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Memory issues make the slights of life kind of interesting for me. I used to get really caught up in the drama, taking things personally in my private life, or worse the drama of online communities. Now, it's just different. I literally only have of a sense of agitation instead of being upset. Now I know only because I do document a lot of my day, I'll actually just forget it and move on. In some ways this is a gift not the curse I originally thought it was.

Do I get offended? not really and in 2 days for sure I won't be at all because I won't remember. In the beginning of this particular path I couldn't figure out what was going on. By the next day after the injury I was forgetting things like a leaky sieve. The whole conundrum of - I badly injured my head, but I forgot I injured my head. Why is my head hurting me? Am I getting migraines after decades of none? My son would remind me about hitting my head. Then I'd forget again. It was a never ending cycle. Eventually I woke up to the fact I'd forgotten a solid 2-3 years previous to the injury. I'm not even sure anymore how much time is just lost.

Honestly, in the beginning I thought I was developing early Alzheimer's. I do NOT mean this as a joke or to imply one at all. I really did think this was what was going on. Because I kept forgetting that I had HIT MY HEAD AND HAD A HEAD INJURY.

Frustration with this is that I still have moments where I see a memory with my visual memory but I can't connect to it. Like a foreign language. I see a picture of a CUP but I don't know the word for CUP in that language or how to describe the CUP. What if what I'm seeing is actually about the drink IN the cup?'s that confusing. Most of all I hate the idea that I'm getting it wrong. I feel diminished by not having the language correct.

Day to day if I choose to interact with someone, in person, online and there is a hurtful thing said or something I know is supposed to be kind of mean it earns a flat response. Because see, I don't get it anymore. Maybe this will change in the future, I don't know? But I don't get the mean words directed at me. I try to always be kind, I try to censor inappropriate words with an uncensored filter. I try very hard to try out the sentence in my mind before saying it out loud just to be absolutely sure it's not offensive. Then I appear to be 'slow'. Lovely.

Sometimes out of the blue a memory suddenly fires and I nearly shout it out in my excitement to actually remember something. Its the whole show kind of memory when this happens. I see the memory, feel the memory, smell the memory, have the physical response to the memory, experience for a second the emotions. There is such a headiness of remembering and it's so exciting. But it's also fleeting. I can't hang on to it.

Reading has become a challenge. I always plan to read. I used to read voraciously. Several books a week. I'd read anything. Serious work, romances, sci fi, medical, mystery? I read it. If it was written well enough to capture my interest? I'd read it to the end. Now, I read a chapter or two. Cool, I'm getting into the story so I'll take a break. Heat up some water, have some tea and toast go back to...

Hours later, because I've forgotten I was reading a book I finally remember I had started a book. I now have no clue what the story line was, who these characters are. It's a former joy that has become a sadness to me.

This is a big part of the 'why did it take so long to get treated' answer. I had asked about it, asked if i needed tests, medication, only to be 'poo pooed' that my 'concerns were invalid'. I have that one written down because apparently it inflamed my sporadic uncontrollable anger. I don't actually remember these times, it's only due to having written them down AT the time. I know at what point I realized I was not going to get better if I didn't demand help from a different medical provider.

Traumatic Brain Injury is a path all it's own. Each as unique as the PTSD. It compounds a lot of the PTSD issues for me in that I don't always understand why I feel an agitation, or feel upset. Or worse just know something is not right, can see the reference to why it's not right, but I can't explain what that is. I think the worst part is where those who have no understanding of PTSD or TBI make very inappropriate jokes to my face. "oh I bet you're not going to remember we've met before", 'oh you're one of THOSE people who believes they have a "brain injury", or "oh you said (fill in the blank) last time but I bet you don't remember that..hahahaha" Usually the 'blank' is a highly inappropriate thing which I know as a woman I would not have said EVER. These things are not funny to me. Its not a joke this condition. It is no wonder to me that others with TBI, either diagnosed immediately, or later, or perhaps not at all don't seek out interaction with others. The fear of being made fun of, appearing to be 'slow', or being discounted makes it hard to be worth the risk.

There is a point when I have interacted with other persons with TBI that we find an underlying commonality. We may not have the same area of damage in our brains, it might be from IED or some other type of very profound injury but underlying it all there is a sameness to us. We have to ask for help, OK I think everyone I've ever interacted knows this. The reason isn't even about getting treatment, it's about finding each other to help each other. But most of all by gawd if I ASK for help? I've gotten to the end of myself to even be asking so I better be heard, and action taken. Don't discount me. Don't tell me nonsense of 'oh we're all getting older, I forget things too" THAT is not helpful and it's not OK.

It's not.

What I know now is this truth. My path has been totally alone. I didn't have a group to talk with, I didn't have others to connect with until far down the path. Even now it's still rare. The truth is this: we need each other. I forget this day to day as I discover this need to connect with others who are going through the same issues. The truth to this path of living with a TBI is that I just forget each day I get up that I need to connect with others who are living with this. I don't want to get to the place of terrible shame that I did with the PTSD before getting help.

Treatment, whatever that is for each person living with TBI is what it is. But it's beyond that where we actually heal. The connection to each other is the key. We are locks waiting for that key to open us back up. I'm stubborn, I just refuse to stay an unopened lock. I will search for that key every day because every day is a new day to start looking again.

We hold the lines together, we heal by reaching out and just asking "please help me."

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Comment by Bree N. on February 25, 2015 at 7:55pm
I'm very glad you are here Bonnie and I appreciate your comments so much hon!
Comment by Bonnie McKuin on February 25, 2015 at 7:20pm

It is the worst when a person tries to minimize your TBI... Our culture has a habit of doing that. This is why sharing the journey is so important. Your posts are incredibly helpful for me Bree. I am grateful to have found this support.

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