Double Sided

When you see in yourself what you’ve been afraid to see. When you have movements and oddities that you’ve always watched and been saddened by. When you feel the symptoms and can share advice thanks to God, but not have to watch it from the outside. When you’re fears come alive. Nothing is safe. God and Jesus are your rock. When you ‘have’ to accept that you’re sick and people leave and things change all the time it does whatever the hell it wants when it wants to even if it doesn’t make sense and even though you’re feeling it, noone really wants to be there to see it or hear about it. You have juvenile huntington’s disease, and you know you hurt others not on purpose but by not even knowing it. Finding out that you’re more like something you don’t want to be and can’t control it. Having a stroller instead of a car. Having puppies and not human babies. When you avoid people because you can’t see what could’ve been. Having to watch people do things you used to be able to in front of you. Having no energy left in you because you’ve lived it out. Knowing you’re going to die but don’t know when and how do you live your life if you know anything could happen at anytime, and i know even healthy people say that but c’mon this is a monster disease we’re talking about not a theoretical scene “getting hit by a bus” really?! Having to hear others talk about you’re jhd issues like you are the disease.. do this around, this will distract someone with, sometimes its yes i couldn’t, but other times it’s just me having this disease and being put into a category how to change my mind when talking, how to etc.. how to handle someone with jhd, that you have and so it’s like trying to be controlled, except i’m a person not a robot. The honesty about people who left and who’ve hurt you coming back on after you die and putting up pictures and saying things positive that they wouldn’t do when you’re still alive. How fucked up is that. Is all of this. People can’t tell you what you can and can’t do. You can’t be programmed from an instruction manual, even if it did exist which i think would actually be great to have. The frusteration of having this and trying to change things that can’t and won’t be changed because it’s a repeat every time. Noone can truly say anything about it unless they have it. I love all the jhdkids and know they go through so much too and deal with all of this it’s not as lonely. It helps that God and Jesus showed me the way straight through the journey to get this set up and on here the passion to want to do it pilot it and keep going until you can’t anymore. God’s Will. There’s the don’t ignore me because i’m sick etc.. but that’s also repetetive the actions that they give. and i tried to fix it and couldn’t. Just wanted to break the cycle. Guess i’m too much in jhd to be able to, or if anyone can at all. and noone truly knows how scary everything can get and the fear of knowing the pain of losing people when they die and you feel pain you wouldn’t wish on your worst enemy. Noone can understand that unless they have actually been through it, otherwise it just seems like a mirage, something that you know will happen but when it does you’re never truly prepared because it’s unbearable. Thank you God and Jesus for being here, in life and in death for us all, when we’re called out in God’s Will Timing.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.