Faith Island

(From a Facebook post. I have been trying to blog but just haven't been able to lately. Also have  needed to express how I felt to my friends. I felt really sad this morning until I wrote this. Immediately after writing and getting clear with my friends, I felt better. And better still when people reached out.)

Keep trying to write something to express this and I just don't really know how...so here goes. (Please read...thank you in advance).

Faith island feels terribly lonely and hard these days. After 3.5 years of being very sick (and almost 20 years total, but I think I should just lose count), the support is different. If I ask for help specifically stating what I need, it is there and I am very grateful. But what is missing is my friends interacting with me --- almost at all. I know everyone is busy, but man it gets hard and lonely on Faith island. A text, an email, a card, an occasional phone call or visit or walk, etc. means the world to me. Being chronically sick means invites to parties, events and even plans made often get cancelled. And having Encephalitis/an acquired brain injury -- I know I can be unpredictable and not the easiest person to be around sometimes. I'm still me though - the friend you love. I still enjoy laughing and just being with my community. When you reach out...even a quick text, message, etc. - gosh it means the world to me. Extended interacting can be hard on my brain, even though I love seeing people. Short visits one on one or just a few people, in non-noisy environments are best. Even a quick note or email. Anything - some interaction. I can't tell you what medicine it is. I miss hearing about your lives, your kids, what your days are like. I miss my friends...terribly. Trust me, we don't have to talk about my health challenges unless you want to know details. I'm committed to getting well and know that it will happen. The process is still unfolding.
Anyway, I apologize upfront for saying what maybe I "shouldn't say," but there it is.
I remember when I worked with parents of very sick children, they would talk about how there was tons of support when the child was first diagnosed and then maybe if they are in the hospital or if hospice gets called, but otherwise it disappears and they are left on their "island." Doesn't have to be this way. Reach out. If not to me, to anyone in your life that you love. If they have major life challenges, don't be scared about not knowing what to say. Often all they want, all I want, is human interaction.

Okay...I'm done.
I love you all. Thank you for being in my life.