“What she found difficult to explain to healthy people about recovering from a brain injury was that each time she made a small step forward, she was often set back, exhausted for days, because ‘small steps’ are not small at all. They felt momentous, as if she were learning each step for the first time, because the neurons doing the activity often were doing it for the first time.”

What the author calls a set back, I call Saw-Toothing. Or Mountaineering. At first it freaked me out. I felt like I hadn’t made any progress. Like, here we go again. Like starting over. Back to page one. It was disheartening.

This brain healing, rewiring, neuroplasticity game isn’t a sprint.

It’s not even a longer race like a 220 m or an 880. It’s a marathon. A long slog that I wasn’t prepared for but am finding the courage and tenacity to navigate. And to be okay with Just Slowing Down.  

Each day I wake up not knowing what the day will be like: A good one? A difficult one?

I’m learning to face what I’ve been given. People tell me how inspirational I am. But really. Some days are just plain hard; I cry a lot. I lay on the couch. I’m bored and angry at life. Angry at my life, the dizziness, the constant nausea, the feeling that my body is falling, falling, falling. Why am I always falling? And then, some days are good: I laugh and walk and read and write. I enjoy a meal out, or a trip to the grocery store. I go biking. I work in the garden.

Setbacks are not setbacks. They are times of rest.

My brain needs to rest. To be quiet. To absorb and integrate all the new signals it is receiving. I need to honor all the work that my brain and body are doing. A friend said to me, “Your job this year is to heal.” I remind myself of that. I’m learning to give myself grace. And time.

I graduated from Vision Therapy this month. After four months of 40 minutes per day work, I went back and saw my Dr. at Lumen Vision. He said my eyes were working perfectly! He showed me all the improvements I’ve made. “Any vision problems you are having,” he said, “no longer have to do with the physical eye. They are brain perception issues.” We took a graduation picture, and he gave me a mug with some treats in it. So. Graduation Day!

One thing down feels amazing. It feels like progress. I’m thankful.

Last month I blogged about proprioception.

My brain is misinterpreting my body. When I move my arms, it feels like my head is moving. When I walk, I feel like I’m on a trampoline going up and down, not moving forward. And, most disconcerting of all, my head feels like it’s floating above my body.

Well. I woke up one day and my head felt attached to my body again!

I mean! My head is here. On my shoulders. Where it belongs! You can’t imagine my excitement to have such a visceral reminder that My Brain is Still Healing!! That’s the good news.

The “bad” news - the discombobulating fact - is that my head attached TILTED!

So now, when I stand up or walk I feel like I’m doing a FACEPLANT!! When I’m lying in bed, I feel like I’m falling forward. It makes NO SENSE. But it gives me hope that things are changing. I just wonder how much more weird they are going to get!!

There are a lot of things that keep me going.

Like this old t-shirt. “Never Give Up.” It reminds me to just keep going. Just put one foot in front of the other. Just. Live.

I also found a lot of inspiration from a video on YouTube taken from America’s Got Talent 2021. It made me cry and gave me courage both. Need a boost? Take a look at Nightbird’s original song, Okay. As the singer so eloquently says in the interview after the song,

“You can’t wait until life isn’t hard anymore until you decide to be happy.”

So, there you have it. Resting, Graduation, and a United Head. A very human journey through tough times. I hope some of the things I’m learning might be helpful to you or to someone you know.

Life is not either/or.

Life is both/and.

I am both happy and sad. My days are both a nightmare and a delicious taking in of summer and fresh veggies, grandkids, and an upcoming wedding. My healing is both going well and a bumpy ride. And that’s okay.

I’m okay. I hope you are, too.

Love always,

Jill