What an awful, scary, and painful time it has been. I’ve wondered what (if anything) I should share. Some things seem so small now, and others so big. In fact, some things feel enormous. And heavy.
Here’s what I want to say to you … caregivers and survivors …I hope you take in the words that resonate with you, and feel free to release those that don’t. In this time of uncertainty it is important to tap into things that have previously helped you, and remind yourself of the goodness within you and around you.
There are some ideas I like to practice in my daily routine. Maybe you will find them helpful.
I think of trust as something I have an opportunity to lean into. I close my eyes and imagine a foundation of bricks being laid behind me. I see a wall being built, evidence of a physical structure I can lean my back on, and allow my head to feel supported by. I let my shoulders relax and feel the tension leaving my body as I look to the sky.
Perhaps you can imagine this wall, too. Each brick being laid represents a family member, friend, or someone who has supported you. Maybe they are a nurse who took care of you, or an exceptional physical therapist. Maybe you had a man like I did who gifted me a muffin each day Taylor was in rehab. What special memories. What good people. In times of social (and physical) distancing, we miss people. But they remain in our hearts.
Remember the words spoken in challenging times, and the kindness behind them. Remember how good an embrace felt, or the warmth of someone genuinely caring. Dwell in those spaces. Revisit happy, soft, and good memories. Trust new happy spaces will again be present in our lives. Trust that those you love will be well, that you will be well. Imagine security wrapped around you.
To be honest, patience is not a word I like. Since Taylor’s brain injury I have learned to have more patience than ever before, but it has not been easy coming. In times like this, I feel as if the practice of learning patience was valuable. If you are a caregiver and your survivor is being further tested by feeling more isolated, more frustrated, more alone … your patience may be required to expand and grow further than it already has. And that might feel scary.
My suggestion would be this. Remind yourself to practice patience. For example: I am NOT a morning person. I am a mumbler, a wild-haired woman, who needs to slowly crawl out of bed, drink coffee and say nothing for a while. My morning shirt might say, “Don’t disturb me. I am still sleeping.”
Taylor wakes up before 5:30 daily. I’ve had to learn how to be with him in the morning and actually engage in chatter. Some days I have handled it with grace, others I have failed. In the good moments I take note of how good patience feels for all involved. In the not so good moments, I take note, too. Be patient with your process, and yourself. But also be patient with your survivor. Patience is a tall order, but for us, it is like water. It is part of our lifeline.
Life has changed. We are used to that. When brain injury came into our world, we made some trades. Jobs shifted. Relationships ended. Confusion came. Grief flooded us. But there was also light. The light took a long time for me to feel and notice, but eventually I saw it and I felt it.
One of the ways it came was years later, in the form of yoga. I stepped on a new space, my mat. I moved my body in ways I hadn’t before. I accepted there was room in the world of yoga for someone who wasn’t tall and didn’t move like a swan. I found peace. I also found curiosity. So did Taylor. This new practice was something we were separate participants in. And yet, it was shared.
Now is the perfect time to take up a hobby you’ve wondered about. Add a new houseplant to your collection, play the board game sitting in your cabinet, get out an old puzzle, try cooking a new dish, or take up a new form of exercise. Get curious and then get brave. Try something new. You might find something you can’t step away from, or you might entertain yourself for an hour. Curiosity is good stuff.
For so long I fought against what Taylor’s injury meant. The grief, the anger, the despair, the depression. The cloud that sat over Taylor, also sat over me. It felt so incredibly hard! It consumed me. I started to really dislike myself. I turned inward, against myself … and I turned my back on myself, while trying to help Taylor heal. Part of this was my grieving process, and I will not apologize for it. I dug deep to understand it and move through it. And I did, which I am proud of. I also allowed Taylor to grieve. I continue to honor his feelings about HIS life being turned inside out and upside down. I will never tell Taylor how to feel.
I will continue to remind myself of the important truths I’ve discovered in sharing our story … the truths that many people crave genuine connection, permission to slow down, and friends who offer positive energy. I’ve realized through speaking with survivors and caregivers that hearts are lifted (including mine) when we share our stories. Knowing we shed light on someone’s darkness feels amazing. And offering hope is fulfilling.
Sometimes we are heart lifters, light bearers, and hope givers, and at other times we receive those gifts. I am holding a space in my heart for you wherever you are.