An Open Letter To Those Who Think They Understand My Brain Injury

Let me start by saying this message is not directed to the many loving, caring people that ask me how I am and truly care. I also want to say thank you to all of the people that have so diligently kept me in your thoughts and prayers over the last year and a half.

HOWEVER, to all the people that call me a liar, a baby, or desperate for attention: this is for all of you that mock my struggle by believing you have complete understanding of my situation.

First thing is first: I can assure you, that you don’t. I know this for two specific reasons.

One, it is a well-known fact that every single head injury is different depending on a million different factors. Separate cases can have similarities, yes, but in the end they’re like snowflakes. The effects of each injury on each individual person depends on a plethora of things, including the wiring of the brain, the state of the injury, the areas of the brain most affected, the ways in which that area is affected. You can basically talk around all of the individual ways in which each circumstance and brain is different than all the others that occur in the world, even if only different in seemingly minute ways.

Two, there are only five people in my life that could possibly understand at least a fraction of my personal situation. Why? One of them is going through a very similar situation and we talk from time to time about how we are handling our respective situations. My primary issue is chronic mind-numbing headaches, whereas hers is balance/stability severely influenced by visual complications. Physically our symptoms are different, but she has had the headaches for a short time and I the balance and visual complications for a short time. Though we struggle long term with separate things we have experienced the exhausting pain and struggle of the other’s primary complication. In addition to that we have also both had our lives severely impacted and even put on a severe hiatus with an unknown expiration date. She is the closest to understanding my situation. The other four people don’t understand as well as they wish they could. They have never experienced my personal type of pain. They haven’t experienced having nearly everything they’ve ever identified with taken from them. But they listen to me. They try to understand. They care enough about me to try to understand. They have spent enough time trying to get to know me and gaining my trust and proving that they actually genuinely care about me that I have actually taken the time to tell them how I truly feel and they have taken the time to listen.

I cope with the physical pain in multiple ways. But most importantly I cope with the emotional trauma in a different set of ways. One of those, probably the one I follow most adamantly is pretending I’m fine. Some may tell me that is unhealthy, but to be completely honest it’s not your choice, is it? The important part is that’s how I choose to deal with it. I don’t like being negative, I like being positive and hopeful and filled with joy. Unfortunately, admitting to myself the truth of my current situation is upsetting. Admitting to myself just how much I’ve lost is quite disheartening. So instead, I focus on what I still have: the options open to me, the people that love me and always will, and my faith- my God, that will never leave me.

So, now that you understand this, maybe you will realize why I’m not exactly willing to divulge my true emotions to everybody that asks how I’m doing. Let’s be honest, when some of you ask me, “How are you doing? How are your headaches?”etc, you don’t really want to know. Because the truth is desperately tragic. The truth is me rambling on about all the opportunities I’ve missed. But, I don’t admit this because I want your pity. In fact, I specifically don’t tell any of you this to avoid your pity. After all, how can I continue pretending everything is okay if I look around and everybody that knows me sees me as damaged? Am I damaged? Quite honestly, yes. Will I ever return to the way I was before the accident? Quite possibly not. I have accepted this fact. But I don’t really care your opinion on the subject. At the end of the day I only have the time and effort for the people willing to sit with me and hear the good, the bad, and the terribly ugly.

With that said, it would be greatly appreciated if you stopped assuming you understand what I’m going through or think you have me figured out because, as stated above, I can assure you, you don’t. The ONLY person that completely understands what is going on with my brain is the one who created it.

To all of you that are convinced I’m faking it. I forgive you. But my sinful human nature also drives me to say, screw you. But I also want to say that to all the people who have faked severe headaches, migraines, or brain injuries whether it be completely untrue, or if you stretched it longer than it truly lasted or if you exaggerated the severity of your pain. I say screw you for abusing the fact that brain injuries cause pain unseen. Screw you for giving the rest of us a bad name, for making people doubt us. Screw you for making people who have seen me in desperate amounts of pain believe that there is no possible way my head could hurt as much as I say it does, that it could debilitate me as much as it has. Screw you for making people doubt me when my pain is unbearable.

How dare you exaggerate and/or falsify your pain simply because our hurt cannot be verified. I want to point out that I forgive you all, as well. But that doesn’t mean I’ve forgotten the trouble you’ve caused for me and many like me. Because our pain cannot be seen, because we do not wear a cast or wrappings around our skulls, you have no physical proof and some of you choose not to believe our stories.

But I can assure you that I did not withdraw from college because I didn’t feel like being there. I didn’t have surgery because it sounded like fun. I don’t take countless forms of medicine because I’m interested in poisoning my body.

So I will say again, one final time, and hopefully you all will hear me. Stop assuming you understand my pain. Stop assuming you know how much I’m hurting physically or emotionally. Stop assuming you could possibly understand what I’ve been through. And stop assuming that I am simply too lazy to do what is necessary to be healed. Twenty months I’ve dealt with this pain and I’ve learned to grow and adjust through it despite nay-sayers- the “haters” if you will. And I can continue to do so without your help because I have a stronghold of people that are so supportive it outweighs the many that are too weak to be a support for someone with such a life shattering problem. I also have a deep, committed faith in my God, and a knowledge that He is enough for me.

However, I thought it productive to society to give you all a bit of a reality check, so that next time you cross paths with someone who has been through a very real debilitating trauma, that you might not have any physical proof of, you might be able to take a step back and see them as something you don’t understand, but care enough about their well being to try. Maybe next time you won’t be so stubbornly pigheaded, but actually take the time to realize that someone else could be suffering in ways you cannot see and may never in your lifetime be able to fully understand. And maybe next time you’ll realize you don’t need to fight that lack of understanding. Maybe next time you won’t feel such a desperate need to reject it and call it false. Maybe next time you’ll have grown in wisdom, maturity, and courage, so that you won’t be so easily scared off by the unknown and confusing. Maybe next time you’ll have the incredible strength that is necessary to walk alongside someone with a brain injury and encourage them and love them and build them up despite the world seemingly crashing down around them.

Maybe next time…