Jill Price

@jill-price-1 | contributor
I have Charcot Marie Tooth and am finding my way in the world of single parenting with a disability.
Jill Price

Why I Have a Love/Hate Relationship With My Mobility Devices

“Ooh! Your cane is so pretty and shiny!”  How I wish I could see the beauty in the golden cane I have been using. I wish I could see how the sunlight shines off of it. Instead, I see a plain old boring cane that someone older than me should be using. I have Charcot Marie Tooth 1A, wear ankle foot orthosis, and now use a cane. The cane use started when I transitioned to new hinges braces and was tripping more than I care to admit.  My knees had cuts and bruises on them, so I had to do something. I knew I could not keep hurting my knees that way.  That is when I decided to talk to my orthotist. Together we decided to keep trying and working with hinged braces and I should use my cane more.  I was already using it for walking long distances and/or on uneven terrain.  Yet, the idea of using it more was a bit… well, unsettling. I can not fully explain why using my cane more was unsettling.  It helps with balance and provides support while walking, so logically it is a good idea. Getting my emotions on board with logic took a bit of convincing.  I started to use the cane more and I tripped less, coincidence? Maybe using the cane was not the worst idea. Maybe I was worried about what others would think. Maybe they think I am too young or that I really do not need it. To be honest, no one says anything to me about the cane. They may ask why I wear AFOs but nothing negative is usually said about either. Now that I am getting comfortable using my cane, I am starting to use a mobility scooter when I know there is a lot of walking.  This is much harder for me to accept and use. Part of me hates that my condition is causing me to need to use mobility devices. I know it makes doing things easier, but won’t everyone look at me and stare?  Well, not really. I found that when I use the scooter, no one really says anything or even pays attention to the fact that I am using it.  Hmm… maybe it is just me.  Perhaps I need to get out of my head and just do what is best for me. I know that the cane and scooter help me. They make it easier to do the things I enjoy. The mobility aids prevent me from falling and becoming exhausted.  So, why do I have such a hard time accepting that I need them and they make life easier? I am always wondering what strangers may think of me.  I know that most of the time they are not thinking, “Look at that lady on the scooter, I wonder what is wrong with her?”  I realize it is just me thinking that way. I do not think that when I see someone using a mobility device.  Why do I worry about what others think? The other day, I went to the grocery store and used their scooter.  It was so much easier to do the shopping and keep up with my teenager.  I remember thinking, “why haven’t I done this before?”  I had no real clear answer other than that I am worried about what others will say. Yes, I realize that is not a good reason and I need to just do it. I know the benefits of using these aids. I need to now get past my own insecurities and just do it.  That is the tough part for me. It is definitely a work in progress. I need to love the devices for how they help me get out and live without hating that I need them.

