you are not alone in this

Most of the time, I feel like I’m not doing enough. It’s not enough that I’m (mostly) kicking ass at work, or that I’m maintaining a functional, healthy (if currently long-distance) relationship, or that I’m there when I’m needed. I still know, every single day, that I have potential I’m not reaching.

I’ve always known. I’ve had people (only a few, but people all the same) comment on it, telling me they saw it too. And yet I still continue with this day-to-day minutiae, working and watching TV and sometimes being hit in full force with the idea that I could be doing so much more.

Most of the time, lately, it’s centered around BRCA. It’s not something I’ve written much about lately – and lord knows the days of crying all evening and wanting to die have, somehow, faded into the past – but it still lingers at the back of my mind. Sometimes, unexpectedly, I’ll be hit with the truth: any time, any day, any minute, I could be diagnosed with cancer. I could find a lump. I could receive abnormal results on a mammogram or MRI. My (somewhat surprising) decision to hold off on surgery for awhile and stick with increased surveillance means that every day I’m at risk.

And somehow, I feel that having made that “decision” (which I put in quotation marks because I don’t look at it as a decision. It’s a temporary fix until I move forward with my real decision, surgery) is akin to doing nothing. Who am I to empathize with others, to offer counsel, to do much of anything when I’m choosing to, essentially, look the other way and do nothing?

I know it’s not that simple. I know that a bilateral mastectomy at twenty-five isn’t something I should do, per se (and did you know that there are those who believe “should” is the most evil word in the English language? Sometimes I really, really agree). It’s a choice many BRCA+ women make, yes, but it doesn’t have to be. It’s not what was recommended to me by my breast and ovarian cancer prevention team. It’s not something I’m ready to do.

But where does that leave me? I have no story to tell yet. I have no real help to offer, other than advice on how to handle those first initial weeks of shock and devastation and grief (because that’s what it is – grief for a part of your life that is forever changed, grief for the fact that your whole life is forever changed). I can offer hope to women wondering if they’ll find a partner who can accept them and love them even with such a heavy burden resting on them.

But the rest of it? The real strength and courage and forward-moving? I can’t. I’m not there. I see so many other women out there doing so many things: starring in documentaries about their story; writing books chronicling everything they’ve been through; starting foundations to reach out to other women in similar positions; hell, even writing blogs that people actually read. And meanwhile, I’m just going about my life, not changing much of anything – let alone doing anything to change the lives of others.

I’m meant to do more, and there is a part of me that knows without a doubt that somehow this BRCA-ness will play a part in that. I don’t (usually) believe everything happens for a reason, but sometimes I wonder.

I’m meant to do much, much more, and to have much, much more of an impact. I know that I can, I just don’t know how or where to start. I need to stop being down on myself for doing nothing, and start figuring it out.

4 thoughts on “you are not alone in this

  1. Krys, like I said, I just came upon your blog by chance. I read one of your posts and then tried to go through more stuff. About this post, I have 1 thing to say, you may FEEL you don’t know where to start, but you HAVE already started your journey as a helper! You have helped me.

    I don’t know why you tested yourself for BRCA2 mutation. But here’s my story. My mother had Alzheimer’s Disease. Early Onset. She got it at 42 and died at 49. Her brother has it now. Also, EOAD. And there’s a chance their mom and her sisters had it too. I have often struggled with whether or not to get tested. I have often wondered what I will feel once I get the result and what I will do if it is positive.

    Reading your post made me realise that I don’t want to get tested. I want to take life as it comes and live each day to the fullest. Even if AD does come, I will be prepared for it. I am starting a voluntary group for families who have mentally ill patients.

    One thing I know about testing is – it gives you a probability. It isn’t a sure shot guarantee that you will get the illness. You could share your experience with those who are contemplating testing! Think about it šŸ™‚

    I love your blog, btw. And I’d like a lot of people to read it too.

    • I’m glad you found my blog! I’m going to follow yours as well. šŸ™‚

      I completely understand your desire not to get tested – in fact, this comment is something I’m going to write a post about, because a lot of people in my life have questioned my getting tested, and I’ve also had times where I wished I’d just stayed in the dark about the whole thing. It’s interesting to think about, really.

      Keep in touch! šŸ™‚

  2. Hey Krys,

    Waiting for your post on the decision about testing. It would be interesting for me to know why you decided to get tested and how it’s helping (or not). A part of my voluntary work is going to be to help people like me to understand how genetic testing works and how they can use the information (if they get tested) to make important decisions like biologically producing children or adopting, etc.

    And I am so glad you visited my blog. Will of course be in touch.


  3. I am so thankful every day that my family doesn’t have any known genetic diseases. Both my grandmother’s had cancer, and there is some typical heart disease and diabetes (though neither are obesity-related). But I’ve been told that I’m not at any high risk if I take care of myself. I hope that doesn’t change. I can’t imagine what you go through.

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