each moment alive
Stretches for eternity
What choice do you make?
each moment alive
Stretches for eternity
What choice do you make?
TBI changes everything. My old self died in the car accident that led to my TBI. I am walking wounded, the injury to mind and soul invisible.
My relationships with others changed. Some do not want to accept that I am not able to be who I was before. I struggle with tasks that used to accomplish, I frustrate easily, I have to spend more time thinking about how to answer questions or solve problems. For me, daily function depends a lot on routines. Same tasks, same time, same order. Change something and I don’t adapt.
It is frustrating when people assume I have the same abilities as before. It’s worse when they think I am unable to do anything correctly. For example, my sister and I arrived late for an appointment. She insisted we were on time. I am still capable of reading a digital watch and analog clock. Another appointment, I was to blame for being late because I “was upset and couldn’t communicate” when I told her we were walking the wrong way. Both times, I “freaked out” on her. I admit that I was angry and losing my control over it with her verbally. Her response was to walk away from me. She expects me to be who I was before. Or to be so broken I can’t do basic things. We don’t connect anymore.
It is hard on both sides. New relationships have to develop with a familiar stranger. I’m not who I was, in intelligence, cognitive processing, energy, emotional stability. Friendships and professional relationships need to be formed by who I am now, not who I was before. This is difficult for both sides. It seems easier to connect with people I either knew for decades before or people I met after the injury. I understand . There are times I don’t like myself (or how I act) either. I suppose it takes patient people to stay in relationship with someone radically different. It is so much easier to relate to my friends, past and present, on FaceBook. They don’t see me day to day and have to endure my temper issues or other problems. Interacting with my ferrets and cat is so rewarding. They accept me just where I am and love me anyway. They’re also easy for me to understand.
This article explains some of the changes in relationships after brain injury. I experience many of the emotions and changes.
I spent the last week (May 26-30) in a set of tests related to my TBI and seizures. I still have problems with thinking ahead, language, and stress tolerance. It takes a long time to totally come down when angry. Two days of neuropsych testing focused on finding out just how much my processing skills were impacted. The third day was a repeat of an EEG and and a MRI with contrast. I met with the epilepsy specialist on the last day.
I survived two days of neuropsych testing. I spent the most part of two days in a total state of pissed off. It was a graphic illustration of what I can’t do anymore. It was incredibly frustrating as I remembered that I used to be able to do the tasks easily. I muttered enough f-bombs to annihilate a couple churches, broke a pencil in half, totally destroyed my room key, and broke a pencil in half. I also kicked a wall hard enough to bruise my foot during a break. I think the toenail is not long for the world. At least I didn’t try to knock the tester across the room. I really wanted to. I totally withdrew from him. I didn’t keep eye contact because I was so angry at him. It’s easier not to engage much. I’m worried about the report he is writing.
On the third day, I had a sleep deprived EEG and a full contrast MRI.
The EEG was sleep deprived because fatigue sometimes lowers the seizure threshold. I was hooked up to 12 probes, including a heart rate monitor. The gunk that holds the probes in place really itched after a while. First, lights are flashed at various speeds, brightness, and patterns. Then, you’re told to go to sleep, on command. Right. I was awake the whole time. The test was in a quiet room with soft music playing. They try to make it as calm and relaxing as possible.
The MRI uses magnetic fields to take “slices” of the brain. The contrast helps make the pictures more clear. It is loud and you are held still by packing around your head and a piece that comes down over your chest, face, and head. Prior to the test, they screen you for any metal in or on your body. The magnet in the machine is so strong that it can move metal fragments in your body, damage pacemakers, and other metal. The tech asked about earrings but wasn’t specific about all jewelry. Since I wear my religious symbol tucked in my shirt to prevent people from reacting negatively, I forgot I was wearing one with a copper thing to hold one of the charms in place. I think very concretely. He didn’t ask about a necklace. The test started. About 15 minutes later, we had to stop because it was warming up. The stop happened at a bad time, in the middle of one of the testing runs. They had to take me out and remove the necklace. They found the offending charm and metal hook and removed it from where it was stuck on the side of the machine. Unfortunately, the test did not restart. I broke an MRI. Not really- they rebooted it. Then, back in I went. A few minutes later, they pulled me out to put the contrast in through the IV port. The MRI is much louder and cramped. I fell asleep in the MRI the last 20 minutes. I think the slight pressure of things they use to keep your head from moving were comforting. I felt safer and more relaxed.
I was exhausted after these tests. My sister and I stopped by Big 5 to look for a pair of shoes that she needed. This Sogn does not read “Assorted Beanie Boobs..” Fatigue does weird things or I just have a naturally dirty mind.
On the final day, I met with the epilepsy specialist to get results. My EEG was clean, a common finding even with seizure patients. They only pick up activity near the surface of the brain if there is a seizure happening or is about to happen. Even then, if the focal point is deep in the brain, it won’t show. For some patients, a multiple day EEG is done in the Hosptial to try to catch one. My MRI showed areas of scar tissue. They are too small to try to remove. He thinks there may be damage deeper in the brain where our current MRIs can’t reach that may be causing some of the other problems. They aren’t something to be concerned about.
