This post was written in June of 2013. I am choosing to leave posts in here that share my struggles of coming back from the brain injuries I had. I am in a much better place now, (which is the material for a new post) but this is where I was at in the summer of 2013.
Thank goodness it’s Saturday! It does not have quite the same ring as TGIF since there are three syllables in Saturday but the gratitude for this weekend is heartfelt.
I have not written in here for a long time. Yes, part of it was due to the never ending work of getting this website to what I want it to look and act like – but I just posted about that in The Blogging Bog post. And part of it was due to not having much time because I have a lot on my plate right now. But part of it was also due to just feeling too much to write. And again, when I am feeling a lot it is scary to write publicly on a blog like this.
However, to not write – because I am “afraid of what people will think” – is spurious or inauthentic in regards to what life is like with a brain injury.
You see, I do not look or act – at least in public – like I have a brain injury. And I certainly do not want to be known by that label either.
And I am simply not a complainer. I deeply believe that people want to be on a winning team; meaning that I want to be seen as a winning person whom people will want to be friends with, want to do business with, are drawn to. Of course, positive, winning, vibrantly alive people are the type of people I am drawn to as well, so it makes sense that I expect that others would want the same.
Therefore, there is a voice or belief that people will think less of me and not want to be around me if I admit that I am having a hard time. That is stupid, I know. Just as talking about ones strengths is not bragging, so too talking about ones difficulties is not complaining. But old habits die hard.
So, what is the long preamble about? It is to make me feel comfortable about admitting that it’s a long, long road home and I am tired.
I struggled for seven years before I was finally diagnosed with a brain injury; specifically post concussive syndrome due to multiple concussions. (I had not even had most of the concussions officially diagnosed because I was so private about the problems I was having that I did not show or tell enough of the symptoms to my doctors.) I was finally diagnosed in January of 2009, but did not start getting any help until June of that year. And even then, I only was able to get 14 weeks of rehab therapy before I went back east to take care of my mother for a year. Then I received another 5 months of rehab when I returned in the fall of 2010. My last rehab appointment was February 17, 2011.
Now, don’t get me wrong here. I have improved a lot and continue to improve. In fact, the improvements stand out clearly when I look at things that I do on a yearly basis. For example, each Memorial Day Weekend I emcee at the Northwest Folklife Festival. Each year I am amazed at how much better I am; how much I have improved over the previous year; how much closer I am at getting back to normal operation. This year was my best yet. And I am sure that I will be even better next year.
And that is all true and good . . . but I have now been saying “I am sure that I will be even better next year” for 11 years . . . and I am feeling worn down.
Depleted is actually the word that keeps coming up. Not really tired. Definitely not defeated. Just depleted.
For years now, I have thought that being back to normal, and especially success in the form of fully being back to work and making a good living, was just around the corner. That I was almost there and just had to work a little harder.
I have not gotten “there”. I have not come “home” to anything even close to financial stability.
I am in this weird No Man’s (Woman’s) Land.
I know I am continuing forward. I hope and even think I am making progress. I have many irons in the fire heating up. I have recently had some great networking connections with people. I have two exciting meetings scheduled for the week after the Emerging Media Conference that could lead to something. . . .
But the possibilities do not lift my spirits any longer. It does not give me hope. I am too depleted to be able to raise the feeling of hope. I have had hopes dashed against the sand and swallowed up to the point that I am simply depleted.
I do not feel hopeless. Hopeless is a misnomer because it should simply mean without the feeling of hope but instead it means despairing. I do not feel in despair or despairing. I am not beaten down.
I am simply depleted. I have used up the last dregs of hope. I have used up the last dregs of thinking that if I only try or work harder that things will change. I have not given up. I am still working hard. But I am depleted.
I have no real choice but to keep on walking forward and there is no other choice I would want than that. But I do wish I could feel less barren and dried up inside.
One thing I want to emphasize is that this feeling is inside of me; not at all external. I have good, loving friends around me. I have lived in the same apartment for almost three years. I was homeless for 2 years due to the brain injury; I never was on the streets but I was essentially living out of a well-organized storage locker, staying the nights with friends or house and pet sitting when I could, and sometimes staying in my truck.
Those were dark times! This is not a dark period. It is a dried up and worn out period.
I will rise again. I know that. It is who I am. The brain injury has not changed that.
As the title says: It’s a Long, Long Road Home when you are remapping, rebuilding a brain. The reality is that I or anyone can never really go “home” again. I have to build a new home.
That is what I am working on. It is just a lot harder with a brain injury. Not just for me; it is harder for every TBI survivor. And sometimes we just get worn out.
A poem that I picked up in 1978 from a professor’s door comes to mind.
I left here last night
and underneath I was thinking
I just don’t want to be a leader, Lord
I’m sick of hearing that stuff
about marching to your own drummer.
I don’t even want to parade.
My legs ache.
I am weary of hearing the words
“Involvement” and “Responsible Leadership”
Why can’t you use just a plain ordinary follower?
Faith is not being busy;
Busy in some solid house where you never fall down.
It is building that house board by board
even on sand
and the cold agony of standing alone.
It is raising your arms
and hanging new pictures on the wall.
by Mary Louise Roward