Category Archives: Multiple Sclerosis

Animaniacs, foster care, Multiple Sclerosis, psychological impact of adoption, symptoms, understanding MS symptoms, word search

When Words Fail

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One of the most frustrating changes in my personality brought on by MS has been my frustration with my lack of confidence in dealing with emotionally charged situations in conversation.  For years, I know I’ve frustrated my wife by staying quiet in arguments saying only I need more timing to get the words for my emotions correct.  I’ve long played wheel of fortune trying to get the words in my head out of my mouth.  Heck, I’ve spent 5 minutes trying to get my wife’s name out in a conversation at work.  When this is added to a pressure for an immediate response, the wrong words come out.  Knowing this going in to situations, I’ve come to trust written modes of conversations more.
I ran across a situation this week where this lack of desire to speak to a problem ran afoul of a time ripe for misunderstanding.  In trying to explain why a date was no good for my family, I pissed off my mom.  I don’t begrudge her anger and frustration at us being unable to come on a particular day.  To make matters worse, in hearing her frustration, it became clear how little of the impact of my MS is projected in other matters.  
How can I project out how difficult it is for me to take care of my kids by myself at home, much less on the road?  I can tell people how J buttons my shirts so I can get to work on time.  I can tell people I feel more pain.  I can even make the point I keep massive numbers of dates and tasks on a calendars at work, but I trust J to make and keep our home schedule because my mind simply can’t track that much any more.  Ultimately though, I can’t convey how much I have to rely on J.  This weekend with J having the flu and K sick has certainly brought this need in view.  With all my mistakes, I have an Animaniacs’ quote stuck in my head, “Eeee Gad Brain.  What did you do that for?” Pinky and the Brain  Naturally my brain is stuck in the role of Pinky.
For a while I wished people close to me could understand what having my MS is like. Then I realized the only way they could would be to live it, and why would I wish this upon those about whom I care? No, the only people I might wish this upon are people for whom I don’t care. If I really don’t care about them, why bother to wish ill for them?
No, I’ve come back to the ultimately I am as alone in my experiences as I am in my dreams. Sometimes I am lucky enough to find someone to share parts, and these parts are the better for having been shared. What more could I really want?
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On the fostering front, I was at a presentation this weekend talking about how adopted children always come back to wanting to know more about their biological family.  The timing was remarkable when I got home and A was talking about sitting in traffic with K, and her sister.  When I asked her about her “sister” and who she was, A was very no committal, almost as if she was scared to talk about her.  I asked if she was nice to K too like she was, and A was quick to grab at the olive branch, and she beamed when I said “She probably gets the caring from you.”
A week after talking about O’s alien parents, the point of the talk about how their origins always being in our kids’ minds seemed spot on target. 
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adoption, defining success, definition of humanity, feeling different, human brain, map of human brain, Multiple Sclerosis, separation

Done on the Cheap for $100 Million

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100 million dollars to create a map of the human brain and how it works is an incredibly audacious project.  If one accepts the primary aspect of being human as the ability to think, this project is looking for and mapping out what it is to be human.  What makes us us?
When we spent money to break the code of DNA, it felt doable to this uneducated in biology outsider because we were looking a relatively fixed length code.  We were looking to match what we saw in multiple observations looking for similarities between observations and part of DNA codes in front of us.  It seemed like an expansive algebra problem where with enough observations, we could figure out the variables.  I will grant the numbers were huge, but the process seemed fixed from a mathematical standpoint.  We spent 2.7 billion dollars for the code.  Now we have a proposal to map the brain, and we fund it with a small fraction of what it cost us to break the DNA code.  
I am a bit skeptical as an outsider, but I am hopeful.  My skepticism comes from acknowledging a few hurdles that seem insurmountable at the start.
1) The brain/neural network is a complex system.  The whole theory of complex systems came from studying the brain and neural pathways.  Inherent in the theory of complex systems is the impossibility of predicting the impact to the entire system of removing any one peace.  We see this all the time with MS.  Patients like me get MRIs regularly.  With the dozen plus lesions on my brain and at least a half dozen more on my spine, I should be nowhere near as functional as I have been.  The truth is my complex system has been able to find work arounds.  So when mapping my brain, where exactly should we put function A? 
2)  This leads to the next hurdle, the theory of plasticity of the brain.  When we look at functional MRI’s we can see brain activity and correlate the location of the activity with the processing of a given stimuli, but is this always where sights are processed and love felt?  What about kids with severe seizure issues who are given a hemispherectomy (half of their brain is removed)?  How is it they learn to function?  If our brains are capable of simply switching where a function takes place, how can we functionally map the brain, tying parts of the brain to a function of the nervous system?
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3) Funding – We are undertaking a huge project, one with the potential to unwrap many of humankind’s biggest secrets.  We are doing it in uncertain budget times, and we are proposing to accomplish it with less than a tenth what we spent on our DNA code.  We are looking because the potential payoffs are too big not to start, but we should do so with eyes open to the potential of running out of money before any of the keys are found.  The brain contains approximately 100 billion neurons.  Figuring out the interactions between each of them is no small task, and 10 cents per neuron will be well spent if all it comes up with is an approach to accomplish the original goal.  
4) If the previous three hurdles seemed big, I think this last one is the hardest and most important to pass.  I have not seen a single definition of a success or a goal.  Big successful projects of the past had a defined end point whether it was map the human genome or set foot on the moon.  What is success?  It seems about as set as the location in the brain of whatever it is which makes us us.
As a semi-related issue, O is convinced he is not fully “us.”  His current belief is he is half-alien, and he has “human parents and birth parents.”  His alien parents did something to him to make him live like a human, but he has an extra tooth, is small for his age, and he is double jointed and…..He is convinced he is an alien.  I think it is a likely a subconscious protection to explain why he feels different from everyone in the family and world, a reaction to being adopted.  He probably heard somebody refer to his parents as “illegal aliens” at some point.  At least that is the only explanation I can come up with for an exact origin.  Still, he is creative enough that I do not doubt it could come from the same place as his ghost friends about whom he remains very defensive when defending their existence.  Being an alien is just a way he expresses how he feels separate from the rest of the world.  He recognizes our love for him and returns it.  I think whatever his biological origin, be it human or alien, he is feeling a very human need to define himself in his relationships with the world around him.
Given his history of being a premi born at 26 weeks and later having a brain bleed affecting his frontal lobes, I wonder if some day doctors will be able to look at the location and severity of a brain injury to explain and predict the impact of injuries like his.  For now, I simply think about how lucky he is to be alive, smart, and thriving.  Come to think of it, I am not sure any scientific finding could change this thought. 
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