This post is unplanned. Having moyamoya disease is unplanned. Feeling all that I feel right now is unplanned. Is that even a word anymore? It feels like a way of feeling, experiencing, and expressing the things you can’t normally talk about.
So, with uncensored emotions, please bare with me as I try to pen all that I am experiencing within. Please, understand, this is but a blip in my life. I would like to say that, although, I try to strive for positivity… sometimes things kind of knock me down. Tonight, I was reminded of how serious having moyamoya disease is. Not by my symptoms, but by losing one of the fighting forces in my moyamoya community. She didn’t lose to Moyamoya. It’s just a hard lost to me, personally, because I see how hard these people in the moyamoya community fight to spread the awareness, fight the disease, and fight to live. I know because, I live it EVERYDAY.
It’s one of those things that is sometimes hard to share with people. Telling people that you can die from this disease, that there is NO cure, that spreading the awareness is key… feels like I’m not doing enough. Some days, I literally feel like.. could it be today? But, my mind and heart stands against that and I firmly tell myself… NO. I thank God for every second and day that I have with my family and friends. EVEN when everything in my day goes wrong… I’m happy to feel and live through it. I feel alive.
There is fear in a lot of this. That was my second reaction to the news. Sadness and the tears are first. But, at the end of it, you feel proud to have such strong people fighting against this. It inspires me… and in that moment… I hope the fighting spirit of each of us who have moyamoya continue to live on through and after all of this. I want to embrace all that I can, even when I feel sad, scared, and inspired. I want to live bravely… and write all of this down before I push it back at the back of my brain again. Because, in moments like this it’s hard to tell other people the sadness this community may feel. The sadness that I feel. Not everyone is receptive to receiving such news… but honestly being positive isn’t just going through the good things in life. It’s the choice to keep choosing a healthier mental, spiritual, and physical life style. It’s the choice to keep hoping for and DOING the best that you can in life.