It took me a bit to talk about this because I had to get to a point where I am able to reflect on it somewhat unbiasedly and talk about it openly. An experience like this doesn’t leave any feeling bleeding human unscathed. Neurological, emotional, and mental trauma contributed to quite a bit of alteration (for the lack of a better word) in my psychological health. I will discuss some in this post but as always, the mind is always changing, and so it is difficult to give a first person account of everything at any given time. This post is my experience of sickness, and I don’t know if a professional could necessarily validate it.
Also, most of us know these in some sense but realizing it through experience put a lot more emphasis on the nature of life.
The first thing I felt as I came out of anesthesia and pain was a sense of liberation as if I am less attached to myself and realized how fleeting everything about life is. This is a hard feeling to explain because it is more of a perspective towards life rather than a feeling at a time. De-personalization (see Symptoms) helped me realize that my consciousness is separate from everything tangible to medicine. It may come close to the cognitive reserve, but consciousness is not visible on an fMRI. Coming so close to death and then learning that I am going to live liberated my consciousness from being caught up with the rest of me. This might sound very abstract and even imaginary but being sick is a very spiritual experience. I did have a lot of time to lie in my bed and ponder about the realities of life.
Once I came out of that wise ‘sage-like’ phase, I started having an irrational fear of death. Not that I lost that perspective towards life but survival instincts took over soon enough.
A lot of people tell me that I have been brave to deal with this. But I honestly don’t see it as bravery. We all know that we will die one day or another. We are not scared of death itself. What terrifies us is not having lived a happy and satisfactory life before death takes us. Having to live without a loved one and mourning them for the rest of our lives is petrifying. Old age is not scary because we might die but because we might decay to death. Not that I never had the absolute fear of death, I cried like a baby when I someone (Thank you!) made me realize that I should stop believing that someone somewhere is going to give me a magic pill that will shrink the tumor and it hit me that I could be one of the people who might die of brain tumor or have brain cancer. But I cried and woke up the next morning, and my survival instincts said, “We choose life. Let’s get to work”. One of my favorite quotes of all time is from Game of Thrones:
“There is only one God, and His name is Death. And there is only one thing we say to Death: ‘not today’.”
―Syrio Forel to Arya Stark
One of my friends (I should write a book about him!) said, “There is nothing after you die. So, it won’t matter to you what happens after you die. All the struggle is while you are alive and if you die, everybody who loves you has to live the rest of their lives with that grief”. After that, there was no absolute fear of death. What I was certainly scared of was the decay because I was losing myself slowly. My body was starting to give up on functions one after another, so I was terrified of losing my consciousness in that fight. I have an irrational fear of decay.
Having realized that everything we build in our lives is so uncertain makes me very paranoid about having to experience loss of a loved one. It is so irrational sometimes that my mind just visualizes how something as harmless as a skateboard could cause death. I tell my friends multiple times to drive safely. I had this intense urge to ball up my sister and keep her somewhere safe (almost funny!). Good things happening to me scares me because I wonder if something bad might happen next. I was scared of emotional attachment and letting go because the fear of loss is too hard to overcome to invest yourself. It is ironic that the feeling of liberation towards my own life and fear of losing someone I love co-exist. I am undergoing therapy for this and it is starting to get better.
Loss of self
Everybody I know will attest to the fact that the journey made me a better person (doesn’t reflect too well on my past self… ha ha!). But along with it, I also lost the person I was for 25 years of my life. I don’t know how much of me is the person I knew. Everything, before I woke from surgery, is blurred and emotionally distant in my head. I did mourn the loss of my past life for a while, but the joy of being alive is much stronger than the gloom of loss.
When I looked at myself in the mirror after surgery, I couldn’t recognize myself. I aged 5 yrs in 6 months. My body and face looked as if they belonged to someone else. De-personalization could have partly contributed to that. But it shook my self-image. To this day, I am unable to let go of that past image. Sometimes, my eyes deceive me when I look at myself in the mirror. But when I look at pictures of myself, I realize that was not how I saw myself (and not just, it’s a fat picture kind of way). There is a different person in the picture whom I still have difficulty associating with.
Decreased sense of time
I noticed that I underestimate how much time has passed. For instance, I do sit idly sometimes staring out the window and not realize that it has been an hour since I have been doing that. I find it hard to estimate the duration of time passed not because I am having a great time with my friends but because my sense of time is somewhat distorted.
Lack of motivation
This could be a neurological effect more so than the result of trauma. Most brain injury survivors I know also say that their motivation levels are deficient compared to before. Not that I lost the passion for what I do, but it is often tough to find the motivation to do anything, even to eat, at times. I see a stronger purpose for me in the larger picture of life, but at a more mental/ hormonal level, it is difficult to have a purpose in those moments. Some say it is the fear of neuro-fatigue and other say it has something to do with the happy hormones. Either way, I have low reserves of motivation, and I try to pile it for the urgent and important things. I have to ration energy and motivation in my daily life.
I never experienced apathy before the brain injury. It is the lack of any feeling. Apathy is indifference to everything. I don’t feel any emotion about anything, not even myself. I only experience apathy when I have severe migraine attacks coupled with PBA. It is cognitively miserable but emotionally blank. I realized that emotions are the key to everything we do only after I saw what it is like to not have them. To feel hunger, thirst, and fatigue purely physically and not emotionally respond to it is a weird experience. Apathy suspends my survival instincts to the point that I don’t eat or drink or walk or do anything. Cognitively, I can look at it and ask myself to get up and eat, but I don’t have the drive. Consciousness is sort of looking at this scenario and saying, “Oh, this is what it feels to not have emotions”.
This experience made me realize the importance of living life to the fullest. After 25 yrs when I thought I was going to die, I was not ready. I did not feel like I lived my life at all. It put things in perspective and helped me prioritize things in life. I feel grateful for being alive every day because there are a million things anyone could die of each day but we survive. Almost every day, I ask myself, “If today were my last day, would I still do what I am doing and feel like I have lived a life worth living?”. This drives most of my actions and helps me be a better person.
Sorry about the depressing post. I want to reach out to other brain injury survivors and let them know that it is normal to feel this way. But, it is important to seek help because it is easy to get lost in this abyss. Lots of love!