Wednesday, February 29, 2012

Back to the Beginning - New Stormfront: Disability Attorney (posted Aug. 22, 2008)

Yesterday I met with a Disability attorney to see if I can get on Disability, I have to at least try. I hit my wall of fatigue last fall knowing full well I cannot continue to devastate my body and life by the continued, ongoing struggle to just merely survive.

For over two hours she asked questions and I tried my best to dig into the "deep storage" of my brain to answer her. I found it quite gracious all I had to do was answer her questions, instead of having to fill out the paperwork too. That was a huge help for me. I was already on day two of a continuing migraine, so that coupled with an injured brain with very slow processing, I was slower than cold molasses.  Any and all help is greatly appreciated.

She said we may have difficulty proving my case in that I have been able to work in the past. I explained that's just it, I hit that wall last fall and I'm still a Go-Getter, Type-A Personality inside, but I can't continue living at this pace. I've already undone some of my own health by trying to continually work so hard. It's not like I want to be rich or famous, I just want to have a good life. Losing my house and everything, including my pets, just doesn't feel like part of a good life.

My options are few, because I have some resources I've been saving for a long time, I do not qualify for certain assistance. It is a Catch-22 being neither fully abled nor fully disabled.

A disability hearing will probably be in eighteen months. I've already done everything else everyone has suggested to me, everything. I've gone through the systems I once thought were there to help people only to learn systems exist for systems themselves, not for people. I don't think I take this personally because I know others who have struggled in the same system.

I can't help but wonder what happens to people's psyches and spirits when they fight so hard to do the right thing, live an honest life, and find there is no help for their situation. It is almost as if the world speaks to those who are disabled that they deserve to lose everything that matters to them. I always had faith there were systems in place to help people. Maybe they're out there, but finding them, being eligible, and not being put on an endless waiting list seem difficult to find at best.

I find this all tremendously embarrassing. A couple weeks ago I had to go to DSHS for assistance, all I could qualify for was food stamps, but I'll tell you, I'm grateful for any help I can get. At least for now, no worries about where the next meal will come from. But I did struggle all the same with having to go get help.

Perhaps it's pride. Perhaps it's being fiercely independent, I don't know - I was not quite sure if I wanted to cry or throw up! - I do know we were raised to have strong work ethics and to not be able to work myself into being better, or let me rephrase that, being able to work myself out of a disability, feels like failure. It feels more like a life out of control instead of all the planning and preparing we were taught to do as children. We were taught to save, plan for retirement, etc., planning for being disabled just wasn't on my list and honestly it's a struggle. I just never imagined this as part of my future.

I've often said that early on in the discovery of my Brain Injury that it felt too much like I was the center of attention. I didn't want to go walking around like there was this big arrow over my head pointing at me. And, it often felt like I was in a group of strangers, I was pulling open my chest cavity and everyone was pointing at my mistakes and blatant shortcomings I could not see. 

It feels embarrassing, bewildering, and like everyone is constantly taking a microscope to my life, and I don't get to do the same to them. So the vulnerability of all this has never become comfortable in the last six years. Some people are in this to help and have the best of intentions, but oftentimes those who rush in are the very ones who will take advantage of a disabled person who has hit rock bottom...I know.

And I think, most of all, I just wish more than anything to get back to more of a life that isn't so constantly threatened by the loss of everything that looms on the horizon. I haven't known for six years if I'd be able to keep the house or not and I've been fighting like mad to keep that major loss from happening. I have seen what happens to other people in my shoes, they lose everything, and I have fought like crazy to keep that from happening here.

I encountered all this loss of life and purpose because of one person's inattentive driving. If I had caused this to my own life through recklessness or substance abuse I think I could stand letting my life and possessions go.

Isn't it enough relationships were lost, the ability to go to concerts, church, fairs, any loud event, being able to handle groups, heck, just being able to work in a normal environment. All other aspects of my life have been lost to this, must I lose my house and pets too? It is not easy for a social butterfly to be caged, but once her cage is gone, what is left?

I want to get back to being able to make a difference in this world. I miss teaching, ministry, volunteering, having friends, being connected to a community.

Just because I'm disabled now doesn't mean I care any less about this world we live in or wish to no longer make a difference. I want my life to matter, to count for something other than this struggle no one sees.

