erinrus

What’s that Smell?

My husband can no longer handle floral smells or strong smells including perfume, candles, incense, smoke, or strong smelling lotions. I have adapted and only wear perfume occasionally and only sparingly. I probably need to stop all together.

There are times when it seems like he can handle it better. Lately, it is like it’s getting worse for him. Not sure why. His reaction is not an allergic reaction. He doesn’t sneeze. He may cough at times. He will stop dead in his tracks, shake his head as if to clear it, and say, “ugh.” He will attempt to rub his nose to try to clear it. He will be able to function through it but it’s unpleasant. Times when it is worse are first thing in the morning, if he’s not expecting it, after or during a workout, soon after a nap, or just before bed.

Ways in which this has changed behavior for me and even others – I no longer wear perfume often. Honestly, not such a bad thing. It’s a luxury that saves me money. Perfume is expensive. My mom likes to burn incense in her home. She’s stopped though, or, at least when she knows John is coming over. John had a hard time being in her house the last time we were there because it was so intense for him. This has also happened to a friend of ours who lived with us for a year. She was unable to burn incense.

I felt bad the other day when we were driving together. I needed some lotion which I carry in my car because we live in a dry climate. I used some but realized too late that the lotion was a strong smelling lotion. We were confined in the small space of the car and I knew instantly it was overpowering. I apologized. This time, it didn’t seem to bother him as much, thankfully. I need to start buying non-scented lotions.

This sensitivity to smells is annoying but usually not really debilitating. I am grateful to my friends and family for changing their behavior to help John be more comfortable.

Grocery Shopping

We had a date night earlier this week and we went grocery shopping. I know, not very sexy, but it’s soooooo much easier to get the shopping done sans child.

John handles most of the grocery shopping for our household. As I’ve written before, each time he goes, there is usually a story about the outing that I get to hear, whether it was winning over the grumpy cashier and hence making a friend for life; being flummoxed by asking where the lard was located and then being directed, over a full on hollered exchange between the stocker at the back of the store and the cashier at the front, that it was in the baking aisle, no wait, the Mexican aisle (still labeled as Mexican/Oriental by the way); or debating politics with the guy behind him in line; or punching the self check out register. Yes, you read that right, punching the self check out register. Two stories follow.

The first is an experience I had with John the other night. Going to the store is tough because of the many external things going on in that environment – fluorescent lighting, music pipped in from speakers that are sometimes shot, many customers walking around, and other sights and sounds. For a person with a TBI, this environment is hard to deal with. On this night, John and I navigated through the store and got what we needed without incident. We made our way to check out. Depending upon what I am buying, I will go to the self check out section but, if I have light weight items or lots of veggies, I will choose the in-person cashier. John was working from some outdated assumptions about my preference for self check out and steered us that way. I hesitated for a moment but just went with it.

Standing in front of the register, the cart to my left, John to my right by the bags, I began to scan and bag. I got to a bunch of powder drink mix packages that don’t have much weight to them and started having problems. The scale didn’t read the packages well and the machine began to tell me to replace removed items from the bag or to place the item in the bag. It froze up and started blinking. Meanwhile, John was to my right, blood pressure rising, lots of heavy, loud sighing going on, and the beginnings of mumbled curses. I knew I needed to stay calm and handle the situation quickly or he’d only get more and more agitated, feeding off my own annoyance.

I turned around and saw the cashier who was working the self check out area to help and noticed she’d been very close this whole time and had likely been aware of our issue before the light even indicated a problem. I also noticed she had not yet moved to help us which irritated me. She pretended like she didn’t realize there was a problem and oozed obstinance at my issues bothering her. God forbid she have to deal with an annoying situation at work. She told me to try to continue to scan items which I did and the machine magically began to work again. Well, the minute she turned away it stopped working. I turned, this time ready to be a bit more pointed and saw the young woman had been replaced by a different lady who was more customer focused and was ready to help with a smile. She guided me through the remainder of the process, bless her.

