Opportunity is knocking

During the past year and a half, I have been given some special opportunities to do positive things for the TBI community in the state of West Virginia.  First, I was selected as Chair for the West Virginia Medicaid Traumatic Brain Injury (TBI) Waiver Quality Improvement Advisory Council which provides opportunities for individuals with TBI to transfer from institutions such as nursing homes to a home environment which can vastly improve their quality of life.  Our mission is to advise the WV Bureau for Medical Services how to implement the Waiver to provide the best possible service to the participants.

My work with the TBI Waiver QIA Council has led to other opportunities that I hope to use to better the lives of fellow survivors as we travel this sometimes-broken road.  I was selected as the TBI survivor to represent West Virginia at the 29th Annual State of the States in Head Injury Meeting Sponsored by the National Association of State Head Injury Administrators in Des Moines, Iowa.  I hope to learn things at this meeting that will make me a better advocate for TBI survivors in West Virginia and beyond if possible.

Attending the meeting in Iowa will be very helpful in my other position as a member of the West Virginia Traumatic Brain Injury Advisory Board.  While the TBI Waiver Council deal with a very specific level of TBI care, The TBI Advisory board has a broader area of concentration, covering all ages and all levels of severity of injury.

Here is a little perspective on what makes these opportunities important to me.  In 1975, shortly after graduating from high school, I left West Virginia to join the U S Army and though I returned for a short period in the early 80s, I was gone for more than 35 years. I was raising a family and pursuing a career in the military which led to another career in the computer field.  In May of 2008, everything I had worked so hard for came to an end in an instant when the truck pulled out in front of me. You can read about the accident here.  I was blessed, in a twisted way, to have had my accident in Georgia which is where Shepherd Center is located.  It still took two and a half months to get there but once I did, things came together, and recovery began in earnest.

Awareness and care for TBI is not perfect anywhere simply due to a general lack of understanding but when people care and work hard, it can get better and I hope these opportunities are just the beginning and I can help bring TBI to a level of awareness that will allow survivors in the state of West Virginia to receive the care and opportunities available anywhere else in the country if not better.

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Cavity: A hole Left by TBI

Another training post; this lesson is called writing prompt.  I thought it was quite silly; they gave me a single word, cavity, to go with.  OK, what do I do with this; I hate the dentist so finding something positive there will be a stretch.  Well, in essence, cavities are holes, right?  What kind of holes could possibly be related to a traumatic brain injury?  Lots of holes, actually, were created by my tbi but the real story is how those holes were filled.  What do you say, let’s go spelunking, OK?

The first cavity that came to mind was where I was heading when I met the tbi monster, work.  I never made it there that morning and it doesn’t look like I ever will.  I had spent years learning the job, getting an education and chasing certifications to position myself for whatever career moves made themselves available, then, BAM, no more career.  I guess that is how athletes feel when an injury brings theirs to an early end.  I could have given up and played the victim, I know some who have.  That’s not how I was raised and it is not how have ever approached any adversity or challenge.

My situation was a little different because of the nature of the injury.  I had serious problems with what is referred to in the brain injury world as initiation or adynamia (Click here for more information on adynamia).   Most people think of it as motivation which was never an issue in anything else I ever did but after the tbi, I lacked any kind of motivation.

Since I wasn’t able to find any internal “initiation”, Bonnie had to come up with some type of external motivation and that included digging into my past for some memories of what might give me motivation to pull myself out of the mire of this tbi fog.  She reminded me of how I learned to analyze and overcome problems by watching my Grandfather when I was a child and how he would never let anything stop him.  You can read about this in detail in my post Turning Point.

Traumatic brain injuries can cause many different kinds of cavities but with a little help, they can be filled.

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Blogger in Training

I have decided I need a little help becoming a better blogger/writer so I’m taking a fundamentals course.  I know I’ve been at this for a while but I also know my writing can be better.  You are probably going to see some different types of posts as I work through the learning process so bear with me.

