Category Archives: Video

“My Only Consolation” song by Mary Jane Gonzales

 

 

“My Only Consolation”

Written by Mary Jane Gonzales

Music and Performance by Lequita Hoffpauir

Copyright 2011

 

“Chronically Funny” by Caylee Shea video

https://youtu.be/ruBswgJLQ1w
Which sketch is most like you? 


This youtuber has other awesome chronic pain videos on her channel. Laugh and learn more about chronic illness all at once!

I don’t have the Privilege of opting out

I can’t sleep. I feel so helpless and outraged over the losses and violence in the last week. I don’t want to pray about it. I don’t want to blog about it. I definitely don’t want to discuss it incessantly with others on facebook or twitter while we sit safely in our homes.

I want to do something.

I want to help.

I want kids to stop being killed on our American streets: black kids, gay kids, cops… are we at war? Because we are tearing our own people apart.

I don’t actually feel like I have a card to play. I’m a white woman in a safe neighborhood. I have plenty to eat. I am certain I’m privileged in ways that I haven’t even thought about.

Until I was in high school, I was raised in a home with bars on the windows, guns shooting every night, across the street from the projects, all the kids in the community had to be inside by dark. We were the only white family around, but our neighborhood was so diverse, that I grew up without the concept of racial divisions. But this world is going backward. My mother said yesterday that this week reminds her of the riots of 1968 as tears rolled down her face. We are going backward.

I told my sister this weekend that I’ve been having nightmares about her upcoming vacation to FL ever since 50 kids out at a gay night club were murdered. She said that she and my sister-in-law have been cautious after dark, and try to stay around areas with police even if they are out to eat after the sun goes down. They are an interracial gay couple, and theoretically this America accepts them today. But if you follow the news, you know that they BOTH remain in danger, so they show up in my bad dreams.

There’s a whole lot of sharing right now about forgiveness, unity, and praying from white people like me, but where is the outrage? Where is the responsibility to DO SOMETHING?

I might be white, but I don’t feel I have the privilege of doing nothing right now.

We are ALL responsible, don’t you see? This our world.

Use the hands and will and talents God blessed you with to rise up and help when something terrible happens in our country. Give blood, go to a peace rally, set up a GoFundMe page for one of the families involved in the shootings, organize a fundraiser in your community for an ending gun violence organization.

Instead, a lot of people are saying things like, “all lives matter” not just “black lives matter.”

Listen, it’s easy to say that when you aren’t part of a disenfranchised community who is desperate for a voice. If you have said that, remember that you have children right by you who don’t have enough to eat, young women, men and children being sold into sex slavery right in your community, and someone within walking distance is home-bound for the rest of their lives because we haven’t received competent medical care. These lives matter, and there are groups concerned to raise awareness for these victims as well.

My point is that it’s hypocritical to give children with autism a voice who need it, and also say that the black community shouldn’t raise its voice also. To have an ALL LIVES MATTER world, we have to be equals, and ALL have an equally loud voice.

You don’t have to use a hashtag or join a group of protesters to help build equality. Compassion, empathy, and action are the missing links that can help build bridges that we are craving for unity.

I pray this video from poet, author, and life force of nature, Maya Angelou is a peace to your heart, and an encouragement for you as she is for me.

I may feel helpless today, but never hopeless for change. Please be safe. God be with you.

 

 

 

Warm Milk: Physician Frustration

This is a clip from the 1990’s television show Twin Peaks. This is how I feel dealing with physicians the past few years. It makes me laugh inside every time I watch it!

The struggle to communicate. The cutting off of life-lines and other doctors’ knowledge when you know it is needed. The times the condition has been worsened by negligence, yet we still say “Thanks!” and pay our co-pays. (Watching him sign that gratuity is SUCH a riot!) Although I’m usually the one to say, “I’ve heard of you” to the doctor, I’ve gotten the old thumbs up from them, out the door, as they appear happy to be through with my appointment. Ha!

The past few years especially when things have been very dire, getting one prescription or one piece of advice is so much like a glass of warm milk for Agent Cooper’s bleeding gun wounds. Sometimes you can advocate well for yourself and communicate on your own behalf clearly, working with your doctor who cares about your needs, and sometimes the situation doesn’t allow for that. Yet we still go in with so much hope that this appointment will be the one that will finally help; when the doctor doesn’t have ALL of the magical answers to solve everything wrong, it can be completely deflating.

