The Bracelet

    I have a lot of mixed feelings about the bracelet. The bracelet can mean different things including awareness, help, grief, relief and embarrassment. The bracelet in which I am talking about is a new medical alert bracelet that I have purchased due to my continuously growing independence and my recent diagnosis of Epilepsy. A week ago today I was diagnosed with epilepsy and a exactly a week after the diagnosis, my medical alert bracelet came in the mail.

    Over the years, I have been very accepting about my disabilities. I have gained insight and knowledge about them and how to create greater awareness. If you know me, you know I love to talk about my "issues" because its all about me and I am a self-centered individual with aspergers syndrome. Lets just face the facts and get that over with now. On the other hand my mother has some differing opinions that seem to make sense too.

    As a child, I was very aware about my disabilities. In face, I remember one time when I was in the bath tub as a child and my mother was teaching me how to wash my hair. At that point, I was diagnosed with what people call "Nonverbal Learning Disability".  Coming from an individual who is black and white and who is also very young, I asked my mother if I was mentally challenged. I knew I was in the average range, but it was clear to me that I had some issues with activities of daily living, even if thats not what I called them at that point. My mother would teach me how to do stuff, but she would not let me get away with stuff. Lets put it this way, she let me get away withs stuff until the doctor's told her that I was capable of much more.

    It is very safe to say that I was Molly cawdled as a child. I didn't learn how to poor a glass of milk or cut my food until I was ten or eleven. It took months to master remembering to put my bra on in the morning and it took years to remember deodorant. I still have trouble with washing my face. My mother was once told that I would be in a group home.

    Once I had the diagnosis and everything was explained to my parents, I was taught a lot more. I had potential and my mother wouldn't let me forget that. She would expect me to do stuff that the typical kid my age should do or within two years of my age should do. She didn't let me get away with stuff. Often times I would say I needed something or thought it was a good idea, but typically it was a crutch. When I was a child, my doctor told my parents to not go to the epilepsy conferences because I was setting myself apart from others and using my epilepsy as a crutch.

    Today I look back at those moments time and time again. I am aware of much more going on around me. I knew about our local autism conference for a couple of years but I never bothered to let my mother know because to her I was to act normal.To this day, I never use fidgets because they will set me a part. Every once in a while I will use a pen and push the end that makes it go in and out and thats about it.

    Once when we were in the psychologists office, my psychologist stated that she wouldn't be in the office for a week because she was going to the autism conference. I told her that I knew what that was as if I had always known. My mother gave me a look and asked me why I hadn't told her this before. I automatically snapped back that I didn't think she would approve of me going to the conference because I am supposed to act normal and not go to special things. Well, from that day forward my mother and I have been going to the autism conference.

   When I had the seizure in July, it was quite a shock to be told to head to the ER. I thought we were simply reporting an "anxiety attack", but my doctor thought it could be a seizure. When I heard that it could be a seizure I instantly started thinking about this coming school year where I will be in classes of   three hundred kids with no personal assistance. I thought about getting a medical alert bracelet, but i also wondered if my epilepsy was too mild. I neglected to tell my mother my thoughts and ideas for I feared she would put them down. Don't get me wrong, I love my mother, but sometimes we have different opinions and thats okay. I can be a little dramatic sometimes.

   When she brought up the idea of the medical alert bracelet, I took it to hard. I really thought about it and talked to some other adults. My disability specialist thought I should get one and so did my neurologist. It was a go. The next step was picking out which company I had to go with and what bracelet I wanted.

    That week, I went to the grocery store where our local pharmacy is, to pick out my bracelet. I took a couple of flyers, but nothing really looked great to me. I picked a couple bracelets out and posted pictures on facebook. Many people looked at them and gave their opinions. Others decided to criticize or question me on why I would post such a personal thing and decision on facebook. Once again this was the setting my self apart theory at work. I have to say I got a little bit assertive with my answers.

    I want to look at in a simple and fun way. Epilepsy i a condition I have and nothing tis going to change it. Its not something I can hide if I want to be independent and most importantly safe. I was simply asking for fashion opinions when i posted the pictures and to be perfectly honest, I must admit that my fashion senses aren't always the best. Look at me, the girl who wore crocs for 5 years and was given heck about it. Its just a face of life and if you have a problem with it, you not worth my time.

    I got over the hurdle of picking out my bracelet and answering personal questions about why I was publicly posting this. I punched my order in and now it was time to put the engraving information down. I have my diagnosis and my parents phone numbers on the back. Never call 911, unless instructed to. The majority of my seizures are not life threatening unless I am alone and near traffic which will most likely never happen and in that case, no one would be able to call anyway. The numbers are on the back to direct those who have not dealt with my seizures before and are uncertain about what to do or why I am acting a certain way.

    The bracelet came today. My mother was tempted to open and thank goodness she didn't. it was awesome to open the package and see how this bracelet looked. It had my favorite color on it: pink. I put in on and started thinking. I know that it sets me apart, but I do that to myself all the time. I also know its a sign of independence and that it can help me and thats great. My problem is how will other people think about me. I know those that are worth my time won't care, but does this bracelet make me look like my epilepsy is worse that it is? its really hard to deal with this. I was put on medication a week ago, but I was already taking medication for other stuff. It felt so great getting off my seizure medication five years ago. It was really hard to realize that I do still have epilepsy.

    A week ago, I walked into a doctors office hoping that I had epilepsy. What a horrible way to look at things, but it was an answer to a long awaited question and prayers. Its still not a definite since my EEG is normal, but its likely. Its really hard to come to terms with the idea that you have a condition that people think of a severe. They think of huge grand mal seizures. Mine are little tiny episodes where I don't remember stuff and am a little confused. Granted its scary, but its not dangerous.  I am sitting here proud to be wearing this bracelet. I am proud that I don't fear people asking. I am proud that I hope people can ask questions, but there is that little part of me that just hurts inside. I am feeling relieved and grieving at the same time. Is that possible?

   I am going to continue to wear this bracelet. The fact is its just hard when you have a physical object that is a visual representation of a disorder you have. At least with autism, fidgets could simply be toys. I do admit that we do have an autism ribbon on the back of our car that I am very proud of, but no one knows who is autistic. I am proud to be and educator and public speaker. I know I can do this and this bracelet is important. After all its pretty fashionable, my style and will help me in the long run. The trouble is dealing with a diagnosis of epilepsy in the end. its sounds so scary, but its not life altering. I sill have the same plans for my future as I did two weeks ago or even a year ago for that matter.

I will leave you with this to think about and ponder over. If anyone has any questions, feel free to comment and I will be willing to answer. After all I love to educate and advocate. :)