Anywho, The Husband is a soon to be former Infantry Officer and Infantry Officer are not allowed to have any type of defect. Ever. So, he's been learning to live with this memory issue for the last 6 years. He did such an awesome job of it, I didn't realize to what extent he had trouble remembering things until he started telling me.
In hindsight, I should have seen the signs: his cheat sheet of info went from a 2" square to a 2" x 8" piece of paper, his green books went from having little bits and pieces of info to being like a personal journal, he set reminders for absolutely everything and we'd have the same conversation over and over again. In addition to the memory issue, he had trouble with bright lights and wore his sunglasses more often than not. I assumed that was due to all of our glorious time in the deserts, but yah, turns out light sensitivity is a mTBI symptom too. So it took him about 4 months to get all of the referrals done, but eventually he was seen by a whole team of docs at Naval Medical Center-San Diego.
In hindsight, I should have seen the signs: his cheat sheet of info went from a 2" square to a 2" x 8" piece of paper, his green books went from having little bits and pieces of info to being like a personal journal, he set reminders for absolutely everything and we'd have the same conversation over and over again. In addition to the memory issue, he had trouble with bright lights and wore his sunglasses more often than not. I assumed that was due to all of our glorious time in the deserts, but yah, turns out light sensitivity is a mTBI symptom too. So it took him about 4 months to get all of the referrals done, but eventually he was seen by a whole team of docs at Naval Medical Center-San Diego.
The doctors explained to him when he started this process that he'd do all of these tests so they could figure out the best treatment plan. They told him that each person is different. They told him there is no standard treatment plan. During these evaluations, he learned that not only did he have memory issues, light sensitivity and ringing in the ears, he also had issues with balance. He learned that after they hooked him up in a harness, moved the floor around, and he couldn't stand up. He did a 6 hour brain test session and left feeling like he'd failed every part of it and needed to go back to Kindergarten. He sat still for a 40 minute MRI, which for a guy who doesn't sit still, was an eternity. His appointments ranged from him feeling like he was really messed up in the head to feeling like he was curable to feeling like they all thought he was making it up. He got medication for headaches, migraines, and lack of sleep (evidently 3-4 hours per night isn't nearly enough). He was given therapy guidelines for his balance issue. He was given tools to help remember appointments and events. But he still can't remember more than he could 6 weeks ago when we started this process.
However, they didn't explain to him that there isn't a "cure" for mTBI. It's not like a broken arm that they cast, do physical therapy and 6 weeks later it's like it never happened. There isn't some magic pill that makes your memory return, your eyes react to sunlight different and your ears stop ringing. There just isn't. The Husband went through this process expecting that he would be "fixed" by the end of it. So, when he left his latest appointment on Friday without a magic cure, he felt incredibly frustrated. He was testing within "normal" on all of his memory testing. His 6 hour brain test came back as "normal". His MRI showed no lesions on the brain. He obviously doesn't have any cognitive issues. So, he was feeling frustrated that he'd done all of these tests and was actually made even more aware of how mushy his brain was than he realized it was, only to have them say "Oh, well you know, you're scoring within normal range, so good luck!".
But here's the thing about mTBI and The Husband. He's been learning to live with it for 6 years. So the therapy that is new to the doctors is the "therapy" that The Husband figured out a few years back. One of the first things the docs recommended was using the reminder feature in your phone to help with appointments. He's been doing that for years. They recommended taking notes in a book that you carry with you. Been there. Done that. During his appointment, he explained to the doctor he was frustrated that his test results were coming back "withing the normal range" when he felt like an idiot. She explained that his old normal was well above his new normal. So, while he's scoring fine now, if they'd tested him *before* they blew him up, he'd probably tested off the charts. But you know, Army doesn't think they need a baseline for each soldier. They think that this injury that affects everyone differently has one common testing level diagnosis. Go Army.
I'm thankful he went through this process because it also encouraged him to go in for PTSD evaluation. His first Neurologist explained that as they treat the mTBI, it'll cause any/all PTSD symptoms to show up because typically the TBI is wrapped around a traumatic event...so it's like mTBI is the hot dog and PTSD is the bun. You can have one without the other, but it's not nearly as good. Now here's the interesting thing--when The Husband went in for his mTBI evaluations it lead to 5 different appointments with different departments to get a full evaluation of the mTBI, but at no point did any of those evaluations include a PTSD evaluation, even though they recognize the two go hand in hand. And so he doesn't have his first PTSD evaluation for another few weeks because it takes 4-8 weeks to get into that doctor here. But, at least he's going.
We haven't been shy about discussing his mushy brain either. We talk about how Daddy has to go to doctor to have his mushy brain looked at. In fact, the other day, Sam-I-Am asked where daddy was the other day and I replied "San Diego". She paused for a moment and said "to get his head checked?" The kids know that Daddy has to write things down and they now know through this process that yah, Daddy got a boo-boo, but he's working to make it better. Ironically, a week before he was scheduled to be seen at NMCSD, he was a little too close (like within 75m) of a few mortars exploding, so we all got to see what The Husband was like post explosion...a little groggy, a bit dirty, and a whole lot of headachy. So the kiddos assumed that boo-boo was the primary reason for all of these doctor appointments. Thing 1 understands that some of this is from when The Husband was in Iraq, but I don't know if he's put two and two together. With the guys at work, it's a joke, but it's also something they've asked him for advice on and how the process works. So while his Commander is telling his wife "hey you know how we thought he was just a note taking fiend, yah, turns out he just can't remember anything!", he's also being incredibly supportive and understanding of The Husband being gone for appointments and asking him how it's going. The members of his team are the exact same way. At no point has anyone treated him like he's got some nasty disease. And for that I'm eternally grateful.
We haven't been shy about discussing his mushy brain either. We talk about how Daddy has to go to doctor to have his mushy brain looked at. In fact, the other day, Sam-I-Am asked where daddy was the other day and I replied "San Diego". She paused for a moment and said "to get his head checked?" The kids know that Daddy has to write things down and they now know through this process that yah, Daddy got a boo-boo, but he's working to make it better. Ironically, a week before he was scheduled to be seen at NMCSD, he was a little too close (like within 75m) of a few mortars exploding, so we all got to see what The Husband was like post explosion...a little groggy, a bit dirty, and a whole lot of headachy. So the kiddos assumed that boo-boo was the primary reason for all of these doctor appointments. Thing 1 understands that some of this is from when The Husband was in Iraq, but I don't know if he's put two and two together. With the guys at work, it's a joke, but it's also something they've asked him for advice on and how the process works. So while his Commander is telling his wife "hey you know how we thought he was just a note taking fiend, yah, turns out he just can't remember anything!", he's also being incredibly supportive and understanding of The Husband being gone for appointments and asking him how it's going. The members of his team are the exact same way. At no point has anyone treated him like he's got some nasty disease. And for that I'm eternally grateful.
While this process has had it's highs and lows, exhausting and expensive (big shout out to OPS GROUP and their 'no, we don't pay for travel' policy letter), I'm glad we went through it. If for no other reason then when in 20 years he develops early onset dementia, the VA will help pay for his care. You know assuming the VA is still around. So while it's still a process, it's a process that's worth going through and we're going to keep on, keeping on.
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