I want to, as one of my heroes, Mother Teresa said, "Do something beautiful for God."
It is tough to go through this entire process of going from being fully-abled to partly-abled/disabled and keeping my heart and spirit open. It is tough because the news is not often good, so much so I became accustomed to the bad news, and would be surprised and unbelieving at the good news! Yes, it is a tough journey, not for the faint of heart. So, getting help often feels more like bringing more bad than good...

Hope for the best, but be prepared for the worst...

Saturday, February 25, 2012

Farewell to a friend: RIP Thomas William Weese AKA Totemwood Tommy

[This post, this blessed, difficult post has been a long, long time in coming.  I have wrestled with it, mulled it over in my head, let it rest, wrote and re-wrote countless times.  As with all things TBI, emotions zap us of precious energy.  Oftentimes, the feelings just need to be until the TBIer finds strength.]

My first recollection of Tommy was at Brain Injury support group in Bremerton.  He, with the help of the group facilitators, led the group on an interesting exploration of Personal Data Assistants (PDAs).  He emphasized the importance of having good tools to help us function better.  He had handouts and even passed his own new PDA around so we could see one for the first time.  I did not know it then, but this was just the beginning of many things he would freely teach myself and others.

Later on, when the group moved to the new location it was he who approached me and we visited for a little bit.  On the outside, Tommy looked like everyone but used a cane, it’s only after talking with him you’d begin to hear or see his Brain Injury. 

Admittedly he didn’t make me feel welcome in my new TBI world because he said he didn’t size me up as a person with TBI.  Great!  I didn’t fit in the ‘abled’ world, nor did I fit in the ‘disabled’ world!  That would be my first of many encounters with the two worlds I don’t quite fit in – partially abled and partially disabled. 

It was seeing how he was in group that I caught first glimpse of my new self.  When group got to be too loud, he did not get agitated, angry or loud, he shut down.  That’s exactly what happens to me!  The energy has been zapped and we’re pretty much toast.  Bummer is, we still have to get through the rest of the meeting (or whatever activity it may be) and get ourselves home!  Times like these Tommy would say his brain budget was low and he needed to take a break.

He also termed the phrases his ‘brain went hikey’ or his brain ‘went out for a hike’ and he would have to take a break and wait for it to come back.   

In time he came to see more of my deficits (I wore a pretty convincing mask; I already knew the piercing rejection of being my true self.)  Tommy invited me to join his online group where I was able to share my woes and more often than not, glean experience, strength, and even hope, from others further along the path.

Tommy had troubles of his own but he also had an open heart, willing to help those who were bewildered and lost in the TBI wilderness.  If people truly wanted to get better and do better in their TBI world, Tommy would make the investment in offering to help them if he could. 

He taught me SO much and his death caused all those things to come to the forefront.

He always talked about ‘workarounds.’  I’d never heard that word before, he emphasized with TBI we need to find different ways to do the things we did before without even thinking.  Oh how I would bemoan “compensatory strategies”, which we could all see was about as smart as trying to live without oxygen!  LOL!  :) 

He talked about the harsh realities of having lived in a group home and how tremendously hard he worked to get out of there.  He was not a person who was overly dramatic, so you know when he said things were hard or bad, that was probably an understatement.

He taught me about having “to do surgery.”  That was his way of saying I needed to cut away parts of my life that I could no longer manage…I can’t tell you how dreadfully painful that was to hear.  It was a crystal clear truth I fought like hell to avoid.  But, he was friend enough to be straightforward and honest.

He talked of having to give away his little dog he loved so much because he was afraid he would hurt her.  He hadn’t, but he also knew he was capable as a TBIer.  That, my friends, is love at its finest and another piercing truth for all of us pet owners to consider soberly, honestly, and maybe with the help of an objective third party. 

He showed me how to do things like set up a web page even though it was very, very taxing for him, but I learned it was okay to take breaks when our brains ‘went hikey’ because that’s what I saw him do.  It was/is a challenge for me as a former Type-A personality.

He taught me about having a payee which is what I have now too.

He would describe his coming out of the coma and into a world full of molasses – what a great analogy.

Coming from him, simple encouraging things like, “Hang in there, Kiddo,” meant a lot even though there wasn’t a generation gap…LOL…or at least one I didn’t see!  :)

He would often talk about feeling like he was 8-years-old going on 80. 

