So over the past few months I have experienced some pretty dismissing comments. I'm actually amazed that people would say these things to any medical patient, let alone a brain surgery patient. I am sitting here just in awe at the lack of empathy shown to patients who literally put their lives in the hands of their providers. Not all providers behave this way and I have a pretty incredible support team, but sometimes I am shocked at how I and others going through similar challenges, are treated.
1. It's not that big a deal. Beg to differ. Its my life, my mind, it is that big a deal. I want to know everything and have it explained clearly as well as given to me in writing. Why? Because I won't understand just on hearing it and I will need reassurance that I am going to be OK. I don't need a pat on the head and pacification. I promise to read and review the information often, making sure I am doing everything possible to restore my life.
2. It's nothing to worry about. I am missing parts of my life, my memories. I miss my friends, and connecting fully with family. I miss going out with loved ones without planning for a siege. I experience constant debilitating anxiety as well as random panic attacks. Most people only imagine the worst, I have lived it. My own body has tried to kill me in a slow and painful way. Please don't tell me not to worry. If I worry, I can turn it into a plan. It helps me be safe, protect myself, ensure I don't lose anymore than I already have.
3. No, your tumor couldn't cause those symptoms. Really, because I didn't have that problem until I had a tumor so excuse me for thinking that A + B = AB. I'm pretty sure that loss of balance, hearing difficulty, pressure headaches, vision distortions are linked to the mass pressing on my brain. It's just a hunch, because you know, everything is regulated through my brain.
4. I don't know why you would feel that way. Um, because I have a tumor in my head, I just had surgery and might be facing another one, and something is interfering with the part of my body that regulates everything else. I can't imagine why I would be a complete emotional mess and confused about everything going on around me. I get that I look relatively healthy on the outside but should I wear a sign describing all the ways this has already messed with my life? Memory, balance, light and sound sensitivity, I can go one but it gets depressing.
5. Are you sure that that is what you are feeling? Seriously, you immediately question me about what I am going through and feeling? All I can do any more is feel. I feel sick. I feel tired. I feel scared, lonely, afraid. Isolation is my new best friend. I can't begin to explain the layers of feeling in my head every moment of every day. If you think listening to me talk about how I feel is confusing, try living through it. I'm a bundle of grateful, terrified, humbled, horrified, small, and aware of my infinite potential all at the same time. It doesn't matter how my feelings make you feel, they are mine, they are real, and I own every single one of them.
I get that, to some, our problems seem small. Brain tumor patients don't look sick, we don't always act sick. You don't see the bad days when we lay in bed crying from the pain. You don't see the struggle of getting out of bed when your muscles are screaming at you, when your vision is blurred and when everyday sounds are louder and more intense than sitting front and center at a rock concert. I hold to the empathy and love during these times. But, if I call you out for saying or doing something insensitive try to give what I say some credit. Or, at least, don't be an asshat.
So true.
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