I have been going back and forth in my mind...I have this burning propensity to educate. I mean, yes, I went to school to teach, and yes, I will be home-schooling Jacob, but I want to educate people...on chronic illness. On invisible illness. Individuals, churches, organizations, etc. But I don't know how to get started.
Doug and I were talking about this on the way to Ann Arbor yesterday. I was thinking of contacting area churches to see if I could speak to them about this...about how people with chronic illness feel, especially younger people. About how isolating it is...how frustrating and comdemning it can feel...how absolutely powerless you can feel....
But all those things I just listed come into play...how can I schedule speaking engagements when I may be too weak to go? Doug summed it up: I need to find something with no dates or deadlines. The only thing that leaves is writing. Which I'm doing....I'm blogging, tweeting, e-mailing, and all the other e-things one can do with dial up. But it's not enough somehow. I'm praying that God shows me what to do. How do I get "out there" without leaving home? How can I use my brain without my body's cooperation?
I've never been a girl who liked limits...but MAN have I had to be a quick study. I know I have to take care of myself and my family before I go elsewhere...But I've been mistreated, misjudged, misunderstood SO many times that I want others to know what it's really like. Part of taking care of myself is having a purpose.
I have to get crankin' on my book...maybe that will be it.
It's so difficult living with this constant frustration. I need to learn to be content where I am, yet I don't think it's wrong to strive to want more...to help more....to educate....I really dont' believe most churches today know how to handle chronic illness. I have been BLESSED, BLESSED, BLESSED with many friends and helpful family members who help me frequently. Because of my illness and its varying degrees of severity, I do not attend church "regularly" right now, not for lack of want, believe me.
WITHOUT PLACING BLAME, there have been several churches that I have been involved with on many different levels that just don't know what to do. But I'm realizing it's not because they dont' WANT to, it's because they don't know how...or don't have the means. They will stand with you, help you for a while, but it seems that chronic illness always outlasts its contemporaries. If a church member who always visits moves away, the chronically ill remain. If the pastor gets called to another church, the sick stay. It's not easy or fun or even desirous to ask for and need help. It's frustrating. It can be humiliating. It can feel degrading. It can be embarassing. But the needs remain.
People are busy. Life is busy. It's demanding. Everyone has a life. Even those with illness. How do you balance needing something but not being demanding or selfish? As a caregiver, how do you balance helping others while living your own life? A conundrum to be sure.
I am open to suggestions...to what I can do to educate others, to what YOUR church has in place for those who are chronically ill...
To those who are caregivers, to those who volunteer, who help, who listen, who grieve with, who hold the hand of, who sit with the chronically ill....GOD BLESS YOU. You are angels. You are Jesus with skin. You may NEVER realize the good you can do by just being there. Thank you.