Jill Price

Getting AFOs With Charcot-Marie-Tooth Disease

Today I took a huge step in my journey with Charcot-Marie-Tooth disease. I finally agreed to get fitted for AFOs. I am not really sure how I feel about this new development. I know the benefits of the AFOs and I know they will help, but I still am not 100 percent sold on the idea of wearing them. It sounds vain, but what will others think if they see me with leg braces? I know what they think should not matter, and what they say should not impact my choices, but some level it does. I know it should not impact my decisions, but it does. I saw my neurologist in October and finally agreed it may be time to think about looking into AFOs. This was not the first time he brought up the need for AFOs. It was the first time I did not respond with “but I am not old enough.” In my mind, I know it has nothing with age and everything to do with the progression of my disease. The doctor was understanding, and suggested I just go talk to an orthotist to see what is out there. I finally agreed, because keeping my balance while walking is getting tougher and it is getting harder to keep my ankles from rolling.  My doctor suggested that AFOs may actually make walking less difficult and not as tiring. I figured it was worth looking into, as much as I have anxiety about the whole idea. So I took the prescription with me when I left the office. This was a big step for me, in many ways. Now I had this prescription in my hand and I had to decide what to do with it. Do I just take it home and let it be? Do I look into clinics that make AFOs? I decided to look into what my insurance would cover and what the cost may be. I knew if it was too much, that was my out. But my insurance covers them 100 percent, so that excuse was out. Now what to do? I looked online for places near me; maybe there would not be a clinic near me. Nope, that excuse was out; there are about 10 clinics nearby. I was quickly running out of excuses as to why I could not look at getting AFOs. I guess I needed to choose a clinic and make an appointment. That was not so hard… OK, it was really tough for me to get the courage to call and make that appointment. Now I had an appointment at the Hanger Clinic near me. I chose them because my dad uses them and I had no reason not to. I was nervous and unsure of what to expect at the clinic. I knew I did not want clunky, plastic looking braces. I was not going to be talked into something I did not want. Some people gave me some advice on what type of questions to ask and what to look for.  Armed with questions and my trusty notebook to take notes if needed, I headed to my appointment.  To say I was anxious and really uncertain would be an understatement. My anxiety was instantly put at ease; the staff was helpful and kind. The orthotist was really nice and helped to ease my mind. He asked basic questions and watched me walk. He then began to use medical terms I did not understand. When I asked what he meant, he explained without any hesitation. That made me feel more comfortable. He talked about what he thought would work for my needs. I told him if they are they big plastic bulky braces, I was out. That was not going to happen, no way. I was not going to do that. He smiled, and told me there were many other choices. He also said he tends to use carbon fiber more than plastic. I agreed to look at the different models. I even tried on a pair to see how I felt with AFOs. It felt weird to walk with them on, and they were kind of heavy, well heavier than just a shoe. I could tell I was walking a little better, but was still not convinced. I did not like how bulky the front piece that goes over the shin was. I do not want something that bulky and big on my leg. I have to be comfortable with this whole thing, right? After talking and looking at few other samples, we decided a custom made AFO would probably be the way to go.  He casted my feet and was able to get both ankles pretty straight. He is confident he can do the same with the AFOs. He may want to add an ankle stabilizer, but we’ll see what is needed when the AFOs come in. I did make sure the front piece was not too big and the whole thing was not too bulky. I resigned myself to allowing him to make the AFOs. Of course I had to ask, “What happens if I hate them?”  He smiled again and said, “I will do what I can so you do not hate them.” Now I wait four weeks for them to come in. I have four weeks to figure out how to deal with the whole idea of wearing AFOs. The next step is to come to terms with those voices in my head saying “what will others think?” “How will you get shoes?” “What will it look like with shorts or skirts?” Then there are the other voices saying, “if they have an issue, then they are not true friends.” “If it helps, then just do it.” “I do not need to wear them all the time, even the orthotist said so.” Maybe in a few weeks, I can come to terms with all those little voices in my head. I think the biggest issue for me is how to handle the looks, the stares from others. I am learning not to care, but at times I still do. I know AFOs will probably be a good thing. I just need to deal with the anxiety and vanity issues they bring up. We want to hear your story. Become a Mighty contributor here . Getty image by Teerhawat Wenyerat.