He always talked about adapting to fit the situation, and, his coming from a strong 12-step background, so much of what he had to share was indeed rock solid.

He said there were many times he would start to write an email but was unable to finish it, so he would just save it on his computer and leave it until he had more brain bucks.  He stressed the importance of THINKING and giving ourselves time before we hit the send button! 

Hearing him encourage me or others, “It does get better” meant the world. 

Tommy was the inspiration for me trying my first latte because he’d tell group about his rare treat when he’d travel via ferry to Seattle.  Those long and exhausting trips of his to Seattle, by the way, were to go to the University of Washington’s Brain Injury Program and be a living example of TBI.  Awesome!

I spent time with Tommy because we lived in the same city, and, when he talked about lighthouses, his eyes lit up.  I got to drive him to the Point No Point Lighthouse a time or two where I felt his spirit was light and free; it was a great feeling to give back to him.  It is no small coincidence in my mind he loved lighthouses.  He was a light for many of us TBIers walking in such a profoundly dark and scary place. 

Tommy often spoke of the importance of finding a passion.  He said he didn’t quite understand the connection between having a passion and how the brain works, but said you can find a TBIer who can’t talk about much, but when they get talking about their passion, it’s like the circuits all light up.  Suddenly they have something to talk about AND they CAN talk about!  That was certainly something I could NOT relate to at that point in my life.  My life for many years was survival, nose-to-the-grindstone mode, but it means a lot to me now. 

Think about what brings you joy, what makes your eyes light up, what makes all your senses feel alive?  You don’t have to know right now, today, this month or even this year, just keep listening to your heart, experimenting, and find a passion.  You too are a lighthouse; as I’m sure Tommy was completely unaware of being, you might just not know it yet.  :) 

In time, Tommy outgrew group, as often happens for high-functioning TBIers.  I had grown to feel the same way - we go to group to help the newcomers by giving the support and encouragement we received but we really needed a group for high-functioning TBIers to talk, brainstorm, and reason things out.

By the time Tommy left group, he had sold his truck after suffering a seizure while driving.  That was one very, very tough loss on him.  One thing you may learn with TBI, it is oftentimes a continuous series of losses even many, many years post-injury, as was Tommy’s case.  He worked through the grief and feelings and decided he no longer wanted to wait for a bus in the rain or have to deal with the difficulties of scheduling and riding the less-than-courteous transportation for us disabled folks.  Tommy saved his money for a recumbent bike.

He showed me a picture of the bike of his dreams, and I was concerned for his safety.  He reminded me we all have to die somehow…but he was so excited, and like Tommy, when he had a goal, he would go through the fires of hell until he achieved it. 

With him no longer getting rides from me to group and my moving, we lost touch.  It wasn’t until last summer (or fall?) I learned of his passing and it hit me hard.  I remember him saying he saw himself dying homeless and alone and I told him his God wasn’t big enough.  I regretted saying it then and still do.  And I regret not being a friend at the time he spoke with excitement about his bicycle because I do understand feeling caged and missing one’s blessed personal freedom.

Tommy passed away July 5, 2011, alone in his single wide trailer, one day after the anniversary of my Mom’s death.  It was his heart, same as my Mom.  Whether heart disease or heart attack I do not know.  It is a sad reminder those of us living at or below the poverty level often do not have the healthcare we need.  I have to wonder how many TBIers die from heart-related illnesses or prematurely due to lack of quality care.  TBI can take a terrible toll on our hearts, literally and figuratively.  And, as oftentimes happens, we don’t take the best care of ourselves anymore either because everything is much, much more difficult, money is tight, or depression.  Brains may be changed, but our bodies still need good nourishment, exercise, rest, fresh air, etc…

I learned after his passing that Tommy had joined an online group of folks who share the same passion for recumbent bikes and I’m delighted to tell you he made some good friends there too.  It was they who hadn’t heard from Tommy, concerned, they drove all the way from Enumclaw to Bremerton, WA and found him.

How do you grieve for that pivotal someone who comes from such a deep place of understanding and validation, who shows you you’re not going crazy, has gone through so much, and still has so much to offer the world?  His life was like so many TBIers, always a struggle, always swimming upstream, but, he still managed to care for other TBIers.