It’s difficult to explain the complexity of this one moment. There were many things occurring all at once and, really the entire scene was only a few minutes long. It was tense and I sighed a breath of relief when we’d paid and were heading out. John the entire time was grumbling and gnashing his teeth and commenting that he was about to punch the register machine. Amazingly he was able to hold it together and not cause a commotion. We were able to go about our lovely date night without incident. I expressed to him later how happy I was that he restrained himself.

The second story I learned of that same night while we were eating. It happened some time ago. John was at the store solo. He was waiting in line for a cashier. This meant waiting in a longer line than what was currently at the self check out but he knew his triggers and made the wise decision to wait a little longer for person-to-person help. A well meaning but eager assistant manager approached John and told him the self check out was open and quicker. John tried to decline but the man was persistent, assuring John he would help him and it would be easy. Famous last words. A similar issue as in the first story occurred during the process and at a point when the assistant had thought John had it under control and was not needed. John couldn’t resolve the issue on his own, couldn’t get the assistant’s help, and who knows what else mixed together but it was volatile. He lost his temper and punched the machine, likely yelling and cussing at it too. I’m sure it caused quite a scene. I don’t believe the machine was damaged, thankfully, and John was able to get the check out process done and he left.

John, at least in my presence and when Eva is around, does not behave like this. There are moments when he is a breath away from it but doesn’t. It’s easier I think to let the emotion get the better of him when we are not around. When Eva or I are around, he desperately does not want to embarrass us or do something that will get us in trouble or cause problems.

It is not okay for John to behave like this. It happens though. He does what he can to avoid things that will trigger him. He will go shopping only if he is rested and tries to go only during less crowded times. He also readily asks people to excuse him because he is brain damaged and has issues speaking or doing certain tasks. It’s actually easier for him if Eva and I are not with him when he is actively shopping. If we are there, one or both of us are more likely to interrupt his thought process and he may forget things, even if it is written on his list. It drives me crazy but I have to refrain from running ahead to grab items. It’s my way of helping and being efficient. It may seem helpful but for him it’s chaotic. He can’t recall what he can check off the list or not. Eva will want to push the cart or ride on it. John cannot deal with that as it’s even more stimulation. When we go to the store as a family, I will typically take Eva to the toy aisle and entertain her while John is shopping and checking out.

Even though the experience of grocery shopping can be difficult for John, I let him do it. I think it’s one thing he can do decently well that is a huge help to the family. He cannot work and struggles doing other household things. This is one of those that he can do. I can step back and let him. Most of the time it all goes well with no major problems except maybe forgotten milk.

Household Chores

Let me tell you, it’s a good thing I’m a planner. The amount of forethought that goes into vacuuming the house is insane. The noise of the vacuum for John is untenable. When I need to vacuum, I notify John of the need and my plan to do so days in advance. Then, when the appointed day comes, I check with him before I begin, unless for some amazing reason the planets have aligned and he plans to be out of the house. If home, he will lock himself in our bedroom, door closed, with some sort of white noise on. I try hard to not vacuum our bedroom until he is out of the house. If he’s downstairs in the basement, forget it, I cannot vacuum anywhere. He says it sounds like a grinder crunching its way through the house and is totally overpowering for his brain. He says it makes his teeth rattle and his jaw clench. And, we do have one of the quieter vacuums!

The dishes are easier but still take thought and care on my part. I try not to put the dishes away (what with all the clinking and clanking that occurs) until John is mentally rested or doing something else such as taking a shower or working out, or even resting in the other room. While I’m not obsessive about it, I do make a concerted effort to put the dishes away quietly. I’ll stack the plates gently on the counter and then transport them all together to the cabinet. I’ll softly, as much as possible, place the glasses and mugs gently onto the shelves. The silverware is more difficult.

He’s never complained about the laundry but the noise of the washing machine and dryer going I think bothers him a little bit. He will close the laundry room door if they are running. But, I don’t have to alter my cleaning plans to get that job done.

