Eye on Research

Please see THIS post if you want more information on what Visual Snow is.

I belong and help out with a Facebook group for Visual Snow. Something that I've been doing for a few years now. Lately their has been a bit of a debate about raising money for on going research. With some even going so far to say that such research is a waste of money. Personally I think such negative views are extremely counter productive to the overall goals. Distracting us from the bigger picture at play.

Eye on Vision Foundation which is run by Jen Ambrose has been working hard for years to raise enough money to fund a full research into this condition. She like many others suffers from a more severe form of it which sometimes limits her over all vision and has a direct impact on her daily life.

My Visual Snow these days is way more mild though their are some days when my vision is directly impacted because of it. More so at night. However when thinking about the research. I don't see it from a perspective of myself. I want the research to very much move forward. Their are many of us who suffer with this condition who are in far worse shape than me.

Any time we conduct research into anything. Their is always a chance that a path may develop and new doors being opened where they didn't exist before. Medical journals have been written on "accidental" discoveries that have changed the way we operate. I see the research into visual snow not just helping us. But with other conditions such as tinnitus. A condition that readers of this blog know I suffer with on a more sever level.

Overall I feel that the efforts of Eye On Vision Foundation are extremely important to the visual snow community. I know that Mrs. Ambrose has spend a considerable amount of time and money into this effort. Those of us who deal with this condition want answers. We want this condition to be accepted as something legitimate. But we also want treatments and possible cures. We want help and so far Eye on Vision is the only group doing this.

If you would like to help out Eye On Vision Foundation. Which is a 501(c)3 origination. Please check out their donation page HERE.

-JM

Storms in our lives

Note: This was written as a FB post.

In the storms of our lives we must surrender all to Christ. Even when we cannot see a clear path out of the storm. It is often said that Christ is our light. This is very much true in this day and age. The evil one will use every trick in the playbook to try and build a wall between us and Christ. Often times it is way more subtle than people realize. A distraction here and there that can lead to total panic and anxiety. Sometimes the storm lasts far longer than what we would like. Often times it seems like the storm will never pass. No matter what. We should thank the Lord for all that He has done. Along with thanking Him for all He Will Do. Their is a praise and worship song that came to mind as I was on the ride today. "Amen Amen our hearts cry, His word is true! All that the Lord has said. He will do." I surrender to Christ all that is going on right now. Just not for myself. But for those closest to me. Lord give us the strength, the wisdom, and the courage stand up and ride the out the storms.

-jm

Not an easy road

 It is not always easy when we have a chronic condition that makes taking part in every day life a struggle. To go on with our lives as if nothing is wrong. Yet knowing that our lives are by no means normal. We wake up each morning. Wondering how our issues will directly effect us. Wondering if today will be a good day or a day where we want to crawl and hide. Our struggles are very much real. Even if others don't fully understand them. 

I was born with a mild case of Cerebral Palsy. Because of that I have some mobility issues along with a host of other challenges. Too many to list in this blog post. In addition to the Visual Snow and it's related issues. I also suffer from hearing loss as a result of the extremely severe case of tinnitus. In fact on any typical day the noise is far worse than the snow. On top of that I also deal with moderate anxiety/panic attacks. This is the reality that I live in. These are the challenges that I face every single day. My own worse enemy happens to be the person I see every time I look into the mirror.

Over the years the Lego Church Project has become a focal point for me. A deep statement about not letting challenges define you. When I first developed Visual Snow around 2011/12 the static was such a distraction that I wasn't sure I could work on the project. No clear idea if the VS would effect my ability to do something that I love. As you can tell from the blog and the FB page. This is not an easy project to work on.  I've been doing this project for 18 years now. I refuse to let any of my challenges stop me from what I am doing. VS and the other stuff I face are just part of who I am. But they are by no means the full story. I would rather be defined by my faith. My project. My life. I don't want to be defined by my challenges. I would rather use my project and my challenges to raise awareness. To show that no matter what you face you can do something creative with your life. That God can and will use your talents in amazing and creative ways.

When you deal with any kind of chronic and on going condition. Life can be a struggle. I had a very important choice to make. One that I still make every day. I would rather do my best to rise above my challenges and to live my life the best that I can. The road is by no means easy. Even for me. But I take comfort in the fact that my challenges have not stopped me from doing the things that I love. That I have a deep passion for. What helps me to survive the rough days is my faith in Christ. My enjoyment of the Catholic faith and all that it is. Taking comfort that with Christ I know I can ride out the storms that seen to toss me around just a little too much for my liking.

I close this post out with this: People ask me how I survive with my challenges. My answer is always the same. "By the Grace of God I am still Standing."