I think I’m in pretty good shape right now, but they made me wonder how much worse I might get.

      When I finally got in to see the orthotist, Mr. Woods, I was nervous. He showed me the new braces. They were so cool looking. He had made them sort of like camouflage, and they looked like something an army guy would wear. They felt a little funny at first, but he said that was normal. I would have to get used to walking in them. I was only supposed to wear them for a few hours the first two weeks. I was told to pay attention to how they felt and tell him if they pinched me anywhere or if they rubbed my skin. He said I could come back as many times as I needed to until I almost couldn’t tell they were on at all.

      I’m going to do everything he told me because I really want these to work and make me walk better. I’m tired of falling, and I think these braces are going to help a lot. I’ll let you know how I feel in a few weeks!

    • Archy at the Zoo (November-December 2009)

      I could hardly sleep last night. I was so excited about today’s trip to the zoo. I wasn’t sure how hard it might be for me to walk around all that space, but I really wanted to see the other animals. I go to school with lots of different animals, but not the kind you see at the zoo. My classmates are rabbits and deer and skunks and raccoons and tortoises and snails and others like that. But, we don’t have any lions or tigers or monkeys or polar bears. I’m most excited about seeing polar bears because I love to swim and when I see pictures of them, I think they love swimming even more than I do! My other favorite is the otters. They are swimmers, too, and they look so sleek when they slide down rocks and play among themselves.

      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.

      So, I woke up extra early this morning and spent lots of time deciding what to wear. It’s pretty warm out today so I had to decide whether to wear shorts or not and if I was going to wear shorts, was I going to wear my orthoses. I love my orthoses, but I hate for other people to see them because I think they make me look crippled and that’s not how I see myself. But the reality is that I walk much better when I wear them and I don’t get as tired—at least not as quickly. So, I decided that it only made sense for me to wear my braces and skip the shorts. That’s sort of the best of both worlds. I might get hot, but no one will know about my braces and I will walk a lot better.

      The school bus came right on time and we kids all piled in. The buses are made special to accommodate the different sizes and shapes of us animals. I was seated near the front where they have dirt and small pools for the animals that need water. My friends were there with me and we talked the whole way to the zoo. We were making a plan for where we wanted to go first and what we wanted to see. The first grade teacher is a rabbit, but she is very nice and said she would walk slowly so we could all keep up. One good thing about being a turtle with a slow walk is that all turtles move pretty slowly, so I don’t stand out too much.

      We piled off the bus and got special badges to show we were with the Greenwoods Elementary School. That was so, if we got lost, we could be returned to our group. We knew we had to stay with our little group, though, because it was much safer that way. We’ve heard stories about how little ones get stolen from their families and none of us want anything like that to happen, so we’re going to stay close to our teacher.

      By a vote of five to one, we decided to go to the otters display first. They were brown river otters and they looked so cool and so athletic. I can swim pretty well, but they are amazing as they practically slide through the water and up and down over rocks and waterfalls. I was doing pretty well, because I could sit down occasionally and that kept me from getting too tired. When I go on trips with my mother, she gets a special sort of wagon that I can ride in when I get tired of walking. But I didn’t want to have to use anything on the zoo trip that would make me seem different from my classmates.

      My best friend Timothy, who is also a turtle, knows about my problems, but he doesn’t care. We can still do all the things we really like to do. We love word games and chess and I’m as good at that as Tim is, so we get along great together. He’s not a real athlete, either, and so roughhousing and running around isn’t his idea of a fun time. He always walks really slowly so that I can keep up and no one thinks much of it because they figure we are just busy talking and not thinking about moving fast.

      When we left the otters, we went to the polar bear enclosure. They just love to swim, but they also like to play with balls and roughhouse with each other. I think I would make a better otter than a polar bear, although I think I’m best at just being myself.

      We ate lunch after the polar bear exhibit, and that’s when I really relaxed and didn’t worry about keeping up. I can eat as fast as the next turtle and my mother always packs my favorite things for lunch. So I enjoyed some vegetables and a thermos full of delicious water from our local pond. It was getting pretty hot by lunchtime, but I stayed under the trees and reminded myself that it was worth being hot to have on my braces so I wouldn’t fall.

      We saw lions and tigers and bears, oh, my, and they were impressive. They are really, really big and sort of scary. Then we went inside to see small mammals and reptiles. They have their own “houses,” but I like my house much better. I know they are well taken care of and all, but they don’t get to leave and go on field trips like we do. I think it’s good to see how other animals live so we can appreciate our own lives more.

      We left around 3 o’clock, and I was really glad to get home and see my Mom and my sister. We all went in the pond and cooled down and just floated around while I told them about my adventures. I had bought my sister a stuffed turtle so she could add him to her collection of stuffed animals. We always laugh at how they make the turtles seem so perfect, which we aren’t in real life, but I think they are like dolls are to people—not very realistic, but sort of fun to pretend with.

      I was tired from my day at the zoo, but I felt good. I had made a good decision to wear my braces and I had managed to do the whole trip without needing any special help. I also felt good because being at the zoo reminded me of how lucky I am to have a nice family and a comfortable home.

    • Archy … The Hero? (January-February 2010)

      My best friend in first grade is probably Timmy (he’s a turtle, too, so we have a lot in common), but I am also really good friends with several other first graders, among them Bruce beaver who is a fabulous Lego builder. We have lots of fun making pretend villages and big trucks and airplanes. He has an older sister just like I do. Her name is Becky and she’s the subject of this day’s adventure.

      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.

      Apparently, Becky had to have some work done on her teeth and she came back to school with braces. That made her the immediate talk of the fourth-grade classroom and the object of several unkind comments. Some of the rougher classmates, notably Samuel Skunk and Richard Raccoon, were teasing her in a very meanspirited way about how she looked with the metal braces on her teeth. At one point, she broke down and cried because she was already embarrassed about the braces and the teasing just made things worse.

      I happened to come upon them all out in the woods where we play during lunch break. Since I have recently gotten leg braces of my own, which I have kept hidden under my pants, I knew exactly how she felt. I had gone to great lengths to avoid having anyone other than my best friends know that I had gotten AFOs, or braces, to help me walk. Still, seeing her crying made me rethink my secrecy.

      I walked up to Sammy and Ricky and said, “There’s nothing wrong with braces. See, I have some on my legs to help me walk. Becky has them on her teeth to help straighten them. All kids have something they need help with and braces are just a way to get help. “If I remember correctly, you needed help with your school work, Sammy. You had a tutor. She was like a brace for you— supporting you until you understood the math problems better.”

      “Uh, well, yeah. I guess that’s true,” Sammy said. A few others in the crowd chimed in with comments about how Ricky had needed help with his school work, too. In fact, kids all started mentioning things that they needed help with: Someone mentioned training wheels on bikes and before long, no one even remembered that Becky had gotten new braces on her teeth. Some of the boys did notice my new braces, but they were admiring the cool camouflage coloring and weren’t teasing me at all.

      When class started again after lunch, Bruce thanked me for defending his sister. Our teacher went so far as to say I was a hero for standing up to the older boys, but I think that’s going too far. I really just could “feel” Becky’s embarrassment, too, and I wanted to put a stop to it—for her and for me—and apparently I did. What a good day this turned out to be!

    • Archy Takes a Plane Ride to Las Vegas (March-April 2010)

      This adventure was so different from my normal experiences. After all, I live in the woods and my usual “excitement” is playing with my friends or going on a school trip. This time, I was invited to fly to Las Vegas with my friend from the CMTA, Pat Dreibelbis. She helps me with my articles for the newsletter, and she thought I would enjoy meeting some other people associated with the CMTA.

      The event in Las Vegas was a gathering of the support group leaders from across the country. I had not gone to a support group meeting before because there isn’t one that’s near my home, but I wanted to meet lots of other people who have CMT and talk to them about how they handle the questions that people have about how bad things might get when you have CMT. Other than meeting lots of people who represent the CMTA (like I do sometimes), I was looking forward to meeting two people that I was very curious about. One of them was Jerry Cross, who made an Archy train for little kids to ride at festivals and events, and the other was Jeana Sweeney, a support group leader from Johnstown, PA, who has been reading my stories to kids at her daughter’s elementary school before they participate in a fundraiser where they walk for CMT and have people give them a donation to the CMTA.

      It’s really exciting to think that I have inspired people to raise money for CMT and that I can, in some small way, help to make fundraising more appealing.

      The airplane we were riding on was huge. Turtles aren’t very big to begin with, but when you see me in comparison to this airplane, it makes me recognize exactly how small a being I am. Even Pat and Dana, who are full-size people, remarked that the plane was big and crowded. I hope you won’t think less of me if I say that I was a little scared about all of this.

      Actually, the plane ride wasn’t too bad. It was really long, though. I was going to be pretty tired when I got to the conference site because we were in the air for about six hours. The thing I noticed about Las Vegas right away was how bright it was. There were lights everywhere and people everywhere, too. Like the airplane, it was sort of scary. It was nothing like the woods. I mean it was nothing like anything I’d ever seen!

      I got to ride out to the Red Rock Canyon with Pat and Dana, where I met Mohave Max, a tortoise who is the representative of the Red Rock National Conservation Area. He hibernates. I never realized that tortoises did that. I thought that was something that bears did, but he told me that tortoises do, too. So, I had already learned something that my friends at home would like hearing about.