Other than I don’t do chores while he’s sleeping or actively resting because I’ve woken him up before by sweeping, mopping, or even dusting; other, quieter chores don’t seem to be as much of an issue. (John wakes up very easily. It’s a hyper-vigilance he obtained whilst in the Marines.) He gets a little gun shy when I clean. He tells me that I walk as though I’m angry and with a stern look on my face. I always tell him that I’m not angry, just focused on the task at hand. I guess no one in the house, including the cats, like it when I’m cleaning because of this angry, pissed off vibe I give off, which is totally unintentional. Maybe it’s an inherent vibe those who clean give off, non-verbally telling all in close proximity to stay out of the way so the job can be done quickly, efficiently, and effectively.

Broken Lights Nearly Killed the Night

Recently, we decided to go for a drive to appreciate the holiday lights. We stopped at a nearby Sonic to buy dinner. As we were making our way through the drive thru we noticed that 2 or 3 flood lights on the Sonic building were blinking on and off in a random pattern. I noticed them nearly immediately but also acknowledged that they were not that bad, annoying but okay for the brief time we’d be in line. This was the case until we were skirting the side of the building and still 3 cars back from the pick up window. By the time we made it to the second car back, and pretty much right next to one of the flickering lights John began to complain that it was really messing with him. It was bad enough that it may have been a treacherous situation for someone with epilepsy. It was the right sort of random on-off pattern and just visible from the peripheral vision that anyone with a TBI would likely struggle.

John tried to close his eyes, put his hand on the side of his face, and roll up the window but nothing helped. I was trying to think of how to resolve the issue but still get our food in the most non-obnoxious way possible for us and the Sonic employees. Nothing was really coming to mind though and we were boxed in by vehicles around us. We were finally able to pull forward completely and enough away from the lights so they were no longer a major problem.

We got to the window and John asked to speak with a manager. John kindly let the manager know how bad the lights were, why there were for him, and to please fix them. The manager let us know that a work order had been placed but hadn’t been addressed yet. He handled it well. It was just one of those unfortunate situations that none of us really had a lot of control over.

It’s instances like this that nearly derail our plans for a nice family evening outing. John was able to pull through but if we had been there much longer, we very likely would have had to go back home due to John becoming symptomatic. It could have even reached the point where I would have needed to drive us home, which has happened a couple of times in the past.

Fortunately, this time, we got our food and left and had a lovely evening out together.

A light tunnel.

Can you Hear This?

Last Friday, I took a few hours off from work and decided to start the weekend early by taking a drive with John. To begin, we picked up Eva from Kindergarten and drove her to her daycare. That day, Eva had received some early holiday things, one of which was a small bell. She wanted to play with it in the car. Before handing it back to her I shock it and asked John if he could hear it. He could not. I was not surprised but I wanted to be sure before I allowed Eva to start playing with it whilst John was driving.

John has hearing loss from the abuse his ears have endured over the years of him being around guns and explosives. He also has tinnitus. I’m unsure if he has any hearing loss from his TBI. With his TBI, he has an increased sensitivity to background noise that most of us can generally drown out and ignore, but only when those sounds are in a frequency range he can hear.

A learned behavior for me has been to be his ears. High frequency chimes or tinkling bells sound like clicks to him. Some of these include an egg timer, an alarm on a wrist watch, the beeping of the Instapot, or holiday bells. He cannot hear crickets and hasn’t since he was in high school. He sometimes has trouble hearing my voice and often struggles to hear Eva’s voice because of the tendency for female voices to be higher.

Because of all this, I step in and let him know when the timer telling him something he is cooking is going off. He had actually stopped wearing watches because he had too many experiences of people annoyingly asking him to turn his watch alarm off. He literally is unaware of it. I interpret for him sometimes with Eva or when we are out and about and interacting with someone. I repeat myself a lot and try to get his attention and look at him before I say something to him, or raise my voice a smidge if not. I’ve had to close the window on a summer night before because the beautiful sound of crickets are keeping me awake. He’ll ask, “Why are you closing the window?” And then laugh when I vent about the noisy insect neighbors.

At other times I am his ears and interpreter when there’s too much of an echo or too much background noise, such as at a restaurant or at a grocery store check out line. But, that is different.