Jill Price

Getting AFOs With Charcot-Marie-Tooth Disease

Today I took a huge step in my journey with Charcot-Marie-Tooth disease. I finally agreed to get fitted for AFOs. I am not really sure how I feel about this new development. I know the benefits of the AFOs and I know they will help, but I still am not 100 percent sold on the idea of wearing them. It sounds vain, but what will others think if they see me with leg braces? I know what they think should not matter, and what they say should not impact my choices, but some level it does. I know it should not impact my decisions, but it does. I saw my neurologist in October and finally agreed it may be time to think about looking into AFOs. This was not the first time he brought up the need for AFOs. It was the first time I did not respond with “but I am not old enough.” In my mind, I know it has nothing with age and everything to do with the progression of my disease. The doctor was understanding, and suggested I just go talk to an orthotist to see what is out there. I finally agreed, because keeping my balance while walking is getting tougher and it is getting harder to keep my ankles from rolling.  My doctor suggested that AFOs may actually make walking less difficult and not as tiring. I figured it was worth looking into, as much as I have anxiety about the whole idea. So I took the prescription with me when I left the office. This was a big step for me, in many ways. Now I had this prescription in my hand and I had to decide what to do with it. Do I just take it home and let it be? Do I look into clinics that make AFOs? I decided to look into what my insurance would cover and what the cost may be. I knew if it was too much, that was my out. But my insurance covers them 100 percent, so that excuse was out. Now what to do? I looked online for places near me; maybe there would not be a clinic near me. Nope, that excuse was out; there are about 10 clinics nearby. I was quickly running out of excuses as to why I could not look at getting AFOs. I guess I needed to choose a clinic and make an appointment. That was not so hard… OK, it was really tough for me to get the courage to call and make that appointment. Now I had an appointment at the Hanger Clinic near me. I chose them because my dad uses them and I had no reason not to. I was nervous and unsure of what to expect at the clinic. I knew I did not want clunky, plastic looking braces. I was not going to be talked into something I did not want. Some people gave me some advice on what type of questions to ask and what to look for.  Armed with questions and my trusty notebook to take notes if needed, I headed to my appointment.  To say I was anxious and really uncertain would be an understatement. My anxiety was instantly put at ease; the staff was helpful and kind. The orthotist was really nice and helped to ease my mind. He asked basic questions and watched me walk. He then began to use medical terms I did not understand. When I asked what he meant, he explained without any hesitation. That made me feel more comfortable. He talked about what he thought would work for my needs. I told him if they are they big plastic bulky braces, I was out. That was not going to happen, no way. I was not going to do that. He smiled, and told me there were many other choices. He also said he tends to use carbon fiber more than plastic. I agreed to look at the different models. I even tried on a pair to see how I felt with AFOs. It felt weird to walk with them on, and they were kind of heavy, well heavier than just a shoe. I could tell I was walking a little better, but was still not convinced. I did not like how bulky the front piece that goes over the shin was. I do not want something that bulky and big on my leg. I have to be comfortable with this whole thing, right? After talking and looking at few other samples, we decided a custom made AFO would probably be the way to go.  He casted my feet and was able to get both ankles pretty straight. He is confident he can do the same with the AFOs. He may want to add an ankle stabilizer, but we’ll see what is needed when the AFOs come in. I did make sure the front piece was not too big and the whole thing was not too bulky. I resigned myself to allowing him to make the AFOs. Of course I had to ask, “What happens if I hate them?”  He smiled again and said, “I will do what I can so you do not hate them.” Now I wait four weeks for them to come in. I have four weeks to figure out how to deal with the whole idea of wearing AFOs. The next step is to come to terms with those voices in my head saying “what will others think?” “How will you get shoes?” “What will it look like with shorts or skirts?” Then there are the other voices saying, “if they have an issue, then they are not true friends.” “If it helps, then just do it.” “I do not need to wear them all the time, even the orthotist said so.” Maybe in a few weeks, I can come to terms with all those little voices in my head. I think the biggest issue for me is how to handle the looks, the stares from others. I am learning not to care, but at times I still do. I know AFOs will probably be a good thing. I just need to deal with the anxiety and vanity issues they bring up. We want to hear your story. Become a Mighty contributor here . Getty image by Teerhawat Wenyerat.