I still get teary-eyed because he was a good friend.  He was no saint, none of us are, and knowing Tommy, he’d be the first to admit it!  He would want to be remembered honestly, warts and all.  He did rub some people the wrong way, like we all do, he had his issues or demons (as he called them) of his own to deal with, as we all do, but, he would always look introspectively and find his responsibility and make amends if needed or was possible.  How many people even without TBI have that kind of transparency and courage?

So Tommy, this is for you, for the difference you made in my life, and in the lives of many, many others.  You were nothing less than a real friend when I or anyone felt groundless, adrift, or crazy on this hellish path.  You showed us what perseverance, acceptance, never giving up, being real, and courage were in 3D.  Pun intended, you did ‘carve’ out a good life for yourself!   (Tommy was a wood carver at the time we met so even with the cane you might not suspect TBI as it was one he’d made himself). 

And this is for you, dear reader.  I get to share the story of one fine person with foibles like all of us, who chose to define his own life, honor and respect and accept his limitations.  It is not easy, it is not like anything you’ll ever see on TV or could have imagined, I will tell you that straight up. 

I don’t share this story so you’ll try to emulate Tommy or to make you feel like you’re not doing your TBI right (LOL – no such thing!)  I share this to encourage you to be 100% authentically you.  No one is perfect, but it is vital to still find meaning & purpose in our post-TBI lives. 

Of course it’s easier to give up, or at least it feels that way, but in reality we are cheating ourselves and others.  I have gotten stuck in the “I can’t” or “I’m no longer a productive citizen in society.”  Yes, our roles have changed, no doubt, but we can still make a difference, or as Tommy did so well, bloom where we’re planted. 

We have work to do, to be a light to those joining us on this same, well-worn hellish path…to tell them from a place of deep validation and understanding when we too can say from experience, “Hang in there, Kiddo” and “It does get better.”

On a trip to Point No Point Lighthouse, June 2005

Thursday, February 23, 2012

Josh Groban - "You Are Loved (Don't Give Up)" [Official Video]

Because we all need reminding every now and again.  You are loved.

I love the beautiful people from many nations. 
Yes, there is room enough for everyone in our hearts. Everyone.

"Don't give up, it's just the weight of the world..."

Wednesday, February 22, 2012

Back to the Beginning Destination: Diagnosis (posted 8.18.08)

With my ongoing struggles, I still knew somewhere deep down inside that I had changed, something about me was, well, 'different.' Having lost my job with the chiropractor and my spinal care was not complete, I went to another chiropractor. I asked her too, would she please refer me to a neurologist as I knew I was different. She said she would refer me to one an hour and a half away, it never happened. I didn't find I was getting better under her care so I went to another chiropractor. With this third chiropractor, I posed the same question, she said we needed to get my x-rays and we'd go from there. Fortunately she had an employee who suffered a Traumatic Brain Injury so she had first-hand knowledge, and her answer to me about a referral? She said that would be the prudent thing to do. Thank God.

In March 2003, after a visit to a neurologist and struggling to figure out how to draw a regular non-digital clock and many other tests, I was diagnosed with Traumatic Brain Injury. I was referred to Occupational and Speech Therapy, and if need be, there was a Social Worker I could speak with as well.

It was there I learned about Brain Injury, that I wasn't going crazy, and in fact, many of the things I was dealing with were considered 'normal'.

Instead of rejection, shunning, or judgment, I walked into what I call "A Garden of Understanding," and that I "walked amongst angels" there. They understood.

They treated us with dignity and respect, that all we were experiencing was normal.

They didn't laugh at me for not being able to mark my own appointments down on the calendar they printed out for me because I couldn't figure out where I needed to write them.

They didn't laugh at me when the wires in my brain got crossed and I showed up for my appointments on the wrong day.

They didn't criticize me or tell me to cheer up when I was depressed from this dark, bewildering world that now surrounded me.

It was there the real healing began, a deep validation of this jagged path, and where I learned about real ministry. They had a plan for me, but if I came in struggling with something else, we dealt with that. I learned how often we fail at trying to help people because we have agendas of our own (often well-intended, but well mis-directed!)

