Living with a traumatic brain injury (TBI) can be a very lonely, painful place. It’s a place that is often misunderstood, and a place that no one is talking about.
When I first fell on a patch of ice 19 months ago, I had no idea the journey that laid ahead — the ups and downs — and the feeling of moving backwards instead of forward. Also, I feel isolated — that no one understands, or even believes, what I’m going through.
My original diagnosis was that I had a severe concussion. I was told that my symptoms should get better in a few weeks, and that extreme emotions are typical. I remember crying while watching anything on television, even comedy. I had an overwhelming sense of sadness, for no apparent reason, all the time.
I rarely wanted to leave the house, as public places were too loud and over-stimulating. In the rare instance that I did go out with friends, I would have this feeling in the pit of my stomach that I couldn’t figure out. I would have a hard time breathing, and would be fighting back tears most of the time. I usually ended up leaving early with an excuse that I was getting a headache — although that was often the truth.
About 10 months after my fall, my symptoms were not getting any better, and some were actually getting worse, or new ones were appearing. Later I found out this was typical. I started slipping deeper into depression, thinking I was never going to get better. I couldn’t handle the intense pain and fatigue that were a constant in my new world. I began having a lot of fear related to falling again, or hurting myself in general. I was over protective of my body. Often I would not leave my house, all the while reasoning in my head that I could not get hurt again if I didn’t go near the icy sidewalks.
I had never suffered from anxiety before my fall, other than the standard “butterflies in the stomach” feeling the night before a big presentation or other event. This feeling now building inside me was unfamiliar, and I truly didn’t know what was happening to me, or how to control it.
I had dislocated my sternum in the fall, and had a lot of soreness in my chest. I didn’t give the pain much thought, until it started getting worse, and it was coupled with a rapid heart rate and sweaty palms. I felt like my throat was closing, and I couldn’t breathe. All I wanted to do was scream as tears started rolling down my cheeks.
Thankfully my good friend recognized what was happening. She was pretty sure I was having an anxiety attack. She told me to go ahead and scream because it would make me feel better. Words started coming out of my mouth from somewhere deep within my body. I heard myself saying things like, “I am so sick of feeling like this.” “I want to get better… to feel normal again.” “I can’t handle all this pain.” “All of this pain and fatigue is too much.”
After the anxiety attack, I was completely drained of all energy and emotion. I spent the next few weeks walking around in a zombie-like manner, and I barely had enough energy to walk, let alone talk to someone. I spent most of my time in bed, or staring blankly at the television screen.
Now that I am aware of what that feeling was, I am better able to manage it. However, at times it still gets a grip on me, and will paralyze me to the core with fear. I have found meditation and yoga help ease the rising feeling in my chest, and draw my attention to my breath instead of the fear. Anxiety is a seriously scary thing that you truly have no control over. I am surprised what sets it off, and of course, it happens when I am least expecting it. Other times, like when we got our first snowy-ice mixture the following winter, it makes sense to me.
Christi Smith from Sturgis, Michigan, suffered a TBI in 2009 after she fell out of a moving golf cart. She says:
“My anxiety, depression and PTSD affect me every day. Some days I have bursts of anger, and others I’m extremely emotional and cry about most things. I’m always anxious about everything.”
Julie Nowak from Toronto, Ontario, Canada suffered a TBI in 2014 from a biking accident. She says:
“We live in an ‘able-ist’ world that does not know how to deal with mental health. When I tell people about my anxiety, I am told to stop worrying. We don’t tell someone in a wheelchair to walk, so why would you tell an anxious person to stop being anxious? We need to have more empathy, and we need people who will be with us during our struggles, and love us regardless, rather than tell us to change. Large, loud groups of people trigger my social anxiety, and I often cannot be in these spaces. Yet if I want to socialize with my peers who are in their twenties and thirties, these group settings are typically my only options. Thus, I am forced to choose between anxiety and loneliness.”
Anxiety and depression tend to go hand in hand, and are extremely common for those with TBI and chronic pain. I am fortunate to have found a great therapist who is helping me work though my fears, and he is also teaching me how to get a better grip on them.
I strongly urge anyone who is suffering to seek the help and guidance of a therapist. There is no need to torture yourself by going through these feelings alone. There truly is light at the end of the tunnel, and when we are stuck in a dark place, it is challenging to see that.