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Top things to not say to a brain tumor patient...

So over the past few months I have experienced some pretty dismissing comments. I'm actually amazed that people would say these things ...

Showing posts with label injury. Show all posts
Showing posts with label injury. Show all posts

Friday, August 5, 2016

Don't Box Me In: Breaking Out of the Disablity Mold

Having a disability offers an interesting perspective of the world. It seems that everyone has a preconceived idea of who you are and what you are about. It can become disheartening and frustrating when you come up against these imposed expectations. People, in general, are not happy to have their pre-conceived ideas challenged. They push back, trying to force who you are and what you are capable of into a box titled everything from "Disabled" to "Un-able".

The belief of "Unable" is a common one. Many people focus on what was lost, what we don't have, what we are perceived to be lacking. The idea that all persons with disability are somehow unable or incapable is just wrong. Many of those who fall into the disability category offer many more abilities. Those abilities can be stronger and function at a different level even than fully well persons.

One example of this is my own hearing loss. After extensive and exhaustive study it has been determined that my hearing will not be able to come back. I am fully deaf on one side. Any one who has been following my writing can tell you that I suffer from hearing so acute that I can experience physical pain in normal social settings. Pain because the volume and tones that I am able to detect are heard at a higher and more intense level than those with normal hearing.  In order to attend events such as watching a movie with my family I take along headphones to muffle the sound enough that I can tolerate sitting with them for the duration of the movie. Despite such precautions, I still hear the movie so acutely that it taps my energy and often leaves me fatigued for hours afterward.

Another example from current media is the idea of Dare Devil. His loss of sight led to an uncanny awareness of everything that he could hear, see, and even touch. This is not to say that all persons with disabilities have overly developed senses in other areas, but each of us has adaptations in other areas where our mind and body have come together to allow us a higher level of living. Higher than if we just wallowed and sank into our disability.

People are comfortable with the predictable. Challenging our own perceptions and paradigms is hard enough, then we venture into the world. Taking our internal fight into society engenders a fight of another kind, the fight to be seen. It is talked about in the disability community the idea of invisibility. We are looked past in the grocery store, eyes skim over us, pretending we are not seen or that the "shame" of our disability is not noticed.

Children are rushed away, not able or encouraged to ask questions and find understanding. Many of us are prepared for and love questions, when we can take the unknown out of the equation, we are seen. Children are incredibly honest, they will call it like it is. This is utterly refreshing. The open and nonjudgmental queries of a child trying to understand why someone looks or sounds different opens the rest of us up to really see one another. I am no longer invisible.

How do I think other people should treat disability? Disability is simply a part of life that we work around or through. It is a corner of who I am, but it is not everything I am. Like having brown hair, it is a physical descriptor, not my identity.

I am not ashamed to use a cane or have trouble hearing on one side. I am not ashamed to stutter, have trouble forming words, or misuse words. I know who I am and where I come from. Those who look past, who don't see, who use the excuse of "I didn't want to offend", they should be ashamed. It is when we stop seeing one another and really listening that problems fester and worsen.

If you really want to look past the label, if you really want to avoid offense, then see me as a person. Don't pretend that I am not there or that I don't exist. Ask me questions out of concern and a desire to understand and then move on. Ask me about the rest of my full life. Ask me about my kids, my dog, my husband. Talk to me about stars and small towns. I can talk about spirituality for hours. I love to go hiking. I paint, I draw. I am not my disability. It is a reality of my life, but it is only one part of my life.

The lessons I have learned through this journey continue to amaze me. I can teach you about having and creating a full life outside of your challenges. I can teach you that bad days don't last, that life is beautiful and worth living. I can teach you about losing everything you thought you were only to discover who you really are.

What I can offer is valid and needed, so I will continue to share and write. I will keep standing up and demanding not to be boxed in by the expectations and preconceptions of others. I will keep demanding to be seen, to shake up the ideas of what you think you know until each of us is seen for who we are, instead of the idea that is most comfortable for someone else. I will keep speaking until those who are considered "Disabled" are no longer seen as unable but valued as members of the same society who can offer valuable and necessary perspective and insight. Let us out of the box, we don't belong here.

Monday, January 25, 2016

"If You Would Just..."

I know it isn't only me hearing well-meaning but tacky bullshit advice. Working in the mental health field you hear all the time "If they would try harder", "If you would just look on the bright side", "I had the same thing happen and it wasn't that bad." Anyone who imagines that this only happens with an invisible illness, let me break it to you, it doesn't.

It rarely happens, thank goodness, because I have pretty incredible friends but I have found that anytime you are dealing with a health issue, everyone's got an opinion. Most people keep their opinions to themselves, but there is always one that is so excited by the seminar, webinar, YouTube video, or article that they just saw that it is now their place to tell you how to be healed. Or to preach on the benefits of how quickly you would get better "If you would just..."


For all my Meningioma mommas and poppas out there let me say, "Go suck an egg." If all it took was a supplement, exercise, yoga, or meditation we would be healed. If the oil, probiotic, or organic food made my tumor disappear it would be gone. I still have a little souvenir making my life harder than it has to be.

Aside from having to defend my lifestyle, which is stupid, let me clear up a few things.
  1. Not all tumors are cancerous.
  2. Meningiomas have three basic causes; radiation, heredity, and prior injury. Possible links between the hormone progesterone are also being looked at for increasing growth.
  3. Meningioma is only one type of tumor, there are many others.
  4. Benign can still kill you. My tumor was benign and my doctors would not even give me a choice of care. I was admitted immediately and told it was surgery or I was going to die, I even had a general timeline of how long this would take. (They weren't talking months.)
Believing you know how someone else should live and heal is among the worst assumptions you can make. Let's review how to respond appropriately when dealing with someone disclosing health concerns.
  • Them: "I have...I'm dealing with...I suffer from..."
  • You: "That must be hard. Can I bring you dinner?" -or- "Thank you for sharing and trusting me. I would like to help. Can I watch your kids one day or drive you to an appointment?" -or- "Wow. I'm sorry."
See? You don't have to go any further. Empathy is looking at something from the other persons viewpoint. Telling is a big deal. The people I know don't need special treatment, they just don't need to deal with your emotional fallout on top of what they are already coping with. They need to be heard and acknowledged. That is it. Use a later time to inform yourself about their condition or talk about questions.

IF, and I strongly stress if you believe, after careful consideration, that the information is helpful and will benefit them, pass on the resource. Do not be surprised if they already have seen it and are not exactly thrilled about getting it again. You can also create a file of information to save for when or if they ever ask.

So, in conclusion:

"If you would just...show concern for who we are and express your love and support, that would be great."