Jill Price

Getting AFOs With Charcot-Marie-Tooth Disease

Today I took a huge step in my journey with Charcot-Marie-Tooth disease. I finally agreed to get fitted for AFOs. I am not really sure how I feel about this new development. I know the benefits of the AFOs and I know they will help, but I still am not 100 percent sold on the idea of wearing them. It sounds vain, but what will others think if they see me with leg braces? I know what they think should not matter, and what they say should not impact my choices, but some level it does. I know it should not impact my decisions, but it does. I saw my neurologist in October and finally agreed it may be time to think about looking into AFOs. This was not the first time he brought up the need for AFOs. It was the first time I did not respond with “but I am not old enough.” In my mind, I know it has nothing with age and everything to do with the progression of my disease. The doctor was understanding, and suggested I just go talk to an orthotist to see what is out there. I finally agreed, because keeping my balance while walking is getting tougher and it is getting harder to keep my ankles from rolling.  My doctor suggested that AFOs may actually make walking less difficult and not as tiring. I figured it was worth looking into, as much as I have anxiety about the whole idea. So I took the prescription with me when I left the office. This was a big step for me, in many ways. Now I had this prescription in my hand and I had to decide what to do with it. Do I just take it home and let it be? Do I look into clinics that make AFOs? I decided to look into what my insurance would cover and what the cost may be. I knew if it was too much, that was my out. But my insurance covers them 100 percent, so that excuse was out. Now what to do? I looked online for places near me; maybe there would not be a clinic near me. Nope, that excuse was out; there are about 10 clinics nearby. I was quickly running out of excuses as to why I could not look at getting AFOs. I guess I needed to choose a clinic and make an appointment. That was not so hard… OK, it was really tough for me to get the courage to call and make that appointment. Now I had an appointment at the Hanger Clinic near me. I chose them because my dad uses them and I had no reason not to. I was nervous and unsure of what to expect at the clinic. I knew I did not want clunky, plastic looking braces. I was not going to be talked into something I did not want. Some people gave me some advice on what type of questions to ask and what to look for.  Armed with questions and my trusty notebook to take notes if needed, I headed to my appointment.  To say I was anxious and really uncertain would be an understatement. My anxiety was instantly put at ease; the staff was helpful and kind. The orthotist was really nice and helped to ease my mind. He asked basic questions and watched me walk. He then began to use medical terms I did not understand. When I asked what he meant, he explained without any hesitation. That made me feel more comfortable. He talked about what he thought would work for my needs. I told him if they are they big plastic bulky braces, I was out. That was not going to happen, no way. I was not going to do that. He smiled, and told me there were many other choices. He also said he tends to use carbon fiber more than plastic. I agreed to look at the different models. I even tried on a pair to see how I felt with AFOs. It felt weird to walk with them on, and they were kind of heavy, well heavier than just a shoe. I could tell I was walking a little better, but was still not convinced. I did not like how bulky the front piece that goes over the shin was. I do not want something that bulky and big on my leg. I have to be comfortable with this whole thing, right? After talking and looking at few other samples, we decided a custom made AFO would probably be the way to go.  He casted my feet and was able to get both ankles pretty straight. He is confident he can do the same with the AFOs. He may want to add an ankle stabilizer, but we’ll see what is needed when the AFOs come in. I did make sure the front piece was not too big and the whole thing was not too bulky. I resigned myself to allowing him to make the AFOs. Of course I had to ask, “What happens if I hate them?”  He smiled again and said, “I will do what I can so you do not hate them.” Now I wait four weeks for them to come in. I have four weeks to figure out how to deal with the whole idea of wearing AFOs. The next step is to come to terms with those voices in my head saying “what will others think?” “How will you get shoes?” “What will it look like with shorts or skirts?” Then there are the other voices saying, “if they have an issue, then they are not true friends.” “If it helps, then just do it.” “I do not need to wear them all the time, even the orthotist said so.” Maybe in a few weeks, I can come to terms with all those little voices in my head. I think the biggest issue for me is how to handle the looks, the stares from others. I am learning not to care, but at times I still do. I know AFOs will probably be a good thing. I just need to deal with the anxiety and vanity issues they bring up. We want to hear your story. Become a Mighty contributor here . Getty image by Teerhawat Wenyerat.