      Jeana Sweeney
      Jeana Sweeney has incorporated stories of Archy into very successful fundraising.

      My biggest day at the support group leaders’ conference was Saturday because that’s when Pat talked about me and when I heard Jerry and Jeana talk about their fundraising ideas. I have to confess that I have a little crush on Jeana. I know I’m a turtle and she’s not, but I think she’s very cute and I think she has done a fabulous job raising money by using me to inspire little kids. One of the schools that did the walking with the pedometers raised almost $6900! Can you imagine? And, Jerry has made the most amazing train featuring a cute little turtle (yeah, it’s me). He even put umbrellas on the chairs on the turtle’s back so that the kids wouldn’t get too hot in the heat of Vegas and Arizona when he takes his ride to various festivals. His whole family, whom I met on Sunday, is really involved with the Archy train and the whole idea of making people more aware of CMT. It’s pretty inspiring to know them.

      I feel like I met the best people in the whole world in Las Vegas. The support group leaders are so nice and so enthusiastic about helping the CMTA that I feel like I should do a fundraiser when I get home to the woods. I don’t think I’ll be as good as Jeana or Dale Lopez, but I’m going to try. I feel like I should be able to raise awareness and raise some money, too. When Pat was finishing up her presentation, she was given something by Ronald Rodrigues, the husband of support group leader, Donna Rennie. On a little scrap of paper he had written:


      Purposeful Roadblocks Offering Beneficial Lessons (to) Enhance Mental Strength

      I really liked the message of his note and decided to include it here in my “adventure.” I have plenty of problems in dealing with my CMT and my classmates, but I think that his message will help me to prevail and to understand that I’m actually getting stronger because of the problems I can overcome. So, thank you, Ron.

      I might be little, but I learned a lot in Las Vegas and I intend to use what I learned to make my life in the woods a little more purposeful.

    • Archy Anticipates Summer Vacation (May-June 2010)

      One of the big decisions that our family always starts making in the spring involves where we will go for summer vacation. We always go somewhere that the whole family agrees on. As my sister and I get older, I guess that might get harder and harder to do, but right now, we still like to go places with our parents. My sister, Tara, is thinking about going to Adventure Girl camp for a week, but she’ll also go with the rest of us wherever we choose.

      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.

      Right now, the top contender seems to be a water park in Wildwood, New Jersey, called Morey’s Pier. Even though the park is right next to the Atlantic Ocean, the water they use in the park is fresh water, so it’s safe for us turtles. The reason the water park seems like such a good choice is that I can still swim really well and that gives me a chance to enjoy all the same activities as my sister. Besides, this year my grandparents, Ralph and Edna Turtlebaum, are coming along and my Pop Pop, who also has CMT, can still swim even though he’s pretty old. In fact, he and I often have races to see if I’m getting faster—and I am, although I sometimes wonder if maybe he is really getting slower instead.

      One year, we went to famous battlefields in our area. My parents thought my sister and I should know about the parts of American history that relate to the people in our lives. I really liked the old Civil War battlefields, but my sister was sort of bored. I think she would have liked to go to a place called a “mall” more. The one thing that my parents and we kids discussed was how the Civil War really tore this country apart and how, in some cases, brothers wound up fighting against brothers. We agreed that we didn’t believe in ever letting our different opinions tear our family apart. Nothing would be worth that.

      Another favorite past vacation was a trip to Disney World. I know that people always talk about how accommodating the guides are to people who are handicapped. Well, you should see how they work to make the visit safe and pleasant for us animals. Of course, our time in the park is different from the time when the people are all there so it’s much safer. We go in really early in the morning, and the dew on the rides and on the walkways makes it much more pleasant for our little turtle feet. We can even ride Dumbo and the swirling teacups because they are wet in the early morning. Once it gets close to the regular opening time for the park, we quietly make our exit to go back to our motel and swim or just enjoy the quiet time.

      Thinking back on our previous vacations and looking ahead to this year’s, it comes to my attention that where we go really isn’t the point. The fact that we all go together and enjoy each other’s company is what it’s really about. I’m sure we’ll have a good time again this year, and the only bad thing about summer vacation is that my teacher will make me write an essay next September called “what I did on my summer vacation.”


    • The Country Turtle and the City Turtle (July-August 2010)

      One of the strange ideas that my mother came up with this summer was to invite a turtle who lives in the city to come and live with us for a few weeks to get the experience of living in our woods. It’s part of some national program called “Fresh Air” and, normally, I guess it applies to kids. It sounded like an “okay” idea, but I knew if we had a boy visiting, the job of entertaining him was going to fall on me, and I just wanted to have my own private fun this summer. My mother gave me the inevitable lecture about thinking about others and not just myself and reminding me that I’m very lucky to live in such a nice place. Not everyone has that advantage, she said. Okay. So, she shamed me into saying I would go along with the plan. Privately, I prayed that the visitor would be a girl turtle my sister’s age.

      Of course, that’s not what happened! The turtle chosen for us was a boy named Vinnie and he lived in a aquarium in New York City. Yuck. I’m sorry, but I don’t make friends easily and having one thrust upon me is not my idea of a fun adventure. When Vinnie was “delivered” to us by bus, the awkwardness began. I had no idea what to say to him. Of course, my mother was all warm and gushy and he seemed to like her right away. I was another story. He looked at me, noticed the braces on my legs (my really cool camouflage ones) and seemed to totally withdraw. I couldn’t decide if he thought I was crippled and wouldn’t be able to do anything with him or if he was embarrassed for me because I was different. Frankly, it didn’t matter what he thought about me, but it did put a definite freeze on our “friendship.”

      Pat Dreibelbis
      Another adventure this summer was going with CMTA Director of Program Services Pat Dreibelbis to Australia and meeting an actual koala bear.

      The first day went by quickly. He got settled in my room, and he ate my mother’s cooking. We barely spoke. On the second day, it was pretty obvious that I was going to have to make the first move. So, I invited him to go swimming with me in our pond. He said “yes,” but I could tell he wasn’t really sure of himself. It turned out that he has lived his whole life in a tank or aquarium, so his swimming hasn’t really been perfected like mine has. He was actually timid even though he was bigger and stronger than I was.

      I’m a star when it comes to swimming, and Vinnie hasn’t really ever had to swim in open water, so he was slapping the water and generally making a lot of noise. I didn’t think he was in any trouble, though, because how could a turtle drown? I mean, really, turtles are meant to be in the open water, aren’t they? You can probably tell where this is going. He panicked and started flailing around. Only when he yelled did I realize that he couldn’t get upright and was taking in a lot of water. I swam over and righted him so that he could catch his breath. I don’t think he was in any real danger, but apparently he thought I had “saved his life.” He told every single animal in the woods and everyone in my family about my miraculous “save.”

      That night, when we were in my room, he finally asked about my legs and the braces. I told him what CMT is and how it affects me. He was really interested and was quite impressed that in spite of CMT I could swim amazingly. Once we started talking, I realized that he was a pretty cool turtle. His experiences weren’t anything like mine, but he does have a sister, so we could talk about being bossed around by an older sibling. We shared some laughs about things we have done to our sisters (like hiding favorite pieces of clothing and toys) and we even shared some grudging comments about times that our sisters had been nice to us and come to our aid. As we talked, it became apparent to me that Vinnie and I were going to have a lot of fun while he was living with us in Greenwoods. I promised to help him with his swimming, and he decided he would help me learn to dance the way the turtles who live in New York City do.

      I’m going to be sooooo cool! I think this “summer in the country” is a great idea. As it turns out, I am learning as much as Vinnie is, and we are already talking about my coming to visit him in the city next summer. I might have found a “forever” friend. You don’t have to be like someone to like someone. That’s my philosophy for today.

    • Archy Gets a Diagnosis (July-August 2009)

      Well, school is back in session and I’m in my usual blue funk because I am missing all the fun I had this summer. School isn’t bad, mind you, but it can’t compare to having friends over and swimming and just generally fooling around on a hot summer day. Factor in that I went to Australia this summer and you can imagine why going back to school doesn’t seem all that exciting.

      Archy in Tennessee
      Archy continues his travels by visiting Tennessee. Support and action group facilitator Reagan McGee took Archy (a bigger, plywood type) to a health fair in her area. Her mother and stepfather created Archy for her.

      I am in a new grade and I have a new teacher. She’s fairly young and she’s very cute. Her name is Miss Nancy Nuttley and she’s a grey squirrel. Her tail just swishes around when she walks and it’s so very cute. All of us boys are sort of in love with her, but I know that will change when we get our first hard test or hateful assignment. We’ve already had to write about our summer vacation and I chose to talk about meeting all the kangaroos in Australia and having my picture taken with some famous people in the world of CMT. Most of the kids in my class know I have CMT by now, but Miss Nuttley is new this year, so I figured I might as well bring it up early in the year and get it out of the way. In my essay, I also mentioned being part of the “Fresh Air” program that brings city turtles to live with country turtles for two weeks. I mentioned that so that Miss Nuttley would know that I was able to save Vinnie from drowning because I can swim really well in spite of my CMT. I don’t want to go through the year having her think I need to be coddled and kept from all physical activities.

