Today is Not the Day

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.”

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“Mild” TBI: a Misnomer

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.”

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New Year…New Hope?

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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Along the Road

A few posts ago, I mentioned a spiritual experience I had during the accident that caused my TBI.  It’s the only thing about the accident that I remember clearly.  I recently struggled with one vital,part of the lesson: no matter what happens, I’ll be ok.

Recently, I am extremely anxious about my employment.  My injury was on the job.  After struggling for three and a half years, I don’t see enough improvement to let me return to full time work.  I struggle to finish a short work day.  I also can’t perform key aspects of the position.  I made the decision that it is best for me to medically retire.

Thus enters the chaos.  If I put in my retirement package, I immediately have to stop working.  My Worker’ Comp stops as well as all my pay and benefits.  Sounds good, right?  Well, it take up to 9 months for the retirement to process through federal Office of Personnel Management (OPM).  There’s no way I can retire financially without ending up declaring bankruptcy, losing the house and most of my possessions.  The worst part is I most likely won’t be able to keep Brigid, Bobby, and Kaliyah.  Those critters bring so much laughter and love  into my life.  It is impossible to watch ferrets play without smiling.  Brigid continues her role as service cat, waking me from nightmares and purring me back to sleep and snuggling with me when I have a migraine until I can sleep.

I have an appointment for a second medical opinion by a neurologist of OWCP’s choosing on December 11th.  This could end in three ways: 1. Return to work full time, no more benefits; 2. Stop work order pending retirement; or 3. Continue on as is.  I doubt they can kick me off benefits since my seizure disorder was recently diagnosed and is not even close to be controlled.  I’m hoping for option 2; send me home to wait for OPM to act on retirement.  This will continue my pay and benefits. However, it is their doctor.  They pay him.  I have a hard time believing it will be a neutral exam.

TBI gifted me in ways I haven’t mentioned before.  I now have anxiety, almost all the time I am away from my house.  I function decently in familiar places and following a routine.  I don’t go anywhere I don’t know without a friend.  The anxiety at work is unhinged.  I feel physically ill entering the building and have to really focus not to emotionally melt down.  Another problem can actually be amusing, if not annoying, in some situations.  My life has a soundtrack playing in my head quite often.  I’m sure people are familiar with “ear worms.”  Everyone gets a song “stuck in their head” at
some point. For me, it is daily and fairly constant. Last week, I was treated by having the theme song to “Adam 12″ playing in my head constantly. Sometimes, I can change the channel and replace one song with another. Sadly, getting my mind stuck in a rut also applies to other situations. I get an idea in my head and I obsess over it. Right now, it’s the situation around my retirement.

So, here I am, awake at 0215 trying to stop worrying.

No matter what happens, I’ll be ok?

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Spirituality and TBI

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Lately, I am reflecting on my spiritual journey as related to TBI. My memory of the accident is gone with the exception of a couple of images. The strongest memory is of a spiritual experience.

From reading the police report and pictures I know the facts of the accident. My car hit black ice, spun out to left and off the interstate. The vehicle left the interstate, then rolled partially down an embankment, striking a tree.
The only recollection of the accident I have is that split second of “oh shit” as I realized there was no way I was going to recover control. Then, I became aware of an incredible, peaceful Presence in the car with me. I had the comfort of being “told” that no matter what happened, I was going to be fine. I was not afraid, even if I died, I knew it would be as it was meant to be. I was safe.

I am not certain of the exact nature of the Presence. It seemed there was more than one Being with me. My maternal grandfather had visited me in dreams and has been present in times of stress or danger. He was with me then. I also sensed a Power greater than any mortal or Guide. Perhaps this was my Guardian or some other higher being.

I did not experience a tunnel of light or the common near death experience. I don’t think I was near death due to my injury. However, I was at a decision point. This was a possible “exit” from this incarnation. Yet, there was unfinished work.

At times during my recovery, I felt overwhelmed. Emotionally and mentally, I felt I was left in a strange half-life. Much of what I used to value was eventually lost or changed. When I contemplated “finishing” the process of dying by committing suicide, I realized there was a purpose for me being here. If I ended my life, I would dishonor this purpose. Not to mention that I still had ferrets and a cat who depended on my care. It would also greatly hurt my family and friends.

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I still seek to understand my purpose in life as related to the ultimate journey of my soul. Life does not end at death: we are a soul with a body, not a body with a soul. We incarnate to learn lessons. Throughout lifetimes, we gain wisdom and spiritual growth.

I plan to explore this topic more in future posts. In the meantime, be well and at peace.

Merry Part, until we meet again.