Flying to Boston…

…and it’s snowing.


Unless our flight is cancelled, Mel and I will be leaving for Boston and Worcester (WOOOOster) at around 4am tomorrow for our first Umass visit.  This is the first of 4 to see if I’m as good a candidate in person as I am on paper for the NurOwn stem cell trial.  (Reminder, NurOwn was shown to reverse symptoms of ALS in Phase 2 trials.  Not a cure, nor a slowdown of progression.)  Then if I am a good candidate, it’s more visits to get spinal taps (up to 11!) and then……  Well, I’m not sure.

I appreciate all the prayers and support you all have given us over this decision.  It isn’t the safe choice, it isn’t the most clear choice, and depending on how it goes, I may progress faster than before.  There is also no guarantee that after this trial I might get on the Radicava again.  So, lookin pretty uncertain.  I’d appreciate more prayers because the real hope is in a miracle.

It is in God’s hands though, and that’s all I can do – it’s the only thing  to  do.


On Heroes pt. 3

Dinner Argument (source Wookiepedia)

Today I wish to highlight heroes that play a huge role in my life, but are so many that I can’t write individual posts about each person, or each individual thing they do.  Please know that in the general statements I make, I’m trying to honor every one that has been there and is still there.   I might do individual ones occasionally, but in the interest of actually sharing about them, here we go.  Names are withheld to protect the innocent!

When I was diagnosed with the ALS, a doctor I went to (that I didn’t like that much, actually, but I think that might be a separate post) asked me if my family was local.  At the time, I didn’t think much about it but as this year has progressed I’ve realized a ton about what it meant, how much it mattered.  These heroes are my family.  Wife, kids, parents, siblings, in-laws, cousins, aunts, uncles, the whole deal. Continue reading “On Heroes pt. 3”

I failed today

So life isn’t all loganberries and daffodils and rainbow farting unicorns!  Sometimes there are legitimate days when you don’t do it right.

Today I had no response to someone who for all I knew sounded serious about someone being “militantly pro-life”, and making it a bad thing.  I knew then I should have said something, I should have told the person that I was militantly pro-life, that I found nothing wrong with it, I should have stood up for what I believe in.  But I didn’t, and in the few seconds that I had to respond the moment was gone, the conversation moved on.  I failed.

Why does it matter?  Well, the statement was about making abortion illegal.  I happen to think that protecting the unborn is of primary importance, but also that abortion is a gateway for many things that are straight evil in the world.  Let’s be plain: killing a baby, the most innocent of humans, is evil.  That it erodes the value of other human life, or human interaction.  That it opens the door to objectifying women, debasing their innate value.  It opens the door for using other people to get what you want, either for personal gain or gains by the state.  If we don’t see the value in the littlest one for whatever reason, then why would we care about the big ones?

When I heard the statement, not only did I feel appalled for the babies, but I felt a death sentence on me.  I am no longer a fully productive member of society.  I can’t function the same without help, and it will only get worse.  I’ve already spoken about how society doesn’t treat disabled as people, well this is the natural progression.  Will I be allowed to live or will I be considered a burden on whomever?  Will they be “just not ready” to deal with me, as we as a society are “just not ready” to have kids yet?  What happens to my friend Matt, with his beautiful family?  And is it just me that is now on the chopping block?  What about my hero Michael?  Is he safe?  What about my many friends that are either sick, or suffering, with cancer or muscular dystrophy?  Are any of us safe?

When you say you’re pro-life, these are the people you are talking about.  It starts with the cell that is a mix of father and mother’s DNA.  It continues with the sick and disabled.  It continues with the healthy.  All human life, no matter how effed up it may be in the eyes of the “normal”, is sacred and worth living.  It’s people, darnit.  (Heck, it’s the reason that “soyulent green” is so repulsive!!). Why do we value it so cheaply?

Why do we say on the one hand that we must pass any law to “protect the children”, yet we slaughter children daily?  Or we say nothing about children killed in other countries?  Why do we swear up and down that healthcare is important, but we won’t allow for expanded access to experimental drugs to those with terminal illnesses (yes I’m talking about “Right to Try”)?  Why are some states ok with assisted suicide but then we struggle with teen depression and suicide?  What the hell is going on???

I should have said something.  One voice, as inept and incompetent as it is, could have at least opened a thought, however small.

I should have said something, but I didn’t.  My silence condemns me.

Stephen Hawking

We’re doing this.stephen-hawking-world-observatory

Last night, renowned physicist and cosmologist Stephen Hawking passed away.  He was 76.  He had been afflicted with ALS since his 20s, and that alone is an amazing feat.

I relate to Stephen in more than one way, and I’d like to speak about it for a little bit, to share my thoughts and get them out of my head.  His death makes me sad, not just because a great thinker has now left us without being able to impart his deepest thoughts to us.  I’m sad because the questions I wished he would ask remain unasked, unanswered.  Does this make sense to say: Hawking asked and answered many of the biggest scientific questions in the cosmos.  He looked for the origin of everything, he looked for a unifying theory tying everything together.  All these scientific theories put forward are brilliant, so far beyond what I or 98% of most people could think of and attempt to put forward in a coherent theory.

What Hawking himself said he was looking for was a complete underlying theory.  “My goal is simple. It is a complete understanding of the universe, why it is as it is and why it exists at all.”

