ThE WoRdS DiSsApPeAr… TBI and me.

Tonja and Service Dog Duke! By Julia Kuzamenko

 Shell Shocked & Speechless…

Being a person who didn’t get diagnosed with my TBI right away, I knew something had changed. I couldn’t exactly pinpoint what was different, but I didn’t see the same and I didn’t think the same. So I started to adapt what I knew of people with learning difficulties and began applying these learning tips to my life. I couldn’t concentrate well initially. That has gotten so much better. Playing solitaire on my phone when I couldn’t sleep was a way to get my brain to process numbers and colors in the right directions. I also had to match shapes. It was very slow and difficult for me in the beginning. I still to this day, play, I am not fast or great at the game. I do it as a way to keep my brain thinking. With the photography, I had the basics down, I knew a bit about design, and I needed to keep learning. Technical learning has always been more difficult for me, so coordinating the language of shutter speeds and apertures and what those things do, and coordinating them with the buttons on the camera is a good exercise. When I get tired, these synapses fire more slowly and it becomes harder for me to make the connections. Jason helps me so much with this. I’ll often hand him my camera, and point and can’t really even speak the correct words. The more tired I get the less good speech I have. 

Above is what was on my Facebook post after reading this blog post LOST & FOUND What Brain Injury Survivors Want You To Know.  This post gave me a good way to share how my Traumatic Brain Injury affects my life.  Everyone is different, so this is my experience.

I do get tired quite fast.  If I have my adrenaline kicked in or I’ve taken a medication that acts for me like an adrenaline I last longer.  I take this mediation in order to drive, it keeps my blood pressure up high enough which also is a big deal.  Can’t drive if you are dizzy.  Not that I drive much.  You may have heard of The Spoon Theory.  I live a distance away from most things I need to do so I must balance my day and efforts against what I have on my plate for the week before and the week after, not only the day.

Being an independent and self motivated person, I am driven to improve.  Having these set backs after the accidents it gave me the persistence to persevere.  I didn’t have a therapy plan for my cognitive deficits.  I was still as smart as I was before, I’d just lost some of the ability to function in an orderly, quick, and reliable fashion.  Oddly enough the first brain injury test I got sent to was an IQ test of sorts with a psychiatrist that thought I was just over medicated.   I’d really like to have a talk with that lady now.  I couldn’t even walk around on my own, I had to be held.  Oi.  This speaks volumes about the medical “professionals” that I discovered.  I used to have a great awe of these medical professionals.  I had no concept of how narrow minded and jaded they are.  Or have been taught to be, that being said, they allowed this to happen to themselves, and they should have made changes to assure that their education was able to help people not just shuffle people.

Social situations are difficult, I enjoy seeing and speaking with many people.  I now can’t make eye contact across the room very easily and negotiate a conversation from there.  I no longer can see the whole crowd, I just see a few in it.  I am sure my eyes see the whole group, I just can’t pick out distinctions as well as I could before.  I’ll remember people for sure, but not people who didn’t register in my brain.  This seems weird to say.  I come across to people oddly I am very sure.  I really try to make a point to connect with the people that I do speak to.  Which means a bunch of other people could easily be ignored unintentionally.  But it happens.  I can’t listen to multiple conversations, in fact when more than one conversation is going on I have a very difficult time listening to even one of them and comprehending what is said.  This is very hard for me to do.  Even in smaller environments, lots of things going on is hard.  It is also difficult for me to speak with someone sitting next to me, much easier to speak with someone straight across from me.  I can’t read their lips while I listen and turning my head creates extra pain which is also distracting.

Jason can tell often before I can that it is time for me to be done.  When I am done I am done.  There is no middle ground.  Sure I can muddle through for a bit longer.  As soon as I stop something I am sleeping.  I take these naps often in the car, after I’ve been active running errands, photographing, or hanging out.  I just get so exhausted.  I’ve been known to curl up on the couch, find a spot in the corner on the floor, and life and activities go on around me.  I just need to rest.  Sometimes in an hour I can function again, sometimes it is days…

Walking.. yeah, this gets worse the more tired I am.  That is a huge thing that Duke helps me with.  Before Duke I had Jason when Luka wasn’t able to help any longer.  But that meant Jason had to leave the table at restaurants when I needed to use the restroom Jason would need to wait outside for me.  I’d hug the walls once I got into the bathroom and grab what ever I could hang onto to navigate.  Jason would get to deal with the stairs of women entering and leaving the bathrooms he stood outside “lurking”.  And other things like this.  Duke is really great, I get to have my independence, and Jason can enjoy his meal and time with me with out also being an assertive device.

