Marking Time with Brain Injury in Winter

winter bare tree

Winter is a season of recovery and preparation.   — Paul Theroux

I take pause this time of year.

Not just because it’s February and winter is long. Not just because it’s cold outside and the days are short. Many of us are affected by winter’s muted tones of gray and brown and bare trees. I’ve learned to find beauty and wonder in the starkness and toughness of winter.

I think many of us find winter a time for reflection. I certainly do.

It’s 22 years this month since a carbon monoxide poisoning accident left my older sister, Molly, with a severe brain injury and killed her husband, Walt. It’s mind-boggling to realize more than two decades have passed. I know that Walt’s family and my family mark this time of year in personal ways.

Markers

“Anniversaries” we observe each year, such as birthdays and holidays. Then some of us have “markers.” These are the events – some sad, some joyful – that create “pre-” and “post-” descriptions, and split the before and after in our lives. Markers also designate how our thoughts are shaped, many of the choices we make, and how we remember.

For Walt’s family and mine, our lives were cleaved in February 1995 – before the carbon monoxide poisoning and after. Before Molly’s brain injury and after. When Walt was alive, and after.

When I encounter other people and their families who’ve been impacted by brain injury, a pattern emerges; lives ruptured by brain injury and forever changed. With the uniqueness of each person’s brain injury and its imprint of a shift in personality, the divide is especially distinct. Add the challenge of ongoing caregiving for a loved one with a brain injury and the marker is monumental. My family and others have the powerful marker of brain injury in our timelines, and feel it every day.

Caregiving and Finding My Way

I’ve made countless mistakes in my post-brain injury existence – in my career, in my role as caregiver to my sister, and as a family member who tries to communicate and be helpful in the right ways. I know many family caregivers struggle and experience doubt. I question my abilities – and I’m the lucky caregiver with tremendous family support. And yet, my mistakes and misunderstandings go on—even with my heightened awareness and caution to act carefully in a tangled, far-reaching, brain-injury world.

forest thicket in winter

When I pause and find some perspective, I realize most caregivers to people with brain injuries and their families likely stumble through these thickets, too. It’s hard. I am reminded of why a caregiver needs persistence, patience, and reasons to push through.

I’ve had to let go, learn as best I can, mess up again, get lost, and let go and learn some more. I’m trying to not let my blunders take up too much space in my head and to not let fear settle in my bones, like an icy chill. I realize that my work as a writer and a caregiver is both common and vital. And that’s why I try to exchange stories and ideas—to gain knowledge from others.

So, especially in early February, I mark time. I try to be mindful, evaluate, and focus. I am trying to be open and to learn, to be productive and create relevance. These are difficult, good goals. But for me to appropriate winter with these efforts feels energizing and hopeful, a way to carry me through to springtime.

icy branch in winter

Day to day, it matters when Molly laughs, when I help someone understand a little bit about brain injury, when I teach a stranger about carbon monoxide poisoning. When I write an effective sentence, when I sit with my vulnerabilities, when I share caregiving challenges and joys with those who know caregiving and those who don’t. It matters when I can support others and also feel supported. When I can be curious, move with purpose, walk with love, and even shiver in the cold. I take pause, recognize aliveness in my breath, and feel grateful. Even for winter.

Take care,

Lyrysa

P.S. I’d love to hear about your winter coping strategies – with brain injury, caregiving, or other endeavors. Please leave a comment below and share this blog post with your family and friends so we can expand this conversation and continue to raise awareness and spread compassion—and warmth!  Thank you.

 

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8 Comments

  1. Even though it might seem harder to get outside and engage in activities, it is well worth it for my state of mind!

    • Hi Debbie,
      You are so right! No matter what the weather (with the exception of a lot of ice), I do bundle up, get outside, and get some exercise. On icy days, it’s yoga inside! Any activity really does help improve one’s mood, and it’s good for body and brain. It’s part of the self-care that all caregivers (and everybody!) need to do for themselves. Thanks for your helpful and healthful comment.

  2. Thank you, Lyrysa, for your notes. I would guess that all of us think back through situations, wondering if we could be more effective by doing things differently. You are good for us all. I love you. Dad

    • Awww, thanks Dad. You are correct, and since I know I can’t change the past, I try to make what corrections I can — edit! — and then learn and also remember to avoid the same mistakes again. I’m not always very good at this, but it is my intention to learn and improve. Thank you and love, love, love to you.

  3. Thank you Lyrysa, for sharing your thoughts, feelings and insights about the challenges of winter, brain injury, and caregiving. Beautifully written, and provides much to ponder on these long winter evenings. It has been such a long road and journey for you, and I wish you the best as it continues.

    • Thank you, Chris. We all know these reflective moments that winter encourages and nudges to the surface. I’m learning to embrace them (as best I can) and learn from them (slowly). Take care. Wishing you well, too.

  4. Hey, I noticed a comment you’d made on BYP Facebook group and decided to check out your blog. I have PCS(post-concussion syndrome) so I was interested in the “Brain injury” topic. Thanks for writing about your experiences with your sister and working as an advocate for brain injury. Nice blog, keep it coming!

    • Hello Amanda,
      Thank you so much for commenting and sharing about your PCS. I know a couple of other women also with PCS, one of them a friend of Molly’s from her college years at Yale. Like you, these women are strong and carrying on and managing well. Bravo! I hope you’ll sign up on my website so I can send you the first chapter of my book. I will check out your social media, too. Let’s spread the word! Thanks, and take care.

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