"I Am. . .So Much More Than You See!"

This week my parents and I will travel to Alexandria,Virginia to attend the annual United Mitochondrial Disease Foundation Symposium.  I have dealt with Mitochondrial Disease my entire life and I am so excited to meet people who also have this disorder. While I know that most of us will have very different symptoms, I believe that we will feel a connection that is very unique. Mitochondria are the power houses of the cells. When the mitochondria do not work properly, it can affect various parts of the body including the brain, heart, liver and muscles. Personally, my neurologic system is affected and as a result I have difficulty with my gait, balance, vision and speech. Interestingly, my doctor told me that there are only a few people in the world that have my specific type of Mitochondrial Disease. I believe that we always feel a strong connection to those we have things in common with. Although I have not met many people in my life who have Mitochondrial Disease, when...

Imagine trying to get into a restaurant with a walker in one hand, the door in the other hand and a huge threshold to push the walker over. This happened to me and trust me I felt very accomplished when I made it over that Everest of a threshold. I have made many observations about the world of accessibility (or un-accessibility) since I started using a walker. 1. There are very few handicap spots in parking lots and often times you can't find a spot. What is the point of going through all that trouble to get a handicap sticker if many times you can't even find a parking spot? 2. Most places don't have handicap door openers. This has not been an issue for me because my physical therapist taught me how to open doors with the walker. However, my special education alarm goes off every time I go into a door without a handicap button saying, "how would a person who uses a scooter or a manual wheelchair get into this door?" 3. There is one cutout in the sidewa...

Imagine being 16 years old and all of your friends are getting their driver's license and hearing from both your eye doctor and parents that you will NOT be able to drive. How would this make you feel? Let me be real. . .I have shed many tears over the fact that I cannot drive because it limits my freedom substantially. However, I have found other ways to get around that are not as convenient but get me where I need to go. Before my back surgery, I took many things that I was able to do for granted. However, six weeks after my surgery and after having a major setback. . .I was not taking anything for granted. Every step I took and every word I spoke became an effort. I vividly remember walking to dinner on vacation and literally not being able to move another step because I was so tired and my brain was not letting my feet move. My dad was walking in front of me holding my hands and cheering me on but I literally felt like I could not move. However, I did not give up and made...

On Friday evening, I attended the premiere screening of a documentary that my cousin, Zachary Gorelick and his girlfriend, Hannah Silverstein produced about Clubfoot. My cousin feels very connected to the topic because of his own experience with this disorder. The documentary is truly amazing and such a great source for awareness on a topic that is not well recognized by the general population. In order to make the film, they travelled around the world and interviewed doctors and families that are connected to the Clubfoot community. One of the messages that I took away from the film is that education is one of the most important avenues to awareness. In many countries disabilities are thought of as a curse and the children are shunned by their communities. The documentary taught me that if you explain to people what the disorder is they will most likely understand and be more accepting of the difference. Most people become curious and even worrisome when someone looks or acts...