This is kind of a rookie, getting back to basics or maybe just getting to the basics post so I’m going to revisit why I started blogging in the first place.  Besides the fact that my wife, Bonnie, suggested I write something about my ongoing recovery from a traumatic brain injury, whether it be a book, blog or just a journal, I had been thinking about sharing my journey back from the edge since I could actually think again.  Once she gave me permission, so to speak, I dove in heads first.  I thought it would be easy to write about my recovery since so many wonderful things had happened in my life since the accident but putting them on paper or on a computer screen sounds a lot easier than it actually is.

I wanted to reach out to others with similar struggles and share with them the fact that there is genuine hope after a catastrophic tragedy like a brain injury.  Many times, though, I found that the condition made it quite difficult to write about the condition.  Dealing with fatigue far worse than I ever felt before the injury, my newly acquired dyslexia, memory loss that I forgot about or tried to dismiss and a very serious lack of motivation were factors that made hope hard to concentrate on.

I found that Bonnie’s support and the support of our children and grandchildren gave me reason to keep trying.  The blog has served multiple purposes.  It has, of course, given me the opportunity to share but it has also given me the chance on more than one occasion to vent so don’t be surprised if I do that in the future as well.  I hope that I have been able to encourage some people going through tough times and I will continue to try and share what I’ve experienced both good and not so good.

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The Times They Are a Changin’

That’s how Bob Dylan put it and it is as good as anything I can come up with to describe the way life has been in the last few months.  It has been a time of loss, gain and reinvention for Bonnie and me.

After we moved back to West Virginia in April 2014 until August 2017, things were sometimes felt a little awkward.  We were trying to figure out our roles and be as helpful as possible while still allowing Bonnie’s parents as much independence as we thought they needed.  She helped at the card shop every afternoon and I did as much handyman work as I could to keep their house and farm livable.  Sometimes it felt like we were walking on eggshells though some of that may have been us just over thinking things.

August 18th 2017, things changed forever when Bonnie’s Mom passed away.  I talked about this in my last blog “Life Gets in the Way”.  Turns out, we weren’t nearly as ready for her passing as we thought we were.  No one is ever ready regardless of how much preparation is done.

Bonnie and her Dad considered selling the shop but made the decision to keep it going at least for a while after talking it over.  They also considered the longtime customers who really became great friends some of whom said they would be lost without the shop but probably wouldn’t come back if it were not in the family.  Some of them waited a while and others had to work up the nerve to open the door but I think most of the regulars are still regulars.  I’m glad we didn’t run anyone off.

The shop has become a new focus which has changed everything about how we go about things.  Most of the changes have been very good in that Bonnie and I are using skills we used in our past jobs as well as things we are both passionate about which gives us a sense of purpose again.

Bonnie has applied the financial skill she learned during several years in banking not to mention keeping our checkbook balanced through 42 years of marriage.  She has also been able to put into practice her organizational talent.  She has had lots of comments about how nice the shop looks.

Bonnie’s neatly organized shelves

I have been able to apply the computer skills I learned on the bleeding edge when Blackberries were the only smart phone maintaining the shop’s Facebook page.  You can check it out here.  I worked on getting everything correct on search engines like Google, Bing, Yahoo and Yelp so people can find us, get directions or call us.  I have also used my writing skills for newspaper articles and communication with vendors.

The ancient Greek philosopher Heraclitus once said “Change is the only constant in life.”  While the events of the past few months have very much proven his observation to be true and change is sometimes difficult for a tbi survivor to process, I welcome the new challenges and stand ready for whatever changes lie ahead.

