As much as some people would love a nice chunk of drama, this is not it. My life is surprisingly free of it. I guess the changes I have been making do make a difference. The moment you remove the noise and listen to the well tuned airwaves things seem to get pretty clear. This post is a little different, it’s more of a series of thoughts that have been floating in my head. I’ve had tons of crap floating in there lately. Some of them have to do with the terminal illness of a loved one and not really knowing how to cope with that.
This part is personal… very personal. So much so that even as I write it I wonder if it is mine to tell or not. I just don’t want to forget this. Not the pain part, but who I am right now and what I think about the situation. Reading back on post from years ago is a great little reminder of who I was back then, but better yet. How have I changed.
ALS is a horrible disease. I quit talking about it partly because of the things it was attracting… horrible human beings that want to promise a cure, but are actually in trouble with the law for scamming the sick and elderly from their hard earned life savings.
There were terrible things that I had to face, but nothing compares to what the person with the disease is going through. You know what the hardest thing was for me to take… the fact that shame had anything to do with the situation. Yes, shame. As in, I don’t want people to see me having to be fed. It was not simply the pride of someone that always took care of not only themselves an others. When part of who you are is being a provider, making that unwelcome transition to be the one receiving care is not an easy one.
I was very angry. My whole life I have fought the stupid shame monster. As I get older I care less and less what others think. I am better at not taking things personal. I can honestly say that if you don’t like me, I am OK with it. I finally understood that lesson, some people will just simply not like who you are. “I know you hate me, and I am totally OK with that.”
I don’t know how to transmit that feeling to someone else though. How do I remove that shroud of shame from someone else who has always been proud. I know I have personally seen an elderly person out on the road and said they should have their license removed… but what about when that is your last sense of pride and independence.
We live in the world of superficial interaction. I am sure your Facebook has people that you don’t know well, but either would like to know better or thought you knew at one point. I have heard from others that they hate “such and such type of update.”
“I hate the people that post every meal.”
“I hate the people that post pictures of their kids on different outfits.”
“I hate the people that take up working out and all they post about is their workout.”
“I hate the people that seem to only post about their new found religion.”
“I hate the people that post about their travels.”
Why do we have such an easy time hating others for what they share? Is it always some level of jealousy?
I have not had to do it a lot, but when I do get a negative comment to something I am excited about I am quick to point out that you can unsubscribe from me, or even unfriend me. I think that feature is golden. If I don’t like your noise, but like you as a person I can simply not follow your updates. Sharing things in the internet can make us seen one dimensional, but we are all complex being with tons of shit going on in our lives. From following my Facebook you would never know that I worry about people close to me having cancer, I have someone with a terminal illness and I see them deteriorating every time a little more… my close friends know that via phone call, I don’t need the empty sympathy of a comment or worse, someone liking a sad status because they are too busy to actually type a comment. (I have seen it done, someone posts something really sad and people actually click the like button.)
So even though I think I have conquered shame, I still don’t want to fall to.
“I hate the people that post about their relative dying.”
I am not ashamed of it, I don’t want to share it… I just hate the fact that my relative feels judged in some way because of his condition. I hate the fact that there is nothing I can do about it. Nothing I can ever do (besides curing him) will ever bring him back.
We are all complex creatures going through this journey of life. I like to think that if you get to know me you won’t hate me, but if you do… don’t waste your time. I am certainly not wasting mine.