I have just come from a one hour interview and then two hours of cognitive function testing where several areas of my brain skills were challenged to see just where I lay after suffering a stroke three months ago. I have been looking forward to meeting with a neuropsychologist since it happened, as I know where I am generally deficient and was hoping they could direct my rehabilitation.
During the testing, I was obviously struggling in a few of the tests to the point that my discomfort was visible in my body. The tests aren't difficult per se, but they are challenging for pretty much everyone, as it is time weighted. So after all of the tests and me feeling like a complete idiot and unable to complete the simplest of tasks - I got the preliminary results.
Compared to the normative baseline, all results were average or above.
Do you know what this means?
Regardless that I can't do my work or how it impacts my life in multiple ways, they aren't going to do anything more for me, because I am "normal". See the problem with using averages?
"We are not going to fix your broken leg Usain Bolt, because even with it broken, you are faster than the average person."
I am no mental Usain Bolt by any measure, but I do lean heavily on my cognitive abilities to do my work and interact with life in general. Forty two years of life doing what I have been doing has got me to this point career-wise and in my personal life relationships and now, I am fundamentally different - even if "normal" by the standard measures. The normal person doesn't live my life however, I do - an apparently unnormal person.
My wife was asked to be there for the first interview part and she was bringing up how much I struggle with various things, how the conversations I have are different and how my personality has changed. She also said how usually I think very quickly - but now I am more of a shadow of what I was.
Great.
This is perhaps a larger issue than my inability to work, as what she is saying is I am fundamentally different, which doesn't just affect me, it affects her too, and every other relationship I have in the world - including all of those I value. While I can learn to accept my new-found place in the world of average, it doesn't mean all of the people I associate with me are going to accept me as it. It is not that they are going to abandon me directly, but once people change, relationships change too - with some getting stronger, some weaker.
The psychologist asked various questions including whether I have suicidal thoughts and before I answered, my wife said, "be careful what you say here", as she knows I think about it a lot. Not because I am suicidal, but because I am not frightened to think about all of the various negatives and actually seek them out to think about, much of the time.
However, what I said is actually depressing me, is the inability to get any concrete help, especially considering that it is affecting my life heavily. Sure, I can sit around and watch TV, cut the lawn and change a lightbulb - but is that living? If I am not growing and creating, I am not moving and may as well be in that corner, drooling. So, they will help the person literally drooling, but not the one invisibly drooling. Depressing.
What I am going to have to do is spend some time reflecting on my options going forward, working out new strategies for living my life, even though it won't feel like my life at all - at least at first. Over time, I might grow into the new me, but to begin with, there is a kind of "split personality" as I am both the practical me today and the me that thinks and remembers the other me of the past. As you can imagine and probably recognize, this is hard to come to terms with and explain to people, but it is also probably valuable to try.
As they say, describing the problem well is half the battle won toward finding a solution, and I am glad that I have a somewhat creative path to take this journey. I believe that it would be quite easy to ignore it instead and act as if there is nothing wrong - which is kind of what the psychologist offered in form of medication, something to take away the associated anxiety so that I don't think about it. I do enough "non-thinking" already, thanks.
But, I am tired. I am tired of not getting the progress I had hoped for and I was conservative in my wish, knowing it was going to take time. I am tired of being as open and as truthful as I can be about my need for help, and being told there is nothing that they can do. I am tired of seeing the look of pity on people's faces, as I don't want pity, I need strategy. I am tired of jumping through all of the hoops and landing back at square one, which is dealing with this myself and finding my own path.
Of course, my experience informs me this is to be expected, but I was hoping that this time it would be different. Experience is a terrible thing to have as, ignorance is bliss.
While I am disappointed with the outcome from today, at least I know for certain that I am on my own to deal with this, using the resources I have available. Maybe in hindsight, it will be "for the best" and I will come out on the other side stronger for it. But, experience informs me on this too and at some point, overcoming fails and being overcome succeeds.
I have taken a beating and am a little bruised and bloodied, but I am not yet beaten. If I am not doing something useful, I am just taking up space - so I best find something useful to do. There are still options in front of me and some support behind me, it is just a question of how long I can survive until survival alone is not enough and whatever I am says, life deserves more.
Life is a continual process of growth. When it stops, it ends. There are many ways to die, but I am not planning on being one of those who stops living, while their heart still beats.
Taraz
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