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Life Gets In The Way

And we know that all things work together for good to those who love God, to those who are the called according to His purpose.  Romans 8:28 (NKJV)

The past two months have been a blur.  There has been so much sadness with the loss of a good friend, my brother and my mother in law.  All three losses, though, have had good things come out of them like the apostle Paul said in Romans 8:28 “All things work together for good…”

The first passing was a good friend and fellow wood worker Burl Buzzard who was the step father of my brother in law, Terry Benson.  He was a navy veteran who was recently honored at the state capital for his service.  The good part was the time we got to spend with his and Terry’s family.  Terry got to spend time with a brother he had not talked to in years.  It is sad that these occasions are so often what bring families together but never the less; we need to make the most of the opportunities.  Oh, and I was able to add Burl’s wood to my collection and will make some nice projects out of it someday.

The next loss was a lot closer to home when my brother Mike Smith died on August 1st 2017.  I had just started spending some time with him since we moved back to the area four years ago after being gone 35 years.  I did have some good conversations with Mike and was glad to get to tell him that though I could never fully understand what he went through growing up that I was aware of his struggles and was also aware of the great things he accomplished in spite of what he had to overcome.  The upside of losing my brother is the way I have gotten to know His wife Mary and daughter Angie and her family much better.  Mary is in an assisted living facility and Bonnie and I visit her when we can.  I have been taking notes and putting together information from Mary, Angie and others trying to put together a story about all Mike and Mary overcame to be together and the legacy Angie and her children have become.

Speaking of Angie, she is a very creative young lady and makes very beautiful primitive designs from vines and other things she collects from the trees on her farm.  I recently spent three days at a craft fair with Angie where we sold our handmade wares.  I was very glad for the time we had to talk about her time growing up and the positive influence Mike and Mary had on her life.  I don’t see any signs of the struggles they faced when I watch Angie and her children.  That tells me they didn’t bring that excess baggage into their marriage.

One of Angie’s Primitive Creations

The third loss was very close and very sudden.  On Friday, August 11th Bonnie’s mother, Shirley DeQuasie was in her Baseball card shop talking to customers and on Friday August 18th, she passed away with her family by her side.  It was a long week for the family as we spent all day and all night every day taking care of her but it was still an unbelievably sudden loss of someone we all expected to outlive every one of us.

Shirley ran the card shop for almost 30 years, opening it in July 1988, three years after the tragic death of her son and Bonnie’s younger brother, Wilson.  There is a story chronicling the history of the shop on Sports Collector Daily, an online magazine for sports card and memorabilia collectors, written by Bob D’Angelo.  Click here to read it.

Bonnie at the card shop

These tragedies have been emotionally draining, all consuming and are the reason I have not posted on the blog for quite a while.  Things have settled down a little but they will never be what you could call normal again.  Our responsibilities have changed significantly with Bonnie and I running the card shop now and trying as best we can to fill the void left by Mom’s passing.

These circumstances have also given us a chance to evaluate the status of my brain injury recovery and the observations have been both positive and negative.  On the negative side, my inability to focus effectively on more than one thing put the blog on the back burner but the fact that I was able to prioritize correctly was a good sign.  Through all the stressful situations, I applied compensatory strategies like using lists, alarms and the smart phone.  Bonnie actually said she was impressed with how I stepped up to the plate.

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In the Moment

This post is, in a way, a continuation or an addendum to my last post My Shrunken World.  When my world shrunk, my focus did as well.  Not only was I limited to focusing on only one thing at a time, I was also limited to focusing on only one moment at a time.  What I have found on this journey back from traumatic brain injury is that the moment we live in is all we have.  The next moment could be our last so let’s make the most of this one.

Early in my recovery, I started reading books about brain injury and especially survivor stories.  I’m not sure if I was looking for a miracle cure or if it was a feeling of “misery loves company” but I was looking for something I could connect with.  There was a story in a book called Head Cases by Michael Paul Mason that caught my attention.  It was about a woman named Melissa Felteau who was in a car accident and her injury as well as her circumstances seemed very similar to mine. She was a corporate professional, it was a motor vehicle accident, and it was a closed head injury so on the outside, she looked fine.  Somehow, I was able to find an email address and sent her a message though I never really anticipated getting a reply.  You can read Melissa’s story on Brainline here.

