Meeting My People

I recently spent a few weeks in Arizona and saw the desert in bloom for the first time in my life.

All the sand and dry tan and brown, bursting into greens and pinks and yellows. It seemed like a perfect representation of my life the past three years. Dull and dry and sand finally showing hints of green with buds turning to blooms. Perhaps, like the cactus, I’m beginning to bloom after a long dry season, turning a corner, learning how to live with my brain injury.

April is Brain Injury Awareness month.

I wanted to participate in #MyBrainInjuryJourney so I wrote four paragraphs trying to capture the past three years of my life. If you want the quick bird’s eye view, here it is.

My Brain Injury Journey

My brain injury happened three years ago as the unfortunate result of an otherwise successful vascular surgery. I went into surgery healthy and active, running every other day, doing yoga, loving to hike. The last bike ride I went on was twenty-eight miles. I came out of the hospital, fourteen days later, unable to balance, barely walking with the aid of a walker, seeing double, and with no memory of my injury or weeks spent in the hospital. This was during the time of Covid, so I had no visitors or relatives with me. When I got home, I couldn’t read, use my computer, listen to music, or watch TV. My life as a writer and author had turned into a nightmare of lying on the couch, trying not to vomit.

I suppose what has surprised me the most is the ongoing-ness of brain injury. At first, I just expected to be cured. I wasn’t. I expected to be my old self again. I’m not. But looking back, I can see how far I’ve come. I’m reading and writing again and no longer need a walker. With the help of trekking poles, I can walk three or four miles. I’ve even gotten back on my bike.

It has been long, slow, and demanding, but I have also been helped by some of the loveliest people on the planet who are educated, trained and skilled at working with people who have brain injuries. I didn’t even know that Certified Brain Injury Specialists existed before my injury.

I’m learning to live with the Both/And of brain injury. I am BOTH sad about this journey I didn’t ask for, AND so very grateful to be alive, to have had these past three years with my husband, children, and grandchildren. It’s been a remarkable journey. And it’s not over yet.

Mind Matters

The North Dakota Brain Injury Network hosted its annual Mind Matters Conference in Fargo this month and I decided to attend. It was astonishing to meet other people living with the ramifications of brain injury. I listened to and talked with people who had acquired brain injuries resulting from falls, car accidents, Covid 19, aneurysms, brain cancer, and athletics. The conference was both amazing and distressing.

One whole room was set up with sponsors, vendors, and care giver information. I grabbed dozens of pamphlets: The Road Map to Brain Injury, Physical Therapy and Brain Injury, Occupational Therapy, Speech Therapy, Cognitive Therapy, Vision Therapy. What to Expect After Brain Injury. I was speechless looking around the large full room. Where had all of this information been three years ago when I needed it? Why hadn’t I been given any of these resources? What the heck.

According to the Center for Disease Control and Prevention, 5.3 million Americans live with disabilities as a result of brain injuries.

5.3 Million!

What an astonishing number. I have felt so all alone these past three years. I have struggled to find information, care, therapists, and people to point me on my way. It comes as a revelation that I am not alone.

My People

I guess, as rotten as it is to have a brain injury, it’s nice to finally feel like I have found my people.

And there are a lot of us! You walk by us every day and don’t know it. We often look fine. But underneath, inside and hidden from view, we struggle with exhaustion, a need for more hours of sleep, trouble with balance and dizziness, sensitivity to light and noise and motion, spatial disorientation, difficulties with conversation and memory. We often struggle with the long term grief of being different than we used to be.

If you have suffered from a brain injury, or care for someone who has, first of all, I’m sorry. It’s a long rough road. I’m sorry that you are on it. But please know, you are not alone. There are millions of us. And we can help each other find our way.

This past week, I had lunch with three other women who are all brain injury survivors. We met after the normal rush hour to avoid the main restaurant noise and had a spectacular time sharing our stories and connecting with each other. I didn’t have to explain everything. I didn’t have to couch my sentences with “I’m sorry ...” I wore my noise cancelling headphones and when one of the ladies pulled out a bag with various ear plugs to show me, I pulled out my tiny bag with two of my favorite ear plugs, Loop and Calmer, to show her!

Speech Therapy

I continue going to CranioSacral Therapy once or twice a month. I also go weekly to Speech Therapy and it’s changing my life. Who even knew that speech therapists worked with brain injury? It’s actually her specialty! She is a CBIS. A Certified Brain Injury Specialist. (Great credentials to look for when seeking help with brain injury).

Next week, I’m going to my first in-person yoga class. It’s specifically designed for brain injury survivors and is taught by a Love Your Brain certified yoga instructor.

It feels so good, after three long years, to be finding my way and meeting my people.

There is hope. There is help.

People with brain injuries are a diverse, culturally inclusive, multi-racial mosaic of people ranging across age, sexual orientation, income, and educational levels.

We are 5.3 million strong and we are not alone.

Wishing you many friendships and much joy on your journey. I hope that you are finding your people, too.

Love always,

Jill