      It’s actually pretty hard to find just the right response to my having CMT. On the one hand, I want my teachers to know that it takes me a little longer to get some assignments done because my handwriting is a problem, but I don’t want them to treat me differently in front of my classmates. Kids won’t like me if they think I’m getting away with doing less than they do. And really, I want to do everything that all the other kids do….I just might need a little more time or a little understanding. I can kick the ball out on the blacktop, but I’m horrible at running. I can play chess and checkers better than a lot of other kids my age, but I can’t button the little buttons on my shirt. It’s weird about what I can do and what I can’t. When my Mom is frustrated with me, she says I can do all the things I really love to do and none of the things I dislike. I actually think she’s right, but she’s got the reasoning wrong. The way it really works is that I love the things I can do well, and I dislike the things I can’t do.

      So, another school year has begun. I’m sure it will have its high and its lows, but in general, I am looking forward to it. Instead of the old “show and tell” we now can bring in presentations to share with the class and my Dad is helping me make a sort of PowerPoint presentation of my trip to Australia. I’m really looking forward to sharing that with all my friends because the furthest anyone else went this summer was to Wheeling, West Virginia. I’m sure that was a nice trip, but it can’t compare to being in Australia. I’m so proud that I was invited to go along on that trip!

    • Archy Goes to Cooterfest (November-December 2010)

      I just got back from Florida, where it was hot and humid, but there were so many turtles! I was in heaven. I’ve never been so appreciated in my life. This kind of adoration could go to a small turtle’s head!

      We were invited to Inverness, Florida, by Ronnie Plageman, who is the support and action group facilitator down there. He began talking about going to Cooterfest when we were in Las Vegas for the Support and Action Group Facilitator’s conference. Elizabeth Ouellette and Pat Dreibelbis wondered what on earth a “cooterfest” might be, and only after reading the website did they realize that it was a celebration of a turtle who saved the animals that lived on the shores of Lake Tsala Apopka. It seems that there was a very noisy gator who had been making a terrible ruckus and keeping the animals awake. They nominated Turtle to handle the problem because he was a perfect choice (he could swim and he had a hard shell to protect him). When he swam out to meet the gator, Turtle was gobbled up, encased safely in his shell, before he could even talk to the alligator. When he thought it was safe, Turtle peeked out and saw a sharp spike from a trout’s fin embedded in the side of Gator’s stomach. Turtle pulled the spike out and a great roar resounded around him. Then he was thrown from the belly into the lake. Gator felt so much better that he returned Turtle to the shore on his back, promising friendship and quiet forever. Turtle was cheered by the animals and called “Courageous Turtle” by Possum. Baby Mouse couldn’t quite say that so he called him “cooter.” And that was the name that stuck. Now, the Great American Cooterfestival in Inverness celebrates the little turtle with the big heart.

      Archy Train
      Jerry Cross drove the Archy train all the way from Nevada to Florida to be able to spread awareness and provide fun for all the little kids who took a ride during Cooterfest.
      Jerry Cross drove my “Archy” train all the way from Nevada to Inverness so that the kids at the festival could ride and he could raise money and awareness about CMT. He is such a nice man! I really loved him, mostly because he really loves me and that’s pretty hard to resist. He was helped by his wife Irene and his brother-in-law, Ralph. Without all of them, the festival would have been boring for the little kids. The train was a huge hit…some kids wouldn’t get off the train and rode 7 times in a row. My sister Tara came with me and she was another big hit. She’s really cute and all the other bigger turtles at the fair wanted their pictures taken with her. She took the tickets when the kids got on the train ride and the little kids were really in awe of her. I think she enjoyed being there as much as I did. Lots of people learned what CMT is from Elizabeth and Dana and Pat, who worked at the ticket booth. We even went to a support and action group meeting Sunday before the fair started and met a lot of nice people and talked a lot about CMT and what’s going on with the STAR program. All in all, I would say that the trip to Florida was pretty excellent. I didn’t get eaten by an alligator (I was a little worried about that), and we accomplished a lot.
    • Archy Contemplates Heredity (January-February 2011)

      I had a wonderful holiday vacation with my family. I hope you all did, too. We stayed home and my grandparents on my mother’s side visited us. My grandfather, Ralph Turtlebaum, and my grandmother, Esther Turtlebaum, live close enough that they can visit more easily than my father’s family. His family, the Shelleys, are a state away and as slowly as turtles travel, it’s just too far to go in the winter.
      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.
      The reason the Turtlebaum’s visit was important is because it’s that side of the family that has CMT type 1X. My PopPop Turtlebaum has really obvious signs of CMT just like I do, but my mother, who got it from her father, really hasn’t had many problems yet. She does get really tired from standing on her feet too long when she’s cooking holiday meals or shopping, but so far, she hasn’t needed braces or even physical therapy. My Pop- Pop was trying to explain to all of us how X-linked CMT works. The one thing I got out of his “talk” was that I could have boy turtles without worrying about passing on the CMT, but all of my daughters would have it on one of their X chromosomes. I am really far from thinking about having children, but I thought that was an interesting point anyway. People who have other forms of CMT can pass it on to either their boys or their girls. The reason my mother doesn’t have very serious characteristics of CMT (yet) is because she has another X chromosome and it can be dominant, making the X with the CMT less of a problem. My Pop- Pop’s mother, who had CMT and passed it to him, developed more serious issues as she aged. Eventually, she needed a walker to get around. I don’t remember her, but my mother said she was pretty weak before she passed away. If this discussion doesn’t seem like a very good holiday event, it really was. Lots of my cousins and aunts and uncles were around, and it was the first time that all of them knew what I had that made me walk funny and how the inheritance worked in our family. My PopPop said that holiday gatherings are actually great places to bring up CMT and to make sure that no one in the family is ignorant of the fact that it is genetic and that in our X-linked family it can seem to skip generations when it really isn’t doing that. On a personal note, I think some of my more aggressive cousins treated me with a little more respect this year. They were actually curious about my orthoses and a little jealous of how cool my camouflage pair really is. I want to start the New Year by thanking everyone at the CMTA for a fabulous 2010. I got to travel to so many conferences and fundraisers that I felt very special. For a little turtle like myself, it can be overwhelming, but exciting, nonetheless. Here’s to an equally great 2011! [/toggle] [toggle title=”Archy Runs for Office (March-April 2011)” iconColor=”rgba(51,141,88,1)” titleSize=”20″ iconSize=”20″]
      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.
      I’m having a good year in second grade and I made a pretty difficult decision this week. Student council elections for new positions next fall will be coming up in the next two months. I’ve decided to run even though I know that it will be scary standing in front of the whole school to make speeches and hoping that people will eventually want to vote for me. You can’t run for student council until you are in third grade, which is where I will be next year. One of the biggest problems, as I see it, is my having CMT. I wonder if the other kids running will make it an issue in the election. I watched the presidential elections and the recent ones for governors and senators and they were pretty mean. It seems like they focus on character traits rather than whether the person would make a good representative of the people or not. I worry that they will say that I’m too weak to make a good council member or that I have a “disease” which will make the students sort of afraid of me. So, I have decided that I have to be the one to make an “issue” of my CMT. If I talk about it first, then the other candidates won’t have any ammunition to fight me with. I can tell them about the disorder, the work I do for the CMTA and our hopes for a cure through the STAR program. I actually think it might work in my favor. I don’t think there are many other third graders or even fourth or fifth graders who work as a volunteer representative of a national organization or who have travelled to Florida, Las Vegas, and Australia.
    • Archy Learns a Lesson or Two (May-June 2011)

      Well, I’ve learned a valuable lesson. Or, at least, that’s what my mother called it. I didn’t win the election at my school to be a representative to student council. I thought I had good ideas and something that was realistic and doable as a plan for next year. It turned out that wasn’t what the students wanted.
      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.
      This is what happened. I talked about having CMT and being a representative for the CMTA because I didn’t want any of my opponents to use my “difference” against me. They didn’t. They never talked about my having CMT as a reason to vote for someone else. What they did do was what my mother called “clever bribing.” One of the boys I was up against gave out coupons for French fried grub worms from Mac- Dougals. That’s just about everyone’s favorite food. Another one of my opponents, Rachel Raccoon, wore cute little skirts and shook her gorgeous tail at the boys, and I’m pretty sure they all voted for her. In any case, I lost by a fairly convincing number of votes and I learned the so-called valuable lesson that the best candidate is not necessarily the one who gets elected. My mother and my father said that’s true in the national elections, too. Sometimes the person with the most money or the one who is popular for some reason or another is the one that wins, while the candidate with the well-thought out plans and the most concern for the good of the people comes in last. I guess it’s nice to think it wasn’t all about me being unelectable, but frankly, it still feels pretty bad. My best friends, of course, stood by me and even after the defeat, they told me my speech was good and that they liked my campaign to “march forward with Archy.” My teachers were pretty cool, too. They said it was a clean campaign and that I should be proud of the great effort I put forth. I don’t know about you, but losing never feels very good no matter how many nice things your family and friends say about it. I swim and when I come in second or third or last, my coach always tells me I put great effort into my heat or that I will win the next time. I think there must be some manual somewhere that tells adults what to say when their child or student loses. The problem is, I don’t have a book to tell me how to feel about the loss. I’ll tell you guys the truth. I went home and cried and then felt sort of sick to my stomach for days. I had worked so hard and I had my hopes up and then….nothing. Thank goodness there are exciting things happening at the CMTA that I can be involved with. They are already working on Awareness Month….that’s right, not Awareness Week this year but Awareness Month. That’s a sign of how much we want the public to understand and recognize what CMT is. I’m working on some ideas to use during Awareness Month here in Greenwood. I’m planning a swim to raise money for the STAR program (swimming is still my best sport) and I’m hoping to do as well as the Berons and Steve O’Donnell. They are my heroes for doing swims to support the work of STAR. I hope you can all find something to do to celebrate Awareness Month and to support the work of STAR. They are getting close to medications that might improve the lives of those with Type 1A. That’s not me, but one day the work will be about x-linked and I’ll be in line to do everything I can to get that research funded, too.
    • What I Did on My Summer Vacation (July-August 2011)

      You’ll never guess where I am for summer vacation. I got invited to visit California and stay with the Ouellette-Bouchard family. My parents weren’t too sure about letting me go so far away without one of them, but since Elizabeth Ouellette has a son with CMT, they decided she would know what to do if any problems arose. So, after a body-numbing plane ride, I arrived in San Francisco. I’ll just say that everything that I’ve ever heard about Californians is true. They are much less excitable than their Eastern counterparts. When one piece of my luggage didn’t turn up, Elizabeth was like “Oh, well. It will get here eventually and in the meantime, you can just wear your shell everywhere you go.” I, of course, was completely devastated because I wanted to show off all my cool summer outfits. I tried to be brave about it all, but it was not the best way to start an exciting western adventure.
      Grey Squirrel
      Archy and grey squirrel became good friends during his vacation. (Flat Archy stood in for the real Archy in the photo.)
      The house that Gilles, Elizabeth and Yohan live in is very nice. They have lots of wild animals in their yard. Elizabeth even found a possum in her backpack in their garage. I think the most common animal is the grey squirrel, many of whom are my friends back in the Greenwoods. The weirdest animal is the one that lives in their house. They have a cat with no fur! She looks like a walking water bottle—all sort of rubbery looking, although she feels pretty good. I’m going to go horseback riding with the family and I don’t want them to know this, but I am terrified of getting up on one of those huge animals. Yohan rides one in spite of his CMT, but he is a teenager and has been riding since he was little. Besides, he’s an adventuresome person who will try anything. I usually just back into my shell when something comes up that I don’t want to do. Here, of course, I’m visiting the family and it would be very rude to not do something they think I would enjoy and benefit from. Apparently, riding helps build core strength and is very good with improving balance and other problems of CMT. Well, this is it: I’m leaving in a few minutes to go riding. Everyone except me seems really excited. I feel sort of bad because they went to so much trouble to set this up. They have a special horse at the stables for me and a special helper who will walk along with me in case I lose my balance. Sigh. Okay, the riding area is really pretty and the horses are beautiful, although terrifyingly huge. I’m getting “suited up” to ride. Getting up on the horse wasn’t too bad because someone from the stables picked me up and put me up on the horse with Elizabeth. Elizabeth was very careful with me, but, alas, bad things can happen even when you are careful. We had just started to make our first trip around the paddock when I somehow slipped out of Elizabeth’s grasp and ended up on the ground. Fortunately, I have a shell I can retreat into and I fell on straw and grass. I didn’t get hurt, but poor Elizabeth was a mess because she thought she had killed me. I’m fine, although this has decreased my desire to ride a horse even more. My summary of this summer adventure in California is that although California is very different from Greenwoods, it’s a great place to visit. The people and the animals are friendly and the weather is great. I learned that doing something outside your comfort zone is a good thing. It makes you braver and smarter and more interesting. I think I grew up a lot this summer, and I feel very confident about taking on third grade. And best of all, I will have a great story for “What I Did on My Summer Vacation.”
    • Back to School! (September-October 2011)

      Every year there is both excitement and dread when the first week of school rolls around. I’m worried that no one will like me … that no one will even know who I am …. that I will not be able to write a good “What I Did on My Summer Vacation” essay. Or, worse than no one knowing me, what if someone knows me and hates something I’ve said or done? I work myself into a state of anxiety every year. My Mom keeps telling me that it will get better, but it really doesn’t.
      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.
      On the other hand, I look forward to meeting some new kids in my class, going on awesome field trips, being smart in some subject that I might not ever have had before, and learning new things. Yes, school can be cool … once you get over the rough patches. This year I’m in the third grade and my teacher is Ms. Annabelle Armadillo. She moved to the Greenwoods from Arizona and she’s been telling us all about the deserts and the cactuses and animals that we never see around here. I like her Unfortunately, I also have Samuel Skunk in my class. I think he’s been held back and he’s just not a nice animal. When I tell my family about him, they say that he probably doesn’t feel good about himself and that’s why he says nasty things to the rest of us. That’s fine, but when he is taunting me about losing the election at the end of last year, it’s very hard to remain cool and collected. I guess, if there is a good side to his attacks, it is that everyone else sympathizes because they have also been his victim. Miss Armadillo talks to the class in general about thinking about how we make other people feel, but I think he’s the only one who doesn’t really listen. I’m on the swimming team again this year and that makes me feel good. I’m not superfast, but I’m really dependable, and the coach says I’m a team player. I guess it’s just something older people say to make kids feel like they belong. I wasn’t sure if I was going to write about this or not, but I’ve decided that I can because none of you will be talking to my classmates. There’s a new girl turtle at school named Tiffany and she’s exceptionally cute and nice. Ok, I’ll say it: I think I have a crush on her. She makes my shell turn pinkish brown when she looks at me. Sometimes she’ll tell me that I’m so smart or cute, and I can’t stop stammering or blushing. I’m hoping to take her to the Harvest Festival and maybe even have her over to my house to study some afternoon. Keep good thoughts for me—I don’t want to mess this up!
    • A Turtle’s Dilemma (November-December 2011)

      Turtles don’t celebrate Thanksgiving like people do, but we do have a holiday that revolves around the changing of the seasons and the bounty of the harvest. It’s an animal thing, I guess. Anyway, we had the dinner at our house this year, and my mother was doing all the work—which is the way it always is, much like in human homes.
      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.
      She was doing a lot of the preparation in the days leading up to Harvest Holiday, and I noticed she was complaining a lot about how tired she was and how much her legs hurt. That’s not the way my Mom usually is. She is endlessly energetic (or it seems that way to me), and she always gets everything done. This year, though, was different. The weird thing is that I was pretty sure I knew what was wrong, but no one else said a word about it. My Mother has CMT. She carries the X-linked form that my Grandfather Turtlebaum passed on to her. That’s what I have too. She likes to believe that she has no symptoms, but I notice her unsteadiness and how she likes to lie in the pond and just wiggle her legs after she works on her feet all day. For some reason, though, she won’t talk about it. I know she is upset that she passed the condition to me, but she always encourages me to do anything I want and to never let CMT get the better of me. So, why won’t she admit that she has the same problem? I think it would make us closer. We could compare notes and give each other hints to make life easier. But she just won’t discuss it. So, here we were trying to get ready for this huge gathering and Mom was so tired and her feet and legs so sore that she really couldn’t keep working. My dad, my sister and I had a meeting and decided that we would just take over and do a lot of the work. It was a good idea, but it turned out that none of us can cook as well as Mom. My sister was the best because she likes to watch my mother in the kitchen; Dad was good at the heavy lifting and moving of furniture; and I was useless. I mean, I could help set the tables and I could wash the lettuces and carrots, but I had never paid any attention to all the work that goes into one of these get-togethers. The event went off without a hitch, mostly because my mother got her “second wind” as she calls it and was able to finish up. What was disappointing to me, though, was the fact that my mother is ashamed of having CMT and won’t even talk about it with me, of all turtles. I know so much from working with the CMTA and I feel like she would actually be better off if she could just get to the point of admitting that, at times at least, she can’t do certain things anymore because of her CMT. My quandary? Talking to my mother about this problem. What do you think?
    • Celebrations and What Comes After (January-February 2012)

      I don’t know about you, but I love the holidays. I look forward to them for at least two months and then, when the celebrating is over, I feel a little empty. I’m just a kid, but I don’t think my reaction is all that unusual.
      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.
      Around our house, we put up decorations and start baking goodies weeks before the first holiday hits. Our family is a little unusual because we celebrate both Hanukkah and Christmas. My dad’s side of the family is Methodist and my mother’s side is Jewish. So, I know I have it good. We light the menorah; we decorate the Christmas tree, and, most of all, we get a lot of presents and we eat all kinds of great food! When everything is over, we have to un-decorate the house and put away all the ornaments and bright lights. It’s kind of sad. On top of everything else, after having a nice long vacation from school and homework, it’s back to the classroom and all the expectations that my parents put on me. I’m not complaining; I’m just telling you how it is. The fact that it gets dark so much earlier and keeps us kids from playing outside after school is a problem, too. It’s just very hard to keep your spirits up when the winter seems endless and there is nothing to look forward to. Of course, I’m still crazy about Tina Turtle so I can focus a little on Valentine’s Day and what I will give her. I’ll probably make her a card because the ones they sell never seem to be just right for what I want to say. But, in general, life is drab and boring in comparison to the holidays. What I think is interesting is that my dad says that my feelings aren’t unusual at all and that many people have the exact same problems with becoming depressed after the holidays. In fact, he told me that for some people, the holidays are actually worse than what comes after. If they have no family or friends living nearby, they can feel very left out and very alone. The scariest part of my Dad’s story was that he told me that people sometimes become so depressed that they commit suicide. That is so sad. I feel like we could prevent that from happening if we tried a little harder. My mother always invites an older turtle from our community to have Harvest Holiday dinner with us. I thought she did it to make sure they got a good meal, but now I think maybe it’s to make sure they get a little boost to their spirit. After listening to my dad talk about the “down” time after the holidays, I decided to look around our neighborhood and figure out who doesn’t have a supportive family around them to help them get through the dark days of winter. I’m going to visit them and after I’ve visited, I’m going to make them a card to help them know that someone is thinking about them. I really hope it helps.
    • Luck Is What You Make of It (March-April 2012)

