Say

"Say what you need to say

have no fear for giving in

have no fear for giving over

you'd better know that in the end

its better to say too much

then never to say what you need to say again

even if your hands are shaking

and your faith is broken

even as the eyes are closing

do it with a heart wide open

say what you need to say

say what you need to say

say what you need to say"

-John Mayer

It may be too adolescent of me to start a post with song lyrics, oh well call me an adolescent I'll take it as a compliment. It explains why I decided to go ahead with this post.

What is the social law that says we can't tell anyone about our illness until we have the medical label to go with it? That the medical profession must give us the seal of disapproval before we have permission to accept the support of our loved ones? Seriously somebody should tell me because I missed that chapter somehow. There have been times I wished I could have lent support earlier in an illness, but this strange law kept those I love from accessing the abundance of compassion and love available to them.

So here I am wondering what is wrong with me but no label to go with it. And I'm going to say it anyway.   

My hands hurt. They have for a while. There are other aches as well, but my hands... they are losing strength too. Today I went to the doctor. It felt like a big step, admitting to myself I need medical help. Blood tests will be back in a few days. They are testing for rheumatoid arthritis and other autoimmune disorders. I know something is wrong, so waiting for a label before sharing seems unnecessarily cruel to myself.

I look at my hands and wonder what is going on in there. It reminds me of Donna Blair. She was a sweet, hard working woman that I worked for many years ago. I will never forget the day she called to ask, would I come over? She needed help to turn the key in the car ignition, saying her hands just weren't as strong as they used to be. She rubbed them, pressing hardest where the muscle was thin, as if to awaken the strength they used to contain. Donna's muscles eventually gave up all their strength. She died of Lou Gehrig's disease.

My friend Tim knows something about looking at your hands and wondering what they contain. He has struggled to get that medical label for years, it seems just when he gets one they change their minds. Thankfully he is able to tap into a treatment that helps his hands cling to what he has. Label or not he goes on with his life and this month he graduates from college and becomes a teacher!

Remembering their hands I do get emotional. My situation could be worse, who knows maybe it isn't even bad, remember I don't have a label so I shouldn't be upset. I'm an artist, a mother, a gardener, a worker. How will I be who am I without my strong and able hands?   

Comments

[Jules]

1.

You have got my sympathies babe! Social laws or no, you can get the word out and see what needs fixing before the diagnosis comes back.
I would probably start with basic info about autoimmune disorders.
Let me know what you find out.