Life Is Messy
Life is messy. A few weeks ago, as I fell asleep with my sister in bed beside me, this thought played through my mind: life is oh-so messy. For all of us. No one is spared hardship or heartache or challenges. We all have something. For some, the weight, the battle, the uphill climb is greater than others. [See: Life is not fair.]
There are so many factors that play into how we move through life and how we define and move through our experiences. A great deal of what we’re up against is up to us. Through the good, the tough and the seemingly impossible, we choose how we respond.
Some challenges are easier to endure, fight through and overcome than others. In terms of hardship—as is also the case with triumph—there’s a whole spectrum of that which we have faced, are facing and will face in our lives.
With some battles, we can save ourselves. We can pick ourselves up. It may take time, but we can do it with little to no outside influence.
With others—and I believe the majority of challenges fall in this space—we need to reach beyond ourselves. We look to our families, friends and communities for support. We look to them to supplement what’s needed to get us out of the muck.
Still, with others, we are dependent on forces beyond ourselves and our networks. As I write this, I have medical challenges in mind. From diagnosis to prognosis to treatment and beyond, we are dependent on doctors and nurses, science and research to help us overcome our biggest challenges and return to a “normal” life.
As I lay next to my sister, Kathryn, a few weeks ago and thought about how messy life is, I thought about the internal weight that must crush her at times. I thought about how she must feel trapped at times—by no one but her own brain and body. I thought about how she is 26 years old and living with limited freedom, that she’s been living in a holding pattern of sorts for the past seven or so years. I thought about how unfair it is that my sister must fight this battle, that my family must fight this battle.
My sister is nothing short of incredible. For me, it has nothing and everything to do with the past seven or so years. My sister has always had a positive, can-do attitude. It’s just that the past few years have really tested and, I would say, heightened that quality. My sister has her doubts; she’s voiced them to me. Worries, doubts and fears make us human. It’s what we do with them that makes us who we are. To me, my sister is defined by her strength, bravery, courage and optimism.
You see, Kathryn, my 26-year-old sister, has been battling epilepsy since she was a sophomore in college. On the spectrum of challenges, she certainly has looked beyond herself to family, friends and others for support, but a great deal of where she’s been, where she is and where she’s going is dependent on her medical team—as well as science and research.
Throughout the past seven or so years, Kathryn has been in and out of hospitals. She no longer has a driver’s license and has been living at home with our parents. Her freedom is limited. She isn't quick to complain or get angry about her situation. While I imagine it's not always easy, she's taken it in stride.
In January and February, she shaved her head and had probes inserted into her brain. She then spent three weeks in the hospital where her doctors triggered seizures—no meds, sleep deprivation, activity with lights and noises—to analyze her brain activity. That time in the hospital was challenging but successful.
In April, she had surgery to remove part of her brain. While she endured intense pain, epileptic episodes and vivid hallucinations for a week following that surgery, she’s been seizure-free since then.
Her life post-surgery hasn’t been without challenges. Kathryn’s memory, senses and social and emotional cues have all been impacted. She’s aware of this. She’s having to relearn various elements of moving through everyday life. It is tough on my sister. It is tough on all of us. But she, with support from those who love and care about her, is taking steps to return to a “normal” life.
I am not my sister. The depth of her journey with epilepsy is not my story to share, and truly, only she can share her story. Kathryn means the world to me, and I am proud—to the core of who I am—of the way she’s handled and is handling an incredibly adverse situation, a situation where she doesn’t know how her brain and body will respond from one second, minute, hour, day to the next. I cannot begin to imagine living in her shoes.
As she navigates life, I want her to remember that—no matter what she is going through, no matter how incomprehensible it may seem—she is not alone. Life is messy, and while the degrees may vary, we all have something. I am proud of Kathryn’s strength, bravery, courage and optimism. I am proud of her for not hiding what she’s going through, for sharing her journey.
It’s easy to hide what’s really going on, especially when it’s tough or not easily understood. But to stand in the truth of who you are—again, especially when it’s tough or not easily understood—that is so powerfully, undoubtedly beautiful. It takes courage.
Life is messy. We all have something. Wherever you find yourself, remember these truths. Whether you’re in the depths of a valley, on top of a mountain or somewhere in between, you’re not alone. Ever.
November is National Epilepsy Awareness Month. If you or someone you know has epilepsy, the Epilepsy Foundation is a good resource for education, community and more.
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