      I think I’m lucky to be a turtle, CMT and all. Let’s face it. The expectations on turtles are much less than on human kids. First of all, turtles as a species all move really slowly so my awkward gait is not noticeable. Then, I go to a school where all the animals are so different that there aren’t really any expectations in that area either. Human kids might be teased for not being good at baseball, but turtles are always the last chosen for that game because we’re too close to the ground to be good at pitching, or throwing out a stealing player.We don’t roller blade or ride bicycles very much, but the fleet, athletic animals don’t really think we should be able to do those things, so they don’t tease about those inabilities, either. We are fabulous swimmers and we don’t mock the raccoons and skunks, who aren’t especially gifted in that department. All in all, I think diversity is quite handy when it comes to avoiding being picked on.
      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.
      If you think I am always happy and that nothing ever goes wrong, let me assure you that is not the case. Instead of getting better at keeping up with the other kids, I think I’m getting worse and they are noticing. So far, they haven’t really teased me about my slowness in getting ready to go out for recess or how long it takes me to pass out the test papers. But, I see them look at each other and smile, and somehow in the deep recesses of my heart, I know it’s not a smile of support. I’ve talked to my best friends about all my inabilities and they always reassure me that no one notices and that I do so many things so well that it doesn’t matter. But, why does it feel so bad? Parents and friends can be as supportive as possible and I still think I’m not good enough. I need to develop a thicker skin…that’s one of those old fashioned sayings that’s particularly silly for a turtle since I clearly have very thick skin and a rock hard shell. Of course the saying is about my insides needing to be less susceptible to harm, but it’s one of those weird sayings. I guess the idea is that if your skin is thick enough, the hurt can’t get in to the heart area. It just doesn’t work for a turtle very well. So, I started out thinking I was lucky to be a turtle and I ended up feeling sorry for myself. That’s not good. I really am lucky. I just need to remind myself of that. I have a wonderful family and great friends. I go to a good school where I am generally well-liked. I have a grandfather who is the perfect model of how to not just survive, but thrive, with a disease like CMT.What more could I ask? Okay, that’s a bad question because all of us want whatever we don’t or can’t have. I’m no different. I wish I were fast and tall and physically impressive, but I’m left with smart and thoughtful and kind and a good swimmer. All in all, I think I’m lucky to be a turtle, CMT and all.
    • Problems with No Solutions (May-June 2012)

      I think I’m a very clever turtle and I can figure my way out of most problems. What I have come to realize recently, though, is that I can’t solve other animals’ problems. It all started when decided to start a Dear Archy column in our school newspaper, The Screech Owl Gazette, where I would answer questions about health issues, social problems, and just regular old complaints about school. When the column was first announced, it was met with some fairly rude comments and laughter. I don’t think my classmates thought anyone would actually write in. That was not the problem. The problem was what they wrote about.
      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.
      My first question was from one of the rabbits in fourth grade. He has a form of ataxia. (I had to look that one up—it means he has terrible balance problems.) He wanted me to tell him how to be a rabbit without being able to hop. I think that situation must be a lot like the one humans with CMT face when they can’t do their jobs. With humans, you can tell them to try to switch from their really demanding physical jobs into a desk job. But how do you tell a rabbit not to hop? I made a mess of that one. Then, I got a letter from a little girl squirrel. Her tail was so thin and limp that she didn’t do any swishing when she walked, and it couldn’t keep her warm on really chilly days. She was being picked on and bullied. I know it’s wrong to put too much emphasis on appearance, but a squirrel’s tail is what makes it a squirrel. I was teased when I first got my AFOs, but once I explained that they were braces like other kids had on their teeth, everyone just sort of dropped it. She wondered how she could take the attention off her skinny tail. I told her I was teased when I first got my AFOs, but once I explained that they were braces like other kids had on their teeth, everyone just sort of dropped it. I told her that the best way not to get teased is to do something that others admire, which will take the attention off the negative thing. I suggested that she find something that she was really good at—maybe running or storing nuts or doing math problems. The hardest question of all came from another turtle who wanted to know how to tell someone that you like them without actually coming out and saying it. The reason that’s the hardest question is because she was asking about telling me, and I didn’t have any idea how to answer her. I have a girlfriend, and I didn’t want to hurt her feelings. So, here’s my advice—don’t give advice. Lucy, in the Peanuts cartoons, might have been able to charge 5 cents and do well, but it’s certainly not my strong suit, even if I think I’m pretty clever.
    • Off to the Wilds (July-August 2012)

      You will never guess where I am right now. I’m at camp. I’m trying to act excited, but I’m actually terrified. My parents gave me the lecture about how this experience would help me grow up, and I nodded, but frankly, I’m not sure they knew what they were talking about. Maybe they were remembering camp from 40 years ago or something, but the kids at this camp don’t seem especially friendly, and I feel a little like the smallest, most “target ready” of the whole bunch.
      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.
      It is my personal opinion that many of the “kids” here are at camp because their parents were looking for a break from some pretty difficult children. I’m not sure if the counselors do this on purpose, but the scary kids are scattered throughout the cabins, so there’ s no way to avoid them. If they were all in one cabin, I suppose the counselor for that cabin would probably last about two days. This one raccoon in my cabin reminds me of someone from home. He is mean-spirited. He put mud in one kid’s drinking water and tied knots in the wet clothes of one little chipmunk. Of course he was “punished,” but I don’t think it had any effect other than to get him some more attention … which is just want he wants, in my opinion. Of course, I am just keeping quiet and retreating into my shell when necessary. I have noticed that when mail is delivered, Randy (the troublesome raccoon) doesn’t ever get any. This got me thinking that maybe he isn’t as mean as much as he is lonely. I know how I feel cut off from my family, but I get one or more letters and a box of goodies from the pond every week. If I didn’t get anything, I would feel awful. Does feeling unloved make kids mean? I don’t know, but I’m now determined to see if I can change Randy before camp is over. I was chosen to be in charge of the swimming relay team from our cabin. Of course, there were some obvious choices— Bradley Beaver, Sampson Water Snake, another turtle named Trevor, but I decided to step out of my comfort zone and pick Randolph Raccoon. Was he surprised? Were all the animals in my cabin surprised? Was my counselor dumbfounded? Yep. But I did it anyway. I then gave a speech about how important it was to be part of a team and how every single member was crucial to our ability to win. I said we had to support each other and act like real teammates with no bad behavior. If Randy thought I was talking to him, he didn’t act like he did. Now the perfect end to this story would be that my team won the blue ribbon for relay racing in the water, and Randy was a perfect member. But things rarely end the way we “plan” them out. Randy was pretty good. He was a terrible swimmer, but he tried, and he didn’t dunk any of our swimmers. Unfortunately, he did dunk the entire winning team….we came in second, and he was not happy with that. What lesson did I learn from my stay at camp? Well, Randy was actually pretty friendly to me all summer, so I think taking a chance and picking him was a good idea. Should I stop trying to “fix” the world? Probably. Will I stop trying to change the world? Probably not. It’s just who I am.
    • Conquering Cramps (September-October 2012)

      I’m going back to the doctor’s. I have been having horrible cramps in my legs since returning from camp this summer. They are especially bad at night. My legs cramp so badly hat my foot actually gets deformed and I can’t get it back to the normal position. Besides that, these cramps really hurt.
      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.
      I’m not sure what the doctor can do. I’m afraid that the cramping is just part of having CMT and I can’t get better. Still, I’m hoping that I’m wrong and that he will have a way to fix the problem. My mother is genuinely worried about me. I’m not really a complainer and I tried to just keep this problem to myself because I know every time I have a new symptom she thinks about the fact that I inherited my CMT from her. In any case, she is taking me to Dr. Pythonic, a snake who practices not far from our pond. I actually like to go see him because his nurse, Ms. Redd, is a real fox in all the ways that word is used. So, the doctor thinks that I need to exercise more, drink more water, and maybe even eat a banana before I go to bed. He is reluctant to give me any drugs because I’m still pretty young and small. I know I can do all the things he advises, but I’m still anxious about another cramp “attacking” me in the night. It’s really scary because I can’t really massage it out and the usual advice, to walk around to make it go away, simply doesn’t work. I’m in so much pain that I can’t stand up, much less walk. I’m happy to report that it’s now been four days since my visit to the doctor, and I can now make it through the night without any problems. What wakes me up how is having to go to the bathroom because I’m drinking so much water. I’m pretty conscientious, but my mother keeps pouring me glass after glass of water while I’m working on my homework. I feel like I’m going to float away! I’m really happy that these little “fixes” seem to be working because I was going to school exhausted every day. I can’t afford to be less than my best now that I’m in fourth grade. It’s noticeably more challenging than the lower grades were. If you ever watch that TV show, “Are You Smarter than a Fifth Grader,” you know that the stuff kids have to learn these days is awfully complicated. CMT may affect some things, but it doesn’t affect my ability to learn so I’m going to focus on that to be the best student and turtle I can be.
    • Being Thankful and Making Wishes (November-December 2012)