Doctors are not gods. We put them on pedestals and then get mad when they don’t meet the high expectations we set for them. Some of us go in with very challenging health crises and when our doctors cannot make it right, we get very angry and frustrated at them. The entire situation is frustrating.

I have come to rely more on my faith in God the past few years over my faith in doctors or my faith in my body, even. Having a compassionate doctor that you feel cares- is a start. I’m very fortunate to have found one of those this year. But I still can’t get “Warm Milk” out of my brain!!!

***********

This is a good article about communicating with your doctor from FindingOutFibro.

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You’re Pretty and Your Hair is Magic

Maya Angelou quote | You're Pretty and Your Hair is Magic: Dark Girls

Maya Angelou

I recently watched Dark Girls, a documentary on African American culture. The focus was on prejudices based on skin tones within the black community and how this leads some women to devalue their skin and hair. Each women told a personal story of how she was disgraced by the shade of her complexion. Of course I am aware of this cultural phenomenon. However, hearing women of all ages share their intimate stories puts it in a perspective that would make any woman emotional on behalf of these challenges.

When I was a child, I was so envious of dark skin. First, you should know, growing up, we were the only white family on our block. I would swim with the neighbor children and watch the sun bounce light off their dark chocolate skin. On the playground, so many of the girls wore the plastic marble ball bands to hold their braids- which seemed to stand up, defying gravity. My little sister and I were so jealous of those hair bands! (Along with gravity-defying hair, of course). Hair that could twist and mold one moment and appear soft to the touch the next.

We got our wish for those marble ball bands once, but our braids fell limp. I suppose I thought the magic came with the bands. But that experience made me realize the girls on the playground just had magic hair that I would never acquire.

Everyone in our neighborhood had a special unique skin tone all their own.

Back at my crayon box there weren’t enough crayons to express all of my neighborhood playmates. Only one color to express my family though: Peach. When I asked what color we were, my mother said we are “white.” Confused, I responded, “No, we are peach,” and I ran to get the correct crayon to prove it.

Our Barbies we had collected up until that point were all the same color: Peach. The only variation was hair color. At this point, I asked for more colorful Barbies. That Christmas I got a Hawaiian Barbie. She had coffee skin, almond eyes, and long black hair. She was my favorite Barbie. My mother remembers this story and says at that time Hawaiian Barbie was the only non-Caucasian-looking Barbie she could find.

I’m really not trying to open up a can of worms with this entry. However, what struck my heart the most in the documentary was the little girl of around 3 or 4 who was asked to identify the ugliest and dumbest child. Each time, the African American girl pointed to the darkest of all of the images. And the prettiest, smartest child she believed was the lightest image. That experiment is a heart-crusher. If not, go get your vitals checked.

Below is CNN’s version of a similar experiment.

Without knowing the history and socioeconomic influences, she envies the light skin girl with the light hair and light eyes. And without knowing the history and socioeconomic influences, I envied the girls in my neighborhood with the chocolate brown skin and the magically soft hair.

Why do we always want what we don’t have? Why can’t we appreciate the beauty of others without depreciating our own beauty? Why do we grow up and cast judgement on others for being slightly different from us? I suppose this is the human condition. But just because it’s how we lean doesn’t mean we can’t learn to stand up straight, you know?

Please tell someone they are beautiful today. You truly are.

*****

“You are altogether beautiful, my love; there is no flaw in you.”

Song of Solomon 4:7

“Waiting for my Real Life to Begin”

Woke up with this song weighing heavy on my heart and in my head. Just because I cannot listen doesn’t keep music from playing inside of me. If you are like me and have trouble listening to music, the video includes the lyrics.

The second verse: “When I awoke today suddenly nothing happened.
But in my dreams I slew the DRAGON” plays into living with chronic illness and life now from a bed. But just as Colin Hay’s “love” keeps telling him to let the sun shine in and keeps reminding him there is already a plan; this is the same knowledge I have that God has a plan for me also. Not just in the future, but right now… I’m living it. My real life has already begun- even when it’s hard to feel it.

Sometimes we keep waiting for everything good to start up, and our purpose is right there in front of us. God bless you.

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