Sunday, February 24, 2013

Why Blue?

photo by Jeremy Ramsey

I know that I am going to be asked a million times “Why blue?” and I know that I won’t ever get tired of being able to answer it! There are some times in our lives that it seems like there is nothing that we can do, but we can always do something. My something is blue – blue hair. I have just moved quite a way from my family for my husband to take an amazing job in Pennsylvania and my dad is in Alabama in the middle of deciding whether Deep Brain Stimulation (DBS) surgery is right for him. I want nothing more than to be able to take away the stress and anxiety of this decision and even just take away the Dystonia but that is not my reality. Instead I am left to feel like there is nothing that I am able to do and so instead, I am choosing to dye a lock of my hair blue. Not just for my dad, but for all the people that have touched my life in some way with Dystonia. No, I don’t suffer from Dystonia but I know so many strong, amazing people that do suffer from this disorder and I can only bring awareness to it for what it is, does, and takes away.

Dystonia is a neurological movement disorder that causes the muscles to contract and spasm involuntarily. It affects 300,000 people in the US alone and there is no cure. Dystonia entered into my life through my dad in 2006 and has been a major part of our family’s life ever since. I have done many things to raise awareness and money but currently find myself in a place that none of the things I have done in the past are right for me at this moment. However, I mentioned it to my husband the other week that I was thinking about it and he said simply “Do it!” Well, I did. I don’t know exactly how long I will have it blue or exactly what I am going to do about it, if anything, to publicly let everyone know what I am doing other than this blog, but I will figure that out as I go. The coolest part about this whole turn of events in the last couple of weeks is that my husband said one day, “What if I do it, too?” Well, that is in fact what we have done. We did it together. We both ‘went blue.’

So what does this mean? Well, nothing really, other than to let people know that there is a disorder out there that goes by the name Dystonia that is affecting people’s lives drastically. There is no cure for it but some great research is being done on it. There is a wonderful foundation that I am passionate about called the Dystonia Medical Research Foundation that is full of compassionate people all working toward the good that can be found to help with this disorder. So really, this boils down to this is about awareness.

photo by Jeremy Ramsey
For now, we are planning on keeping our locks blue until my dad decides what procedure he will have, has the procedure, and recovers. After that, who knows what we will do – but I will think of something! BUT for now, I will just start answering the question of “Why blue?”, telling the facts about Dystonia, raising awareness, and sharing my dad’s story!

….. oh, and when you feel like there is nothing that you can do, you can always do something!

For more information on Dystonia and how you can make a difference, go to www.dystonia-foundation.org

3 comments:

Anonymous said...

Hi! I have dystonia and take part in awareness events as well. I also have a son with autism. Thought I'd just share with you if you see 'GO BLUE' for the month of April it is Autism Awareness month and that is their theme. Everyone around the world will go blue on April 2nd, Autism Awarness day! It travels around the world to all countries. Quite a sight to see tge bridge in London light up blue, the Empire State Bldg and so on. We have been working hard spreading the word and its a success! April is Go Blue for Autism Awareness ! Check it out as awesome pictures get posted from around the world! It may help with your project!! Good luck to you!!

Unknown said...

I think it is awesome that you went blue!

Unknown said...

I think it is awesome you went blue girl!