      Who doesn’t look forward to the holidays? Once fall arrives, we have Halloween and then Thanksgiving and Christmas and Hanukah. It’s hard not to get excited about all the celebrating.
      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.
      But, this year I was not so happy about our family get-together for Thanksgiving, or Harvest Festival as we often call it. My mother has three sisters and one brother. Since we are an X-linked family, her brother did not inherit CMT from his father. That causes problems all its own. His kids are a little quick to criticize me for doing things slowly or not at all. Their parents always step in to correct them, but frankly, the hurt feelings don’t go away so easily. This year one of her sisters was coming with her family. Her sister inherited CMT as did all the girls and her two sons. Initially, I thought the visit would be fun because we all share the same problems and have the same limitations. What I learned was completely unexpected. My cousins live in an area of the country that doesn’t have as many medical experts as where I live in Greenwoods. When Tommy and Teddy arrived, I was astonished to see how disabled they seemed to be. They didn’t wear AFOs and their walk was very unsteady and awkward. It was pretty obvious that they didn’t know much about how CMT should be treated. We found out that they had never been evaluated. When they started having problems, their mother, Aunt Tess, just assumed they had the same problems as Grandpop Turtlebaum. Without an official diagnosis, they were not getting any special accommodations at school, and they were not registered with their local MDA for help with testing and physical therapy. When I tried to talk to Tommy and Teddy about CMT and all the things I’ve learned since working with the CMTA, they really weren’t interested. Their philosophy seemed to be to ignore the problem and hope it would go away. They didn’t even seem to understand that their CMT would get worse, for sure, if they didn’t work to prevent that. I invited them to go swimming with me, but they said they weren’t very good at that. They had avoided doing exercises of any kind for so long that they really didn’t have much muscle left in their legs. Frankly, it scared me. Even their mother didn’t seem terribly interested in all the information that my Mom tried to give her. Not only did this experience make me feel terrible for my cousins, but it made me think about families that live in more rural, or less populated areas where the medical care is not as good as it is in Greenwoods. It’s difficult to deal with CMT. Period. But, if you add in trying to deal with it on behalf of your children when there is no one who understands the disease, its symptoms and what preventive measures should be taken, it’s much worse. So, in this season of celebration and Thanksgiving, I am so grateful that I know as much about CMT as I do and that many wonderful people care for me and advise me. What I wish is that everyone would take advantage of all the information that exists about CMT so that their care is the best possible.
    • “Hitting the Skids (January-February 2013)

      Usually at this time of the year, I talk about all the fun and festivity of the holiday season. But, this time, I have a real problem that I’ve been dealing with that I think might affect all of you who read my articles. We had the horrible hurricane or “storm” Sandy around here in the middle of October.We are still trying to get our homes back together after that disaster, and we were lucky enough not to suffer as much damage as some of the people in New York and New Jersey.
      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.
      But, hot on the heels of that problem has come the winter we never seemed to get last year.We have already had freezing rain and icing problems, and that’s what I want to talk about. I have four feet, so you would think that I would be pretty gifted at walking on icy patches….but you would be SO wrong. If anything, it seems like the two extra feet just give me more of a sliding potential. In winter, I feel like I’m trying to steer a toboggan without the protection of actually having one under me. Since my mother is noticing more and more issues with her CMTX, we decided to get some advice on how to stay upright rather than becoming airborne when walking on icy paths. The first piece of advice, which I got at a local support group, was to avoid wearing my sneakers when the potential for slipping presents itself. Apparently, sneakers are especially slippery when wet. One suggestion for still being able to wear your sneakers in the winter would be to buy something like a “crampon” which is a traction device to improve mobility on snow and ice, sort of like the old chains that humans used to put on their car tires in the winter to keep them from sliding.With them, you can, according to their manufacturers, walk across glaciers, ascend snow slopes, and climb frozen waterfalls. Since none of those are things we really need to do, we need a more simplified version. Ultra Snow and Ice Cleats are sold at Amazon. com, and they just pull on over your regular shoes. They fit all flat-heeled casual shoes and sneakers. They only cost $17 from Amazon and they can be lifesavers in icy weather. The other option for walking more safely is to use a cane or some kind of walking stick.While I prefer not to use such devices because I don’t walk upright and because I’m kind of young to need that type of support, lots of older animals in Greenwoods use them.When it comes to safety, we should try not to be too vain because falling and breaking bones is a real threat to our health. They do have some very cool types of canes, and one of the big dogs in the neighborhood has a cane with cat pictures all over it. I think that’s what my English teacher would call “irony.” My mother tries to make me wear lots of extra clothing to pad me if I do fall in bad weather, but that just makes me look really goofy. So, this year, I’m going to get good boots with traction on the bottom and a pair of snow and ice cleats to keep in my locker at school so I’m safe no matter when the storms hit. I hope you will, also, take care at this time of the year.
    • Archy Steps up for CMT (March-April 2013)

      I really thought that I was going to go insane living through the dark, gray days of winter until my Physical Education teacher announced that we were going to participate in a program called “Stepping It Up for CMT.” The program is run by the CMTA, and I had read about it in the newsletter, but I never imagined that we would be doing it at Greenwoods Elementary.
      Archy Stepathon
      Archy helps kids “Step Up for CMT” in a popular fundraising program.
      As soon as we learned about the cool pedometers that we would be wearing while we did some “stepping” work in class, everyone who knows me wanted to know what the program was all about. I’m ashamed to say I hadn’t really ever learned much about the program, so you can imagine my surprise when Jeana Sweeney arrived to do an assembly, and she talked about “Archy” the mascot turtle of the association and how he has CMT. She explained that the point of the program was to raise money for research to help find treatments and possibly a cure for kids like me. I almost died of pride and a little embarrassment. I try to keep a low profile about my CMT. Of course, my close friends and classmates know, but I never wanted the older kids to know because I was afraid they might pick on me. Well, Jeana spoke so glowingly of me and my accomplishments as a spokesturtle for the CMTA that everyone was impressed with me and wanted to talk to me about what I do and where I get to travel for the CMTA. I think they actually were a little jealous. The way the program worked was that we were all given pedometers while we were in gym class, and we recorded the number of steps we took. Needless to say, no matter how many legs we had, we could only count the steps of two legs to make it fair for everyone. Once you completed the stepping, you took your sheet with the steps you had taken home and to neighbors to ask for contributions. The contributors could either give a set amount, or they could pledge an amount per step. My parents just sent a check for $100 for me because they were so proud. The other animals were anxious to win a prize for the most money raised. I don’t think you will be surprised to learn that one of the fifth-grade rabbits was the grand prize winner. He just hopped and hopped and hopped and won easily for most steps and most money. While the program was going on, there were posters of me on the walls and bulletin boards all over school. The local news even did a story on what our school was doing called, “Kids Helping Kids.” I was really proud of how well the other students supported this effort. I honestly felt like they got involved because they actually knew someone with CMT. I’m really hopeful that all the CMTA’s research, especially the STAR program that we learned about, will one day make CMT a problem of the past. I want to make that happen. Don’t you?
    • Drive the Boat! (May-June 2013)

      Everyone here is looking forward to summer and all the fun activities that come with it. I’ll be going to summer camp again this year, which is okay, but I get a little depressed because I can’t play all the sports my friends do, like softball.
      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.
      I have two strikes against me. I’m a turtle, naturally slow and not very sports-oriented, and I have CMT. Together, they make almost everything except swimming a frustration. I was spending a lot of time with my head hung down and my spirits a little deflated. My friends were all encouraging me, saying I could just pinch hit or something, but it wasn’t making me feel any better. Then, one glorious morning a woman who works at the CMTA told me a story about some advice she got that really hit home with me. She had always hoped to be a water skier, but despite trying very hard, she just couldn’t do it on her weakened CMT ankles and legs. A well-known orthotist who works with a lot of CMT patients told her that the secret was to learn to “drive the boat.” She would be with her family and friends and not miss out on any of the fun. She embraced the advice and is content with water skiing vicariously. After hearing her story, I decided that I needed to “drive the boat” with my friends and softball. I asked the coach if I could be a first-base coach or statistics-keeper. He was very open to my working with him since he knows I follow sports very closely and would learn anything I needed to know to do a good job. What a difference that story has made in my life! Now I can be with my friends no matter what activity they choose to do. I just have to figure out how I can “drive the boat.” I am looking forward the end of school and the start of summer vacation. I’m always happy that classes are almost over, as are my friends. But now, I’m really looking forward to being with my best friends all summer and being a part of the team.
    • Archy Joins a Team (July-August 2013)

      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.
      I have always been involved in swimming, which is sort of a team sport, but each swimmer has his or her own responsibilities and can do really well even if the “team” isn’t very good. So when you swim, you miss all the team-related lectures and the catchy phrases … like “There’s no I in team.” This summer I was a baseline coach for a baseball team. For the first time I got to experience all the good things about being on a team—and all the problems that go with it. The experience led me to create a list of the do’s and don’ts of teamwork:

      ★ Never point out the failures of others … like our left fielder, who frequently had some problems getting the ball in from the outfield, but who blamed the problems on the inability of the shortstop and second baseman to handle his throws. Good people (or animals) don’t try to make themselves feel better by making others feel worse.

