Friday was definitely an AC/DC kind of morning. I needed a little kick-start, more like a jolt, to get my feet moving. Sometimes the trail feels so long, and my feet give no sign of going anywhere. I open my phone to snap a shot, trying to get Tony in action and he has already become a little black dot in the distance. Ugh. I will never catch up to him. He’s so much faster than I am.
My feet were planted but my mind was racing. The night before I had been exchanging messages with Nancy (Moen), I won’t go into the layered details of how we know each other, let’s just say we re-connected on FB (I know a real shocker) and that I went to grade school and high school with her brother, Bill, they are wonderful people. They are kind, funny, caring, good-hearted, the kind of friends that you would want your kids to have growing up and through their lifetime.
Our conversation would quickly shift from sharing memories to talking about her daughter, Kelsey’s, continued challenges with epilepsy. Prior to talking with Nancy I had not known very much about epilepsy. I believe there was a student in our grade school that was burdened with these seizures, looking back it is clear that I never understood the depth of her challenges.
Kelsey was diagnosed when she is 11 years old. I have not been able to stop thinking about her as a bright, energetic, fun, life living young girl that is suddenly stopped in her tracks while her body decides that she no longer has any say in what it will do and when it will happen. I wanted to know more, and Nancy, so generously shared their story, I was moved. With my beginner’s knowledge of epilepsy I don’t dare try and explain Kelsey’s diagnosis so I want to share with you how Nancy explained it to me, it is crucial to understanding what Kelsey and so many others deal with on a day-to-day basis. Here is what Nancy shared with me-
“Kelsey has simple partial seizures that secondarily generalize. That means that she can have motor/sensory seizures on one side of her body (simple) or both sides or more than one area affected (arm/leg-partial). With Simple partial seizures, she stays conscious but doesn’t have control of her movement. Sometimes it’s small twitching, other times it is violent uncontrolled movement. If she is not medicated, the partial seizures will then generalize (generalize is the new term for “grand mal”), where she is unconscious and has tonic-clonic (jerking and stiffening) seizures of her entire body for about 2 minutes. She has nocturnal frontal lobe epilepsy that they believe originates in the Insular lob and goes to her frontal lobe.
This past summer Kelsey had surgery to place electrodes directly on the brain, to try to isolate her seizure focus, but the were unable to because the seizures are deeper seated within the brain. The doctor wants to proceed with Depth electrodes into the Insula at this time.”
I have read this over and over and over. This is where they are at right now, as a family they will discuss the doctors desire to proceed with the Depth electrodes. Most of us will or have faced difficult decisions that will affect the health of people we love, whether it happens once or a lifetime it is always challenging and stressful. I honor Nancy today for being the amazing mother that she is, for making decisions that are hard but necessary, for providing Kelsey with the same strong spirit and determination to find a way to help Kelsey’s body be at ease. (I do not take light away from Dan, Nancy’s husband, he too has provided Kelsey with many wonderful things, though it is my intention here to honor dynamic mother/child duo’s ;))
So as I stood on the trail, feet firmly planted on the ground, I thought about Kelsey. Here I am, fighting a body that does not want to move and Kelsey is fighting a body that won’t be still. I look at the trail ahead of me, it hasn’t gotten any shorter. I feel disconnected, so much that I step out of my shoes, I want them off. For some reason, it made me smile, it was the little ‘break’ that I needed, I was tempted to pick up my shoes and run in my socks. A sense of freedom. When I slip my feet back into my shoes I think, “Kelsey, these are your running shoes today, today I run for you. I offer my thoughts, prayers, and good intentions that you will continue to be surrounded by people that support and love you and that the doctors will soon be able to provide you with a solution that gives your body the relief it deserves.”
And off I went, smiling. There is no doubt in my mind that whatever Kelsey chooses to do in life she will face it with courage, spirit and determination. As I continue on the trail, I grab a rock for my ‘jar o’ miles‘ (see tab at top of the page), I hold on to it tightly, grateful, thinking of how solid Kelsey’s determination feels, ‘this one’s for you kiddo, you are made of strong stuff“.
Please take a moment to learn more about epilepsy and show your support by visiting the links below. With Nancy’s permission I have also included Kelsey’s CaringBridge link so you can get a glimpse of what her experience was like this last summer during her surgery. You will also see Kelsey, a beautiful, thriving 16 year old. In her photo she is blowing a kiss, and when I first saw it all I could think was “she is blowing epilepsy a kiss goodbye“.
Best wishes to you Kelsey, I hope to someday share time with your mom again, catching up over coffee and celebrating your great successes in life. Better yet, maybe we’ll run and celebrate victory together. What do you think? I’m already looking forward to it!
The Epilepsy Foundation:
Talk About It:
Kelsey’s CaringBridge page: