As it comes up on the four year anniversary of my fall, I was planning on a post regarding the challenges and positives. But my thoughts roamed to a different view. The truth. Or more importantly, telling it. I still have trouble with telling the truth about me right now.
I trip over saying “I have a brain injury.”
It feels weird to say it out loud to others. I frequently refer to my situation to myself as being brain injured. Why do I have trouble stating this to other people? My family, friends, co-workers. It all feels the same. Like it’s fake. Like somehow these symptoms that I’ve been dealing with for years are imaginary. Like there is no reason why I shouldn’t be working. Maybe I truly haven’t acknowledged it within myself? Maybe it’s fear holding me back.
I have a fear of pity and constant concern. When the first thing people say to you every time they see you is how are you? in that concerned tone. I know you want me to respond upbeat with an enthusiastic “OK!” I’m thankful that you are genuinely concerned about my health and well-being.
The truth is I get tired of talking about it. It’s always going to be there. I’m probably not going to ever hit the finish line of being “healed.” It’s just a matter of how much is it affecting me today or right now in this moment. Usually, I can look back on a day and say Yes, today was good. I felt normal about 80% of the day. Sometimes just the question of how are you doing can remind me that even if I was having a fantastic day, there may be danger around the corner. Maybe I’ll have a sleepless night or be unable to drive tomorrow due to dizziness. I’d rather talk about something else, anything else. How about starting off the conversation with general topics. If I bring up my health, then I’ll want to talk about it. If not, then don’t ask, please.
I have a fear of judgement. As if others are thinking, why now? or, if you had a brain injury you would have known it from the beginning. To not be diagnosed until over three years after my fall does add to this feeling of insecurity. I discussed the difficulties of getting a definitive diagnosis here.
I’m fearful that others think I’m faking or blowing things out of proportion. Why do new symptoms crop up years later? Why am I able to do something today but tomorrow the same task causes me intense head pressure and dizziness? As another fellow brain injury blogger put it, I’m getting more skilled. I am more skilled at identifying and owning my deficits, knowing my limits and sticking to them, and telling my truth. To myself and to others.
To not say that I have a brain injury would be doing a disservice to me and to the brain injury community. Others need to be educated that this is what the many faces of brain injury look like. It’s an invisible illness and perhaps seeing what my unique brain injury looks like can help with educating the masses.
I am ‘high functioning’, as brain injuries go. I can walk and talk and look “normal” to other people. Many of my symptoms are physical in nature. I have headaches(migraines), deep brain pressure, vertigo, eye strain, light and noise sensitivity. When these symptoms increase, my ability to balance decreases. You can see it in my walking; feet apart like a duck, arms out at my sides, maybe trailing my fingers along the wall. My cognitive symptoms are less noticeable to others. My memory is good enough to get through a conversation. I do have word-finding difficulty but for the most part, can play this off as getting older.
The biggest thing that no one can see is my brain battery and coherence. This means how well the different sections of my brain are talking to each other. I will tell you this, most of the time I am between 40-60% coherence where you are between 90-100%. It takes much more energy for me to do the same things that you do. My brain gets to the fatigue point quickly and that’s when the symptoms start to show their ugly heads.
I mainly view myself as an upbeat person. I like to look at the positive side of the situation. Or at least I try to. I don’t like to show it when I’m feeling miserable or things are tough for me. This may be another reason why I am fearful that others think I’m faking it.
Because I do fake it.
I fake feeling normal. In my short interaction with you, I can pile on the charm and the wit. I can dish out a signature sarcastic comment and discuss topics passionately. What you don’t see is that this 15-minute conversation will take its toll on me as soon as I am not with you. I might need to sit in a quiet room, resting my eyes and ears. This means no phone screen, no computer, no tv, no reading, no music. Just sit and stare until the brain stops vibrating. Once I’m back to baseline then I can continue on to the next task.
What I’ve found over the past four years is acceptance. I’ve learned the importance of letting go of others’ judgement either real or perceived. As I have grown older I have become more aware of others impression of me and more concerned about what they think. Daily, almost hourly some days, I have to shed and re-shed those thoughts. When I was young anyone could have described me as being oblivious, happy. I often would have described myself as someone who views life as skipping through the field picking daisies. This was how I wanted to approach my life. In a way, this brain injury has turned me back toward this.
I am me. I know my truth. I would yell it from the rooftops if the exertion of my own voice didn’t make my head pound. Ah, yes. Just another day in the life of the brain injured. 🙂
Happy 4 years and going strong!
Peace and Love.