      ★ Be happy for the successes of others. If you strike out, but your catcher hits a home run, tell him how impressed you are that he could handle the pitcher’s curve ball.

      ★ Offer to help people who need your help. I was lucky enough to have a few friends on the team who had played before, and they made me a better coach by teaching me some of the finer points of the game.

      ★ Remember that conflict and disagreement within the team don’t have to end up in an argument. Disagreements give team members the chance to explore differences and see problems from different vantage points. In a team, no one “wins” an argument. It’s a win-win situation.

      ★ Be proud of the team’s success. You could have a bad game or a bad year, but if the team does well, you need to be grateful and you need to express your happiness at the accomplishments of the group.

      A feeling of being part of a successful team isn’t matched by much else. I’ve won ribbons for my swimming, but nothing ever made me feel as good as the trophy that my baseball team won this year. I didn’t even play, but my teammates made me feel like they won in part because I was a good coach.

      While I’ve written about a baseball team, the do’s and don’ts can be applied to any team situation. At the CMTA, there are numerous teams that make the work of the organization more successful. Whether it’s the staff team, or the Branch Leaders or the Scientific Expert Board, each team works to utilize the talents of the group’s members and to make a unified effort more successful than any individual effort could ever be. So, my motto is, “Team: Together Everyone Achieves More.” I’ve already been asked to return as a coach for next year’s baseball team, and I’m looking forward to the experience.

    • Back to School (September-October 2013)

      I usually look forward to the start of school each fall. I’m a pretty good student, and I get a lot of praise for the work I do. Besides, after a summer away from my friends, I’m anxious to see them again.

      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.

      This year is different though. I’m going to a different school where none of the kids or teachers will know or understand about my CMT. I’ve grown up with most of the kids from Greenwood Elementary School. But now I’m off to Greenleaf Middle School. I’m not looking forward to being in the lowest grade and being different. As much as I think I’ve come to accept my CMT, and as well as I do at most activities in spite of it, I’m really dreading the first time someone makes fun of how I walk or how slow I am.

      My mother has been reading about the “meanness” of middle-school-aged kids. It has something to do with not really knowing who they are or how they fit into the scheme of life. But if you’re on the other end of the teasing, it doesn’t really matter why they do it, just that they do.

      I’m pretty self-confident. Having parents who understand my disorder and who don’t cut me too much slack because of it have made me a fairly strong kid. But, let’s be totally honest. None of that takes away the sting of being picked on. I have my really good friends to support me and help me if problems arise, but in middle school our schedules will all be different and I might not get to be with them except at lunchtime.

      So, I’m nervous. I don’t want my mom to know because she already feels guilty that she’s the reason I have CMT. My dad is a great father, but he has trouble remembering what school can be like and how mean some kids are. He tells me that bullies are just insecure kids who get a sense of power from hurting kids who are smaller or weaker in some way.

      My plan (if you can call it that) is to beat the bullies to the “joke” by using humor. Basically, I’m going to make fun of myself and the way I walk and run before the bullies do. That way, they lose their chance to pick on my lack of skill. If they decide to beat me up, I’m guessing the humor won’t be very successful, but that’s where the teachers and my friends come in. I’m not going to take any bullying. I’m going to report it before it gets out of hand.

      I’m a strong little guy. I know all the “right” things to do. The test this year will be whether I can put all my sense and knowledge into play. I sure hope I can … no, I’m confident that I can!

    • “Worrying About the Worst; Hoping for the Best (November-December 2013)

      I don’t know if you all feel this same way, but I get in a place where I’m “comfortable” about my CMT. My dad calls it complacent, but I think comfortable sounds nicer. In fact, what that means to me is that I have dealt with what I can and can’t do, and I really don’t want to think about anything getting worse. For me, my CMT had seemed to level off, and I hadn’t had any dramatic losses in recent months; that is, until very recently.

      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.

      I have a lot more writing to do now that I’m in middle school, and I’ve noticed that my front feet (which function as my hands) get stiff and sometimes curl up after I spend a lot of time holding my pencil and writing or doing math. I have avoided telling my parents about it because I don’t really want to learn what is wrong. I’m actually a little afraid of losing more of my function.

      Of course, whenever I try to hide something from one or both of my parents, I can always count on my older sister to tell on me. I think she’s trying to be helpful, but maybe she’s just trying to be a pain. I’m not sure. In any case, she told our mom that I was having trouble writing and that I was stalling and trying to keep them from knowing.

      My mother did her normal overreacting and thought we should leap in the car and go to the doctor immediately. Even as a kid, I recognize that having foot (hand) cramps and stiffness in my front toes is not an “emergency” sort of event. So, I settled on having her call the doctor, who referred us to an occupational therapist named Hopalong Rabitz. (He said he had parents who grew up watching old black and white westerns on TV, and one of them was about Hopalong Cassidy.) He is, as he said, the beneficiary of their “gift” of a different name.

      We made an appointment, and I suffered for three days thinking I was about to lose the ability to write, the way I had lost the ability to run and compete in most sports.

      When we got to the therapy offices, I was slightly less worried because they just didn’t seem as “hospital-ish” as my doctor’s office is. Hopalong was really cool, and he reassured me right away that the cramping and stiffness was not a big problem, just one that should not be put off and hidden from my parents. (Yeah, I pretty well knew that!)

      He put my front feet in some warm solution and had me just relax and enjoy the feeling. While I was doing that, he recommended that I use some squeezing and stretching exercises to keep my toes (fingers) supple. He also wrote out a permission slip for me to use the school’s voice-command computer when there is a lot of writing to do for a project. That way, he said, I will be able to do the shorter tasks more easily because the long tasks won’t require that I write by hand. When I’m at home, he told me to use the balls and bands to keep my feet flexible so they won’t cramp up so much.

      And, if all of that weren’t comforting enough, he told my mother that I needed to watch Hopalong Cassidy on Nickelodeon at least once a week! (That final instruction might have been in jest, at least a little, but I’m holding my mother to it. After all, you should never ignore what a doctor or therapist tells you to do.)

    • Brightening Up the Dismal Days of Winter (January-February 2014)

      No matter how hard I try, I just can’t seem to get my spirits up once all the excitement of the holidays is over. The weather doesn’t help at all, either. It gets dark too soon to play outside after school and the darkness makes me feel tired even if I’m not. My mother and father both try to cheer me up because they can see that my lack of enthusiasm really affects my school work and my social life.

      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.

      This year, my mother was watching some show on television that was discussing how people in nursing homes and hospitals suffer from a type of depression at this time of the year. So, she got it into her motherly mind that I would benefit from doing some volunteer work at the local hospital. I wasn’t really on board to do this because I’m not really outgoing when it comes to meeting new folks. But, my mother is relentless and so I found myself scheduled in to the Helping Hands program after school.

      My first “meet and greet” was with an elderly turtle like me who was dealing with a disease called Friedrich’s Ataxia. He had problems with balance and weakness in his legs just like I do. But, he also had problems in the central nervous system, so he was much more disabled than I was. We talked for two hours my first day there, and I realized that sometimes it helps to get a different point of view on your own situation. While you are alone and worrying about your problems, you tend to think they are insurmountable and simply “horrible.” When you can talk with someone else who has different problems and sometimes, worse ones, you realize that you really aren’t as bad off as you might think.

      My second encounter was with a little girl squirrel with cystic fibrosis. She was very small and fragile and I realized, again, that I was talking to someone who had more significant problems than I do. We wound up playing Candy Land, and she enjoyed it. I had to be careful not to get her too excited or make her laugh too much or she would start coughing and couldn’t stop. It was truly scary to watch the nurses pound on her back to help clear her lungs. She hugged me when I had to leave and I actually had a lump in my throat about her being alone once I was gone. (You probably won’t be surprised to know that I went back to visit her even though I wasn’t scheduled there again.)

      I’ve kept up with my volunteer work even though I could have stopped a month ago. I’m not sure if working at the hospital has lightened my mood or if it simply gives me something to think about other than my own problems. What I do know is that, just like always, my mother knows what’s best for me. I’m not going to tell her that, of course, or it would upset the delicate balance of difficult child versus caring mother. All you teens and preteens know exactly what I’m talking about.

    • The Tormented Years … Archy Turns 13 (March-April 2014)

      I remember hearing my mother talk about the “terrible twos,” but I don’t actually remember being that age. Apparently, I asserted my independence by saying “no” to every single thing my mother and father asked me to do, including playing with electrical wires. Eventually, I figured out that I would have a longer and healthier life if I followed a few of the rules.

      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.

      Now, I’m living through what my mother calls the “tumultuous teens.” I never feel right. I’m always angry about something, which is weird because I used to be a very calm and happy kid. I’m also always worried, and the worst part of the worry is that I can’t even figure out what it is that worries me so much. I just have this sick feeling in my stomach when I have a few minutes by myself.

