Battles with My Brain
My memory used to be my best feature. My long-term memory is still sharp. I am known for things like knowing all my states in alphabetical order from a song I learned in 5th grade called “Fifty Nifty United States”; but short-term memory? …that’s another story – like what did I just have for dinner 2 hours ago? I forget completely!
While telling this story, there are a few details I have left out simply because I cannot recall dates. I have battled issues with my mental health for a long time. At one point, I overdosed in the midst of a depression bout. I am fortunate enough that they caught it on time and saved me.
I currently live in a subsidized apartment with caretakers. Even though this is embarrassing, I want to share my story anyway.
It all started in December 2001. I needed psychiatric help once again for my various issues. I suffered from major depressive recurrent obsessive-compulsive disorder, bulimia, and self-harm. My first psych ward stay was when I was 12 years old. It was decided when I was 22 years old that since medication was no longer working up to par, that I should give ECT (Electro Convulsive Therapy) a try. My best friend at the time had also done it, so I knew what to expect as far as memory loss. That happens all the time with ECT. What doesn’t happen all the time though was trauma that happened on my 5th treatment. January 21st, 2002, I went into a 15-minute seizure and lost all short-term memory. I would call my mom every hour forgetting I had called her, and I would repeat what I had said earlier.
I thought things couldn’t get any worse. I was proven wrong. I don’t remember the exact date, but a few years later when I was 25-year-old something different happened. Was it sometime around 2005…or was it 2007? Again I can’t recall! I had these moments where I would get a bitter taste, blurred vision, have nausea, and ringing in my ears. I did research to try and figure out what was going on with me. I found that all my symptoms seemed to be all signs of epilepsy. I called the hospital and asked to have an appointment with a neurologist. I then was able to make that appointment with the neurologist I was referred to. I ended up keeping that appointment. When I was there, they did an EEG. The doctor’s response to me about the EEG: “You’re going in!” Not only did I have left temporal lobe epilepsy, but I also had an aneurysm that had not ruptured! I hated having to have to have my head shaved since I had body image issues already, but when I got into debates about it, I figured it would be a better body image to be living. If I didn’t get the care I needed…maybe I would be facing death. As weird as this may sound to some people, you can be thankful for bad things like epilepsy cause worse things like an aneurysm can be discovered!!
That all happened over 15 years ago. I can’t believe it! Sometimes it seems like last week. Sometimes there is reality and I see I have come a long way. I do still have short term memory loss, but it isn’t as severe. I make sure to take notes when I need to. I keep a journal, or I will forget what happened yesterday. When I see my therapist, I will read my journal to her so I can then discuss how my week has been. I currently am pretty depressed and am giving equine therapy a try. So far, I am loving that so much. The feelings are returned from the horses and this is incredibly therapeutic and helpful to me.
I can’t recall what happened in 2016. My brain injury impacts my life in many ways. A few of these ways present themselves as being unable to hardly work at all; being unable to go to school and continue my education, not being able to go places on my own over fear of getting lost, and not being able to have control over my own finances.
I had a job over a year ago at a bookstore where I worked part-part time. It was 3 days a week for only 3 hours a day. Not that much, right? But that was plenty for me! My days then seemed more like full time days to me. As far as school, when I was going, I took all the prerequisites for nursing or occupational therapy. Then the TBIs happened. Now my memory isn’t strong enough to handle any of it. I still love volunteering at hospitals though, but I must get rides from a van company. I used to take the city bus but now I’d probably get lost – especially since I moved about a year ago and am looking to move soon. Getting lost on the bus is a big fear of mine! One fear I don’t have to have though is overspending. My payee takes care of paying my bills. I don’t get any cash. That can be rough at times… having no money to play with – but with my memory I might misplace it if I had it.
One thing I am blessed with is all my support I do have. I have an understanding family all around. I am sure they had to do a lot of work through the years, but it was best for all of us. I also have resources like a case manager who I can just talk to if I am having a rough time with life in general. My case manager can connect me to community resources. The one thing I do have a problem with though is supporting myself. I should know by now after over 15 years that I won’t be the same Katey I once was. I should accept the new me. The new me isn’t that new though after 15 years. I have short temper with myself and sometimes even with others. When it is with others that is mainly due to the brain injury and because I have sensitive hearing. I cannot handle loud noise at all. Some people accept that, and they care. Other people don’t.
I am in Wisconsin. Days like today, in the winter, as I write this…. it is 0 degrees Fahrenheit. It was below zero earlier; and Summer…that gets so humid! Extreme temperatures really influence how I am feeling.
One thing I am thankful for in my city is the excellent teaching hospital where all my care took place. I even had the head neurosurgeon which I thought was just awesome. That man sure knew his stuff! I joke around and call him the “head of the head department”. I highly recommend that man in a heartbeat!
