Over the past few years, I've started a lot of my blog posts (and Facebook status updates ... and updates on basically every social media platform) with apologies for my long, unexplained absences.
I always have a solid explanation for why I've been missing in action.
Life has been busy ...
I've been sick ...
I didn't have access to the internet ...
Things were just a crazy, mixed-up muddle of a mess ...
While these excuses have been 100% true, they don't tell the full story. And I feel like I need to tell the whole story. I've started this blog post dozens of times over the past couple of years, and I've never finished. But I promised myself that I would do it this time, so I've been sitting at my desk for nearly 36 hours, typing and deleting and typing things over again, until I can get it right ...
You know about my brain tumor. You may have even read the long, multi-part story about it. And all of the follow-up stories about how dealing with a brain tumor can be difficult & scary sometimes.Yet I know how scary the phrase "brain tumor" can be, and I don't want to worry people that I care about, so I've adopted a habit of downplaying things maybe a bit more than I should.
But I'm tired. And I'm scared. And this is a super-heavy burden to carry on my own, so I'm just going to lay it all out right here and hope that the load won't be quite so heavy when I have to pick it up again ...
Here are the things you need to know about me:
1. Because my brain tumor is in the brain stem, it literally messes with every single signal that travels from my brain to the rest of my body. Every single one. So if my elbow hurts, the injury is almost never actually on my elbow. And I have to go over my entire body to find the bruised shin or stubbed toe that's causing my elbow to hurt. And even the smallest emotional stress translates into super-intense physical pain.
2. Remember when you were really little and your mom told you "Don't make faces, or your face might freeze that way!" and you laughed at the silliness of the sentiment? ... Yeah, I have to be very careful about how wide I open my mouth when I yawn or something. Because, yep. My face might freeze that way. (I've totally stopped eating grapes, because if I accidentally eat a sour grape and my mouth puckers involuntarily, it might stay that way for an hour or two. And it hurts. A lot.)
3. Because my brain has to constantly adjust to the chaos of mixed/misinterpreted signals, it auto-corrects just about EVERYTHING.
This can be a good thing. For example, I've never experienced jet lag,
because as soon as I look at a clock in the new time zone, my brain
adjusts to the new time. But it can also be a weird thing. For example, I
have a really hard time hearing accents, though my family swears I pick
up every accent I hear. (The kids love to entertain their friends by
talking to me in different accents to show how my replies will match
whatever accent they're adopting - including totally made-up accents.)
4. Optimism isn't optional for me. My brain doesn't know how to
process fighting or negativity. I feel every harsh word as an intense,
physical pain. Like hot skewers rammed through my body kind of pain. And if I get around people who are fighting, complaining,
or yelling, my body literally shuts down. As in collapsed on the floor, still fully conscious but unable to move, speak, or even breathe properly. (When my kids were toddlers,
they totally took advantage of this fact, because they realized that, if
mommy told them "no," and they wanted to do it anyway, they just had to
scream until mommy was paralyzed on the floor and couldn't stop them
from doing it.) And it doesn't matter if people are fighting or yelling at me. Any fighting that happens where I can witness it is enough to literally paralyze me.
5. I'm totally not kidding about the brain auto-correcting thing. A few months ago, at my middle daughter's choir concert, I suddenly had a brilliant epiphany that could potentially solve all of the world's problems: "You know how, when everyone wears the same uniform, all of their physical characteristics blend together and you can't tell the difference between height, skin tone, or body shape anymore? We could all just wear uniforms every day!!" My oldest daughter and my husband laughed for about a week at that one. "That's not a real thing!" ... Which is how I discovered, at almost 40 years old, that my insistence that we could fix the world if we'd just stop looking for reasons to divide ourselves was truly insensitive and hurtful to those facing attacks on a daily basis. And my heart is absolutely breaking over this realization. (p.s. Now that I've realized I have this processing issue that totally isn't a normal way to view the world, I feel like I need to apologize to any that I might have inadvertently offended. If I ever made you feel like I wasn't taking your struggles seriously enough ... If my genuine inability to see the divisions our society faces has caused you pain ... I apologize from the bottom of my heart. I've learned that I need to more frequently check my perceptions against what's "normal," and hopefully I'm getting better. But if I've hurt you, please don't hesitate to say something to me!)
Over the past too-many-months, I have witnessed attacks against people who are Muslim, Black, Hispanic, Jewish, Women, Transgender, Mormon, LGBT, Refugees, Disabled, Athletes, Native American (I could go on and on) ... And although I don't personally identify with most of those categories, I am amazingly blessed to have wonderful people in my life who fit each of these labels. And so many other labels that ultimately don't matter at all. Human is human, and no matter how you slice it, we're all part of the same family. And my wonderful, annoying brain tumor won't allow me to separate myself from "the other," even if I wanted to. So every single time I hear someone I love and respect lobbing attacks at "those people" - no matter which group of people they're hurling hatred at, and no matter how far removed from my personal experience that particular group may be - it hurts. A lot.
And I wanted to speak up. I wanted to stand tall and raise my voice and use my strength and my privilege to be a protector for my friends and acquaintances who genuinely feared for their safety and the safety of their families. Instead, because of my stupid brain tumor, I spent too many days paralyzed, unable to get out of bed, unable to function, because the negativity was just too strong.
I literally couldn't speak up. I couldn't move. I couldn't act. I couldn't even breathe. I've cancelled plans with friends and neglected important household tasks because I literally couldn't function properly. And I've spent more nights than I care to count staring at the ceiling, wondering if this night might be my last. (Because when breathing isn't an automatic response ... when you have to consciously remind your lungs to expand and contract to bring in the necessary oxygen ... falling asleep and letting that conscious effort lapse is frankly terrifying. I never know if I'll actually wake up again.)
And I've felt so guilty that I wasn't being more proactive in supporting those who needed my support. So over and over again (dozens ... maybe even hundreds of times), I've started writing this blog post to explain. To assure you that I'm here. I'm watching. I'm praying for you. And I'm doing what I can - even if all I can do is send virtual hugs and lots of real love. But as much as I feel the need to explain myself, I also don't want to be that girl who just makes excuses for her lack of action. And I don't want to play that "me first" card, making the genuine pain and fear that so many are facing all about how those attacks and threats to others hurt me too. Because while it's true that an atmosphere of hate hurts every single member of our human family, it's not okay for me to put my own comfort and safety above those friends and family members who have been targeted.
So I hope this post serves as an explanation, and not an excuse. I hope you know that I'm here for you, even if I can't always carry your burdens as well as I'd like to. I'm praying for you, even if I can't speak. And I'm thinking of you always.
With that said ... I hope you'll understand if I shift the focus of my blog and my social media presence for the time being. I need to go back to actively looking for the things to be grateful for, even if it looks like I'm focusing on superficial things instead of the deeper issues facing our world today. So I will tweet about books that I love and books that I'm excited to read. I will search your twitter feeds for reasons to celebrate your milestones and send ample hugs and love. I will post recipes inspired by my amazing friends and tell the stories of how those recipes came to be. In a world that's often too weighed down by criticism and hate, I will focus on all the little ways I can share love.
I love you all!