Providing Support

My coworkers are wonderful people. They have supported me professionally and personally throughout my employment at the VA. They stood by me after I was injured, helping behind the scenes and directly. I work with some truly wonderful people.

Several months ago, I started the process to apply for medical retirement from my career. Ever since the injury, I struggle to complete simple tasks at work. I am exhausted by the end of a shortened work day. Being in public is being in a world traveling 70 MPH, when I am plodding along at 45 MPH. The world is too bright, too noisy, too fast for me to comfortably be present. Spidey super senses are not fun when it makes even being at work tiring and anxiety- provoking never mind actually getting tasks done. I made the decision to retire and explore other options to remain part of the community and produce something.

I mentioned the decision to my coworkers and supervisor, not wanting this to catch them off guard in the future. Their response shows the caring, “How can we help make it possible for you to stay?” Offers of lowered hours, fewer patients, etc followed.

One concern I have is my lowered production. I only work half time and in the time I am in the office, my patient load is already light. I’m not really providing the services effectively and my coworkers are taking up my lack. It’s a busy place. They really need three full time social workers. Instead, they point out how my injury gives me insight to the struggles of the Vets, how helpful I can be to others with TBI, how seeing me back at work after a debilitating injury shows the Vets it is possible, etc. I know I do these things, for the few Vets I see. The cost I pay is in pain, anxiety, and exhaustion.

I appreciate the support and encouragement my friends at work provide. However, right now, I think I need a different type of support- that allows me to make the choice to leave rather than fighting to survive every day. It seems whatever choice I make “lets down” the team. If I stay, they continue to cover my brokenness. If I leave, I let down a lot of people in my life. Part of me sees leaving as “failure,” just as I failed my Army unit by not deploying. The Army found another qualified social worker to take my place. I’m fairly certain the VA will as well.

20140816-043012-16212047.jpg

Robin Williams

Since Robin Williams completed suicide last Monday, I have been reflecting on the profound impact depression had on people’s lives. Robin was an incredibly gifted man- he could do anything from a tragic role to a genie. He had a talent for improve. He brought laughter, joy, and tears to millions of people worldwide. Yet, he struggled with the monster of depression. Ultimately, he lost the war. His legacy will live on, continuing to challenge, entertain, and inspire generations in the future.

Depression effects roughly 25 million Americans annually. I am one of them. My first bout with depression was while I was active duty in the Marines. Due in part to stigma, it went undiagnosed and untreated. I first got help three years after completing my service in the Corps.

Depression is misunderstood. It’s not a temporary sadness that everyone experiences in life. It’s not something you can just “snap out of” by doing something or thinking happy thoughts. It’s a crushing change to your brain’s chemistry. Depression robs you of laughter, joy, and hope. It is living under a dark storm cloud while everyone around you is basking in bright sunlight. It impacts how you think, your emotions, and what you do. At times, getting out of bed is an accomplishment. Depression is a family disease, a social disease. It effects the family and friends of the person. Often, they are confused, frustrated, and feel helpless to ease the pain of their friend or family member. At times, a person may be surrounded by friends and family, yet feel utterly alone. That is the ugly face of depression.

There are effective treatment options. If you have depression, seek out a qualified therapist. Cognitive Behavioral Therapy does help. It teaches you how to identify the interactions between thoughts, emotions, and behavior. If you change one, you frequently change the others. There are also several effective antidepressant medications. Dialectical Behavior Therapy may also help. Talk to your doctor and rule out medical issues that can mimic depression: hypothyroid, low vitamin D, and low iron may all cause depression-like symptoms or make your depression worse.

It took me five days to write this blog. I never thought the death of a stranger I never met would impact me so deeply. I mourn for the loss of a bright, shining star in our world. Robin Williams made me smile in some of the darkest times of my life. But his legacy lives on.

20140815-213432-77672502.jpg

20140815-213432-77672396.jpg

My Hope

I saw this video first as a commercial on TV for moments.org. The veteran also has a brain injury and faces many of the same problems I have. Her service dog changed her life. My hope is that Riley will one day do the same for me.

Service Dog Story

Paws For Service- Fundraiser for Riley

Riley is doing great in his training. He is ready to take his Canine Good Citizen test. He is working hard on his public access manners.

