On Heroes

 

This is first in a series

“It’s hard to find heroes nowadays.” – paraphrasing my ALS clinical director.  She’s partially right… and partially wrong.

I’d argue that finding heroes in today’s public world is a lot harder.  Athletes are disgraceful, frankly.  Our parents used to look up to athletes, remember that?  And as such they had a public persona that was something that people could look up to.  Now they don’t care and don’t want to be role models.  Movie stars?  Well there has always been a seedy underbelly of Hollywood, but there were gems growing up.  Jimmy Stewart?  John Wayne?  Gary Cooper?  I’m sorry but Channing Tatum isn’t the same.  Politicians?  I’m gonna say mostly no.  Even religious leaders in the Catholic Church, people we should look up to?  There are a lot of examples of sinners…

I’d also argue that all the above is a crock of bull.  There ARE heroes out there, good people who’s public persona makes it less obvious.  Or flying under the radar because their persona is not larger than life.

Heroes aren’t “out there”.  They are right next to you.  There is a hero at my work that every day comes in and takes care of his people, standing up for them and deflecting for them and caring for them.  There is a hero that cares for her aging stepfather who is ill.  There is the hero that teaches school with migraines from light intensity.  There is the hero that holds the house together if their spouse is out of town.  There is the hero that straps on his tools of the profession every morning, taking calls on days off or at vacation, and comes home to his family every night.  There is the priest that is seemingly everywhere, tirelessly bringing joy, hope, and love to all the people around him.  There is the bishop walking anonymously among his sheep on the March for Life.  There is the mother caring for her son with cancer.  There is the young man himself with cancer, battling through some of the most painful and intense treatments.  These are the real heroes we should be looking for.  They are people like you and me, who try every day and get up when they fall.

So, as my first hero, I want to point out a hero super close to me, who will hate this post.  My wife Melanie.

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Mel stays at home with our 4 kids, and makes EVERYTHING work in our house.  (I fix things she tells me to.). Lunches?  Mel.  Dinner?  Mel.  Homework?  Mel.  Laundry?  Cleaning?  Everything?  Mel.  (I know, I’m lazy and this should show it.)  Mel also provides a sounding board for her sisters, is a good friend to lean on, a comedian at heart, and strong in her faith.  Not only that, but she takes the time to make sure our children learn the faith and grow up with manners.  And now she cares for me as I’m less able to do things.  Dressing changes, IV infusions, doctor visits, even buttoning my button when I can’t do it.  She started a job selling skin care products to make some money on the side for expenses as we deal with the illness (shameless plug for her stuff!)  She goes with me to every doctor visit.  She’ll come with me to Lourdes.  My partner in life is my first hero, my strong right arm.

Lets not say that this doesn’t stress her out – it stresses her immensely.  But she put on a brave face to all of it.  I draw strength from her strength as she deals with all this stuff.  Like I said before, the real heroes are right among us, and I see Mel’s heroism every day, from waking up to bed-down.  And when at the end of the evening, I see her quietly resting and recuperating from the day, I say a prayer of thanks for her.  And then I tell her I love her.

Like I said, she’s gonna hate this because it’s embarrassing,  ALS makes you more PDA though.  I have a condition, I’m allowed (and I don’t care what you think!). But I think that even though it’s embarrassing, it’s important to highlight the heroes that are right here right next to us.

Look for your heroes, look right next to you, in your family, your church, your neighborhood, your work.  Then when you find them there, find the hidden heroes out there in the public sphere (I have a few even though I criticized them in this post.)

The glass is not just half full.  The glass is overflowing, you just have to know where to look for the bar!

The problem of pain

(Disclaimer: I’m a huge hypocrite, so this is what I would like to do, not what I do.  Long post, slightly ranty.)

The Galbena River Cave in Apuseni mountainsDo you guys like music?  There is a great band out there for a bit called “Mumford and Sons”, and they have a great song called “The Cave”.  We’ll get to this later.

Last night and this morning I’ve been pondering sickness, suffering, and death.  Pain.  Why we have it, what it means.  It started with a bit of new legislation in New Zealand, actually, that wants to allow assisted suicide for the terminally ill and seriously injured.  Then I got a bit of news about suffering, and how it should end.  I’m also reminded of my first ALS clinic, where the psychiatrist was quite concerned I would take my own life, and was adamant that I have no guns in the house.

So let us get down to tacks of brass. Continue reading “The problem of pain”

Breathe in, breathe out

The two biggest factors in ALS ratings, apparently, are the ALSFR scale, and lung capacity.  So every visit to anywhere I fill out a 1-5 scale on if I can swallow, eat, hold a fork, get dressed, turn over in bed and move the sheets, etc.  Mundane stuff really, that you don’t think about until it’s hard to pull the covers up, or hard to button.  Or if you start to fatigue just talking, like me.  I joked that a half hour conversation could have taken 10 minutes if I could speak normally!!  (It’s really ok.  I could probably get super inebriated and no one could tell the difference!)

