Why is it so difficult for me to talk about this stuff? I mean, literally, to speak it is such a challenge for me. When I write, it’s therapeutic, when I’m forced to use actual words, it’s a source of strain, like the pot of my diseased grief is being stirred and brought to a boil. Writing is such an effective way for me to both communicate to all who may be concerned about the course of my health, and decompress and process the information myself. In one shot I can give detailed information to dozens of friends and family without having to experience the stress of re-living it verbally over and over and over. Talking about myself is incredibly difficult for me to begin with, and verbalizing some not so positive details is something I will do if I have to, but I won’t like it, and I’ll usually make whatever we’re talking about sound less awful than it is. Not to mention, typically, I’m affected by the interpretation of the other person. In other words, their ability to receive what I’m telling them affects me greatly. When I sense they are worried about me and the information I’m giving them, I tend to want to make it lighter, sugar coat it. When I perceive they are confrontational and judgmental of my or my doctor’s decisions, I shut down, and shut them out. When they haven’t quite reached their daily quota of giving everyone all the answers, and then unload on me, my silent nod is merely taking note of the fact that I probably won’t share anything with this person for quite a while. And when I recognize someone is merely asking because they know they should ask, but hardly appear to care to listen to the answers they sought, I say as little as possible and quickly try to protect myself from sharing this private and personal information with someone who is crushing my trust with their lack of interest. Yet still, there are those who really care; those who want to know for themselves so as to be family to me regardless of whether they are blood related at all. Those who want to help me unload the burden of this disease, so that they may offer to carry some of it – who desire to understand in order to help me feel less isolated. Who I know care about me because they care about my story. I’m amazed by these people.
But, I’m frustrated and I’m hurt. For nearly twelve years it could be said that the people in my life were in the dark about me because I put them there. This statement is very true. To protect myself and those around me, I intentionally withheld information about my health. More than information, I withheld from them the opportunity to share in my suffering, and to be a support for me if and when they wanted to. However, this argument cannot be said anymore, I’ve made this private battle of mine, very public. There is no excuse to be uniformed. Hardly a time to say, “I didn’t know.” Because, between you and me, the message I received is, “I don’t care.”