Hi Oli, thanks for joining me today! I wish we could meet in a real coffee shop to chat, but our virtual coffee shop will have to do for now because you live a long way away from me, can you tell us a little bit about yourself? Where do you live?
Hello Lenka ! I wish we could do this interview face to face, but don't worry someday we'll meet each other !
I'm Olivia, 29 and I live in Paris (France). I graduated in 2004, received a Bachelor Degree in Economics and Company Management, and now I work as a digital marketing specialist for an international company. I love blogging, going to the movies, collecting Pullips (Japanese dolls), surfing the Internet, shopping, watching dvds (movies, lots of TV shows), listening to good music, reading, attending concerts of singers / bands I love, and travelling. I'm very curious and open-minded, and traveling is definitely a part of me. I love discovering new things, new cultures and meeting new people. I've been to UK, Switzerland, Italy, Spain, Portugal, Russia, Netherlands, Denmark, Sweden, Germany, Czech Republic, Turkey, the United States, South Korea... Actually, I especially love the US. Most of the people are friendly and helpful, and they seem much more open-minded about disabilities.
When did you find out about CMT? How were you diagnosed? Do you know what Type you have? I have CMT 1A.
I was diagnosed with Charcot-Marie-Tooth when I was two years old (but I don't remember what type I have). I got it from my dad. As I was diagnosed when I was only a baby (I heard it's quite rare with CMT), I got used to living with this condition quite early.
The first symptoms started to show when I was a baby, and ever since then, I have loss of muscle tissue in the feet, legs, and also in the arms and hands. It’s like if I were in the advanced stages of disease, except that since my birth, the disease has never evolved. I have already gone through 15 surgeries (surgeons tried many things, but only 7 surgeries really worked) and I have been doing physical therapy for over 20 years. Because of the muscle atrophy, I now have a kyphosis, a double scoliosis, and a serious dysplasia of the left shoulder. I also suffer from chronic pains (notably neurological pains in my left wrist). The other weird thing is this disease is supposed to be symmetrical, but the left part of my body (arm, hand, leg and foot) is more affected and painful than the right part. Doctors don’t know how to explain it. I still have the ability to walk, but I get tired quite fast, so I use a wheelchair to get around outside of my home. When I do walk, my balance is very bad, so the way I walk is very strange. People stare a lot.
Many of your symptoms are similar to mine! Though I was affected since birth (late milestones), I wasn't diagnosed until I was thirteen. I am also more affected on my left side. I have an S curve in my spine from scoliosis. There are so many things that doctors are still discovering! I am so sorry to hear about your pain. How was growing up for you emotionally, when the physical side was so challenging?
Emotionally... I had some rough times, especially when I was a kid. I spent lots of summers (and several birthdays) in hospital with my foot (and sometimes my 2 feet and at the same time) in a cast. I had almost all my surgeries during summer to not miss class. And when you're a kid and you're different, you don't fit in. Some of my classmates used to have fun of me and bully me in junior high school. Fortunately, high school doesn't last forever.
We met through social sites like Twitter and Instagram. What are your favorite online places? What does an online community mean to you?
Social sites are very convenient to feel closer to people we love. I love all the social networks, especially Facebook, Twitter & Instagram. They help keep in touch with my friends (especially the ones who live far away)... But a couple of years ago, these social networks helped me find other people (like you) who suffer from CMT and live all over the world. Too few people know what CMT is. And in France, I never met someone else who was walking like me. Then all of the sudden, thanks to internet and the social networks, I found many people suffering from CMT who were sharing their feelings, and it feels good to know that some other people can really understand what I'm feeling, because they go through the same things/challenges as me. This online community is a great support !
You have many adventures! How do you plan for travel or concerts?
My secret is being well surrounded. I'm a people person, and I love to hang out with my friends. Most of them know me well, and they know what I can do physically. So it's easy to plan a concert or a trip with my family/my best friends. But we often meet some difficulties to visit a city/a place. For example, last year, one of my best friend and I decided to go to Prague for a couple of days. We knew (before booking this trip) that this city was not wheelchair accessible, but we adapted. We made many efforts to visit this beautiful city, we were a bit tired, but we did it ! And we enjoyed it !
You probably didn't see this lion in Prague, but he is a great travel photo! I want to go to Prague again! I went over ten years ago now. When are home, what is your biggest challenge?
I think that when you live with a disability, you have to face big challenges every day. Studying in a normal high school (then University) and finding a job (that fits my professional skills and for which my disability is not an issue) were very challenging. In 2005, I decided to go to a language school in New York City to improve my English. I lived in Manhattan for almost a year. My parents came with me only for a couple of days to help me move in, but then I lived over there on my own. It was the very first time I lived alone. And I was so far away from my family and friends. It was my biggest challenge, but I definitely had a blast ! I love NYC so much, it’s a gorgeous city ! I like the atmosphere, and I love the New-Yorker. And New York is very wheelchair accessible. I really have wonderful memories of NYC, and thanks to my school I have made a lot of friends from all over the world and we're still in touch. I also had the opportunity to visit few other cities, like Washington DC, Boston, Miami, San Francisco, LA & Las Vegas (and some national parks on the west coast).
And about my current biggest challenge... I dream of going back to the United States to live and work over there.
What are your inspirations? What helps through the rough days?
I’m surrounded by wonderful people, like my parents who have always fought to give me a normal (as normal it can be of course) life, and my many supportive friends, and it really helps morally, and when you feel happy, it helps feel better physically (to try to stop the progression of the disease). Besides, I have a strong personality and it’s really helpful.
CMT sucks and some days are really rough (emotionally and/or physically), but I feel like it could be the opportunity to make a difference, by helping spread CMT awareness.
As you know, September is CMT awareness month. Do you plan some actions to help spread CMT awareness ?
CMT awareness is deeply important. Talking about the biggest disease that no one's ever heard of will hopefully increase donations, which will fund research to help find a cure. Also, we need to educate people about CMT to make them understand what this disease is concretely, and how people who live with CMT feel everyday. Sometimes it can be difficult when you feel that people don't understand you. Because obviously, even if I have a strong character and I'm highly motivated, there are many things I cannot do physically because of my CMT. It can be very frustrating. Sometimes people don't really understand how I feel about that. How could they if they don't know what CMT is?
This month and beyond, I'm trying to make a difference, even if it's only a small one. I'm trying to raise CMT awareness and to get people more open-minded about it. I wrote an article about CMT on my blog (URL :http://lepetitmondedeolidolly.
Do you have any tricks that make life easier? We can all use a few tricks!
Thinking about something I've been waiting for helps a lot (like my next trip, or anything else I've planned to do). Keep smiling and being positive ! Enjoy life with people you love.
To people what are affected by CMT : CMT is often called the biggest disease that no one's ever heard because people hide. But having CMT is not a shame. And you're not alone... Come out and feel free to share your story and your feelings with us. And be aware that CMT does't define us, so enjoy life !
To the other people : Thanks a lot for reading me ! You already can help spread CMT awareness by sharing this article on the social networks. And feel free to share us any comment / idea to help. And if you want to do more... click here (URL : http://help4cmt.com/). Thanks a lot for your support ! PS from Lenka- you can also go to the CMTA page or the CMTA Awareness Month page for CMT information.
And most of all, thank you Lenka for giving me this opportunity to express myself !
Of course! I am delighted that we got to chat! I look forward to the day when we can swap stories in person. Enjoy life and stay well :)
Thank you, thank you, thank you!
PS: If you have CMT stories about yourself or someone you love, I am happy to interview you. Leave a comment here and I will be in touch. We will change the world, one story at a time :)