So this test, in the picture, makes me panic a bit every time.  Lung capacity.  And… uhm… the test “blow hole” for lack of a better word is so wide that all the air comes out at once and you feel like you are failing.  It doesn’t help they are saying in the background “push push push push push good!”  (Delivery room flashbacks!). It also doesn’t help that Mel is the room taking pictures and making me laugh while doing it!!  But seriously, do you see that picture???

Which leads to the irreverent attitude I have in the dr. office.  I don’t know about you, but life is hysterical.  The fact that I have this disease doesn’t make it any less hilarious all the things we go through!  Mel made me walk all the way across the hospital to reach a clean bathroom.  I couldn’t stop laughing the whole way!  The OT wants to give me a carbon fiber foot brace for foot drop… I get my pirate peg leg!  There are so many positives that I can’t stay serious for too long, I’ll go insane!  (And, I am active.)

All this to say, with all the news going on in my life, all the blessings, kind words, prayers, monetary help, and people I’ve never met just willing to help, I feel more at peace than I have in the past.  This clinic visit was harder than before, but I left with a real view of the road ahead.  And I breathed easier.  The road is hard, the struggle is real, but with God, the saints and angels, my family, my companions, we’ll make it.  Breathe out.  God’s in charge no matter the outcome.  So smile, laugh at yourself, because life is hilarious!

Blessings and graces

God will never be outdone in generosity.

Two weeks ago, Mel and I interviewed with the Knights of Malta for the chance to go with them on a trip to Lourdes, France, site of the Marian apparition to St. Bernadette.  Then Mel and my family started saying novenas that we would be accepted to go.  We are praying for a miracle, and we pray to “help our unbelief”.

Earlier last week, we received a generous gift from a family that has been very kind to us:

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Roses, always special in our house, and the prayers of the Dominican Sisters of the Perpetual Rosary.  Roses are special because Mel’s Mom’s middle name is Rose, and we know she is praying hard for us, and helping us.  So then yesterday I got a call from the Knights of Malta, and we got selected to go to Lourdes!!!  I am floored, excited, grateful, overwhelmed…. it’s amazing!

I am not done yet.  Like I said, He is never outdone.  I met a wonderful man this week through my sister (also my godmother), who is very similar to me in that he is young, a father, and has ALS.  We have similar initial symptoms, and he is wheelchair-enabled (having a wheelchair is not a disability, people!). But after a brief conversation over text and then over phone, we connected, and hopefully will be able to meet face to face soon. Matt also put me in touch with clinical coordinators of possibly one of the most effective trials of reversing ALS symptoms to date… and they responded within the day.  Now there is a very good chance I could join the phase 3 trials up in UMass as soon as this month.

It’s selfish sometimes to think about this.  Matt has had ALS longer and he’s not eligible for the trials.  But he reached out so that other’s might have the opportunity to try, and if successful, pave the way for him to get the actual FDA approved treatment!  This is what I mean by a wonderful man.  And God willing, may I do the same for others.

On improvements

Last time, on the chronicALS, our hero was fighting the tyranny of steel and lead batteries.

OK, so complaining about stuff never gets us anywhere.  What about solutions?  We can complain and complain, and at the end of the day we sound like politicians.  When Daniel Boone, complained, he went out west and found a solution.  When Nikola Tesla encountered a problem, he researched and found a solution (some that we still use today, btw.)  When Thomas Edison had a problem, he stole the solution from Nikola Tesla!  I kid, I kid.  Sort of.  That’s a post for my other blog, “Genius inventors who stole from other people”.

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I’m inspired by F1.  Formula 1, a private organization, has been racing for something like 50 years or more.  And they’ve constantly pushed envelopes and responded to changes in tech, engines, and everything.  They have gone from steel to carbon fiber, from V12 engines to turbocharged v6, to hybrid power for engines.  It’s fascinating.  and inspiring like I said.

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So, in that vein, let’s improve the wheelchair.  Right now, most power wheelchairs have steel tubing.  Maybe aluminum.  OK, so, like F1, lets more from steel to Carbon fiber!  Strength to weight is WAY better, and you can make more complex shapes without having to mill steel, bend tubing, etc!  In fact, the possibilities are limited by only the mold you are able to build.

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Then let’s look at batteries.  Actually, this one is too easy – Toyota Priuseseses have better batteries than everything out there, and they are at the bottom of the spectrum.  Then there is BMW, Mercedes, Formula E, Tesla… all making the rechargeable battery more powerful and more efficient.  So… wait, you are telling me I still need to use a 40+ lb lead gel battery????  And I have to use 2 of them to get around all day??  No dude, there have to be conversion kits for all the car batteries that are out there.  There HAVE TO BE!!!

Ok.  See what I mean by the art of the possible?  I know that the people that make this stuff have beaucoup cash and I don’t.  But everything is getting less expensive for sure.

And, a shout out here, my lovely wife Mel has been so supportive and encouraging, and my brother-in-law and sister-in-law have helped take the first stages for getting it on paper and even calling shops for me and everything.  The movement is real and my dreams would stay dreams without all of them, and their love and support.

So keep dreaming, there is nothing stopping you but yourself.  Ask for help, then go for it!