Last Friday, I visited him and the training team. I started to learn how to do basic trimming and grooming of his coat. We then worked on walking together and practiced the access test. He has to learn me as a handler. Then, connect me with the rest of his task training.

He started to learn a couple of his tasks last month. Right now, he is working on recognizing and responding to auditory overload, bracing, and standing between me and people who are crowding or upsetting me. He demonstrated his progress last Friday.

I was recently diagnosed with a seizure disorder. My friend, Carol, drove me to see Riley last Friday. Riley was practicing responding to my cue for sensory overload. I clamp my hands to my ears. He was not consistently understanding the cue from me, as I am a bit different from his trainer. He’s also in the starting stages of,learning the task. Carol made the suggestion they couple a loud noise with the task. Loud noise means Riley “checks in” with me to see if I am managing. To demonstrate what happens, she suddenly clapped her hands sharply. My hands went to my ears and I stepped backwards. Riley stepped in between me and Carol. Then, he looked up at me. He performed a task in a real situation, without prompting.

That is one of the many challenges of being a service dog. Riley had to choose between two tasks. He did both. However, he will eventually have to know what task to do, when. He will have to make independent decisions about my welfare and what he needs to do. In addition, he can’t become “alpha” in the partnership. He still has to defer leadership to me in most situations. Thus, the long period of training before a dog earns the title “service dog.”

20140811-204712-74832894.jpg

Adventures in Brain Injury

There should be a theme song that goes along with the title of this post. It would be something adventurous, exciting, with moments that are slow and seem to drag on forever. There are brass, percussion, and strings. Then, with no warning, the music turns into atonal chaos. That’s brain injury. There are times life seems “normal” again. It may be different from before but there are still times of happiness, contentment, laughter, and even disappointment and sadness. Like a “normal” life. Then, without warning, the remaining affects of the injury causes life to derail again. Chaos descends.

I had adjusted, for the most part, to the changes in my life that brain injury brought. Gradually, I started to define my “new” normal- how my life is now. I still challenge myself. However, I accepted that I have some after affects that will not eventually go away. I learn to find ways to navigate around them.

Last week, I found out that I have one more issue. Brain injury:the gift that keeps on giving. I have a seizure disorder. Only 5% of Traumatic Brain Injury patients develop seizures. Usually they develop just after the injury or around a year into recovery. I should be so “lucky” with the lottery numbers! I’m now on medication to control the seizures.

There was a fire drill at work today. At the time, we were having a staffing to discuss a complicated case. I was standing next to a short filing cabinet; one of the ones about 3 feet tall but long. The alarm rang! Blaring, loud, concussive noise. The strobe light starting flashing. I dropped my soda and was crouched down, leaning into the filing cabinet, arms covering my head, with no idea who I was, what was happening, or what I needed to do. One of my coworkers talked to me, took my arm, and led me out of the building. I was incapacitated physically by the noise. I also experienced a few seconds of lost time, where I wasn’t aware of my coworkers at all. At least my coworkers know to look for me if there’s a fire alarm. I’ll needing help getting out. This is another example of how a service dog can help.

Ironically, I didn’t have a seizure then. However, when I was back in my office 15 minutes later, I phased out totally for around a minute. I suppose my brain was re-booting after all the offensive stimulation.

20140729-205315-75195206.jpg

20140729-205314-75194989.jpg

Ironic Diagnosis

My neurologist ordered a repeat EEG (Electroencephalogram), the test for seizures. He suspected I have been experiencing partial seizure activity. I went in for the test last week. Approximately 5% of head injury patients develop a seizure disorder. Generally, the seizures either start just after the injury or a year later. I experienced at least one seizure-probably two- the first week after the accident.

The test isn’t painful but it is uncomfortable. To begin with, if the test ordered is “sleep deprived,” you have to stay up the night before. A sleep deprived test is more likely to pick up the indicators of seizure activity. The brain is fatigued and irritable. The clinician hooks around 12 wire leads to your head. It’s not painful. The connection is on the surface. The test itself takes about 20 minutes. In the first stage, a white light is flashed at different speeds. The clinician is trying to provoke seizure activity. I imagine this can make the job rather exciting, when someone experiences a full seizure during this part of the test. In the rest of the test, you rest quietly. I felt really sick during the flashing lights part. For those of you familiar with the original Star Trek, it rather reminded me of the episode with a torture apparatus with flashing lights was used.

