The last few days have been very tough for me for lots of reasons, but mainly because I’ve had some pretty big realizations about my life and my condition. For those of you that are new to this blog, I have stage 4 melanoma with mets in my brain, bones, and lymph nodes. Anyway, I had a complete mental breakdown the other day because my parents’ dog chewed on a toy I had gotten for Evan. Yes, mental breakdown complete with ugly crying just because Ryder from Paw Patrol got a little dog slobber on him. I. Freaked. I felt bad for my family who clearly felt awkward in the situation but I just couldn’t help myself. So I sobbed, “I just need to be alone.” But everywhere I went there was someone there. So I had a small (small??) panic attack and ran outside crying hysterically.
Then it hit me, I haven’t been alone for over a month. I have not been in a place without other people for weeks and it was really starting to wear on me. Now, I’m someone who likes to be with people. I’m pretty social and enjoy company. But I realized in that moment how much I missed just being able to go and do what I want when I want without people to answer to. I know it probably sounds like a silly thing to complain about, but it hit me pretty hard that that’s what’s been bothering me. It’s pretty exhausting to have people around all the time. Like, all the time. I still can’t be alone until my next MRI tells us what my brain tumor is up to. And trust me, I understand, I sure wouldn’t want to put the kids in a situation where I’m the only one here and suddenly go into seizures. Not cool. And I do enjoy hanging out with friends and having family over, I guess it’s just kinda hard to explain.
Obviously, I’m grateful for the abundant help and support we have. This post isn’t to make anyone feel like they should be doing any less, or more, or anything differently at all. I know that I’m not the only person affected by all of this and that it’s quite a burden for a lot of people to bear. But these people who may also be having a hard time with all this can go home, and when no one else is around, just cry. Or they can put on “Timber” (or some other horrible pop song) and sing and dance like an idiot without others there, or they can go in the shower and pretend to be Natalie Grant at the top of their lungs til they’re blue in the face. They can let it all out without someone right there feeling like they need to fix it. But this, of course, cannot be “fixed”. We all just have to deal with each hurdle as it comes up.
This isn’t about being resentful of the help we are getting, I cannot stress that enough, it’s about me not coping well with the loss of my independence, my freedom, and my privacy. It’s much harder than you’d think. And those are three things that I would not have thought before would bother me to “lose”. I’m not a private person to begin with, thus, the blogging. But it’s still somehow hard for me now to always be sharing with everyone my plans for every single day. I understand that I must because these amazing people are watching my children and taking me where I need to go and doing our laundry and grocery shopping, it’s just a huge difference from before. I need to learn to adjust and figure out a system that works for everyone in all this.
Add onto all that the guilt of being a burden. It’s burdensome being a burden!! I know people love us and don’t really mind, but that doesn’t take away the guilt. I’m hoping I’m not stepping on anyone’s toes here, but I feel like my goal in writing this blog is to keep this experience as real as possible. So here it is.
Every day I feel more tired and less mentally and physically capable. Not to sound overly dramatic, but there’s a sense of feeling myself slipping away. Like you’re watching yourself go and you can’t get it back. I want so badly to be able to do the things I did before, to work, to drive, to play with my children, to make plans or an appointment without first making sure I have someone to babysit and someone to drive me.
A typical afternoon for me now looks like this:
I think the hardest part overall, and the hardest revelation for me, is the knowledge that this is how it’s going to be. It’s not temporary, at least not on my end. This is life now. But I can’t stress enough how grateful we are to have friends and family constantly being amazing and helping us, with transportation, childcare, housework, bringing us meals, everything. I am truly sad for the people that don’t have this kind of support group. So please, don’t think I’m pointing any fingers at the people helping us, because that’s not my intent. It’s just a huge adjustment to go from living the normal life of a wife and mother, being someone who cares for others, to being someone who needs caregivers, and transportation, and near constant help. I will get used to it and everything will be fine, I just gotta adjust. It’s all about perspective, right?
As much as I could focus on the bad (there’s plenty), I want to focus on the good. Because we have so many people who love us. And I’m just so grateful for my amazing husband who is my everything. I can’t even explain how much I love and respect this man:
And here’s a random shot that my awesome mom got earlier of me trying to get a pic of how the dog, Buck, was “hugging” my arm and Brit was saying “Cheese!” Haha, I thought it was funny…
Again, I reiterate, the problem is not other people or anything they are or aren’t doing, it’s my reaction to my circumstances and my poor coping skills at this point. “I can handle this! Handle is my middle name! Actually, it’s the middle part of my first name…” -Chandler Bing (: