Updated: Jun 14, 2021
"Education is the most powerful weapon which you can use to change the world"- Nelson Mandela
The purpose of this post is to provide some insight into brain cancer (and any applicable diseases/chronic illness) and what comes with it.
I believe that if you ask many of us with brain cancer, we will agree that it’s essentially an “invisible” disease. You may think or assume that people are “ok” based on how they look on the outside but don’t realize they really are not at all "ok" on the inside.
For example, as a healthy person (and I don’t mean for this to sound malicious), when you think of someone with cancer— what do you expect to see, or how do you typically picture them? Probably bald, pail, frail, etc, right? Did you know that not all types of chemotherapy causes cancer patients to lose hair and don’t necessarily make you "skinny". Sometimes you’re on steroids that make you puffy or gain weight. It isn’t anyone’s fault for making false assumptions— but maybe a little insight on this disease might improve our quick desire to pass judgment on others.
I can be the most accurate when sharing my own experience from the last year or so. To anyone who doesn't know me, I was diagnosed in 2006 with a brain tumor - Ependymoma grade 2 (brain tumors are grades, not stages) in my right frontal lobe. I was essentially "clear" from 2012 through 2016 when my tumor recurred and my diagnosis upgraded to Anaplastic Ependymoma grade 3. Anaplastic = malignant = cancer. Two craniotomies, later, everything was going as well as it could until October 2018. I knew something was wrong when getting ready for work one day. Suddenly I was unable to perform the simplest of tasks— putting my hair in a ponytail. Every time I have a recurrence, I recognize symptoms in my left hand first because of the location of my tumor. Since October 2018, I’ve had three surgeries - laser ablation, craniotomy, & radiosurgery. That makes a total of eight, with multiple chemotherapy treatments, over the span of 13 years. (Un)Luckily for me, my tumor has not responded very well to these annoying treatments, all taking a toll on my body.
Basically, each treatment (primarily those putting me under the knife) results in my left hand slowly losing functionality. Up until October 2018, my hand was really just “numb” on surface of some fingers but I was still able to do everything just fine: type, button, style my hair, etc.
Fast forward to today and I’m unable to: put my hair in a ponytail, type, tie my shoes (or, really, tie anything), button clothes (I’m getting better with one hand but one time I actually asked a stranger in the restroom to button my jeans), put on gloves, carry anything heavy, pinch open things in the way you would open string cheese...I could go on and on! Little things most people take for granted.
These all involve my fine motor skills and dexterity. My left hand’s fine motor skills are, frankly, in the gutter. On the bright side, I’ve never been so happy to be right-handed! I also occasionally struggle trying to think of the right words to say. Sometimes I have to describe what I’m trying to say, then hope that the other person will tell me the correct word. Alexa can be helpful, too.
I attend occupational therapy to work on functionality of my hand/arm three times a week as well as performing exercises at home. I try to use my left hand as much as possible at home, but— keeping it real— it’s extremely frustrating. It often feels as though all I do is ask for help. It does suck, BUT I’m SO grateful to have amazing people in my life who are ALWAYS there to help me! I couldn’t imagine going through this alone.
I try to find little ways to make things easier and eliminate the need to ask for help: keeping my hair short so I don’t have to put it in a ponytail, buying practical clothes such as pants with elastic waistlines (thank you, Old Navy!) wearing shoes without ties, things like that. You get it, right?
Now— back to the original reason for this post. There are people I know with brain cancer who get the “Why are you on disability, you look so healthy/normal?” question. I have a friend who goes to the gym everyday and people say “You go to the gym, why are YOU on disability?” First of all, it’s nobody’s business. Questions like these are pretty rude and insensitive. Brain cancer patients, for example, often have deficits you can’t SEE— but that doesn’t mean they aren’t there.
It is embarrassing for me if Todd and I go bowling or skating, and he has to tie my shoes/skates. It’s also embarrassing when someone has to cut my food for me in a restaurant. People are so judgy nowadays, making others feel like they need to provide some type of explanation. I know I do because I care away too much what people might think (trying to work on that, but hey— being real here).
Simply looking at a person, you would never know the struggles they face all day, every day. Look, everyone can be judgmental at times (often unintentionally) but we could all work on being better. Let’s stop making assumptions. Imagine how you would feel in situations if the role was flipped.
In addition to a judgmental society, people are incredibly impatient. Whether driving, walking, standing in line— what’s the rush? Take a minute to stop and observe your surroundings, the smells, sounds, feelings! Does no one live in the moment or practice mindfulness?
Trust me, if you make an effort to slow down and look around once in a while, you can reduce stress, practice patience and truly experience that moment you are in: and it is precious.
The reason I bring up patience is because of some experiences I've had, specifically checking out at stores. When checking out, I need to take my time putting money or cards back in my wallet due to the whole left hand issue. It takes even longer when the cashier give me change, because they put the bills, change, and receipt all stacked on top of each other and I’m not about to throw everything in my purse and organize it later. I need and want the time to put everything in the right place in my wallet, mostly because *I’m doing it with one hand* while the cashier starts ringing up the person behind me—and I’m still standing there. I feel rushed and like I need to explain myself, or say “I’m sorry” so that I stop being rushed.
There was a time the cashier started talking over me to the person literally right behind me while I was standing there putting things back in my wallet. Why was it not ok to wait ONE minute for me to finish up? I’m not just taking my sweet time because of no particular reason but even if I was, who cares? This might not sound like a big deal but at the moment when it's happening it stresses me out.
This all may sound minor (and maybe it is), but I want to reiterate— we don’t know everyone’s story. So, breathe. Take a minute. Show patience.