And I know that I’m still fucked up
But aren’t we all, my love?
Darling, our scars make us who we are
So when the winds are howling strong
And you think you can’t go one
Hold tight, sweetheart…
I’ve talked about this a few times before, once extensively that I can remember… unless I’m just implanting memories in my own head, which is entirely possible as I’ve not had much sleep today… but it’s time to go over it again.
Progressive Myoclonous Epilepsy with Early Dementia. Or, FENIB. (Which means something else entirely that I don’t know.)
My family’s disease.
I’ll start this by saying fortunately, my mother does not have this disease, so I can’t have it, my kids wouldn’t have it, etc. So this is not an “I’m sick,” post.
I haven’t been back to Indiana where I grew up since January 2016 when I went back for the Celebration of Life for my cousin Kyle. Kyle was maybe 5 or 6 years older than me? Maybe a little older? But the difference between Kyle and I is that he was afflicted with the family disease, and I am not.
Well, wait. I don’t like the word afflicted. That makes him sound weak and subject to his disease. And while the last bit of his life was like that, for the most part? He took that disease by the balls and made it his bitch. He and his brother Kristopher were so strong. Maybe I perceive them as such because I only knew my uncles when they were in later stages, versus I knew my cousins before the disease really took over… so perhaps they just seemed stronger to me.
But it will always take you eventually.
It took Kyle last year… and it’s going to take Kristopher soon. From what I understand, he’s not doing well at all. They have brought in hospice care for him… and knowing my aunt the way I know her and how dedicated she was to keeping the boys as independent as possible, she wouldn’t bring hospice in unless it was close to the end.
I’m just at the point of waiting to get that call.
So if I’m distant lately… not only am I insanely busy throwing myself head-on back into dance and Miss Colour of Couture, I’m just kinda coming to terms with losing another one of my cousins soon. Trying to mentally prepare myself for when I DO get that call. Because it’s going to happen.
But no amount of knowing that it’s going to happen will completely prepare me for when it does.
Shape || Mine
Head || Chloe Bento Head (v2.7) | Lelutka
– There has been a 3.0 update that has come out… I’m just too damned lazy to unpack it yet. Lol.
* Skin || Yulia (T6; Tawny) | Lumae
Eyes || Hurt Eyes | Izzie’s
* Hair || No Promises (Red) | Exile Hair | Collabor88 | new!
* Bodysuit || Adela Jumpsuit | Candydoll | FaMESHed | new!
– Recently, I have been accepted as a Candydoll blogger. So welcome to the crazy! Sorry to introduce you in such a sad, distant post. I’m looking forward to working with you!
* Boots || Theo Boots (Crimson) | Fri.day | Rewind | new!
* Collar || Masuria Collar | Cae | ROMP | new!
* Tattoo || Existenz (Black) | White Widow | Collabor88 | new!
Location || Bella Pace
Blogging Tune || “Rainbow” – Kesha