I like the new cab company. They come right to my door and make sure I’m able to get up the stairs and inside the building. The small bus is warm and cozy, clean and without the heavy smell of tobacco lingering. I’m surprised that bothers me. I used to smoke but now the smell is offensive to me. I’d never, ever tell a smoker they stink or some rude thing like that because I hated when people did that to me. Shaming a person helps no one especially when the shame is public and personal. You should never be so bold as to offend someone like that. I guess what I’m pointing out is that I never expected to feel ‘offended’ by the smell of cigarettes but now as a non-smoker I am. Interesting change. So anyway………..
I got in the bus/cab today and was asked to sign the paper saying I’m riding. Beside my name was written in size 30 font “high strung”. It said, Faith Austin (high strung). When I saw it I laughed because it’s accurate. I’m high strung. I lose it easily but I also have a sense of humor so when I talked to the company owner who schedules the rides I asked that she change the statement to read, “high strung with a sense of humor.” She said the people they take have serious health issues and it helps the drive know what emotional state the rider is in.
The driver that brought me home is a cancer survivor who said that Lupus is like cancer only at some point cancer stops. I nearly cried. He said, “I get it.” I just wanted to cry. I asked him if he sometimes felt as if he’d lost his mind. Did he feel as if nothing made sense and that he’d gotten everything the doctor’s said all wrong. He said he felt that. He said he flipped out on people, was an emotional time bomb and was a total angry mess for a long time. He said he joined a group to help ease the emotional tension and burden that a disease can put on you. I feel that tension in my brain. I feel the heaviness and the weight that feels like it won’t ever lift. My God! He said that his friends and family suffered right along with him because cancer (like Lupus) doesn’t just belong to the individual it touches everyone that individual loves and cares for. It even touches neighbors who might rub them the wrong way on a highly emotional day.
What a relief and validation to talk to him today. I needed to hear that yes, Faith, you are crazy but your reaction to this is normal. I even pushed it a little bit and said. I’m angry that it’s happening now. I’m angry that at this point in my life I’d have to deal with Lupus crap. Instead of just regular pain day in and day out I have to deal with life threatening symptoms. Why? He said, Yes, “Why me. Why you? Why?” He never said to move away from those thoughts, he just validated them. My goodness do I have to tell you how wonderful it was to hear someone say they get it and the understand that the road with Lupus has been long and will be longer and it will be ugly? That type of validation from a 5 year cancer survivor is like gold. I just needed to hear someone tell me that my messed up thought process, my emotional terror and breakdown is real and normal.
I thought at one time, please just let me have the regular pain of Lupus and Fibo back. Let me have the pain that I know and leave the rest of this behind. I’ll take again staying at level 8 pain. I’ll take it, give it back and let the rest of this go to the dogs. Can I have that please?
I needed that driver today. He arrived at a time when his presence was needed most.
Thank you so much for saying what you said and for how you said it. Thank you.