Some days it is hard to get started since I don’t work, go to school, or have any way of getting places except van companies. But one thing I never lost to my brain injury is my creative talent. Upon research I found creativity to be stored in the frontal cortex of the brain. That part of my brain is still strong thankfully! I love photography and poetry. I photograph many things and I write about many things. I write poetry in a few different styles. Poets who read this will know what I am talking about. Those who don’t, can do research and have homework..lol.
I love writing sonnet and acrostic combinations. That is my specialty. I also write etheree, double etheree, and haiku. Well, I don’t really write the haiku poems. They are already written on magazine ad phrases. I just cut the 5 and 7 syllable phrases out and arrange them how I wish on 4×6 cards. I have several photography albums full. I use my photography to make greeting cards. At the end of last year, I made a lot of cards for a Veteran’s Hospital here in Milwaukee thanking them for their service and writing an encouraging note. I also sent cards to the same hospital where I got my brain surgeries at.
My creative gifts continue to bless me, and I like to bless others with it. Sometimes, people have so many questions to ask; questions that are so hard to ask, or even put words to – so it can be difficult when they have so many unanswered questions, and they don’t know where to even begin with all of them. I was there before myself. It was not easy, but asking those questions is important.
There is more to my story though. While I am a brain injury survivor…..I must also continue to battle seizures.
Since getting diagnosed I have received a couple of treatments to help me fight seizures. The first one was a VNS (Vagus Nerve Stimulation) Device. That is implanted in the chest. It came with a small device I couple clip on my pocket. If I felt a seizure come on, I would just take it and hold it up to my chest and cough away the seizure. It works well for some people but not for me. It made my voice very very hoarse. It pretty much just made me cough. It wasn’t always taking care of the seizure. So when my Neuro team suggested RNS treatment I went with that. I was nervous about the RNS treatment. Responsive Neuro Stimulator. I had an implant put in my head! Sounded terrifying when they first told me about it, but I’m thankful I followed through.
I still use the RNS treatment morning and night 8am and 8pm. It is the NeuroPace RNS (Responsive Neuro Stimulator). As I look back, even though I had to shave my head to get the implant put in, it was worth it. This device comes in a laptop computer. It has a wand and I hold it up to where the implant is on the left side of my head. I hold it there while the computer reads the implant. It won’t tell me anything but when I upload it to the doctor ever Friday morning, he will be able to tell if I had a seizure or not. I had been having several a week a few months ago but now I am down to one a month. In reflection, the NeuroPace RNS has helped me the most. Since having the RNS I have gone from having several seizures a week to just 1 last month!
Currently, I am disabled, and I live in subsidized apartment with caretaker staff. It is hard at times. We do face battles because not everyone understands the struggle I face with myself at times. I was threatened to be put in a group home but then when COVID-19 hit that threat died down since no group homes would take new people. I have caretaker staff because I might not remember to take my medication. I don’t understand that one. I remember to use my NeuroPace RNS at 8am and 8pm every day, so you would think I would take medication right after, but I am not trusted.
Yes, I might get lost if I were to go out but there into the world…but there are people willing to help. I must choose to focus on the positive. If I focus on the negative that will increase my depression again. Depression also increases the effects of memory loss, especially when under stress.
So, this is a daily battle, but the fight is worth it.
Like I said before, it has been over 15 years since my first TBI. At times I feel like my brain holds me captive, obsessing over thoughts and questions. Will I get better? Can I get better? Is there hope? When that word hope comes up, I do recall a free verse poem when I was 12-years-old, about hope….
Hope comes in many things
As hard as it may seem to find it
It is there
So when it seems like you want to give up
You want to give in
There is a place you can begin
There are many ways
To find some hope
I do feel hope. I have gotten better in some ways. My memory is poor but not as poor as it used to be, so the healing must continue.
As you can see, this is a daily battle for me – but the fight to survive and go on, is totally worth it.
I do have a few suggestions to offer in telling my story.
- If you fear there may be something wrong with your brain like I had with my epilepsy symptoms get it checked out. The best that can happen would be to find out you are healthy, and you will feel peace.
- If you do find out something is wrong, you may feel like doing medical care research. I suggest going with carers that care enough to find out what was wrong. I know other people who didn’t do that and there wasn’t the best communication between hospitals.
- Fear is a normal feeling and an okay feeling to have. When the doctor and medical team talk about steps in treatment, don’t be afraid to ask questions. Write down your questions if needed so you won’t forget. Even before the appointment.
Those are three things that helped me in my journey.
As far as my health currently – I somehow managed to end up catching the COVID-19 virus. Then I got pneumonia. I had no idea if it would affect anything having to do with my epilepsy. Thankfully it hasn’t, and I healed up in 2 weeks
I like telling my story because you never know who will be prompted in seeking help. You never know the person that might read or hear that story who felt a lot of fear before, but now, because of your story, has a little bit more courage to get help or move forward with their care. I would like to think my story can also give someone else hope.
~ Katey Ratz