      I’ve always loved picking on my big sister, but now I say horrible things to her that she really doesn’t deserve. I feel like I’m some kind of bomb waiting to explode. I think that some of my issues involve my age … which leads to all kinds of strange thoughts and feelings. I also think some of the anger is directed at my CMT, which gets a little worse every year. What seemed like just a stumbling block when I was younger now makes me much different from my friends. They’re getting bigger and stronger and more athletic while I stay the same size and lose more and more of my abilities.

      Another problem is that I can’t really talk about how I feel around my parents because my mother already feels like it’s her fault that I have CMT. My father, on the other hand, doesn’t share any of my problems, so it’s hard for him to totally understand what I’m experiencing. Besides, I’m not sure either of them can remember being 13. But I have found a place to go where people will understand the problems of being a teen as well as having CMT. A CMTA Board Member, Elizabeth Ouellette, told me about a website where teenagers can “meet” to talk about issues that bother them or about wonderful things that are happening in their lives. The site is I’ve already visited and have compared concerns with other teens.

      Since my problems are also problems for my parents, I have suggested that they might want to visit where they can connect with other parents of kids with CMT and share problems and successes.

      I guess the one big lesson I’ve learned so far is that it’s hard to go through this life without help from others. It’s also unnecessary. Now that I’ve connected with others who share my experiences, I’m less angry. I still worry about my future, but I think that’s probably something that all teenagers deal with.

    • Archy Visits Facebook Headquarters (May-June 2014)

      After the winter we’ve had here at Greenwoods, it was a wonderful treat to be invited to visit Facebook headquarters in Menlo Park, California. I stayed with CMTA Board Member Elizabeth Ouellette, and we went to Facebook with Social Medial Director Bethany Meloche, whose husband works there.

      I was so in awe of this place! The grounds were very accessible and there was an air of fun and happiness even though it’s a place of work. There was an arcade and a tiny yellow brick road like in the Wizard of Oz with a miniature house and the legs of the Wicked Witch sticking out and lots of people playing street hockey. (You did have to watch out for flying objects.)

      Archy Visits Facebook
      Bethany Meloche, Elizabeth Ouellette and Archy posed in front of the “Like” sign outside of Facebook headquarters.

      The Facebook campus was enormous, but we only toured one of the buildings. A programmer showed us around and talked about things that were way beyond my understanding. His personal desk had two huge monitors on it and the screens were filled with computer code … rows and rows of computer code.

      What impressed me was the fact that in the back of all the buildings was a long walkway where people of all ages raced around on foot, on bikes and on skateboards. People just whizzed by me. Apparently, there have been times when people walked into walls while looking at their iPhones and iPads, so there were signs everywhere that said, “Look up!”

      There were lots of individual offices in the buildings and most of the doors were closed, so we could see the signs on the doors. The phrase on each door was a palindrome, which means that it reads the same backwards or forwards. (Remember that term from English class?) Two examples we saw were “Rats live on no evil star” and “No melon, no lemon.” They don’t have any hidden meaning; they just show the creative side of the employees at Facebook.

      We ate lunch in a Mexican restaurant for free! And, as if that weren’t great enough, they provide all the free candy anyone could ever want for their employees. They also have a wall of Legos where anyone can make designs on the wall, so I’ve decided that I want to study computer programming and work at Facebook one day, although I’ll have to assume that when I’m older, I won’t overeat the candy like I did on our visit. I felt a little sick afterwards.

      I only had one little complaint. There were no ponds or flowing water on the whole campus. I will have to take that up with the “powers that be” if I really do apply for a job with them one day. I wasn’t sure how I felt about the foxes, either. There was a sign that read, “No photos with the foxes.” There is apparently a family of foxes who have moved in at Facebook, and they even have a Facebook page dedicated to them. Before we left, we finished our busy day with a photo at the famous “Like” sign. No self-respecting boy turtle could pass up the chance to be photographed with two fabulous women.

    • Ah, Summer. Bah, More Rain (July-August 2014)

      This has been the year of rain. I suppose that some would regard that as a good thing, but as a kid who likes to play outside and swim during the summer months, this endless rain is getting a little annoying.

      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.

      On the bright side, our garden is doing really well, although we have had to add new soil to avoid the plants being waterlogged. Another problem is the arrival of small armies of rodents that are relentlessly eating our vegetation. We’ve never had this problem before, but now, as soon as my dad plants new seedlings, the mice and rats eat them right down to the roots. It’s a contest and we are not winning. Fortunately, some of our plants were already big enough when the rodents attacked that they left them alone, and we’ve already eaten peppers, some tiny tomatoes and one (the only one that survived) snap pea.

      Summer is also my usual time for heading off to camp, and this summer was no exception. I think I’m getting too old for camp, but my mother insists that it gives me new experiences and lets me meet more new friends than staying home would. She’s right, of course, but what she doesn’t realize (and doesn’t really want to know) is that every year I go through the somewhat painful issue of answering everyone’s questions about my braces and my incredibly slow movements. There are always a few returning campers who know the story and usually try to help me dodge the really embarrassing questions and criticism of my lack of coordination.

      Being small is already an issue I have to deal with, but CMT just makes everything worse. I’m pretty accepting of what I can and can’t do, and when I’m home I feel safe and protected by my family and friends. At camp, I feel vulnerable because all the campers are “feeling their oats,” as my mother would say. That seems like a horsey analogy if you ask me, but they all seem to want to feel like they are the smartest and most athletic campers there. Picking on the weakest kid is the way some of them achieve their “power.” We do hear lectures from the camp counselors about being good examples of thoughtful and kind behavior, but the ones who need the lessons the most seem to be the ones who hear the least.

      I’m beginning to see my own analogy here. I’m like the newly planted pea plant and I’m attacked by the rats. Well, there’s a lesson to be learned. Shore up your defenses before the storm and you will be the snap pea that can withstand the rat attacks and make it through the summer.

    • Back to School (September-October 2014)

      Well, school is back in session and now I’m facing the problems of middle school. No one is picking on me. I have too many friends for that to happen. But, I’ve met the devil and he is “note-taking.” In elementary school, not much had to be written down quickly. Teachers handed out printed versions of almost everything you needed to study or it was in the text book. That’s not true in middle school.

      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.

      So, why is that so horrible? I am steadily losing my pinch and my hand control. I just can’t write with any speed and not even well enough for me to know what I’ve written, let alone anyone else. They let me use computers sometime, but I don’t type fast either. So, note-taking is almost impossible.

      I never wanted to have an aide. I always thought that would prove I really am handicapped. I imagined the aide would be some sweet white-haired older female, and everyone would laugh at me. After just one week of struggling and failing to keep up with class lectures, I decided I had to give in to my mother’s suggestion that we take on a school aide, supplied by our school district.

      Imagine my surprise and delight when I met HIM. Just the fact that I got a male aide was a huge help to my sagging ego and then, on top of that, he is very athletic and has been showing my classmates some of his karate moves.

      I know that not everyone who needs an aide is going to luck out and get one who fits his or her “wish list.” But, having someone around (not a parent) who can help with taking notes, carrying heavy books and keeping the hordes from trampling me is a true blessing.

      I guess what I’ve learned so far this year is that it’s not smart to ignore problems. They won’t go away: they need to be faced head-on and conquered. Not everything will work out the way we want, but sometimes it will. Before the aide, I wasn’t sleeping well. I wasn’t being my normal happy self and my friends were noticing (and not liking) the sad and grumpy turtle I’d become. Now, I feel as though a giant weight has been lifted from me. Having an aide doesn’t mean I’ve given in to my CMT; it’s been an improvement to my life.

    • Give Good Deeds a Try! (November-December 2014)

      Our English teacher is well known for her campaign to make us all more civilized. Recently, she decided to teach us the true meaning of altruism, or good deeds, and to then require us to put the principle in motion.

      Archy, CMTA Mascot
      Our mascot “Archy” writes about his
      experiences as a turtle with CMT.

      I understand the premise of this concept, but the problem for me was how exactly how to put it into practice. This is definitely the season of giving, but most of us give to a charity or cause that is somehow connected fairly directly to our own lives. For instance, my parents give to the CMTA and to the American Cancer Society because my Dad’s father died of pancreatic cancer and, of course, I have CMT.

      I wracked my brain to come up with some worthy deed that would allow me to remain anonymous because good deeds that are done without any praise or compliment coming back to the giver are the most completely unselfish.

      I decided that making a ramp for a deer in my class who was shot in the woods last fall would be a good deed because she can’t walk up the steps to her house anymore. It’s probably important to reveal that I’m not good at wood shop. That being said, I am good at talking people into doing things to help me. My shop teacher, Mr. Beaverton, said he would get a group together to get the job done. I got her family to go on a weekend trip to visit her grandparents by convincing her grandparents to help with the plan. I told you … I’m good at talking people into things.

      On the scheduled weekend, we were blessed with pleasant weather, and my shop teacher assembled a crew of good workers. My job was to take tools to people and to get snacks and drinks for everyone. In just two days, we had a very nice-looking ramp assembled and installed. We disappeared without any evidence of our having been there other than the new ramp.

      The family was very surprised and did their best to find out who had done the work, but no one said a word. I discovered that the philosophers are right: Good deeds are they key to a worthwhile life. Not being publicly thanked, but knowing how much the ramp means to that family has made me feel incredibly good.