There are different kinds of seizures. The most familiar is the Grand Mal seizure, where an individual loses consciousness and has uncontrolled muscle contractions. A simple seizure is an uncontrolled muscle movement. It can be just one muscle group; for example a hand. The patient usually doesn’t lose awareness. A complex partial seizure involves more complicated activity and might involve more than one body system or a partial loss of awareness. This seems to be the type of seizures I experience. I lose awareness during mine but may still be standing up, moving, etc. My brain goes “offline.”

Fatigue is the most common after effect of seizures. I wonder if this partly explains my ongoing struggle with always being tired. And why I face plant for unexplained reasons. My neurologist started me on Lamictal. Hopefully, it will control the seizures without massive side effects.

This is a good article about seizures and TBI. It explains seizures at a basic level. Seizures and TBI

At one level, having a concrete diagnosis with test results is a relief. I can finally point at something and say,”Here! I didn’t have seizures before my injury. Now I do. I told you my symptoms weren’t caused by depression… “. Ever since my TBI, it has been a fight with the medical providers to have my symptoms and after effects recognized. I was basically told it I can’t possibly still be having problems. It can be a real challenge to find a medical provider who listens to you and looks for a cause of the problem. My neurologist understands that any TBI can cause life long effects. I was unconscious for an unknown period of time after the accident and had significant cognitive symptoms in the days and weeks following. And unequal pupils. Initially, I was a bit more clear, as the swelling hadn’t started. My initial diagnosis was totally blown by medical providers.

On the other hand, having a seizure disorder is a bit frightening. I know I have a more mild form but it still means my life is different from before the accident. I now have to take anti seizure medication, probably for the rest of my life. It’s a serious diagnosis.

20140724-193730-70650100.jpg
Riley and I At Training

My service dog, Riley, continues his training. He is growing and making great progress. In addition to his other tasks, he now has to be tested to see if he can learn how to warn of impending seizures. He will be so much help for me to start having a more independent life. I’m currently having a GoFundMe campaign to raise money to help pay for his training. Please go visit the campaign and learn more about Riley. Donate if you can. If you can’t donate, please share. The larger the reach, the more successful the campaign. Thank you so much for your support.
Paws For Service

Service Dog Cadet

My friends and coworkers think me having a service dog will help me achieve better independent quality of life. Right now, I shop in a handful of stores I know. The other day, my friend told me to go pick up a couple of chickens for dinner at Grocery Outlet. They were on sale. I went to Safeway and paid $2 more per chicken. You see, I don’t go to Grocery Outlet. I don’t know where to find anything, I don’t know the store itself. I only go,alone to Safeway. It’s the only grocery store I go into without another person with me.

Sensory overload is much like swimming in the ocean. You get hit by a sudden wave and knocked under water, you’re tossed and turned, the undertow starts dragging on you. You’re not quite sure which was is up or how to get you feet under you. My brain lags. Like a computer with too many windows open, the more input, he slower the output. And you’ll get error messages.”error 42511 brain not found.” I do my best to find a way to have some pieces of my old life. While I alternate between accepting I am dead, though my body lives.

We hope Riley can help me function better in public and be more independent. He’s being trained to help balance me, nudge me to come out of overload, or lead me away from overloading situations, get in between me and other people who are crowding me, recognize I’m getting a migraine before the pain starts. Maybe, with him, I can stop avoiding life.

I love my cat and ferrets. I would be very happy if the only time I had to leave the house was to get food and go running. I safe here. It’s quiet. I’m in control. Running used to be a physical,challenge. Now, it’s not only physical but mental. I have to force myself to take the road. And clean up the road rash.

Service dogs can do fantastic things for their handlers. I’m trying to raise $10k towards his training on GoFund Me. He will cost $24 k to completely train, I’ll be taking a loan to cover the rest of his training. Unless I am lucky and raise the entire amount.

20140716-000548-348305.jpg

This is Riley. He’s being trained at Speak Dog, LLC in Richland, WA.

20140716-000645-405983.jpg</a

20140716-000746-466852.jpg

Reality

My life moves on without me.
Dreams floating dead in the water.
Who I used to be I am no longer.
And never will be again.
Put the pieces back together.
Try to make them fit but they never -quite- do.
The accident didn’t take but body but it sure as hell took my life.

20140715-202839-73719493.jpg