Category Archives: adoption

Done on the Cheap for $100 Million


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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Hard Choices – When Does One Go All in on Adoption

Some times I think the most valuable thing MS has taken from me is any sense of expectations.  It has always seemed easy to play the odds with a sort of internal risk management style.  What could I lose versus what could I win ruled my thought process even if it wasn’t explicitly said or thought.

Along came MS. For the first few years, it was simply survival mode with every day seeming to bring new challenges with precious few bringing opportunities I recognized.  What a miserable couple of years. Heck, this blog suffered it’s first death for my lack of desire to remember the thoughts of the years.  When I think back on the first few years, it’s mostly memories of not being there because of hospital trips, puking, dropping everything, and shit in my pants at work.  Everyday brought a waking up and taking stock of what was working today.  I couldn’t predict what would go wrong next.

Then came Tysabri,and the choice to take a med with a small chance to kill me versus living like I was seemed a no brainer (bad pun).  Five years later, I have been stable for long enough to somewhat get back into a shape other than round and squishy.  However, I still find myself with symptoms progressing.  Pain is getting worse, and my mental mistakes are legion when tired.  Heck J doesn’t even want to take a break for a weekend because she fears I will make too many mistakes or just one bad one.  Who am I to second guess?

Add onto this guess work, uncertainty of what taking Tysabri for a decade or two will do to my body.  I have now had roughly 75 infusions.  There are no studies on people who have taken it for this long.  I am part of the test population who will be in the stats to tell future patients the effects it may have.   As if the uncertainty of MS wasn’t enough…

This all makes the choice we have of whether to adopt K even harder.  When asked, I have to admit I don’t know how much longer I will be able to work.  As I try to run scenarios in my head, the median answer I come to is about 15.  I want it to be another 25, and I fear it will be about 4 or 5.  So the expectation is 15.  What kind of position would that put our family?  How will J take care of all of us?  Is it fair to expect her to still have any sanity?

Still, there is a side of me which asks the questions, if not us then who?  At some point, one is given enough gifts to make a winning situation.  One has to then ask if not now, if not this, then for what is one working or waiting?  In poker terms, this would be the big blind special (another bad pun for a practically blind K).  We flopped our way into a full house of wonderful children over crazy parents.   If not for this, why do we keep trying.  There are some hands which seem so likely to come up short, but the possible rewards make throwing them in so unappealing.  When are odds not the best reasons to make decisions?  Of course one could argue risk management is also about the risk for things working out.  Not all risks are bad, and getting a proper feeling for what real odds are versus wishful thinking is very difficult.

I think that’s where we are now, trying to decide how best to live.  Maybe the life well lived has morphed.  When I first thought of the phrase it was how I would wish my biography to be titled.  Then it was a wish for my kids, but over time, it’s become a phrase I hope describes our life as a family.

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