For those who are fortunate enough not to have sustained a very severe traumatic brain injury and do not have any outwardly obvious physical disabilities, there are still very tangible struggles.
When someone looks "fine" or "ok" and acts seemingly "normal", it's hard for people on the outside to really comprehend the struggles they are facing on the inside. I'll admit, it's even hard for me, the very patient and understanding spouse of a man with a moderate TBI to understand some days. And some days, truthfully, it's exhausting.
Only those who are the closest to them, really see the daily obstacles. Those on the outside have difficulty seeing past the initial observation. I have helped my husband through seizures. I have watched light-hearted conversation with friends or family take every bit out of him and him need to sleep after. I've watched him fight to hold it together while the normal daily workings of our household start to overwhelm him. I've watched crippling anxiety prevent him from being able to watch our daughter open her gifts at her 5th birthday party or seeing someone at the store sending him into a full blown anxiety attack and having to go right home. I've ridden the daily emotional roller coaster with him. I've held him through some really low, lows. I'm there to constantly remind of him things he can't remember... I'm kind of like his right leg. He could live without me and get by ok, but having me here to lean on makes it a whole lot easier to keep walking.
Whether we want to admit it or not, Traumatic Brain Injury affects our daily life, in more ways than one. From daily tasks to relationships. We all just keep on pushing forward though. In the ideal setting, such as the TBI program my husband was part of, everyone gets it. They understand that there is so much more beneath the surface. So much more. However, in the real world, there are individuals walking around recovering from brain injuries all around us and we don't even realize it. They have to navigate a brash, impatient, unsympathetic world, while appearing to be "normal", all while dealing with a brain that has it's wires crossed. There is no magic pill to just make it all start working right.
I think one of the most frustrating things for both survivors and caregivers is when people say "He looks just fine." or "She looks like she is all better now." Looking fine or better on the outside is not an accurate reflection of what's going on, on the inside. For me, I take comments like that very personally, because my children and I are here experiencing the daily struggles along with him. I feel that it not only minimizes what he is going through, but it minimizes what we are going through as well. This certainly isn't an easy road to walk for any of us. People see the smiling, maybe even upbeat man they are having a short conversation with, but what they don't see is the anxiety, sensory overload and often emotional unraveling that comes after. It's like he's holding his breath and just waiting until the conversation is over to relax and breathe. It's an inner struggle, which I imagine is partly comprised of pride, that makes him force a certain appearance with most people. Those who are the closest can see subtle differences despite that, but most others, don't.
My husband is still who he was... but he isn't. Some days I see a beautiful glimpse of our "old normal", but our "new normal" is what we are living with and we have come to terms with that. We appreciate the moments when he is able to be a little like his old self though. Even if it's something as little as getting through a shopping trip without having to leave abruptly because of anxiety or sensory overload. That little thing, is actually really significant to us. We definitely stay home more. He needs naps almost daily. He forgets things every day. He's here though, and mostly healthy. For that I am thankful.
Traumatic Brain Injury in the real world, to put it frankly, freaking sucks. The survivors need to know there ARE those of us who care and understand. All of us right legs... well, we kind of need that too.