I am so very fortunate to have many people in my life that are willing to accept me as I am now.  Most who’ve known be before, and others who are newer in my life.  They don’t care that I don’t operate like everyone else, and they give me the time and space I need.  They also aren’t hugely demanding of my time which I also appreciate.  I often feel like the needy person, which isn’t a great feeling, but over time I have learned that needing others is also a compliment to them and allows them to participate and receive fulfillment.  Duke is a great reward for those who hang out with me.  The people who do are the one’s that get to have his attention or play with him.  It isn’t much but it is something special only a few people are allowed to do.  Duke loves it of course, he gets someone to play with that he doesn’t need to hold upright.  =D

I have had some embarrassing moments for sure.  I don’t remember faces and names like I used to.  Facebook for me is key in this area, as well as LinkedIn and Google+ admittedly I am on Facebook the most but the others are taking up more of my time as I connect with others.  My memory just isn’t what it was, some days I can remember all 22 people that I am photographing their names and their family status.  Other days, I do good to point and say green sweater tilt like this..  it really varies.  I have to be kind to myself first of all.  I can’t beat myself up for not being able to think better on one day rather than another.  The more pain I am having and the more physical energy I must exert prior to interacting with others plays a part.  So does the weather, whether I’ve had enough time to eat and drink, what my days have been like up to this day and other strange anomalies.  In the words of a young friend, “You get what you get, and you don’t throw a fit.”  she must have been taught this by her parents.  I take these words to heart.

I’ve also forgotten appointments, it is something that I work really hard not to do but it happens.  I know it happens to everyone, however I am more susceptible than most, it is something I am constantly working on.  The last time I forgot an appointment I had in advance set up for a friend to come get me.  She did, she was a bit early thank goodness.  I was in my robe and groggy.  I had totally forgotten, I was super glad she was there to drive.  I pulled myself together and made a the day work.  Other times I have completely missed.  But it is rare these days.  I really try hard to keep a mental map of my days and what is happen

I have found that I have certain ways of doing things, I make patterns for myself. I like to have consistency, and try to develop systems.  I need more of them, the busier I get the more systems I need.  This goes for Jason too.  He is a part of my systems.  I like for him to put things back in the same places.  He has a hard time because sometimes unknown to him I change the places that these things belong.  I like to operate in advance, have things done before they are due and give myself reasonable deadlines to finish things.  For me that may mean that I finish editing a portrait session three weeks after I have shot it.  For other’s not affected but a brain injury that may seem like an extreme amount of time.  Does it always take me this long?  No.  Does it sometimes, Yes.  I want to give those who work with me a realistic expectation and I don’t want them to be disappointed.  So I set realistic expectations with what I can do.  It is something I wish more people would do.

By now I know my limitations pretty well. I’ll often ask for help or accept it if offered.  Some things I need to do myself or I know I can do myself.  I’ve planned my spoons.  If I get help it means I’ll have another spoon for something else.  =D  I like to use my spoons for engaging with others or doing something that can spread joy, and spending good time with Jason.

I do get stuck in thought processes, I ask Jason things over and over, if I get an idea stuck in my head I could repeat the same thing for years.  He finds it frustrating.  I don’t really notice I am doing it. I probably do it with others, except that they aren’t around me enough to realize.  Holding the camera I shared that I get stuck occasionally.  Jason will help with fixing and adjusting things on set.  Our nephew does too when he is out with us, and our clients often help also.  I tend to get everyone involved in the process.

I know very well that this brain injury sets me apart, however it has also given me the gift of slowing down and relishing the things I am able to do, and appreciate the people who do choose to be around me.  I will do as much as I can for myself to continue to improve and to not decline.  It is a consistent war of my spirit, body, and mind. Some days for sure it would be nice to just let it all go, I get tired.  But I have an overwhelming passion for creating, sharing, and spending time with others, and this desire is what drives me to continue to persist.

I also  like to do something meaningful, that is where the photography comes into play.  I am in my mid 40’s and life isn’t going to stand still.  I missed so much, I want to be involved and apart of living.  As my cousin pointed out aging brings some of these things on as well, and I feel like I am battling this from two different directions.  Trying to gain ground, with out loosing it in other areas.  I know it is going to continue.

Depression is a big part of peoples lives who go through this reconciling who you are now with who you were is hard.  I didn’t know who I was even for a long time, I just couldn’t get my bearings, I tried to reenter my past life.  It wasn’t a good fit, I couldn’t perform like that any more.  I had created huge shoes to fill before my accidents, I did a lot for so many people, and they weren’t equipped to be present to help me.  It wasn’t how I had taught them to deal with me.  I found that through giving that business life up that it freed me to find myself.  Get grounded, and then see what I could do.  I no longer am what I do, I have discovered myself again through this process and I have discovered something else I can do.  It is exhilarating.

I struggle, it isn’t as if I don’t.  Paperwork, and finances are not my strong area, that would be the area I could use the most assistance, but have trouble trusting people to help me with this. As the help I need would need to be consistent in order for it to be of benefit to me. I also realize that I am asking a lot of someone, and it isn’t all that fair.  So I am still negotiating areas in my life.  This is just one example.

I shut down sometimes, it may be for a few hours, it is usually a day sometimes a few.  Sometimes it is a mental break, other times it is a physical break.  I can only push my body so far I have learned.  Sometimes I am down for a week.  I just finished sleeping for pretty much a week due to our booth at the expo.  So again it comes down to spoons.  And needing to plan.

Other people, who have gone through similar situations may be going through the same things.  Some may be also going through different things.  Sure I went through anger and all of those emotions.  Read older blog posts.  But today, this is where I am at.  Making things happen in my life with the support of those around me!

I identify a lot with those who’ve been effected by a brain injury or have PTSD, strokes, epilepsy, tumors, and illness.  You are not alone, and you can make it to a better place in your life.  There are now lots more therapies available, and outlets that can give you something to work for.

I am truly blessed.

Tonja & Duke

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