I know it’s not coming across here as something we laugh about but the bell thing was an instance of that. It’s not a funny, laughing at dad thing but more a making light of a crummy situation thing that we all appreciate.

Damn the Unexpected

Perhaps all people who have a TBI learn to plan and schedule their lives in an effort to manage their TBI and the ever looming symptoms – headache or worse headache, vertigo, fatigue, irritability, inability to do anything but go to bed and rest/sleep until symptoms dissipate. John certainly does this and it is a great help.

This is all well and good until the unexpected happens. I want to explain a situation that seems to me to be a very typical, mundane example of a way in which the unexpected has the ability to disrupt an entire day. I say mundane because, for me, this happens frequently enough so that it is no longer quite as jarring when it happens, at least to me. I suppose I expect the unexpected but am sometimes surprised when it occurs.

This past week, on Monday, we awoke to the first snowfall. It was enough to need to clear the driveway, clear and warm the car, and delay the commute. John was preparing to take Eva to school that morning. I was helping. I am unsure what order of operations he had in his head for how preparing for the morning would go but it did not go in that order and his OODA loop (if you don’t know what that is, this site offers a good explanation) was disrupted. Stay with me as I explain the details of how things derailed.

Eva was getting ready for school: brushing teeth, getting socks and shoes on.
I was simultaneously making breakfast for myself, trying to dictate to her what to do next (recall she is 5), and making sure she had her backpack ready.
John needed to take my car that day so asked me where my keys were. I told him in my purse, which they typically are.
John grabbed my purse, put his snow boots on and went outside to start warming up my car.
I continued to do all the above mentioned but then slowly started to realize John likely was going to need some help getting ready that morning, with the snow. I had a fleeting thought to also put my boots on.
Eva had finished getting ready (minus her backpack) and was anxiously wanting to go outside to play in the snow.
As I walked her to the front door and opened it, John was full bore making his way back inside the house and saying to me, “Your car isn’t reading the key fob” while Eva was trying to make her way around him to get outside. It was a bit of a cluster.
I recalled that I’d left my keys in my coat pocket. Without telling John this (I was going into full help-John and Eva mode), I put on my coat and grabbed the closest boots I could find, as well as the snow shovel.
John went back outside to do something. Eva was outside playing.
By the time I snow shoveled a path to my car (not wanting to step on the snow to pack it down and make it nearly impossible to clear away) and started my car, in the process throwing off a windshield cover of snow over to the front passenger side of my car, where John was unbeknownst to me, standing, he was frustrated and nearly into a bad/fuzzy brain day. This all in a matter of a few minutes.

When I threw off the snow, I head a humph from him and realized he was struggling. I wasn’t really quite sure why though. When he began to tell me that by my coming out to help and Eva coming out to play, we’d disrupted his OODA loop, I’m sorry to say I nearly laughed. I smiled and told him to calm down, all would be well. I offered to take Eva to school because John was explaining further to me that he’d had a plan for the morning that had already been completely disrupted. I was close to laughing because, to me, it seemed all so simple and easily adjusted to, certainly not something to get upset about. The first snow can set the best of us to asunder after all. But, he was really having a hard time adjusting.

John ended up taking her to school and came home to rest. It took him a bit to calm down from the disorder but he did. This all was likely compounded by the fact that he had just returned home the Saturday before from a long and tedious drive home from a fishing trip that left him symptomatic (full on with vertigo, a raging headache, word recall issues, slurred speech, one eye lid slightly drooping, total inability to handle more than one thing at a time). He still hadn’t recovered from that even though Sunday had been restful. The disruption of events on Monday still impacted him. Actually, the next day, Tuesday, he was still so fuzzy that he took a very early nap and slept 4 hours straight, getting up in enough time to eat dinner, help get Eva ready for bed, and going back to sleep at his normal time. Today, Wednesday, I think he is finally rested enough to be back into a good brain day.

Lesson learned? Not really sure there is one. It’s just an explanation of a day in our life.

Positivity

Let’s speak about staying positive or finding joy and room for compassion even when times are really tough.