The neurologist conducted a physical exam of neurological function. Even here, my literal mindedness showed up. Just after we talked about how the injury impacted my running (lack of endurance and sensory tolerance) he mentioned something about it being all psychological. Really? He quickly explained that anyone who runs a marathon must have a psychological problem. Then I understood the joke. He took the time to identify how I functioned before the accident, what changed after, and how I was adapting (or not). He was really supportive and listened. We talked at the end about the results of the tests and what other treatments are recommended. He is satified with my treatment regime. My dose of Lamotrigine can still be raised if needed.
Overall, I think the tests went well. My past MRIs were always read as “clear.” In an odd way, it felt good to have something actually show up indicating an injury. Maybe they can find something to help.
If I had a wish
Hope, health, happiness, laughter
But no wishes are given.
Life is depression
Neverending struggle to live
With a damaged brain.
If I had a wish.
No TBI ever again
For anyone. Or a cure
For the damaged brains.
Several years ago, I was happily training for marathons and had the goal of an Ultra. I took for granted the health that allowed me to run. I took for granted running. Sometimes, I even whined about my long 18-20 mile training runs. The brain injury showed me never to take your (or family’s) health and life for granted. I have several issues stemming from the injury. It all changed in a second.
I returned to running nine months after the injury. This process has been a combination of frustrating, depressing, and absolutely exhilarating. I can run! It was fun seeing steady improvement over time from my first wog/ slogs after the injury to now. After the injury, I ran a familiar and favorite route. Over many months, I took 9 minutes off my time on the 5.3 mile route. I decided to reset my PR clock to BI and AI (Before Injury and After Injury). Mostly, I now run for the joy of running.
I fought hard to run again. I could not see myself giving up the joy of the road totally- even if it does suck sometimes. One of my clearest memories of early grade school was in first grade. I pestered the playground teacher to “count while I run to that fence and back.” Probably drove them nuts after a while. That was the start of the Idiocy. 😊
I run now because I love it still. It is a reminder and physical demonstration of how hard I fought to heal and how far I have come. I may never run a marathon again but I am on the roads. There is a shirt that says, “There will come a day where I can no longer run. Today is not that day.”
Currently, brain injury is categorized in three different levels: mild, moderate, and severe. The level is generally decided by loss consciousness and your score on the Glasgow Comma Scale.
The problem lies in nomenclature. While it is convenient for medical personnel to place brain injury patients in categories, it is not in the best interest of the patient. The categories are supposed to be a guide in identifying what kinds on interventions and needed and the likelihood of complete recovery. Although most people with a mild TBI recover fully, there is a fair percentage of patients who have ongoing symptoms that negatively impact their lives.
I was on the edge of “mild” TBI and moderate. My loss consciousness was unknown by the ED. I was discharged from the ED with orders to follow up with my physician in a few days. My coworker who picked me up noticed a significant cognition change. He put it down to shock. I spent 48 hours unable to sleep (change in consciousness). I had two seizures that resulted in my urinating on myself and biting my tongue. I didn’t understand those were seizures until later. I thought I just didn’t wake up to go to the bathroom. I didn’t mention it to my doctor. My cognition was significantly altered and I was making decisions that were not the best. At one point, my pupils were unequal. Due to the initial mildTBI diagnosis, time was lost in staring therapies that may have prevented later problems.
My diagnosis was upgraded by the neurologist from “mild” to “moderate” later and I was identified as having post concussion syndrome.
Literature shows that a fair percentage of mildTBI patients so have ongoing difficulties. Often, they struggle to understand why they have changed and to communicate clearly with doctors. Frequently, the don’t receive needed therapies at all or much later in the process.
A brain injury is a brain injury. You either have one or you don’t. “MildTBI” is like saying a woman is “mildly pregnant.”
It’s now 2015. The New Year is supposed to be a time of new goals, renewed hope, and new beginnings. Honestly, I feel more stuck and see little chance of my situation changing.
There is much in my life that I have no control over. Other people have the power to make decisions about my life. My seizures are uncontrolled still. There are times I just want to give up.
There are a few pinpoints of hope for this year.
Riley completes his Service Dog training at the end of next month. Even in training, he helps make things easier.
My seizure medication decreases the seizures. Every time the dosage is raised, I have fewer seizures. I still am at the lower end of therapeutic; there is room to increase the dose a few more times.
The neurologist is referring me for another round of neuropsychology testing. There is some concern that the uncontrolled seizures may have damaged my brain. I’m having more trouble with spoken language. It may just be stress and fatigue. I’m also being referred to an epileptologist. The hope is my seizures will be controlled by the time the visit is authorized and the appointment made. Honestly, I am sick and tired of tests and rehab. Tested Enough Already!
My goals for the year focuses on what I can do:
1. Run 16 miles at one time. I haven’t been able to put in serious distance since the injury. Sixteen is a challenging, but likely possible, distance.
2. Find a way to manage the anxiety and depression that seems to be dogging me.
3. Run 800 miles this year.
4. Write more
5. Take action where I can and let go of what I can’t change.
I hope 2015 is a good year.
Happy New Year!
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