In many ways, I had to start over learning the things I once knew and took for granted. I had to learn 'compensatory strategies' to help my brain cope with these new found and validated losses. I had to re-learn balance, I would get this weird whoohoo kind of feeling, like being dizzy if I moved too fast. I had to re-learn how to be able to do two things at once like exercising and trying to count. It was the oddest thing for this Go-Getter who had been quite the multi-tasker.

I distinctly remember my neurologist telling me I would do much better in a slower-paced environment, that if I could learn a new language, living in a foreign country would be best. Living in a quieter, slower paced world would now be where I fit in best, but the transition? Well? I didn't really understand it would be for my best to go willingly!

At this time I was working for friends in real estate, they had known me from before the accident and they said they definitely saw a difference in me. It is a strange thing to be the same before everyone, some seeing the changes, some denying them or saying I had chosen to be different, or whatever. I wish it were that simple. It took me years to figure out the firing from my job was more personal than professional, and that hurt a lot. They had been my friends, or so I thought. Even a patient I knew outside of the office who also had a Head Injury knew, she had seen the difference in me while I still worked for the chiropractor. It was a terribly painful loss, it had been my ministry and purpose, and I would later learn, it was a very valuable part of my routine, and once that changed, my world would not ever be the same. The brain needs routine, consistency, and not a lot of change when it's healing. That routine, being accepted and a part of a system, as well as community, were my foundation. But I had struggled there, made mistakes and felt like the office problem.

I continued rehab for just a couple of months until my auto accident insurance coverage ran out. I had been discharged from chiropractic care, was still seeking alternative medicines when I was rear-ended a second time. I had just started back into my old routine and was giving myself a day off to sleep in before going into work. Up until that day, being rear-ended again was one of my greatest fears.

This time, twisted and turning to the right, not on the freeway, it still managed to do some damage. All that work I had just done at rehab, gone. Once again, my memory had been lost as if someone took a magnet to the hard drive of my computer. I cried calling 911, I cried telling the poor officer that arrived on the scene, trying to tell him this was my greatest fear, I so didn't want to go back to rehab and start all over again.

I did not know until much later after working my tail feathers off again at rehab that Brain Injuries are cumulative. While there would be some progress, after two years, that would be the majority of progress I would see. There would be little bits of progress, but after that, plateau.

I did everything everyone told me to do, diet, exercise, brain exercises, more compensatory strategies, rest, taking breaks, hydration, vitamins, support groups, everything. Despite my trying to do everything humanly possible, I could not undo the injury to the control center of my body. And this time, I would have something new to deal with, being sensitive to indoor and outdoor lighting.

I now work from home as an accommodation to my extreme sensitivity to noise, movement, lights, distractions, etc. All that used to energize me in my old life now exhausts me. I learned an injured brain has to work three to four times harder to do the things it used to do without any effort at all. Between that and over-stimuli as mentioned above, I can get tired tremendously easy. I have joked in the past that me going from a Go-Getter to the lifestyle of a Monk just isn't going to be a smooth transition!

Because of short-term memory issues, relationships are difficult to maintain. A part of relationships is shared experiences to which I am now limited, and remembering those shared experiences. I have missed out on church, concerts, traveling, even my high school reunion because of my disability. It has taken me literally years of saying to myself, "I am disabled" or "I have a disability" for it to sink in. It was terribly difficult, and still is at times, to accept. I have no troubles with anyone else being disabled, but for me, I struggled. We grew up with strong work ethics, if something didn't go right, you just worked harder! Good honest work always paid off. Until this.

I wish I could candy coat this and say it all turns out great in the end, but I can't. I have more questions than I do answers and currently my energy and focus is on one of the last things that remains from my old life, that is, my house and pets. How do I function in this world where I'm not fully-abled nor am I fully-disabled?

My intellect has remained, and if you saw me on the street, just like many other Brain Injured folks, you wouldn't be able to tell the difference. But the grand struggle, the great Catch-22 is I can no longer work full-time. I can't do the work I used to do and due to short-term memory loss, can't learn a new job and actually remember how to do it. I've been doing the work I do now (piecework, real estate) for five plus years now. I still don't have the job down, and yes, I do get laughed at for my mistakes.

I have been turned down by Social Security the time I applied years ago, and figured I just wasn't disabled enough and I'd have to go back to working harder. I did that, and it didn't work. It's not that I don't want to work, but I'm learning that I have a tremendously small balance scale. Either I can have a house and a job and watch my health fail (oh the joys of stress!), or I can have a life and watch my health get better.

