May 14, 2019 was the day my life stopped. It crept in and stole the person I was. It picked me up, ripped my body into pieces, and rearranged me in ways I still struggle to figure out.
My story is probably the same one you’ve heard countless times. An unspectacular day that turns into a nightmare… so I won’t bore you with too many details.
Until that evening the most exciting thing to happen that day was a haircut. My husband and I were eating dinner and laughing about something or other, and suddenly my entire left side began to tingle. It started in my fingertips and traveled up my arm, down my side and leg, then up my face and to the top of my scalp. I went to the ER fearing I’d had some sort of mini-stroke, but fully expected them to tell me I was fine. However, a CT scan showed a mass in the right side of my brain. I was transferred to Memorial Herman Hospital for further tests.
Long story short, it was a tumor. A week later, May 21st, I underwent a 7-8 hour awake craniotomy to remove as much of the tumor as they safely could.
I naively thought that was the hard part.
There’s a reason people say ignorance is bliss. In a time where we can look up any bit of information by simply pulling out a phone, I’m thankful I didn’t give into that urge. First of all every journey is different, so whatever I would have read might or might not have been my experience anyway.
But most importantly it allowed me to maintain this idea of who I was. This person who wouldn’t allow herself to be taken down by anything. This person who took her time and cried when needed, then wiped her face and got the fuck on with her life. That person had always served me well. From family issues to the hardships marriage can bring, even through the loss of our first baby who we’d wanted so very badly.
“That person” helped me move forward and choose the most aggressive treatment when two weeks later it was confirmed the mass was in fact a form of brain cancer. “That person” helped me get out and walk so I could get rid of the walker that, at 34 years old, I was so frustrated to need. And “that person” helped me make jokes about my ridiculously swollen face from the surgery, poke fun at my ugly incision, and even laugh at the way my kids reacted when they saw me for the first time. Crying and scared because they could barely recognize me.
The one problem with “that person” is she only exists when I have a modicum of physical strength. Because when that strength was gone, “that person” left as well. And then the emptiness set in.
My experience being sick was one of shame. I was ashamed to be in a position where I couldn’t take care of myself. Ashamed of needing so much help. Ashamed of people knowing what was going on. Ashamed of being 34 years old and my husband having to help me take a shower, to help me get into bed, and all too often to have to feed me because I didn’t have the energy to grab the fork, much less lift it. And all the progress I’d made when I was “that person” was gone. I needed the walker again because the radiation messed with my balance. And now instead of having to use the walker only when I was really tired, I had to use it full time. Halfway through radiation my hair began to fall out. I knew it was a possibility, but I still wasn’t prepared that first time I washed my hair and pulled out clumps of it. So just like that, I was back to looking sick. Walking around with these big signs with flashing arrows letting everyone know I wasn’t okay.
But it’s in those moments you see what people are really made of, yourself most importantly.
Through it all, I’ve learned that people can surprise you in the most beautiful ways. They can remind you you’re still alive and show you that not only can they can handle you at your worst, but they will gladly rise to that occasion. They bring food or groceries, watch your kids, or simply come visit and check on you. Take you to your radiation and physical therapy appointments. Send chocolate and fruit arrangements, cards, gift cards. Ultimately there’s no right or wrong thing to do. These are just examples of things done by the people in my life, some of whom I’ve never even met in person. Just those willing to be kind and show up even though I had nothing to offer in return.
I’ve been reminded that I have people in my life who I’m okay with falling apart in front of. The ones who held me as I cried. Who helped me walk when I was out of breath after treatment. The one who held my hand while I cried as the woman behind me shaved my hair. Both devastated and relieved because it was the one thing in my life I could control and do on my terms.
I’ve been reminded that people can disappoint you so deeply. See behind the curtain and tuck and run. I don’t know if that hurt will ever fully go away, but that’s okay. Everyone is different, and not everyone is made of the same stuff. Or maybe I’m just not as important to them as they are to me. And honestly that’s okay, too.
At my lowest point, my Sunday school teacher taught me how to be bold. I promise I’ll do my best to make you proud. To be bold in my faith. Bold in the way I love others. I’ll always owe a great debt to you because in that moment, I was so beyond lost. So if you ever read this, from the bottom of my heart, thank you.
Most importantly it reminded me how lucky I am to have my family. My parents and siblings showed me so much love during that time. When I had nothing left they picked up the pieces. My husband. *sigh* My husband… Billy, I love you more than anything in this world. It hasn’t always been easy, and I haven’t always been the wife you deserve. I’m sorry for that. I love you. I thank you. I love that I’ll be spending the rest of my life with you.
I don’t know what these next few months have in store for me emotionally. Probably like all the rest of this journey. Highs of feeling so very grateful. In those moments I’ll laugh at the time my mom left my walker in the driveway of my house and naturally we didn’t realize it until we’d gotten to the hospital. We really needed a laugh that day and the security footage of the walker in the driveway definitely provided it.
And then the lows will come and I’ll think about how I’m not ready to leave yet and how my girls, especially my 8 year old, saw way too much. I think that’s my biggest regret. On those days I’ll be filled with emptiness. But I’ve learned I can’t expect or predict anything, and that’s okay.
So for now I’ll just plan on slipping into my human costume every morning to disguise the scarecrow, and enjoy a good glass (or 20 glasses) of wine. Lucky for me, we stocked up on the good shit.