Setbacks After Brain Injury

by Amy Zellmer | Editor-in-chief

Setbacks. They’re a fact of life, right?

After a brain injury, setbacks can be devastating. They can feel like the end of the world, wrapping you in a feeling of isolation and despair.

Throughout the course of my recovery, it was only natural that I would encounter setbacks. Most of these were small speed bumps, only impacting me mildly for a short time.

However, this past summer I encountered my biggest setback to date, and it derailed me for months. 

My brother had been staying with us after his surgery, and I didn’t want to wake him by turning on the light as I went down the stairs with my coffee. I made a few critical mistakes that I hope you can learn from: 1) I didn’t turn on the light, 2) I didn’t use the handrail, and 3) my hands were full. 

Yes, I was carrying a full cup of coffee in one hand and my phone in the other as I started my ill-fated journey down the stairs. 

As I reached the bottom of the stairs, I thought I was on the floor, but alas, there was still one more step. As I stepped out onto what I thought was the floor, I felt my entire body falling through the air. I immediately knew I was in trouble as my left arm smashed into the corner of the bathroom, and eventually I hit the floor hard with my knee before landing sprawled out on my frontside. 

My coffee was strewn over the white carpet and the walls, and my phone had flown into the other room. I lay there for a few minutes, writhing in pain, unsure just how badly I had hurt myself. 

I hollered for my brother who somehow had slept through the chaos and he jumped up to help me. I managed to get to my bed and lay down, while my brother grabbed an ice pack for my knee. 

I was grateful I hadn’t hit my head — though we all know that you don’t have to actually hit your head to sustain a concussion. The simple act of your brain bouncing around inside your skull is all it takes — especially after you’ve already previously had a significant concussion. 

The first few days I could tell I was uncoordinated and my head was fuzzy. As time went on I noticed my aphasia was back and my headaches were out of control again. We had previously gotten my headaches down to one every two or three months, and now they were every other week. 

If you’ve never had a headache, consider yourself super lucky. My headaches come from my neck and can be so painful that all I can do is go to bed — sometimes for days at a time. They interfere with my ability to talk and process information, and often my vision gets impaired as well. 

They are completely devastating, as I am not able to function and do simple tasks, let alone work. The fact that they were back again in full force was so discouraging. I didn’t want to ever feel this way again, yet here I was. 

Memories came flooding back to me … memories of the way I had treated by people I thought were friends when I had my original injury. I couldn’t bear the thought of going through that emotional roller coaster again.

I began withdrawing, not wanting to commit to social activities for fear of having to cancel at the last minute. I felt alone and incredibly sad — likely an emotional symptom from the concussion, in addition to actually being sad. 

I would often have to stay in bed for days, not able to get much-needed work done, or do household tasks and errands. My patience was zero, and I would get frustrated easily. I recognized all these as symptoms of the concussion, having been through this before. But it didn’t make it any easier. 

Fortunately I have tools in my toolbox and know how to use them; however, when you’re in the depths of pain, you feel like nothing will ever work and that you’ll never feel better again — even though you know that is not the truth. 

I have built a strong support system over the last six years since my original injury, yet I didn’t have the energy to reach out to them for help. I felt like I would be an inconvenience or a burden, even though I knew that was just the brain injury talking. 

I am a strong, independent woman, yet I felt like I was thrown back into middle-school maturity and thinking. I wasn’t processing my reality properly, and it was interfering with my recovery. 

• I was too overwhelmed to do my yoga practice — even though I knew it would help me.

• I was too fatigued to go for a walk in nature — even though I knew it would help me.

• I was too embarrassed to ask for help — even though I knew it would help me.

• I was too anxious to do just about anything, as I didn’t want to risk hurting myself yet  again.

These are all very real feelings for someone dealing with a brain injury. They may seem silly, self-sabotaging, or immature to someone who hasn’t experienced it, but to those of us going through it, they are very, very real (and frightening). 

Even though I knew what I needed to do, and I had the tools, knowledge, and the resources, I was still struggling. To be completely honest, I am still struggling six months later. 

When something like this happens, it’s jarring to both the body and soul. We have already been through so much and triumphed through it — it’s completely discouraging to know that something so minimal (falling down the stairs) can set us back so far. 

I know I will get through this. I’ve made it through worse already. I know I have people who can help me if I allow them. I know I need to give myself grace and allow myself the time needed to heal. 

It’s amazing what humans are capable of, and when we join forces we can be unstoppable.

I share my recent story in hopes that it can help someone else who’s dealing with a setback know they’re not alone. I know it can seem like the end of the world, but I assure you it’s not. Allow yourself self-care and compassion. Know that I see you, and I understand.

Amy Zellmer is an award winning author, keynote speaker, and TBI survivor and advocate. She is Editor-in-chief of The Brain Health Magazine, and hosts the Faces of TBI podcast series, as well as TBI TV on YouTube.