After almost 14 years, it’s hard to separate Jeff’s brain injury from everyday life in our house.
There are things we do because of his TBI that I don’t even think about anymore. We’ve adjusted routines, changed how we communicate, and learned what works and what doesn’t. Somewhere along the way, we just stopped thinking about most of those things as adjustments.
Sometimes I even forget how much Jeff is dealing with until he reminds me.
At some point, I think we accepted that this was just part of our lives. We didn’t feel like we had many options left, so Jeff put a smile on his face and carried on. There were also things going on with him that I don’t think I realized were even related to his TBI.
Some of this is hard to share because a lot of it feels personal. Jeff also doesn’t like to draw attention to the things he struggles with because he doesn’t want them to be viewed as a sign of weakness.
I also want to be clear that every brain injury is different. I’m not trying to explain what living with a TBI looks like for everyone. These are simply some of our experiences and what living with Jeff’s brain injury has looked like for our family.
The things that probably impact him the most day to day—and are likely the most obvious to other people—are his short-term memory and his ability to process and retain new information. Relaying information back to someone else can be difficult too, so communication can sometimes be hard.
He needs a lot of reminders. Sometimes when I’m explaining something, I have to break it down into smaller pieces for him to process it. For years, that has been the easy way for me to explain Jeff’s TBI to people: his memory and his ability to process information aren’t what they used to be.
One of the stranger things to me is the difference between Jeff’s short-term and long-term memory. His short-term memory has been greatly affected, but somehow his long-term memories seem to be very much intact.
The man is basically a vault of music from the ’70s, ’80s, ’90s and 2000s, along with an impressive collection of movie quotes and other completely random information. Put us on a trivia team and suddenly Jeff is our secret weapon.
Brains are weird.
But in reality, his TBI is so much more than his memory.
There are so many little things woven into our everyday lives, and some of them are things Jeff just deals with silently.
His overall mood and ability to regulate stress and emotions have been affected. I would probably describe it as having a “shorter fuse,” although we’ve seen improvements in that through the years. I wouldn’t describe Jeff as someone who has angry outbursts. For him, it’s more likely to show up as agitation or becoming overwhelmed. He also seems to carry a level of stress that can be hard for him to turn off.
He’s sensitive to certain bright lights and sounds. Sudden loud noises or certain high-pitched sounds can cause him to physically wince. He has also dealt with frequent headaches and migraines through the years. Some periods have been worse than others, and thankfully some of that has improved with time.
Of course, raising three kids doesn’t exactly lend itself to a quiet house. There isn’t always a silent place for Jeff to retreat to when the noise becomes too much, and there have definitely been times when normal kid noise is just too much for him. That’s one of those places where his TBI and regular family life collide, and we all just do our best to work around it.
Over the years, we’ve learned what helps make everyday life a little easier.
I have ADHD, and I thrive on a solid routine. As it turns out, that routine probably helps our entire household function. I eventually realized just how much Jeff thrives on routine and repetition too.
The difference is that if something comes up and our schedule changes, I can usually adapt pretty quickly. Jeff has a much harder time doing that. Sometimes he becomes fixated on whatever changed.
He can also hyper-focus or ruminate on something. If he loses something, for example, he can become so focused on finding it that it becomes difficult for him to do anything else—even if whatever he lost really doesn’t matter. It took me a long time to recognize when that was happening, and getting him to move past it isn’t always as simple as telling him to let it go.
Planning can be difficult too, especially when something involves multiple steps. I know now that I either need to write things down for him or he needs to take notes. He always has notes and reminders running on his phone. If too much information starts coming at him at once, it can almost seem like he shuts down.
So on a normal day, I try to keep this house running like clockwork.
Wake up. Morning routine. Kids off to school. Everybody comes home. After-school activities. Eat. Sleep. Repeat.
Jeff’s parents gave us a Skylight Calendar for Christmas last year, and it has been a tremendous help. I used to live and die by the paper calendar hanging on the wall because we needed something physical that everyone could see. With the Skylight, we didn’t have to give that up, but now it also syncs with our phones. If I add an appointment, Jeff can see it on the calendar and have it on his phone, and vice versa.
Total game changer for this house. We love it.
There’s also a part of Jeff that struggles with new environments. That can mean traveling somewhere he’s never been, but it can also be something as simple as being in a large group or around a lot of new people.
Jeff is normally pretty chatty, but in those situations he can become much quieter and more reserved. Sometimes that quietness can come across as grouchy or even a little standoffish if you don’t know him well, but it isn’t intentional.
I think some of it comes from being self-conscious about the things he knows are harder for him. He may know exactly what he wants to say, but getting his thoughts out while also taking in everything happening around him can take more effort. The last thing he wants is for someone to think he’s slow or doesn’t understand what’s going on.
Over time, I’ve learned some dos and don’ts—things that help and situations or places that might be better to avoid. Sometimes all of my planning works beautifully. Sometimes it doesn’t.
If Jeff gets out of sorts, he becomes tense and has a hard time relaxing. When it gets to that point, it’s obvious to me that he feels miserable, and I know it isn’t something he can simply switch off.
I tend to over-research everything anyway, so before we go somewhere new, I usually try to figure out what we’re walking into. I tell Jeff the important things ahead of time, or even better, I show him a YouTube video so he can actually see what to expect.
A few years ago, Jeff went on his first cruise. I knew embarkation day would be hectic, so I did everything I could think of to prepare him.
Then somewhere along the way, in all the chaos that embarkation day can bring, he became overstimulated and started struggling. It took the first couple of days of that cruise for him to really settle in and relax.
Despite the rocky start, he ended up loving it.
Since then, I’ve made a few modifications to how we approach embarkation day so it works better for us, and cruising has become one of Jeff’s favorite ways to vacation—especially with the kids. I joke that “Vacation Jeff” is almost a completely different person, particularly when we’re cruising, because once he settles in, he can actually relax.
No matter how much we plan, though, there is always going to be some element of surprise. Situations that might roll right off my back can take constant work on Jeff’s part to acclimate to.
Understanding that took some rewiring of my own brain too.
At some point, I realized that the way I approach something can affect the way Jeff approaches it. The more positive and calm I can stay, the better chance there is that he’ll feel that way too.
Sometimes that works better than others.
This still doesn’t cover everything about what living with Jeff’s TBI looks like. It’s simply some of the things that have become so normal in our lives that sometimes I forget they aren’t normal for everyone else.
And maybe that’s part of why it took us so long to start looking for more answers again.
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