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What I Learned Touring the U.K. With Charcot-Marie-Tooth Disease

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I have Charcot-Marie-Tooth disease and recently visited the U.K. Was I concerned about touring the United Kingdom by myself with my 13-year-old? Absolutely! I was nervous that I could not keep with the tour group. I was terrified I would fall and get hurt. I was worried I would not be able to do so much of the tour. Thankfully I was wrong on all accounts. We had the best experience! We could not have asked for a better tour guide and driver. Our sweet driver went above and beyond to make things easier. He made sure I could easily get on and off the coach bus, always offering his hand and always parking near the lifts on the ferries. It was those little things that helped make the trip so enjoyable.

I decided on a coach tour of the U.K. so I could rest after each stop and tour. I knew that with  Charcot-Marie-Tooth, I would need that time to recharge and rest. Yes, I did fall asleep as soon as the coach started after each stop. I also chose a tour so I would not have to worry about getting from point A to point B or driving anywhere after walking around a town or attraction. I wanted this trip to be perfect and memorable for my son. I think it was! By doing the tour, we were able to enjoy the sights and he did not have to worry about mom not being able to keep up.

While touring the United Kingdom, I learned about more than just the amazing history of the area. We learned a lot about the history of each country we visited and their traditions. But I also learned so many valuable things about myself and how I view my CMT. I learned that for the most part, people are willing to help and not judge you for your disability. I had my cane with me and I used it the entire trip, and no one judged me or made me feel uncomfortable about it. Everyone on the tour was so accommodating and willing to offer a hand on the steps or cobblestone paths. This was something I was not used to, people willing to help and just being kind. It was not always easy to accept the help, but I did because I knew it was being offered with no malice or judgment. I knew in order to go up or down the steep winding stairs in the castle, I would need the help. And honestly, I wanted to see the rooftop gardens. I wanted to see it all, and I did!

I learned it is OK to ask for assistance, and more importantly to accept it. I learned there is no harm in letting people know I need assistance. It actually made things easier and put my mind at ease. When we were walking up to the Edinburgh Castle, our guide was walking so fast and it was very crowded. I was scared I would lose the group, and started to panic. One of the women in the group came over. She told me to sit down and she would speak to the guide. I realized at that point, I needed the help. She talked to him and I was able to take a car the rest of way to the castle. I did get to see the Crown Jewels, after all and I did not lose the group!

I knew then if there was something I could not do, someone would watch my son and help me. That was incredibly reassuring. I also learned that letting people know is not the end of the world; it actually can be a relief. I am usually very reserved about telling people, but I was actually surprisingly OK with telling people. That is a huge step for me. I was also completely OK with using my cane and not thinking twice about reactions from others. I was surprised at how easy it was and how comfortable I felt about it.

I realized that people may see the CMT, but it is not all they see. They may have noticed the cane but that did not stop them from getting to know me. It may have been the first thing they saw; it is a purple cane; but they also saw the person using it. They reached out to me as a person and get to know me for me, not as someone with a disability. That was a new idea for me. I am also tentative about using the cane because I do not want to be judged. This time, I knew if I wanted to be able to do the tour I would need to use the cane. I was not even embarrassed the one time when I fell because no one made an issue out of it; they just made sure I was OK and helped me up. That was also something new for me, not feeling ashamed because I lost my balance.

These were all big steps for me. It is not easy living with a progressive disorder that most people have never heard of. It is not easy to feel inadequate or like you can not do something you really want to do. I learned that accepting help is not a sign of weakness and it is OK to ask for it, too. I learned that people will offer a hand because they are considerate, not because they feel bad for you. I learned that I can travel and it is OK to rest when your body needs it. I am grateful that we did a coach tour and got to rest and recharge after each stop. That was exactly what I needed to make this trip memorable for my son. I learned that people are not as judgmental as I may think they are. I learned that kindness really does matter. I learned that if I am not using my disability as an excuse, others won’t see it that way either.

This trip taught me some valuable lessons about my feelings towards CMT and about others. It taught me that people can be more understanding than I often give them credit for. I learned that I can travel and do things, as long as I plan to have time to rest and recharge. I was able to do this trip and not suffer in pain from the walking, which means I can and will do more traveling. I enjoyed the coach tour very much and met some wonderful people. I am grateful that I was able to experience this with my son and be there to see the wonder in his eyes at every stop. I know we will have more adventures together.

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Thinkstock photo by Hey Engel.

Originally published: August 22, 2017
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