I am a positive person. I don’t mean that I am giddy or overly happy, not positive like that. I am a serious, quiet person; all-be-it with a quirkiness that some find to be endearing and some find to be annoying. Overall, I have a general positive outlook on life, including the bad moments.

It’s this aspect of my personality that I think is one of my greatest strengths when it comes to being in this situation. It also is tremendously helpful that I have a husband who is willing to give it his all every day and work towards trying to help out when and where he can and contribute to the team. If it weren’t for that too, I’m not sure we’d still be together.

Staying positive is a natural place I tend to land emotionally but there are times when it’s harder to do so. There’s times when a situation can feel so demoralizing that it feels like you can either throw in the towel or succumb to the misery.

I recall a time within the first year or two of John’s accident when I was driving home one day after work and, suddenly, I asked myself if I wanted to stay in the marriage. If I thought I could handle it or if I wanted something different for myself. I nearly pulled the car over. The thought was so sudden, as if someone else put it in my head. It took my breath away. Thinking back, this situation likely occurred after John and I started to really comprehend and understand that he wasn’t going to fully recover and that life was going to be different, and that with the aging process or another injury, things could get worse. I was seeing a therapist to help me navigate the grieving process and helping me to understand the new reality. Immediately, I gave the thought consideration. I realized that it was a moment I needed to be brutally honest with myself – a looking at the woman in the mirror moment. The minute I began to think about spending my life with someone else or a life without John in it (we didn’t have children at this point), was overwhelmingly repulsive. I nearly began to cry because it was a heartbreaking thought. I could visualize, and was eager, to experience my future with John even through the pain we were both experiencing at the time. I could not visualize my life without him. And, that was my answer.

I don’t know if it was that same day but I did tell John about this. I’m sure it scared the pants off him for a moment but then hopefully confirmed for him that I wasn’t going anywhere. Now, years later, I am grateful that I did not leave. John has by far been worth all the bad times. Even though life is a struggle at times with him, he supports me in all encompassing ways that I haven’t found before and I’m not sure I would be able to find in someone else again.

This is just one example of many. I think staying positive is really about making a decision to be positive, to look on the brighter side. I often say things like, “What lesson am I meant to learn with x situation?” I actively think about potential outcomes, in a positive way, and how a bad situation might help me be a better person or might be leading me in a new, better direction that I would not have otherwise gone. It is actually a pretty simple thing to do. It is difficult in the moment at times to not wallow in my own pity-party, and sometimes I spend way too much time in that wallowing, but I always rise out of it.

I think another thing that helps me rise above the muck is something I remind myself of often – I can only control my own emotions and own life. I cannot control other people. Realizing this in stressful or depressing situations offers a sort of serenity. It’s also a way to keep from getting too negative. After all, if I am in control of my emotions, then I can decide to stop letting something bother me.

Like I said before, staying positive and striving for a better outcome keeps me sane in this TBI journey. I think it also helps John to remain calm. In this way, I can at times be a guiding light for him. I can pull John out of a really negative, bad mood and get him laughing and smiling.

Just Don’t

A few days ago, I responded to a post on social media where someone had asked how “we” (other TBI partners) keep from contacting the family or person who was driving under the influence and that caused our husband to be injured. I am usually a non-contributing, silent member to the group but this post elicited a quick response from me. I wrote, “Just don’t. It won’t make you feel any better and you don’t know what the person or family are experiencing.”

I have considered the speedy and action inducing reaction I had in more depth and it prompted me to write here. This last TBI was caused by a young man who was high on cocaine and marijuana, and drunk. He decided to get in his car and drive home. He was speeding on an icy road at night and ran over John, who was working that night.

I’m not sure that forgiveness is the right way to explain my response to the young man who caused John’s world to change. I suppose I have forgiven him but it’s more of a feeling of not wanting to dwell on something I have no control over. Is that forgiveness? I rarely think of that guy now. Maybe John thinks about him more often. I don’t wonder what he’s doing now or if he learned anything from the accident and subsequent court hearing, or, if he stopped driving under the influence. I should hope so but it’s not my life. He’s not my concern.

