I’m heading out to Pennsylvania next week to support the PA advocates and the Bill we’ve worked hard to get introduced earlier this month. The Bill is modeled after the law we passed in MN back in 2015. The PA Bill is the culmination of over a year’s work, meetings, conversations, study and strategizing by the great PA advocates who seem to keep growing in number!
We need your help again to contact the legislators whose support we need to get this one passed and to sign our petition in PA: Please ask them to support SB (Senate Bill) #31 the Spinal Cord Disability Research Grant Program. Thanks for your help (sorry I can’t provide direct emails…can only give you links to the legislators web pages) and please share with your friends……then read the guest blog post below.
And then let me introduce you to one of our advocates from PA, Kate. This is her blog post about why she’s doing what she’s doing.
Rarely do I get to enjoy watching the Ellen DeGeneres Show, as I’m usually in the office that time of day. But for some reason, I caught a few minutes of the show the day after the election. As the show was taped prior to the election, Ellen could say nothing about the results as she had no idea who had won. But she opened her show by saying that no matter who had won the election – a divisive one that had affected much of our country – to remember that in many ways, we are all the same. She said, “I believe we can all come together because if you take away the labels, you realize we’re far more alike than we are different.” She followed that up with a few funny examples, for instance, that we all have that feeling of stepping out of the shower and realizing our towel is all the way across the bathroom, and end up tip-toeing across the bathroom trying not to get the floor wet. And we all share that automatic instinct of ducking your head as you drive into a parking garage, because you’re sure if you just duck your head, your car will fit under the clearance sign. (I know you’ve done it!)
It was a silly and funny analogy, but it got me to thinking about my husband’s injury. My husband Jake has a C7 spinal cord injury, with a T2 functional level. Others with a spinal cord injury (SCI) are familiar with that language, but for our able-bodied friends, that means Jake is paralyzed from the chest down. When I met and started dating my husband, I, like many of you reading this blog, immediately thought with sadness of the things we wouldn’t be able to do – hiking through our National Parks, dancing together at our wedding, walking down the street holding hands, and all the other dreams that a young active couple has when they fall in love. All of these restrictions relate to Jake’s inability to walk, stand up, or even sit up on his own. But now, four years into our relationship, I realize there are so many other, more important, functions that I wish I could give him back, all of which we would happily accept before the ability to stand up and walk.
How does that relate to Ellen, you’re wondering? One day my husband was rolling into the shower and I just casually mentioned to him how good a hot shower must feel. “Not really,” he said. “Since my injury, it doesn’t feel the same. The hot water just feels like…. a buzzing white noise.” WHAT?! Here I am, thinking that after a rough day of life as a paraplegic, a nice hot shower would revive you. Like Ellen’s shower story, I thought everyone must enjoy a hot shower. We can all agree that we share that, right? Apparently not. I learned that day this situation was just another one of the curses that comes with paralysis. My husband’s comments saddened me. It turns out, the loss of sensation takes away his body’s ability to feel that soothing hot water on his skin. Geez, what was left to enjoy? I later heard stories from other SCI survivors that their first showers after injury were actually extremely painful, almost unbearable. Their injuries had caused their brain to confuse their sensations into thinking the feeling of water was actually something painful. As it turns out, SCI injuries get more frustrating the more you know about them.
Why am I sharing this story with you? Because our advocacy group is rallying for increased funding for curative treatments for SCI survivors. (Survivors is a good word, because it reflects the battle that is everyday life post SCI injury.) The curative treatments we are advocating for are those that bring functional improvement to those with paralysis. While functional improvement in the way of walking, hiking, and dancing may not be immediately around the corner, functional recovery in the way of bladder, bowel, and sexual function, sensation, and standing, IS around the corner. And almost EVERY person with a spinal cord injury that you ask, wants these types of recovery first, above all else. This is why we will continue to fight for funding to support the exciting research taking place right now!
Doesn’t everyone deserve to enjoy a hot shower, whether it’s standing up or in a chair? Please support our bill by 1) calling your PA Senator and Representative to say you support SB31 and 2) signing our petition. You can find links to do both here.
Thank you for your ongoing support,