It's tough, because in so many ways, the limitations I have are unseen. If I overdo, I can spend the next several days unable to get out of bed, too tired to even eat, waiting for my brain to recover (I read years ago it can take an injured brain up to ten times longer to recover than a non-injured brain.) Or, I can have migraines, or, as is the current deal, other body parts start to act up or shut down because of continued ongoing financial strain. I've been doing this deal for six years, trying to keep my home and the only stability I have in life right now. And, to keep my pets. I don't get to have much of a social life, so my pets are my family, they help me feel connected and more human.

And it's not that now I'm disabled I stopped desiring the normal things of life, happy home life with a marital partner, making a difference in the community and world. I still dearly miss being connected. I miss volunteering!

What would you do in my shoes? You're down to your last six months of savings, you haven't had health care insurance in years, your ability to work full-time is gone, the prospects for learning and maintaining a new job are dismal, the concept of moving is about the same for you as would be moving an elderly person.

So many choices have been taken away from me, the basic things I dearly wish to keep are my home and animal family.

Where do you turn? Where do all the disabled people go in this world? What do you do when you've exhausted all the resources you can find?

How do I express need without sounding needy? How do I express desperation without sounding desperate?

But most of all, what are the long-term solutions where the six years of struggle and decline of health end once and for all? And I can get on with the blessed gift of truly living?

Wednesday, February 15, 2012

Back to the Beginning: A Life Filled with Questions (Posted 8.15.08)

(How I was initially injured in a split second in June 2002).

A Life Filled with Questions
It was a beautiful summer day, I was heading to a volunteer orientation on the other side of town. I'd left work in plenty of time to go home, change clothes, get my dog and be on our way. We were just about to our destination when I noticed the freeway traffic ahead of us stopping suddenly.

Because I aced Traffic Safety in high school, I remember the teacher's words, "Always look for a way out." I saw the car in front of me struggle to stop in time, the hitting of the brakes causing the back end to rise and fall. I knew I would swerve to the left as there was enough road ahead I could end up parallel to the car in front of us, and avoid hitting them. As I turned the wheel to the left, bam! Out of nowhere a car struck us from behind and forced us off the pavement into a sharp, downward facing embankment. The force caused my big dog to be thrown from the back seat into the dashboard. Dazed and shaking I got out of the car to see if the driver that hit us was okay. Traumatized, my dog didn't want to stay in the car, but being in the embankment between oncoming traffic, I had to force her to stay inside.

The gal whose car I swerved to miss left the scene! Someone said they'd called 911, there had been an accident up ahead like the one we just had, the state patrol were already on their way. Wow. The gal who hit me asked to use my cell phone, and I said yes. In time, the state patrol came, took our statements and towed the gal's car who hit me. Her car was totalled, I'd learn later, mine would be too although drivable, it would no longer have resale value.

I still went ahead to the orientation, but had trouble following what the speaker was saying. We were supposed to find a partner and roll play, but heck if I understood what he meant by that. It was odd, I just couldn't understand what he was saying. During a break I called the chiropractor I worked for at his home, we had been close friends. He asked where I hurt and I said I didn't know. I noticed my muscles were stiff all over. He offered to come into the office the following day (his day off) to get x-rays and check things out.

The following day after the x-rays he showed me the damage, the centimeters my neck was out of alignment demonstrated the amount of force my neck sustained. For each centimeter he said you can add ten pounds of pressure. It was a lot! Spinal adjustments which I'd had for years suddenly became very painful as we tried to correct that which had been undone in a split second. He said basically, my back looked like a corkscrew, I had been twisted when I was hit and then whip lashed. Wow!

In time, I began to feel like my head was heavy, like if the wind blew too hard, I'd be knocked over! I remember saying my body felt different, like a sardine that no longer fit in the can and I felt like a Brontosaurus, like I had sprouted a tail! It was the oddest thing, I felt like my hips would not cooperate to work together. I remember saying I think they'd work better if they could be separated!

