I am overwhelmed by the outpouring of messages and responses I’ve received after writing this story. I have read, and continue to read, every Facebook comment, text, and email that came pouring in last week, many from friends from all corners of my life, and many from people I’ve never met. Some people offered sympathy, some shared their own scary stories, some asked questions and offered advice. Thank you, all!
Yes, I’m still waiting it out. I have no new information since I wrote Part Two. I will have future MRIs, and future visits with neurologists to test for MS. I still have the blurry spots in my vision, but they really only bother me when I move around a lot, get hot, take a hot shower, or when I’m under fluorescent lights. Optic neuritis can take up to 6-12 months to heal, and in some cases the vision problems never go away. Time will tell.
Though moments of fear bubble up here and there, I am feeling much more positive now. I’m simply not going back into that very bad place where I was so afraid, so I’m choosing to believe I’m getting better. And in turn, I’m feeling better.
While I used to be a person who exercised (bike, run, swim, or lift) 5 times a week, since mid July when this all started, I have done nothing. I was too tired and worried, my head hurt, and my vision bothered me too much. Two weeks ago, I ran one mile, and it was hard! This past week, I ran two miles TWICE and have gone to the pool before work TWICE. Small miracles.
I am so grateful. I can’t believe the life I get to have. I get to live on a lake in beautiful Maine and now I’m free to make plans for nights out, trips to warm places, and races I want to run. Everything I thought I appreciated before has even more sparkle now; even the most mundane moments in the kitchen with my family feel like scenes from a movie.
I’ve been replaying many of the moments from the last 3 months, and I’m noticing a different feel now that I’m at a safe distance from the pain.
The people around me.
Within 15 minutes of receiving the brain tumor call from my doctor, my mom said to me: “I wish I could take this from you. This should be me and not you.” I had zero doubt that she meant it, too. My mom is a cancer survivor herself, and we watched as cancer swiftly took my dad away. And still my mom was front and center, sweating out every MRI result and doctor’s appointment right with me. I don’t think she slept through the night once in those 67 days. Such is a mother’s love.
I talked on the phone to my brother and sister much more frequently than I usually do. I got sweet and funny cards in the mail. My English colleagues sent me to the spa. I got flowers from several friends. My friend Sarah sent me magical unicorn/rainbow socks. I got daily texts from dozens of friends and family members.
I always say that my husband Tim is a highly evolved human. By that I mean that he doesn’t overreact, he is calm in a crisis, he delays judgment, sees the good in all situations until he receives information to believe otherwise. Sometimes I’d know that I needed to cry from the weight of carrying all of this, and Tim would sense this and help me finish dinner or get the kids to bed, wait until we had a quiet moment, and sit next to me. I’d say something like: “I can’t do this anymore,” and complain about being scared or how I just needed to know what it was I was fighting. He always listened, and then he’d say something like, “I know. This totally sucks. I can only imagine how exhausted you feel.”
He never told me not to worry, or how not to feel. He never made me feel like I was doing this wrong. He never pretended to know the answers. But he always ended our conversations firmly: “We can do this” or “We’ve got this.” I was so comforted by his confidence. Somedays I felt as though he was reading from a script I had unconsciously provided, as if I could think: this is what I need you to say to me, and he would say it.
Reed and Skyler, ages 9 and 12, have been little pieces of gold. We did a pretty good job downplaying the situation to keep them from worrying. They had important things to do, like start middle school, play football, jump in the lake, play with their friends. But they told me in their own ways that they were thinking about my health a lot too.
One night I was lying in bed with Reed. We were in the middle of a story when he stopped me and said: “Mom! Your glasses have a smudge on them!” He took them off my face and ran to the bathroom to wash them. He was so bummed when he realized my vision was blurry even after he cleaned the smudge. He also told me a few times that the night we got the brain tumor call from the doctor was the “worst night of his life” and that he wished it was “all a bad dream.” Reed is a hugger and a cuddler anyway, but he has been extra clingy since August 2nd.
