At Least It’s Not Cancer

by Jennie Carr about a year ago in advice

When You Feel People Are Devaluing the Significance of Your Illness

At Least It’s Not Cancer

I still remember the feeling. It's a punch-you-in-the-stomach, going-to-spew-my-breakfast feeling. Well, it's a lot more than that and something that is hard to describe. You are living your life, and then—BAM!—everything changes. You are no longer invincible. You are now a sick person.

“We have the results of your MRI, and it’s not good. We found blood on your brain.” Time stops. What? How did this happen? This is actually the perfect time to say, “is this real life?” But it’s not a joke.

Seriously, is this real life? It feels like a movie. I burst into tears, and the nurse ran over to me and held me while I sobbed in her arms. I finally caught my breath and asked what this meant. The neurologist said, “Best case scenario is that you had a stroke.” I was in so much pain, but I still remember it so clearly. So, a stroke is the best? Well, what’s the worst if a stroke is the best? That sounds pretty damn bad. I spent a week in the stroke unit before I was rushed into the OR for emergency brain surgery; that’s when they discovered it was a brain abscess.

When I woke up, people seemed relieved. She’s alive. Yay! It’s all over. At least it’s not cancer! It was over for them. They didn’t have to worry about me anymore, but it was far from over for me. People who were watching through the screens of their smartphones, waiting for an update were relieved to hear I was out of the ICU. When you expect the worst and the worst doesn’t happen, then you settle for bad, because it’s not as bad as it could have been. Nobody had to live in that hospital bed except me, and to me it felt like the most traumatic, debilitating thing that could ever happen. When I realized I only had fifty-percent vision people said, “At least you have some vision!” When I could barely open my eyes because I had cried so much that day, I would hear another “At least it’s not cancer!” And when I screamed and cried so hard I gave myself a nosebleed in the hospital, I heard, “Stay positive! You’re lucky to be alive!” Whenever I heard this, I felt like throat-punching everyone. I was weeks out of surgery with staples in my head, a splitting headache, and stuck in a hospital bed trying to adapt to my vision loss. There’s no staying positive, and there’s no looking on the bright side. I felt like they were devaluing the significance of my illness.

I knew the people who said these things meant well; I really did know that. In such a traumatic situation people don’t know what to say or how to help, so they say the cliché things. But it doesn’t feel helpful. To be honest, there’s nothing anyone can say to truly help. There are some encouraging messages that make you feel good for a minute, but you have to work on building yourself back up on our own. The only thing that can accomplish that is time. It took me months to even want to get out of bed in the morning. Every day I woke up, I would tell myself to just get through that day. That’s all I needed to accomplish. I needed to feel like a person before I could reflect on what happened to me and feel grateful.

Two years later I do feel extremely grateful. I am out of the murky waters of not wanting to live, and I am so happy I get to be a mother to my kids and I get to enjoy the little and big things life has to offer. I look at situations differently than I did pre-brain surgery. You mourn the old you and accept the new you, and you love yourself even more than you did before. You know how strong you are, and you know you can make it through anything. You love your family and friends more because they showed you the importance of their presence in your life. You think about time more and how fast it passes. But, sometimes, you forget. You forget how bad it was and how close to death you were. And if you forget then you damn well know that other people forget, too. And that’s okay. I’m sure it crosses someone’s mind from time to time, and they think how lucky I am. That means so much to me. The community came together and showed me so much love. I thought they were devaluing my experience at the time, but when I reflect on it everyone helped me move forward and heal faster. Every time they sent me a message and I felt happy for a minute, those minutes added up. I am grateful for that. I am grateful for everyone who shared their own experiences with me. I’m grateful for the people who were silent, but liked and shared my updates. They were my silent cheerleaders. I am grateful for the people who tried in any way they could think of to help me and my family. And I’m grateful for the people who said, “At least it’s not cancer” They were looking at the positive because they care about me. They wanted me to live, and they wanted me to jump out of the murky waters. I felt like I crawled out instead. Your perspective changes as you change and now I can look back and know I didn’t jump and I didn’t crawl on my own. I was pulled out by all those people who told me to be positive. I didn’t know it then, but at the time they valued me more than I valued myself. It just took me discovering my own significance in this life to realize it.

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Jennie Carr

I’m a mom of two and a brain surgery survivor. My husband has Type 1 Diabetes, my oldest daughter has Celiac Disease and my youngest has Duane Syndrome. Writing allows me to share my journey of recovery, acceptance and self-discovery. 

See all posts by Jennie Carr