Although my bodily injuries could be measured and documented, I felt "different." I mentioned it twice to the chiropractor asking if he could refer me to a neurologist, but he said they wouldn't be able to tell me any more than I had a Concussion and it would take time to heal. The chiropractor could acknowledge I had "a lot of things going on" in his terms, meaning I had a lot of injuries, but never once was Head or Brain Injury brought into the equation. Somewhere deep inside of me, I knew I'd changed, but didn't know how.

Everything seemed so much more difficult. I'd had injuries before, but something here was very different. In addition to all the body pain, I found my behavior changed, my emotions different, I couldn't fight this nagging fatigue and exhaustion, I would become tremendously tired after things I used to be able to do fine. I couldn't follow conversations, I got confused easily, I seemed to get agitated and anxious when I had confidence before. I was making mistakes at work, I could not remember the scripts I had previously memorized. I couldn't keep up with changes that were being made in our procedures every week. I thought I was going crazy. I began to feel like the office's problem.

Our family had previously scheduled a big reunion and my accident was just two weeks prior. I had to catch a plane, and at that time, our airport was being remodeled, the lines were incredibly long. I remember trying to say some intelligent, amusing comment to the person in front of me and it didn't come out at all as I had thought it out. I was embarrassed and didn't say a word after that. I remember being so tired I couldn't wait to get on the plane to sleep. It was not a lack of sleep that was causing all this...

At the family reunion I could not recall names of the people I'd met and me, a people person, could not think of a single question to ask anyone! It was the oddest thing, I was there, but not completely. I remember having to take naps...okay, are they naps when they last eight hours?!! I would sleep but never felt rested. What was happening to me? Why couldn't I make myself be myself?

After the reunion, I returned home exhausted and again slept a lot. I figured all of it was due to the physical injuries from the accident. I'm not sure if it was when I returned to work that the doctor's wife had to come into the office and help me run the front desk or not. But at some point in time early on it was obvious I wasn't able to do my job like I had before. The confusion, forgetfulness, fatigue, etc., were all bewildering to me.

In time, the mistakes and un-selflike behavior caught up and I was fired from my job less than two months after I purchased my first home. My bosses, who had been dear, dear friends, who even helped me move, thought I had chosen my behavior. Why would I change like that? Who would choose to be a certain way and then polar opposite after a car accident? For some reason they could not see the inner struggle nor recognize I wasn't the person I had been only because of the accident. Oh how I wished I could just flip a switch and be my old self!

...more to come!...

Monday, February 6, 2012

The Ares and the Are Nots

As I enter into the tenth year since my first TBI, I've been thinking a lot about my life experiences post-injuries, the people who have helped me and those who have not.

I believe there are two kinds of people:  The Ares and the Are Nots

The Ares have the ability to see through a disability, mistakes, shortcomings and are able to find the beauty that still remains.  They are the ones who still encourage the true spirit untouched by tragedy or trauma.  They treat others with a beautiful, strong,  and graceful  dignity, empathy, and respect.  They are the ones who can see, as Josh Groban's song says that "You're still you."

The Ares are the ones who love you to the core because they have an unconditional love.  Instead of labels and expectations that chain us to the impossible, they have hope.  They themselves have a rare grace, dignity and confidence of their own, they naturally and freely extend to others.

Succinctly put, Ares build people up.  They reflect the goodness they find in everyone.  They are able to let go, their love seems limitless like the sky above, they found the key to happiness is unconditional friendliness for themselves and everyone they meet.  They are honest, transparent and while they are hopeful, they cannot offer false hopes.

The Are Nots, on the other hand, are the ones who need us to be our old selves.  They are indeed chained to the past and their needs are most important.  This is a difficult character defect for most TBIers to deal with because it's often masked as rejection or betrayal, so it hurts.  A lot. 

The Are Nots are less flexible and fluid to people or anything changing and oftentimes find a difficult comfort in blame.  

The Are Nots communicate both verbally and non-verbally, "I don't accept you," or "Why can't you be like you used to be?"  This is confusing to TBIers because you see, we're not the only ones who changed with the injury.  You changed too.  You no longer love us like you once did, or accept us like you once did.  So I guess the question TBIers ask is, "Why can't YOU be like YOU used to be?"  or "Why can't YOU accept or support me where I am today, right here, right now like YOU used to?"

Life is short. 

Are you an Are or an Are Not?  Do your beliefs or the way you live your life lend themselves well to being an Are or an Are Not?  Will you look back on your life with gratitude or regret?