Skyler showed her concern by freaking out every time I stepped outside to take a phone call. “What, Mama? Is it your doctor?” Other times she’d ask me questions out of the blue: “What was it like for you when your dad died?” “What do you think you’d do for work if you went blind?” And one day she came into my room very seriously and sat down on the edge of my bed holding my lap top. “Mom, why were you googling ‘foods that fight cancer?'”
The kids knew I was having another “picture of my brain” taken that Friday, but I had told them we likely wouldn’t get any clear answers yet. When I told them the good news that afternoon, I could see the relief spread over them.
We sat on our swing at the edge of the lake and I told them honestly how scared I had been, apologized if I had asked them to be quiet because I had a headache too many times. The three of us sat there and cried together, looking across the lake at trees bursting with reds, oranges and yellows. “We are so very lucky to have this life together,” I said. We sat in silence for a long time and then Skyler said “I’m just so sorry you’ve had to be so scared for so long.” I assured her it was all going to be okay now, that I wasn’t scared anymore. We looked out at the water and squeezed our hands together. A few minute later, Reed said: “Mom?” I said “Yeah, bud?” And he said “What’s for dinner?” And I laughed and cried and laughed some more.
Is this Brave?
So many of you commented that I was being brave or courageous in how I was dealing with this scare. BUT I’M NOT! I was trying to express in my writing that I was scared out of my mind, and that I didn’t stay positive, that I let worry make me feel crazy and paralyzed.
In my imagination, I had a brain tumor that was taking over my head. I dreamt about lava-lamp looking substance inside of me spreading and expanding. The fact that I developed an increasingly bad headache about a month after my first MRI that was unresponsive to pain meds was more evidence that I was indeed dying.
Is this brave? I think maybe what is brave is when we, in the face of anxiety and pain, show up for our lives even when we want to stay in bed and cry. The whole “I can’t do this but I’m doing it anyway” approach to life. That is probably brave, yes, but what is the alternative?
Most of you, though, seemed to think the brave part was writing about it, showing myself stripped bare like that. I have thought about this a lot. I had not spoken any of my darkest fears out loud to anyone before I wrote them. I know my loved ones were thinking the same thoughts during those two months, all the “What if she dies?” scenarios. I know every parent has had these thoughts; mine were just more urgent because I’d been told I had a deadly brain tumor, and then told “well, maybe not.” Dying while your kids are young is every parents’ worst fear. And I guess it was cathartic to get it all out of me by writing about it. Is that brave?
I am not a private person, and I don’t hesitate to write about personal things. The writers I am most drawn to myself are women who strip it down and show themselves being real and vulnerable: Anne Lamott, Ann Patchett, Elizabeth Gilbert, Glennon Doyle Melton. Life is hard and shitty and beautiful and messy, and let’s please tell our stories honestly so we can connect and understand. So yes, I was scared, and at times it got ugly, but at the very core of my fear is a mother’s love that so intense it could light a match. In part, I told that story because I was struck so many times by how much of my will to keep living was fueled by my need to be here for my kids.
Thoughts on prayer
Though I struggle to define prayer for myself, hearing someone say: “I’m praying for you” was incredibly comforting to me. Whatever that means for the one doing the praying, I’ll take it.
I don’t believe prayer can stop a brain tumor. If that were the case no one would die of cancer or any other disease. I don’t believe any one person can affect the course of a disease through prayer, but I do believe we can begin to heal ourselves with positivity, love, and attention on the right thoughts. When I pray, it is for a bigger, more open, more awake life.
When I found myself at my worst moments during the waiting period, the only single thing that gave me peace was to adopt an attitude of surrender. I would think: I give myself up to you, universe, because I clearly cannot think my way out of this. Nothing I say, feel, or do is going to change whether what is growing inside my head is a fatal brain tumor. Whatever it is, it already is.
I had to give myself up to something greater than me, to trust that whichever direction this went, I would be taken care of. Is this what it means to have faith? Because I never felt sure that I wouldn’t die, but I did find some magical moments when I truly believed that I would be okay, in life or death. I actually had moments of clarity that my kids and Tim and my family would be okay without me. These were fleeting moments, but amazing ones, and they didn’t feel like defeat, just surrender.