Jill Price

Getting AFOs With Charcot-Marie-Tooth Disease

Today I took a huge step in my journey with Charcot-Marie-Tooth disease. I finally agreed to get fitted for AFOs. I am not really sure how I feel about this new development. I know the benefits of the AFOs and I know they will help, but I still am not 100 percent sold on the idea of wearing them. It sounds vain, but what will others think if they see me with leg braces? I know what they think should not matter, and what they say should not impact my choices, but some level it does. I know it should not impact my decisions, but it does. I saw my neurologist in October and finally agreed it may be time to think about looking into AFOs. This was not the first time he brought up the need for AFOs. It was the first time I did not respond with “but I am not old enough.” In my mind, I know it has nothing with age and everything to do with the progression of my disease. The doctor was understanding, and suggested I just go talk to an orthotist to see what is out there. I finally agreed, because keeping my balance while walking is getting tougher and it is getting harder to keep my ankles from rolling.  My doctor suggested that AFOs may actually make walking less difficult and not as tiring. I figured it was worth looking into, as much as I have anxiety about the whole idea. So I took the prescription with me when I left the office. This was a big step for me, in many ways. Now I had this prescription in my hand and I had to decide what to do with it. Do I just take it home and let it be? Do I look into clinics that make AFOs? I decided to look into what my insurance would cover and what the cost may be. I knew if it was too much, that was my out. But my insurance covers them 100 percent, so that excuse was out. Now what to do? I looked online for places near me; maybe there would not be a clinic near me. Nope, that excuse was out; there are about 10 clinics nearby. I was quickly running out of excuses as to why I could not look at getting AFOs. I guess I needed to choose a clinic and make an appointment. That was not so hard… OK, it was really tough for me to get the courage to call and make that appointment. Now I had an appointment at the Hanger Clinic near me. I chose them because my dad uses them and I had no reason not to. I was nervous and unsure of what to expect at the clinic. I knew I did not want clunky, plastic looking braces. I was not going to be talked into something I did not want. Some people gave me some advice on what type of questions to ask and what to look for.  Armed with questions and my trusty notebook to take notes if needed, I headed to my appointment.  To say I was anxious and really uncertain would be an understatement. My anxiety was instantly put at ease; the staff was helpful and kind. The orthotist was really nice and helped to ease my mind. He asked basic questions and watched me walk. He then began to use medical terms I did not understand. When I asked what he meant, he explained without any hesitation. That made me feel more comfortable. He talked about what he thought would work for my needs. I told him if they are they big plastic bulky braces, I was out. That was not going to happen, no way. I was not going to do that. He smiled, and told me there were many other choices. He also said he tends to use carbon fiber more than plastic. I agreed to look at the different models. I even tried on a pair to see how I felt with AFOs. It felt weird to walk with them on, and they were kind of heavy, well heavier than just a shoe. I could tell I was walking a little better, but was still not convinced. I did not like how bulky the front piece that goes over the shin was. I do not want something that bulky and big on my leg. I have to be comfortable with this whole thing, right? After talking and looking at few other samples, we decided a custom made AFO would probably be the way to go.  He casted my feet and was able to get both ankles pretty straight. He is confident he can do the same with the AFOs. He may want to add an ankle stabilizer, but we’ll see what is needed when the AFOs come in. I did make sure the front piece was not too big and the whole thing was not too bulky. I resigned myself to allowing him to make the AFOs. Of course I had to ask, “What happens if I hate them?”  He smiled again and said, “I will do what I can so you do not hate them.” Now I wait four weeks for them to come in. I have four weeks to figure out how to deal with the whole idea of wearing AFOs. The next step is to come to terms with those voices in my head saying “what will others think?” “How will you get shoes?” “What will it look like with shorts or skirts?” Then there are the other voices saying, “if they have an issue, then they are not true friends.” “If it helps, then just do it.” “I do not need to wear them all the time, even the orthotist said so.” Maybe in a few weeks, I can come to terms with all those little voices in my head. I think the biggest issue for me is how to handle the looks, the stares from others. I am learning not to care, but at times I still do. I know AFOs will probably be a good thing. I just need to deal with the anxiety and vanity issues they bring up. We want to hear your story. Become a Mighty contributor here . Getty image by Teerhawat Wenyerat.

Jill Price

Touring the U.K. With Charcot-Marie-Tooth Disease

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. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Hey Engel.

Jill Price

Charcot-Marie-Tooth Disease: What Many People Don't Know

Do I want to go hiking with you? Yes, but the bigger question is, can I do it? That is always the question I have to ask, as well as: will it be steep? Is it narrow? Is it rocky? You see, these things scare me and make it even more difficult for me to attempt to hike. I truly want to, but I probably cannot go with you. I know, looking at me you may not even realize I have a disability. Then I get up and walk. That is when you see the awkward unbalanced gait, slight limp and drop foot. You may even want to ask, but you don’t. You may feel sorry for me; please don’t. You may want to help; I am getting better at accepting that. You may wonder what happened to cause me to have such a funny gait. Nothing happened; I was born this way. Growing up with Charcot Marie Tooth disease (CMT), my parents never let it hold us back. My brother and sister played in Little League and my sister and I were in dance until we each had back surgery. In 1986, I had scoliosis surgery. I have a stainless steel rod from the base of my neck to the base of my spine. Yes, it is connected with a nut and bolt mechanism. No, it does not hurt. I can not really bend from the waist or arch my back. I do not really miss doing that, though. There are certain things that are more difficult, but my parents taught us to do the best we can and that it does not matter if we are disabled. Thankfully, I have friends who understand my limitations due to CMT and back issues. They know it’s not that I do not want to go to the ball game, it is just the thought of those steep scary steps. They understand that I need to use my cane when walking great distances and/or on uneven surfaces. They understand that I can not lift or move that heavy box. What they don’t understand is how it makes me feel. They do not know because I do not tell them. I do not tell them it makes me feel helpless when I cannot walk up the steep staircase without assistance, or get into the pool with no railing or hand to hold. They do not know how jealous I am that they can just jog up or down a flight of stairs without a railing while I am standing there trying to figure out how to navigate those steps. They don’t know it saddens me that I cannot run and play with my son. (He understands, but it still makes me sad.) I am jealous that my friends can go into a store and just buy a pair or two of shoes. I cannot even think about doing that. Instead I need to go to a special store and try on endless pairs of shoes. If I am lucky, I find a pair that is sort of comfortable and maybe under $150. I am jealous of people who can wear cute shoes and flip flops — silly, I know, but it bothers me. I cannot even really wear sandals anymore and that makes me sad; I love sandals in summer. I am coming to terms with comfort and support over fashion. It is not easy, but I am working on it. If I am being honest, I hate my feet, curled toes, high arch and bum ankle. My feet are icky — thanks CMT! Yes, I love your cute pedicure but it makes me mad that I cannot really get one or show it off. You see, I am embarrassed about my feet and am not comfortable showing them to others. I know my friends won’t care, but I do. My friends may not know how much CMT impacts my life because I do not think they need to know. They are supportive and helpful and know when I cannot do something, I truly cannot. You see, I do not use my disability as excuse. I never say I cannot do that because I am disabled. Instead, I do it to the best of my ability. I do it with limitations. So instead of taking the 3 mile hiking path, I opt for the 1 mile path. Instead of going nonstop all day, I build in breaks and rest time I know I will need. If I am doing something more tiring on Saturday, then Sunday is a rest day. I have learned I need that rest time to recover and heal my body. I am learning to listen to my body — not always the easiest thing to do. So, when you ask if I want to go somewhere and I hesitate, please know it is not that I do not want to go. It is just that I need to weigh the pros and cons of the suggested activity. I do not want to hold you up or slow you down. I know in my heart that my friends probably won’t mind, but convincing my brain of that is not always easy. I ask for your understanding and support as I navigate the progression of CMT. I ask for your patience as I navigate the unknown aspects of this disorder. Most of all, I hope you know how much I treasure your love and support. We want to hear your story. Become a Mighty contributor here . Thinkstock image by Mike Watson.

Jill Price

Deciding When to Tell People About My Charcot-Marie-Tooth Disease

To tell or not to tell people about my disability — that is always the question. When I first meet someone, how do I know how they will react to it? How can I be sure they will not laugh or turn away? It is not easy to tell people you just met why you walk “funny.” When I do tell them I have a neuromuscular disorder, they often ask the name. So, I tell them I have Charcot-Marie-Tooth disease. The next question is inevitably “Shark what?” Or “are your teeth affected?” It has nothing to do with sharks or my teeth, but I can see why they ask. It is a pretty strange name for a disease. People often ask “Is it curable?” No, not at this time. Then they want to know if I’ll “get better.” Not unless they can find a way to stop or slow the progress. Then of course, there are the questions about how it impacts my life. That is the one I do not really like to answer. CMT has a huge impact on my life. It affects how I function in everyday life. Is it the worst thing? No, but it does make things more difficult. It affects my ability to walk far or on uneven surfaces. Since I have no position sense in my toes, unless I am looking I cannot tell that if the ground goes up or down. Therefore, I can trip on “thin air” — yes, it is a talent of mine. CMT makes standing for long periods difficult and it’s hard to balance while standing, which can be an issue anywhere one needs to wait or stand for a while. Amusement parks are tough; it is hard to do all the walking and waiting in line. I have started using a cane more and more, which of course leads to more questions. I am learning to accept the fact that I need it for safety and should not care what others think. CMT also impacts my ability to walk up and down steps. Oh, how I dislike steps; falling up steps is always fun. It is always interesting to try to explain that one to people. I cannot carry anything heavy up or down steps. And forget about even using the steps if there is no railing or wall to hold onto. I have to find another way to get where I need to go. I am never sure how much to tell people or what to say when they ask questions. I never know what to put on my profile on a dating site. How much do I say? If I say nothing and then meet the person, they see my funny walk and are often put off. If I do say anything, they usually are no longer interested. I guess it is better to know right away if they are OK with the idea that I may use a cane at times, and scaling a mountain is probably not going to happen. It is hard to be a single mom with a disability. It is hard enough to meet people; then add in a disability and it’s even harder. I wish I knew why some people are so afraid, unsure or just do not want to take the chance. I have found that people are either interested in knowing more about it or want nothing to do with it. I am very careful about what I say and how much I say. I tend to just keep it to the basics when someone does ask, because I am afraid of what they will do. I often wonder if I should have told them about it, especially if they show pity. I do not want pity, just understanding and acceptance. To tell or not to tell may always be an issue for me. Perhaps I need to be brave enough and strong enough to take whatever reaction they give me. Yeah, easier said than done, I know. I guess I need to work on not letting their behavior bother me, and just move on. We want to hear your story. Become a Mighty contributor here . Thinkstock image by S Digital.