Hot Shower

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,

Kate Chalfin 

Advertisements

Drum Lesson

Hello all,

Happy New Year to all of you who continue to follow this blog and to the newcomers who’ve found your way here. I hope you come here knowing that I’ve got a new challenge for which we need your help. In a few days we’ll have a new Bill to fund Spinal Cord Injury Research in my original home state of Pennsylvania. Before I provide the details for you, let me share just a little bit of the why.

Yesterday while Gabe (my son) was working out as he so often does in our garage turned Rehab Gym, I caught a precious moment. For those of you new to this ongoing narrative, Gabe suffered a spinal cord injury about 8 1/2 years ago, which rendered him quadriplegic. To the surprise of many, sometimes even me, he has continued to pursue his passion as a musician. He leads, writes and sings in a band here in Mpls where they are currently recording their 4th album.

Yesterday while he was riding his FES (functional electrical stimulus…stationary bike with stim) bike, he was giving my 15 year old stepson, Jordan a drumming lesson. Since the gym doubles as a rehearsal space its cluttered up with musical gear, and one full drum kit. Jordan idolizes his older brother quite a bit, and like idolaters everywhere, he hopes to follow in his idol’s footsteps and form his own band one day.

Footsteps. Therein lies the joy and the sorrow, like so many things in life. Jordan was getting a lesson from listening to and keeping time with one of Gabe’s recorded tunes playing loudly over the gym speakers. And Gabe was directing him with his head, his mouth and his arms,, keeping his count and feel on time. There is no step in Gabe’s foot for Jordan to follow.

Gabe was never much of a drummer (keys were his thing) but years of writing songs from the bottom up with specialized software and seeing them take shape in his band has made up for much of that, not to mention being a passionate student of many kinds of music. It was a beautiful thing to watch Jordan keyed in on the cues coming from Gabe’s body while he struggled to keep his hands and feet on time and in pace. Yet it also reminds me of what my son could do with the use of his hands again, or a full diaphragm, or even his legs.

Please help us continue to move the dial on the research that is currently creeping in on the strategies to do just that. Like our Facebook page ‘PA for the Cure’, so you can get updates on our progress and sign our new petition here. Remember you do not have to be a PA resident to show support, so please share with all of your contacts.

Call or email Senator Scavello and ask him to make sure that we pass the PA Spinal Cord Disability Research Act, and to consider making it an ongoing allocation in the PA Budget. The email link is right under his picture on the homepage.

Thanks for your support

Matthew Rodreick