I was very surprised when two days later; I received a reply from Melissa that was incredibly encouraging and very informative.  She talked about her struggles both physical and psychological and told me some of the things she did to get moving in the right direction.  Melissa’s journey eventually led her to a system called Mindfulness that uses techniques such as meditation and yoga to dial the mind into the here and now.  Mindfulness has become Melissa’s passion and she is one of the leading researchers and developers of Mindfulness-based cognitive therapy.  You can read several articles about her research here.

In the early months of recovery, in the moment was all I had so mindfulness was easy.  As time passed and I became more aware, thoughts of what had happened to me and what the future could hold, became overwhelming and I started to get depressed.  Many times, I yelled at God and asked him “Why can I remember things I used to do when I cannot do them anymore”?  If I had allowed myself to stay in that negative frame of mind, I probably would have become an angry victim.  Though I still feel those negative thoughts creep in occasionally, because of Melissa’s encouragement and what Jesus said about letting tomorrow take care of itself, I made a conscious decision to live in the present moment as best I can.  My hope is that we survivors can make the most of every one of those moments we have since each one is a precious gift.

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My Shrunken World

I try my best to be positive in all my blog posts.  If I were to sound like a victim, it would undermine the very reason I started this blog in the first place which is to do everything I can to encourage other TBI survivors and convince them there is hope even in the midst of tragedy and despair.  That being said, I have to be as real as possible about our struggles.  I do not want to sound like the people we meet who say “It’s just a bump on the head, shake it off and move on.”  I’m also not shallow enough to think there are not people living with much more severe brain injuries than mine.  I also don’t want it to sound like my recovery has been easy.  It has been a struggle and probably will continue as long as I want to keep fighting.  I love reading about the recovery of people like Bob Woodruff and Gabby Giffords and I know my issues and deficits are different and maybe not as bad as theirs but mine have been challenging enough to make me realize that anyone dealing with a TBI needs all the help they can get.

On May 14th 2008, my world shrunk and even now, over nine years later, I’m still discovering just how shrunken it is.  Just this morning, we were going to pick up my father-in law’s car and wash it. I thought both of us had to go to get the car so one could drive ours back.  It didn’t click that I could drive ours down and drive his back.  Since the injury, I have great difficulty seeing even simple processes all the way through. I have no idea how many times Bonnie has compensated for my lack of foresight because it has probably become automatic for her.  This is just one example of how my world has shrunk because of tbi.

While I am extremely thankful to still have the ability to drive, the experience of driving is much different than before my injury.  Previously, I could actually observe things other than the road and traffic while driving but now, the highway requires my full attention. It’s not like I didn’t watch the road before but now even playing the license plate game proves to be quite difficult.

Another of my most frustrating deficits can best be described as out of sight out of mind.” Almost all tbi survivors have problems with what is commonly referred to as short-term memory.  A more specific term is working memory which is defined as the part of short-term memory that is concerned with immediate conscious perceptual and linguistic processing. My working memory took a pretty serious hit from my tbi. One of my strengths was my ability to keep a lot of “balls in the air” which is a big part of a computer network engineer’s job. After the accident, my working memory shrunk to two or maybe three things on a good day especially early in the day.  On bad days, which still do happen, I can handle only one thing and that is not guaranteed late in the day. “It’s after three” is a line we use a lot when I forget something late in the day. Early in my recovery, three o’clock was about the time I would start to shut down so we turned it into a running joke.  We laugh about a lot of the things I forget as you can read in an earlier post Laughter: The best medicine.  Even though the issues are not really funny, laughter has become a good coping mechanism for us.

Although my world was severely shrunken by my injury, it was not the end of the world. To be honest, a smaller world is not necessarily a bad thing, just different. Another factor is that with the introduction of modern technology, traumatic brain injury today is not as devastating as it was in years past. Smart phones, tablets and adaptive devices as well as far more accurate diagnosis give tbi survivors a much better chance for productive rewarding lives than those even as recent as the Vietnam era veterans.

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