I've touched on this in pasts posts, but I think important enough to justify a post of its own. I've been reading a lot of other blog posts and it's hard not to notice how bitter a lot of YOU are. I realize that I'm a "newbie" both in the blogging world and in the MS world and that's probably more for you all to be bitter about. That said, I pulled myself out of a funk and quickly started analyzing not only what I was doing, but what other people were doing and how that affected their well being and how others treated them.
I have no social science background, so I'm a self-proclaimed expert. Whatever, I've read some and I over analyze everything. If you choose not to even consider what I'm saying, that's up to you but I think it's weak not to at least consider that some of what I say might be true.
It started with my diagnosis (2008) and the decision not to immediately tell the world, or at least the people I work with. I made that decision under the advisement of some nurses and my physician, although I didn't know why at the time. I should say that 1) I was having a pretty tough time with the diagnosis, and 2) I like to talk (which you have probably figured out), so it was hard not to talk about it, but it got easier over time. I did tell friends eventually, but kept it to myself at work. I figured everything out when I was put into a high-pressure situation (spoke about it in a previous post). I figured out that what I was worried about wasn't that I would be discriminated against and lose my job due to my illness. Quite the opposite, I didn't want to be overlooked because people were worried that I wouldn't be able to handle the stress, etc. THAT NEEDS TO BE MY DECISION, NOT SOMEONE ELSE'S!
I remember thinking that if the guy who put me in my current position would have known my situation, he might not of given me the opportunity because of the other things I was dealing with in my life. As it turns out, it was the best thing for me because I was engaged and other people were depending on my success. I didn't have time to think about what might happen. I've talked to other people who have let their employers know about their situation and they were subsequently overlooked. This is NOT discrimination in the way many people think of it, but it has a similar result.
My thought is that people will likely figure it out eventually either because I won't be able to disguise it anymore or because word will just get out since I don't keep it a secret anywhere else. If that's the case, fine. I would think/hope that at that point they'll say to themselves, "he's had MS for 5 years? I never would have suspected" and they'll go about their business. When I'm really feeling idealistic, I tell myself that if they do find out, they'll probably be saying "man, he's really resilient. I thought I had it bad, but I guess I shouldn't complain." Maybe not, but I think it's better than labeling myself early and never giving them a chance to see that I'm just as if not more effective than I would be had I not been diagnosed with MS. I've been handed this disease - I didn't get a say in the matter, so I'm going to try hard to turn it into something positive. You can give up if you want, but you still have a long life ahead of you - you might as well do what you can to improve the quality of that life!
My point? hmmm... what was my point... oh yeah - If you're worried about what everyone else is thinking, why give them more ammunition/fodder? DON'T LABEL YOURSELF! If your worried or upset or frustrated that people look at you different - GET OFF IT! That attitude perpetuates the cycle. What's the difference between them looking funny at you and you responding in the same immature fashion? Be the bigger person - but don't wish that they'd sympathize, or empathize, or feel sorry for you. It's human nature not to know how to react when someone looks or acts different than average.
How do you act when you see a burn victim in line behind you? How about when someone has a limb that is much shorter than another? Don't give me the idealistic, post disability answer that you want to hear or that you think is PC - be honest with yourself. How were you raised to react? I know what I teach/have taught my kids... DON'T STARE! Apparently this offends some - Well, GET OVER IT! Sure, we'd feel better if they'd just come out and ask, but people don't think that way before they have first hand experience. Or, maybe I'm the only one who thinks that way and am a bad person...
The message here, whether you want to hear it or not, is not to label yourself. I'm sure some of you will construe this into "you should hide your disability and be ashamed of it." If you are that much in denial, more power to ya - I hope that's working for you. My point is that you already know that people don't know how to react, so why set them and yourself up for failure? As I get further down the page, I come up with new points... DON'T BE SO INSECURE! If you are visibly disabled, just enjoy yourself and stop obsessing about how others react to you. I don't know - have fun with it... tell them your drunk or that you got into a fight with a rival gang member, or that you OD'd on paint fumes. Like I tell my kids: do you really want to be friends with a person like that, anyway?
I AGREE! I called you a newbie, does that mean I am bitter? If you think I am bitter, please tell me why. If it is NOT me, tell me what bloggers have done that is bitter? I'm very interested in this. I DO take issue when newbies act all scared about ever having to use a cane or wheel chair, like it is the end of the world. And the constand search for a drug to "make it stop!' NEWS FLASH--THere isn't one. MS rolls on.
ReplyDeleteBelieve me - it's not you. I'm referring to the blogs I read where people talk about how awful their life is and how nobody understands what we're going through. Are you (they) really going to let that ruin their day? I'm not going to call anybody out - I'm sure they know who they are...
ReplyDeleteI don't think you're bitter - I like you and like the way you call me out. I need that - keeps me relatively honest. I'm the type of person that likes to make sure my feet are on the ground...
Thanks and keep 'em coming, Diane!
Johnny, we seem to have a lot in common. I used to think that I was superman and could do everything. Actually, I still think that, but am OK with doing it slower and in my own way. My nemesis is not MS, but Parkinson's disease. It also has been prostate cancer and nine surgeries from a motorcycle accident when I was younger.
ReplyDeleteI dedicate myself now to helping others realize that they can overcome obstacles in their lives and enjoy themselves despite whatever situation they are in.
Thank you for spreading the word that we have a choice to control our situations instead of letting our situations control us. Randy Pausch said it best, "We can't change the cards we are dealt, just how we play the hand."
Be well and keep smiling.
Great Blog, just joined today, even though you & my husband have different diseases ( he has bulbar onset ALS ) I can relate to your struggles & especially with the speech, he sounds like he has had 10 shots of whiskey straight up, it really bothers him & other days he is very excepting.
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