Category: Wisconsin

When Indifference is a Pre-Existing Condition, We All Lose

It’s difficult to adequately explain what it feels like to have a serious degenerative illness and have to listen to the barrage of ignorant or callous (and all too often, both) political rhetoric surrounding healthcare legislation. Like most people, I’m angry about the constant disingenuous spin on the health of the ACA and the manufactured need to repeal it rather than attempt a bipartisan effort to improve it. But the thing that bothers me the most is a big part of why all of this is happening in the first place, lack of empathy and the seemingly growing number of people who are unable to show compassion for people who’s life experience is different from their own. Instead of trying to understand each other better, it’s easier to manufacture a narrative that justifies discriminatory behavior. If you label groups of people as other-than-you, it’s easier to dismiss them. “Twenty four million people will lose coverage under this plan? Well, then they should stop being poor. They must be careless with their money, why should I have to contribute to their well being?” “Lifetime coverage limits cut off your kid’s chemo treatment? Where’s your life savings? Why don’t you sell your house? Start a GoFundMe page. It’s your kid, figure it out.” Basically, poor people need to stop being poor, and sick people should’ve planned better.

Oh. Ok.

All of this other-ing and distancing of oneself from entire groups of people makes it easier to be flippant when discussing ideas that benefit one group to the other’s detriment. For instance, throughout all this debate around healthcare, people who spend a lot of time justifying legislation that would allow insurers to discriminate based on a patient’s medical history often talk about “the sick” as if it’s a term for some hypothetical life experience of a nameless, faceless group entity. I get a similar impression when people throw around terms like “pre-existing conditions”, “lifetime coverage limits” and “high-risk pools” as if these details aren’t really a big fucking deal. I realize that, for generally healthy politicians and pundits, these terms are just talking points. They don’t seem to want to acknowledge the real-life (and death) gravity of their words as they dance around the consequences of proposed legislation that would remove the very consumer protections that people’s lives depend on, that my life depends on. Perhaps it’s because they’ve had the good fortune to be generally healthy, or perhaps they just aren’t capable of taking an empathetic stance on issues that don’t directly affect them. (Or perhaps they don’t give a shit because they’ve got a tax break to deliver.)

I guess what I want to say, at the heart of it, is this:

I’m not “other”.
I’m not a nameless, faceless, abstract entity.
I’m not broken, I am disabled due to disease, but that is just one small part of all the things that I am.
I’m not lazy or irresponsible and I didn’t do anything to deserve what happened to me.

My name is Sara.
I have silver hair and a crooked smile.
I’m a wife, a mother, a daughter, a sister, an aunt, and a friend.
I have my grandmother’s uncontainable cackle-laugh.
I’m a listener and a storyteller and a painter and a woman and a human.
I might even be a lot like you.
And I’m just trying to make it to tomorrow.

Thanks for reading.
Go do something good today.
xo

 

A cure for pediatric Epilepsy, but only for some kids?! The fight is on.

Everyone,

If you read anything today, please let it be this.

Wisconsin lawmakers are currently considering a bill that would allow for the legalization of CBD oil for the treatment of pediatric seizures. This oil is intentionally non-psychotrophic with low levels of THC, which is the chemical in marijuana that produces the “high”. The CBD oil has been used successfully to treat a type of severe childhood Epilepsy, one which can be deadly. The effectiveness of recent CBD treatments in states that allow medicinal marijuana has also prompted physicians that have been against the use of medical marijuana to reverse their decisions. One of the first things I did when I learned of CBD oil was to watch this segment with Dr. Sanjay Gupta, in which I was introduced to a little girl from Denver, Colorado named Charlotte.

Charlotte was suffering from a severe form of epilepsy that was literally stealing her life away. My heart hurt for this little girl and her family. After witnessing the miraculous changes that the CBD oil treatment provided, I was blown away. It was nothing short of amazing. This treatment could save the lives of so many kids. I remember thinking, “All parents with children suffering from Epilepsy need to know about this NOW!”

The horrible truth is, for some parents, learning about it is all they can do. Any child living in a state that does not allow medicinal marijuana has no access to CBD oil. Desperate parents can finally see the miracle they had been praying for, but it remains just out of their reach. Their child’s life is at stake every single day, and every single day they are denied the chance to save him or her.

HOW CAN THIS BE HAPPENING? How can a legislative body continue to deny a child’s right to what might be their only means of survival? It’s time to educate our lawmakers and push for a change in legislation NOW. Every minute counts! EVERY SINGLE MINUTE.

I first learned about CBD oil through my friend Sally Schaeffer, a devoted mother of a special needs child, Lydia. _LydiaLydia has a rare chromosome disorder which causes various illnesses but also epilepsy. Lydia’s seizures increased in 2013 and through an EEG they found she has a very rare seizure disorder which medications will not relieve. Brain surgery has also been discussed but physicians have no guaranteed success. The risks of surgery also include stroke, infection and even death.

Because of this, Sally has begun a tireless crusade to educate people and bring this bill forward in this legislative session. Take a minute to watch this video of Sally’s testimony at hearing for a bill that would legalize CBD oil for use in Wisconsin. (Even if you oppose the use of medicinal marijuana, that this bill does NOT include medicinal marijuana outside of CBD oil.)

http://www.jrn.com/tmj4/news/Lawmakers-hear-testimony-on-cannabis-for-sick-children-245281941.html.

Go watch the video. I’ll wait.

Listen to her. I don’t mean just “listen to what she says on the video”. Listen to HER. Listen to her voice. Listen to her when she looks up and asks, “What would you do?” For one second, imagine you were sitting in her chair. That it was your child’s life at stake. Think about going to sleep tonight, every night, terrified that the next seizure might kill your child.

When I talked to Sally recently, she had this to say, “For 6 years I’ve sought the best therapies, physicians and care. I’ve worked hard to help her be the best she can be. I just can’t sit back now and possibly lose all we’ve accomplished. Not only that I couldn’t take losing HER.” _LydandSallyI can’t even fathom being in her position. The thought of Lydia being denied CBD treatment makes my blood boil.

If you live in Wisconsin, I ask you –I beg you– to take a few minutes out of your day to write your legislators and state your support for the legalization of CBD oil for use in pediatric Epilepsy. This one small action could save lives. You could be a hero.Click here to contact your local representatives.

Visit Lydia’s website, http://www.lovinglydia.com for more information. _LydandDadGet to know Lydia, she is an incredible kid! It’s a great resource for learning more about CBD and how to join this fight.

It’s time to make some noise, whether you live in Wisconsin or not. It takes a village to raise a child. Right now, it will take a village to save a child’s life. Step up. Be the voice for these kids. Be THEIR hero.