I've been feeling a rant coming on for a little while now. Maybe it's not a rant as much as it is my need to share my feelings and help you out a little. If you sense a bit of sarcasm or an attitude, you aren't imagining it.
Attribute it to my desire to believe the best about people, but I seem so shocked all the time at how little people actually think about others. Thoughtfulness and consideration is a hard thing to come by. Understanding and acceptance? Even harder to come by. I've been feeling like I need to get a couple things off my chest...
1. IF you know me, then yeah, you know I'm sick. No doy. You know I have scleroderma. You know I have both pulmonary fibrosis and pulmonary hypertension. You know I've had an emotional, difficult ride through pursuing every treatment on God's green Earth. You also know, none have worked or been available to me. The prognosis is terminal. Time is limited. Alright, so now that this is clear, let me make something else clear. Please please think before you say things to me. I know it's a difficult spot to be in and knowing what to say is not always easy. So, how about this, JUST SAY NORMAL THINGS. I'm still me. There's no reason I can think of that I should hear either of these two phrases from anyone (including in emails, text, etc.): "You poor thing" or "Well, it could be worse". Huh? Think about that for a second. Want some quick info on how people like me die? They suffocate. Literally. So, nope, can't think of a way that could be worse. And yet I still don't want your pity. Or at the very least, I don't wanna know about it. You can feel how you feel, but don't tell me you feel sorry for me. Please!
2. Please don't be overly nice and talk to me in that sweet, fake concern voice. I'm not fragile. I've proven to myself that I'm much stronger than I ever thought. And I'm not saying I won't be nuts by the end of all this, but treating me like I'll break if you don't fall all over me when you see me feels condescending, even if it's not the intention! If you see me, just be real. If you're glad to see me, then say so. Just remember my body might not work well, but there's nothing wrong with my mind and really nothing wrong with my spirit at this point either. I'm doing ok. I think the biggest problem I have with this is, be kind, supportive and respectful to me because that's who you are. We could all do a little more of that in our treatment of others. If you are already kind and respectful then when you see someone that's going through some stuff, you don't have to flip a switch and be on. Just make it what you do. Always.
3. Which kinda brings me to my last gripe. You know what's really annoying? There are so many people who are straight rude and inconsiderate, especially to people who use wheelchairs or other ambulatory assistance. Now, I know what you're thinking. I just said don't be fake. I'm gonna tell you though there is a ton of area between being overly nice and being a straight jerk. I'm not gonna lie, there are advantages to using a wheelchair sometimes. No lines at the airport, close parking and usually people are nice enough to hold doors and make room in an elevator. Travelling a lot with my friends has really opened my eyes to what people with disabilities really have to deal with.
The worst is that if I'm in a wheelchair and you have a question, I'm gonna need you to ask ME. NOT the person pushing the chair. Look at my face and realize I'm making eye contact and I'm talking to the people around me. Obviously, you don't need to ask the person helping me if I can walk. I can answer that question. I can tell you if I want a refill. I can say excuse me and please and thank you. For the longest time, I thought the stares were the worst but the assumption that because your body doesn't work, that also means your mind doesn't, is so rude.
That's probably enough complaining. Just lettin ya in on a little bit of me you probably didn't wanna know about. Oh yeah and don't worry, I'm not into cussing people out in public or anything so you can still talk to me when you see me out. Ha!
I'd say that's my quota of run-on AND incomplete sentences. Way too many ill-placed commas and plenty of sentences ended in prepositions for one day. Clearly, I'm not a writer but I play one on this blog.