In A Brief History of Time (1988) Hawking wrote, “If we discover a complete theory, it would be the ultimate triumph of reason – for then we should know the mind of God.”  In The Grand Design (2010), he wrote: “Because there is a law such as gravity, the universe can and will create itself from nothing. Spontaneous creation is the reason there is something rather than nothing, why the universe exists, why we exist. It is not necessary to invoke God to light the blue touch paper and set the universe going.”  This is the mind of a genius not thinking about how to make a guacamole recipe, but on how the universe exists.

But, (and there is a big “but”), he set himself at a huge disadvantage – he attempted to answer philosophical questions by using physical scientific method.  Why does the universe exist cannot ever be proven using the scientific method.  Why a thing exists, be it a rock or dog or human or hot pepper, we can’t explain why those things are.  To attempt to answer that by using the physical is to answer only half the question.

You see, even in his own quotes, he mentions the intangible – the mind of God and the creation of something from nothing, both things that cannot be proven or disproven by science.  Metaphysics (a division of philosophy), yes.  Physical science, no.  (Actually, physics as we know it demands that something cannot be created from nothing, but that’s another topic.)

I think you all know by now that I am Catholic, and I believe in God.  I believe, in short, that the intangibles that Hawking was looking for are there in God and in the mind of God that he wanted to figure out.  So for me it’s easy to look at and go, “oh yeah, he was searching for God!”  But let’s unpack it, why would someone that can unlock the secrets of the universe and cosmos constantly be searching for a bigger answer, a deeper meaning, a “why” of the universe?  Because in knowing what he knew, he discovered there was a deeper level beyond it, even to discovering that he couldn’t find the answer the way he was searching.

This is where I also relate to Stephen.  He and I both have ALS.  He and I are both looking at the universe and wondering “why”.  He and I are both searching.  He and I (him much more intelligently than me) both looked at creation and wonder how, and why.  Our difference is that I allow for the potential of the unseen/unprovable outside of the scientific theory, a philosophical viewpoint of what could be out there beyond physics (metaphysics).  I believe that this mindset of allowing oneself to think metaphysically opens up so many more doors and explanations that otherwise frustrate us.  It’s not the “wave the magic wand and God did it, and we’ll never know”.  It’s the honest investigation to the primary sources of everything.

Today I add him to my prayer list.  I hope that now the answers he sought so diligently are laid open to him, even the “Why” that is so elusive.  I sincerely hope that we as humanity pursue the questions he asked with an open mind.  I hope that the good example he showed by sticking through the ALS and suffering can motivate others to realize they have great potential in life, even if only by thinking about deep things.  I hope that when I die, I see him in heaven, and we can talk about these things.  Because he as a scientist and me as a philosopher we should be able to discuss these types of topics, both here on earth and in heaven.

And that goes for all of us – we should be able to have rational discussions about this stuff, over a beer or whatever, asking the questions and attempting to answer.  That’s why we are here.  That’s what separates us from the animals.



Much ado about nothing, or random questions about me

Yes, hello, welcome to our home!

Melanie told me that the blogs she likes are also ones that do a little bit about themselves.   So, I’ll be boring and do the trending #hashtagaboutme.  So, without more ado…!

  1. Are you named after anyone? St. Joseph, I think Edward Anthony (somewhere in there), and St. Maximilian Kolbe. I was GOING to be named after St. Martha… but I’m a guy, so…
  2. When was the last time you cried? Today.
  3. Do you have kids?  I do.
  4. If you were another person, would you be a friend of yourself?  Oh yeah.  I’m a stand up dude!
  5. Do you use sarcasm a lot?  Oh yeah.  I’m a stand up dude!
  6. What’s the first thing you notice about people? Face.
  7. What is your eye color? Blue
  8. Scary movie or happy endings? Happy endings.  Scary movies are.. I’m not a fan.
  9. Favorite smells? My wife’s perfume, frankincense, beeswax candles, the sea
  10. What’s the furthest you’ve ever been from home? uhm… really far?  Spain?
  11. Do you have any special talents? “Oh yes.  I do voices.”  (I did voices)
  12. Where were you born? Louisiana
  13. What are your hobbies? Ok, what I would LIKE to do, what I DID, or what I’m able to do now?  I’d LIKE to do woodworking, kart racing, drum playing, soccer playing… I DID play sports, coach, bike, run, do triathlons… What I’m able to do is admire other people’s physical talents, think of ideas for things, read, pray and try to be with my family.  And design a sports-wheelchair
  14. Do you have any pets? A cat.
  15. Do you have any siblings? So many!!! 6, and 12 in laws (between Mels family and mine)
  16. What do you want to be when you grow up? A saint.  Grown-up?  A little bit taller?
  17. Who was your first best friend? Shane Lennon
  18. How tall are you? 5’7″
  19. How many countries have you visited? 2
  20. What was your favorite/worst subject in High School? Favorite, history.  Worst, Math
  21. What is your Favorite drink? CHARTREUSE!!!  Then scotch.  Then bourbon.  Then beer.  Then bubble water.
  22. What Sports have you played? soccer, basketball, rugby, kart racing.
  23. Favorite memory from childhood? footloose and fancy free, I have too many to have a favorite.
  24. Favorite sports? Soccer, Sumo, Formula 1, hockey, baseball, e-sports racing
  25. What phone do you have? (iOS v Android?) iOS

OK Reader-land.  Now it’s your turn.  I’ll answer any questions that you post below in the comments on this post.  (Not on my love life, that’s off limits.)