“If this is still happening in January,” I said (to no one), “I’m going to kill myself.” It was August 2013, and I was having one of my exhaustion spells, as I called them. I’d had a stroke in March that had left me with partial blindness and cognitive issues around vision. I couldn’t drive or do my job anymore, but more importantly, I couldn’t allow myself to get over-tired. If I did, I got the exhaustion spell. This, or similar issues, come with a brain injury, whether from a concussion or a stroke. But I’ve found that doctors rarely warn patients of this syndrome, and frequently don’t understand it when their patients try to discuss it with them.
The exhaustion spell usually lasted about three days, and during that time, I laid on the couch and slept—well, not actually slept, more like became unconscious for hours at a time. I’d regain consciousness dreadfully, wearily, groggily and only for long enough to visit the bathroom, drink a glass of water, or maybe eat a bite of something. Then back to the couch.
It was abject misery, although I cannot say why. It wasn’t painful, except in that way when you wake from a very sound sleep and your brain won’t work. It’s a huge effort just to rouse yourself to figure out why you woke up, where you are, and how to make your body sit up. I felt like my brain was weighted down. It wasn’t depression. It was oppression. The only coherent thought that would come out of the fog that surrounded me was, “I wish I were dead.” This thought was with me when I was conscious and finding the bathroom, the water, a little food, and it was with me when I was unconscious. There were no dreams and I didn’t feel rested. I just felt like I should die.
As the exhaustion spell began to subside on the third day, I would be conscious more. Not really able to think or do anything, but not unconscious. And the misery and the thought were the only things I had. I never wanted to go through this again.
Usually around day 4, I would “come to.” I’d wake feeling rested and normal again. I could be happy and I no longer remembered why I had wanted to die. I’d vow to never go through that again. Then something would happen at work that made me too mentally stimulated, or for some reason I couldn’t get enough sleep. Sometimes, it would just happen for no reason.
So, there I was in August, making myself that promise. Vowing that this could only happen to me a finite number of times before it was just too much to take.
This is what it’s like to have a single brain injury, be it from a stroke, a concussion, or whatever else may injure one’s brain. It seems to me that this, or something similar, is a microscopic fraction of what Junior Seau, pro football hall of famer who committed suicide, felt. Suddenly one day, I understood why he had done what he did.
The important thing is that I found a way out of that. I found a way to get it all to make sense, and to allow myself to get through the exhaustion spells and know that I could come out the other side and be ok. I could live through it and live with the knowledge that it would happen again. And two years later, in August 2015, I have just lived through a week of exhaustion spell, and never once thought of killing myself.
My Action Plan for Living through my Brain Injury
First, and foremost, I found a physician and neurologist who were smart and helpful. My original PCP put me in a heart disease group, and that was it. (I don’t have a heart disease, by the way.) My first neurologist had told me that I just needed to be tough; that there was no medical danger in being exhausted all the time; and that I needed an antidepressant. Another answered every question I had about my condition with, “You just need an anti-depressant.” I tried them and they made me feel awful. (While antidepressants might be helpful for some people in this situation, there is also something else going on.) There’s a difference between being depressed and being in a depressing situation.
My current PCP set up a one hour and forty-five minute appointment to be able to understand everything that was happening, and how she could help me. She referred me to my final neurologist, who told me of course you feel depressed when your brain is completely depleted! Your brain uses more energy than any other organ in your body, around 25% of your total energy needs. When your brain is trying to heal, it needs even more. Doesn’t it make sense that when it is completely depleted, it will require a shutdown period? He helped me in so many ways, but mostly, he let me know that I was normal and that it was okay—no, necessary—to sleep for 3 days straight now and then.
My second action item was to learn to accept that this was a natural part of my new life. I had accepted not driving. I had accepted not being able to read well when I had been an avid reader before. I had accepted no longer being able to guide the finances of the agency for which I had worked. Why couldn’t I accept the need for long naps? I sought the help of a mental health therapist and saw her for several months. She helped me to understand how to cope with all aspects of my new life.
Next, I learned to listen to my brain and to put myself first when I needed to rest. I don’t read as much as I used to. I don’t watch action films as intently. I try not to do things that require intense visual acuity for very long. I do not make nearly as many social plans as I used to, and when I do it’s on my terms. I schedule downtime for myself every week. I meditate regularly. And when I’m tired, I go to bed. If I have to leave in the middle of a movie and go to bed, I do so. If I have to sleep in and miss a breakfast engagement, I do so. I make sure I get 10 hours of sleep every night, and more when I need it. When someone tries to interfere with this, I tell them in no uncertain terms that I have a brain injury, and if I do not take care of myself, I will feel like I want to die. I tell them “in no uncertain terms” because most people don’t understand this type of illness. I look fine, and I seem fine, so they don’t understand, and they try to brush aside my needs if they don’t understand how serious it is.
Most importantly, I take my brain injury seriously, and try to protect myself from further damage. There are still times when my brain gets over tired and starts to slip into that abject misery. But I’ve armed myself with responses to that. I know that sleep is my friend, not my enemy as I used to think. I know that in a day or two, I will wake and be happy again. I remind myself that I have never regretted allowing myself to live through another exhaustion spell and enjoy the time that I am not exhausted.
No one ever told me I’d have this depression, but I’ve learned it is a natural part of many brain injuries. If you are, or have a loved one who is, someone with a brain injury, arm yourself with this knowledge. It’s important to know that this is normal, and may get better with time for healing. Follow the steps that I stumbled upon by finding doctors who will listen to you and understand what you are going through, and a mental health professional who can help guide you towards acceptance and development of a plan when these spells occur. I know that someday I will die, but for now, I will enjoy life however I can and assume that “No!” is the answer to the question, “Is death better than this?” I hope that is your answer as well.