An Open Letter From a TBI Patient

By Abby (Guest Writer) –

Dear Anyone and Everyone,

So we’re a little broken. We know our situations are difficult, frustrating, inconvenient, and that you want to help us but might not know how. We know that your actions or inactions are well-intentioned. Above all, we know that this is confusing and makes no sense to you. We know this because whatever it is to you, believe me, it is 100x that to us.

We want to help you understand, we just don’t know how. This doesn’t mean we want you to stop trying or to give up because, even if we don’t say it, we need you. Whether it’s been a couple weeks, months or years, odds are we still don’t fully know what’s going on so all we ask is you hang in there with us.

No two situations are the same. While many of us have shared circumstances, what works for one may not work for the other. I know that most people act with the best intentions and are trying in the best ways they know how. And for that I am beyond grateful. So thank you for all you do, and please understand that we appreciate the efforts!!

Thank you for…

●  Asking ​questions. Above all else I’d rather you asked me if you’re confused or curious than make assumptions.

●  Celebrating the small things with me! Walking a few blocks or reading for 30 minutes might seem silly but when you’ve been working up to it for months it’s the best feeling when you get there and feels even better when people are excited with you!

●  Randomly reaching out. While it might not always be a long conversation or takes me a couple days to respond, your random texts, calls, cards and visits always make it a better day.

●  Just being there! In whatever way it is, big or small, knowing there are people there to help when you can’t do anything, listen even if you’re just rambling on, or to just make you feel normal​ helps in ways I could never do justice explaining

Please understand that…

●  I joke around to make light of the situation. It’s okay to joke back! It’s okay to laugh at my jokes, even if they’re awful! Just know that while I’m keeping it light for you, the situation wasn’t and isn’t. But if we can’t laugh through the pain it’s just too depressing! Sometimes I might be more serious, but for the most part that’s a little too hard and private right now. That doesn’t ​mean we can’t talk about things.

●  Symptoms can appear and change quickly which means not all episodes are the same. This is incredibly frustrating and awkward to explain. If we say something is wrong, ​please ​believe us. Just because you can’t see it doesn’t make it less real.

●  Migraines are ​not ​the same as a headache. A day with just a headache is a happy day indeed! (Not minimizing your pain, headaches still suck but please don’t compare)

●  We are ​confused ​and scared. The brain is miraculous but unpredictable when it comes to the healing process. Things aren’t linear and we have set backs. New problems arise, old ones might worsen, and nothing seems very reliable. Because the brain controls everything, we might not always be able to communicate what we want to clearly, but we appreciate your willingness to listen ​without judgment​.

●  It’s ​very ​difficult to describe symptoms. Unless you’re a professional or it seems natural in the conversation please don’t ask for details. They’re shifty little monsters and half the time I don’t even know how to put it into words! (though the terms jackhammering, lightning bolt, and Rockem-Sockem Robots pop into mind…)

●  We are ​ANXIOUS​! Living in a state of not knowing if it will be a good day or not, if something is going to trigger an episode, if you’ll have to bail on plans or struggle to meet a deadline at work is in itself exhausting. We feel guilt and embarrassment when we have to cancel plans or ask for extensions. We know it inconveniences you and, believe it or not, we’d much rather be working on that 100 slide deck or just hanging out. It’s ok if this upsets you sometimes but please try to understand where we’re coming from and don’t stop inviting us.

●  Forgiveourmemories​. These may never be fully what they used to be but believe me we are working hard and really care about what you said, we may just need a reminder or 2.

●  There’s good days and bad days. Or ​bad moments.​ We are learning how to cope but sometimes the pain, frustration, confusion, anger, etc. gets to be a bit much and we need to break down (let’s be honest ​ALL ​people need this now and again!) Our reactions and emotions can be altered by physical changes and emotional responses of the injury. Please talk to us if you notice big changes in temperament or mood!

Depression is reported in over half of TBI and concussion patients compared to 10% of the public. If you or someone you know needs help contact the 24-hour National Crisis Hotline at 800-273-8255.

To anyone who is going or has gone through a similar situation, you know that I could go on for days describing all of the things we are thankful for people doing and what we want to help them understand.

To the Everyone and Anyone out there​, if nothing else just know this: the best thing you can do is just be there​, however you can.

We’re a little broken now and that sucks. Bad things happen, we get no say in their arrival or departure, but that’s okay because it shows us ​strength ​we never knew we had and takes us places we never knew we were ​going​.

That is all.

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