I rarely go out. My major outings are to church (about twice a month at most) and the grocery store 3 blocks away. I just don't have the energy although I keep busy at home.
Before my illness I was Ms. Involved in the Community. I was the PTA president, was the "team mom" for football (7years) and basketball (5 years). I attended every sporting event, away and at home for all 4 kids. I may have missed a couple due to scheduling conflicts or illness, but I don't remember missing much. I went to every parent-teacher conference for all 4 kids, and volunteered regularly in their classrooms and for class parties or field trips. I was on two non-profit agency boards - secretary to each, and ran a 24-hour sexual assault program with a staff of 107 people. I feel tired just writing that, and I'm not trying to brag - it's simply a fact of how I lived my life - with gusto. And I loved every minute. I devoted my life to my family and things that really mattered to me.
Now....trying to find things I am able to do is a challenge, but I've managed to do so as best I can. I joined a philanthropic group of women who raise funds for local 501(c)3 organizations. All that's involved is attendance at a 1 hour meeting four times a year. And it just so happens the meeting is within walking distance of my house. So, I went to my first meeting last night.
Ugh.
I saw many people who I thought were "friends" - not great talk-every-day type of friends, but women I liked and spent a great deal of time with over the years at sporting events and school functions. Many I've known for 25 years or more. Last night was certainly an eye opening experience for me. I'd guess that 85% of the women I knew completely ignored me, sometimes blatantly. I waved at one I hadn't seen in a long time and she looked away and didn't wave back. I said "hi" to one who shoved a piece of paper at me and I asked "what is this?" and she said "its a ballot" and walked away. There were a few who hugged me and said they were happy to see me but barely recognized me because of the weight loss (almost 70 lbs. since July 2009) and commented on how much my daughter looks like me now that I am her size.
Today I talked to a closer friend who lost her son in a boating accident in 2009. She experiences the same thing when she enters a room. I think she is wise when she says that she and I represent the worst fears in people; to lose your health and die or to lose a child and folks simply don't know what to say or do. We make them uncomfortable.
This is so foreign to me; I've been a nurse since 1979 and I've been the one to tell many families that their loved one has died and have sat with them for hours providing comfort. I've taken care of gravely ill patients, especially in the ICU and I was trained in how to act and what to say so it's natural for me. If I saw me walking through the door, I'd be one of the first ones to run over and provide support. I have to remind myself that not everyone is like that; in fact most people are not. I hope those reading this post will think about this and how to approach people who make us uncomfortable due to illness, tragedy or deformity and think about how those people feel when you turn away; when you act as if you don't see them and leave them feeling invisible - as if they don't matter. Because they do matter and they have lessons to teach you.