I advised that woman not to give in to her justified feelings of rage and pain and reach out to that person/family because I don’t think anything good would come of it. I am not a vindictive person and don’t often feel the need for revenge but I don’t think lashing out like that would make her feel any better and it certainly wouldn’t make the other group feel better. As I said, she doesn’t know what that family is going through. They have their own demons to come to terms with. You hope they do feel remorse and hope they won’t get behind the wheel intoxicated again but it’s out of our control.

In my experience, it’s best to deal with the things I do have control over, my own life and emotions, than to spend time in anger and victimization over something that has already happened and is done. If I do that then I find myself in more pain and anguish than before. I choose to live life with love and joy and to cherish the many good things. Maybe I can say that more easily now that there is a decade of time between the accident and now.

The Parade

I have to share a success story. I’m still a little unsure how I was able to defuse John and myself and ended up having an enjoyable evening. But, it was quite enjoyable after all.

Each year, we drive to a nearby community, about an hour away from us for their annual holiday parade. This year was no exception. We figured with our face coverings and it being outdoors that it would be pretty safe to go.

I looked up the start time for the parade, which was listed as 6 pm, starting with a fireworks show, immediately followed by the parade, with Santa making an appearance. John made sure to take an early nap so we could leave the house with enough time to get there, get parked, and find a place to stand on the parade route.

All was going along as planned and it looked like we were even going to be a little early until we saw fireworks starting when we were still a few miles away. By this point, we were coming into town with the speed limit dropping and multiple slow moving vehicles in front of us. There was no pushing the speed to pick up the pace, which only added to the stress. Eva was sleeping in her car seat. John began to fume and vent about the city offices getting a piece of his mind later and angrily figuring out how we were going to break it to our 5 year old that we’d missed the fireworks and maybe the parade too.

I realized we had no control over the situation. We were on time, per directions about the event in the local newspaper. We couldn’t do anything about the early start. We couldn’t do anything about much of it other than try to make the most of it all. I put my hand on John’s leg and soothed him by telling him that it was all okay and not worth getting upset over. That even Eva would be fine. It would be a bummer but a good lesson for her that we can’t always get what we want even when we do our best. Somehow this worked for John. I do this other times and it doesn’t always help. He began to relax by a degree.

I woke Eva up and adjusted my seat so she could watch the fireworks. We were also able to tell her the situation. She responded really well, just accepting it. We got parked as quickly as we could and ran to the parade route. The parade was already going but we caught it enough to get some really awesome goodies, candy, and to see Santa.

We were there a very short amount of time but Eva had a great time, John was able to chat with the local law enforcement (something he always does if there’s a cop around), and we didn’t get cold. We couldn’t get to the nearby fast food place we typically go to afterwards because of the crowds so jumped back into the car and drove back to our town and went to a local place near us that just reopened after a remodel. Eva was excited about this because it’s one of her favorite places and we hadn’t been able to go for a few months.

Overall the evening ended up being really fun and we all had a good time. Talk about making lemonade out of lemons. I’m not sure why my calming techniques worked this time. I think maybe it was in part because I didn’t let myself get stressed out about it, which I typically do because I really dislike being late or rushed. Typically, John has to deal with his feeling like he’s always the one making us late, plus my feelings of being let down. And, Eva didn’t get upset about it either. Maybe that had something to do with it.

Cool light up sword given away at the parade.

Which Pigeon?

To understand this post, you’ll need to watch the linked video, with the sound on, here: https://www.pinterest.com/pin/839921399251532081/

Okay, hopefully you found that to be as funny as we did. Actually, it became a little annoying because John found it so funny that it kept replaying for about 5 minutes, or it seemed that way. Ha!!

Now, a question. Which pigeon do you think has the TBI in the video?

Go ahead, you can watch it again.

The second from the left, the one sitting down. He/she/it really looks to need a rest from the chaos of pigeon life. I don’t know what that pigeon on the spinning vent is doing. He/she/it must be really having a fun time. Ha! Ha!

Beware your bias on disability and what disabilities look like. Many disabilities, and for that matter many things people are dealing with, are invisible.

Happy Thanksgiving!