We are fortunate, though, because, unlike them, we will never have to experience the disease that attempts to devour the human body in its relentless manner. We're fortunate because we've been given the gift of knowing. Without that gift, some of us would be thrown into the fight. Some would lose and some would win. But, we're lucky because we do know this information and because of that we get to help ourselves out to prevent having to go through what our loved ones had to. There's no other way to say it. We who know we're BRCA Positive were given a gift; a gift I am grateful for each and everyday.
Although I am grateful for this gift, I find myself wanting to distance from this group of people who refer to themselves as 'previvors'.
I find it hard to find anything beneficial for me pertaining to this group. For them, they are able to become a support system, but at the same time, they are a support system believing the same exact things. When I initially wrote an entry concerning the way I felt about the term previvor, I got attacked. That doesn't matter to me, though. We are all entitled to our opinions. Yes, my opinion doesn't go with the "norm", but what the hell is normal anyways. Normal can't be defined so I dare you to try. If normal is being exactly like everybody else then no thank you. I'll pass because I dare to be different, weird and even quirky. At least all stand out and leave something for people to remember me by. Trust me, I'm the bitch who wrote the "mean post bashing previvors" to some, but to others they know who I am and what I stand for. The important thing is that they remember.
I find it hard to find anything beneficial for me pertaining to this group. For them, they are able to become a support system, but at the same time, they are a support system believing the same exact things. When I initially wrote an entry concerning the way I felt about the term previvor, I got attacked. That doesn't matter to me, though. We are all entitled to our opinions. Yes, my opinion doesn't go with the "norm", but what the hell is normal anyways. Normal can't be defined so I dare you to try. If normal is being exactly like everybody else then no thank you. I'll pass because I dare to be different, weird and even quirky. At least all stand out and leave something for people to remember me by. Trust me, I'm the bitch who wrote the "mean post bashing previvors" to some, but to others they know who I am and what I stand for. The important thing is that they remember.
So why? Why do you need a day to recognize this genetic mutation? What is your birthday not enough? Does there really need to be another day for you to stand out? That's exactly what it is, though. People feel like they need to be important and I'm guessing this is their way of accomplishing that. It's ironic, though, that still so few know about this mutation, but we already have a holiday for it. Doesn't that seem completely backwards? You say the word cancer to somebody and they instantly know what that means. You say independence day and people know it's the 4th of July. You say Christmas and again people know what you're talking about, but previvor day? What is that? Very FEW people know. So before you get ahead of yourselves and glorify something why don't you focus on what's important? Spreading the word seems pretty damn important to me. As someone who is BRCA Positive, I want to help those who may not know much about this genetic mutation because the truth is, if I can educate them I can help them. I feel that spreading the word and giving people information about what BRCA means is far more important than getting the government to declare a day to be named after BRCA Positive people. There are certain things called priorities and declaring a holiday should have been crossed off the list.
I've already expressed that I feel 'previvors' come nowhere near comparing to survivors. There's one word for my reasoning: CONTROL. Those who have a diagnosis can't chose to PREVENT. They can only TRY to get healthy. BRCA Positive people have the choice to STAY healthy. It's a simple difference. A FORTUNATE difference. Emotional, yes, but not mortal. We should be thankful for those who had to suffer for us. Without them we wouldn't have been able to discover this genetic mutation.
Like I said before, I have no problem standing out from the rest. I have no problem being the voice for those who have differing opinions. It's not easy to be different especially when you feel vulnerable. I don't mind, though. I will tell you when I don't agree with something. What I don't agree with if 'previvor day' because it is a day that was established because some people feel it is more important to be glorified and to demean those loved ones who had to battle for their lives than to focus on what's most important. It's ironic that this holiday was established before the world was educated. It's ironic this day was established before each BRCA Positive woman was taken care of completely, so they could have their testing done, by their insurance companies. It's too ironic for me and I won't stand for it.
Feel free to leave your comments, opinions and thoughts and even bash me for this if you want. I'm not stopping you and am open to what you think.
I think you wanted a fight when you posted this. I think that's sad. I'm sort of angry at myself for wasting my time here. I just don't think you get it. That's the problem. You were not
ReplyDeleteattacked last time - you angered and hurt a lot of people, who tried in vain to explain their side of the story to you, and you stood there, arms crossed and refused to listen. You hurled insults at people who questioned your choice of words, and now act as if you are treated like a victim for thinking differently as you write your blog entry very full, and proud while you stand bravely on the top of your 'different and quirky' hill. For what? Have you read the legislation behind HBOC Week and Previvor Day? It's all about spreading awareness! It's BECAUSE so many people out there don't know what hereditary cancer is all about - not JUST everyday people, but nurses, doctors.. people taking care of us. At what point do you think your fellow mutated sister is allowed to advocate for the cause? At what point is she allowed to seek support from others? How many of us do you think should suffer through the emotional and physical pain of mastectomy's and instant menopause? Have you had surgery yet?
There is just too much going on in life for stuff like this - too many people to support, too many people who are scared to death and need someone there for them... life is short, shorter even for people like us. How can you have that opening paragraph in the header of your blog, if you are going to stand there and cast stones at an entire sisterhood that YOU belong to? This is no different than last time, I assume you thought the stat spike was fun, so you'd try again. Well, whatever, enjoy taunting and hurting those who find comfort in a WORD. I wish you the best.
Teri
Teri,
ReplyDeleteYou choose to belong to that sisterhood, but I choose to not be a part of it. Especially when I am entitled to my feelings and I am entitled to posting them on MY blog page. If you don't agree with that then don't waste your time posting on my page or reading my post. Like I said before, I never asked you to read this. I am not looking to increase my stats, but rather to express my feelings and thoughts just the way you do. And you've made it quite clear that you can't accept that there are other people out there who carry this mutation and don't feel exactly the way you do. I don't understand how you can try to advocate for a group that you don't completely know about. And it's not that you don't try to get to know all sides, it's that you don't want to. If they don't agree with you and your "BRCA Sisterhood" then they are wrong and you are the first one leading them to criticize me for opposite thoughts or feelings. Holidays mark milestones and accomplishments. Creating a day called previvor day is not marking anything of the kind. How will this raise awareness when people have no idea what it even means. And if they don't know what it means then common sense says they don't know a thing about it, so to them this isn't even existent. As far as our doctors are concerned, creating a holiday isn't going to give them the information they need. Research and time will, but a holiday certainly won't by any means. If you can't understand that, that's fine, but from my perspective it's just common sense. People must know about it before they'll ever recognize and put any meaning to it.