Joe's ChronicALS

You may be wondering why I have this symbol at the top of my blog, and on my shirts, and eventually on any hat I may design (sorry Jess).  This logo and motto is from the Carthusian monks, founded in 1084 by St. Bruno.  These monks live in near total silence every day, breaking only for sung liturgy in the church (3 times a day) and then the more communal day on Sunday.  All other times, silence.  Pray, work, eat, play… silence.  It is the silence of stillness, no weird noise machines or music or finger drumming.  Oh, there is a movie about it (which I just purchased the DVD finally) called “Into Great Silence“.
You might fall asleep watching it, but persevere.  Watch it in stages, something.  It’s truly stunning to watch!

Another huge aspect of their life is solitude.  These monks are communal hermits, in that they are in their cell alone for 18+ hrs a day, yet they all live together in one monastery.  The solitude and silence help them live their charism.

Another fantastic thing these monks do is brew a liqueur called “Chartreuse”, which originates the name of the color.  It’s a beautiful green color and a unique flavor.  I have to be honest, my first smell and taste was startling, to say the least.  Extremely herb-y.  The next time the sweetness broke through better.  The 3rd time, I fell in love.  I used to be a single Malt guy, but I think I could taste this for the rest of my life and still find new flavors.  New favorite!

 

Why do I bring all this up?  Well, partially because I’m a fanboy.  The podcast “Catholic Stuff You should Know” linked in the sidebar turned me on to this group, and I’ve been researching them ever since.  There is a deeper reason and I’d like to share it here because I don’t think I’ve reached the depths yet.  And I’m not trying to be a drag, I’m just sharing.

I am losing my ability to speak.  I have very thick speech now, and while Mel can understand me, it’s becoming more and more often that I either slur everything, or have to repeat myself to make myself understood.  This is a problem for me, as I love to talk.  I love to lecture and expound on topics and think and speak deeply about topics that I’m passionate about.  I love to tell jokes, and laugh.  All of this is becoming more difficult, and we are working on ways of mitigating ways to communicate.

The Carthusian charism values solitude and silence as ways to best contemplate God.  These monks and nuns spend their time praying for others, a life only of prayer and contemplation.  They renounce even the pastoral care other orders have.  In their motto, they lay the groundwork for that contemplation: “The cross stands, while the world turns”.  The cross is stable and stands in one place while the world spins out of control.

The lesson here for me is, perhaps communication in the way I think of isn’t meant to be my strong point.  Perhaps in this time I need to focus on solitude and silence instead of talking so much.  This is doable in the world as a father and husband because I can take small amounts of time to take to do this throughout the day, as well as learning to not be frustrated with my own inability to speak.  Perhaps this thing that is spinning out of control can be tamed if I cling to the cross, which stands firm.  It is a lesson that I will have to learn and balance as I work to be a good husband and father.  Perhaps a monastery of the heart.

Of course, the irony here is that I’ve always been a Dominican fan, to the chagrin of my Franciscan mother.  I love the rosary and the “Order of Preachers”.  I always thought I would be able to use my penchant for conversations and lectures to use for good, for the sharing of faith.  Now it seems I can share through this blog and can share through contemplation.  

The point to share here is that through a weird fanboy appreciation for a group of hardcore monks, I now have forced on my the opportunity to share in their life in a small way.  I could be very upset about the whole thing.  I can and will work to make a way to communicate, but in the meantime I can choose to not get frustrated if people don’t understand my speech.  I can choose to be more patient and repeat myself.  I can choose to keep thoughts to myself instead of feeling that I have to input my own two cents into a conversation.  I can choose to take the time I can’t speak to contemplate the things that are truly important.

I don’t know what the future will hold.  I apparently talk big about choice and the choices we make.  I can choose to be upset with the sickness I’ve been given or I can choose to find the positive.  I’m not sure what the answer will be.

I’m sorry, I don’t want this to be super down blog.  These are the thoughts that I have during the day, so I want to share for who is interested.  And hopefully motivate myself to try harder to live the ideals presented before me!

Also, go buy a bottle of Chartreuse.  It’s $65 at the VA ABC stores and the first few tastes are hard hitting, but it’s worth it!!!  Over ice, definitely on the rocks!

(Next post, wheelchair development update.)

 

 

 

Earlier I posted about heroes, and I’ll get back to that.  Right now I want to talk about superheroes, mainly DC based because Marvel has some weird stuff going on.  My halloween costume aside, we’ll leave marvel to the side.

Superheroes, as DC envisions them, usually are born with their powers and deal with it their whole lives.  (Batman the exception, he’s totally normal just super rich). Superman, Wonder Woman, the Flash, Martian Manhunter…all born with the powers.  Nothing wrong with that, of course, but it is something almost that we can’t understand.  That’s why there are so many storylines that try to show weakness.  (I can’t stand those.  No villain that is stronger than them, just their own angst and emotions or ego that is the enemy.  I’m sorry but that’s not why we read superhero comics!)

So that comes to my favorite, Hal Jordan.  “Joe,” you ask, “that’s not a superhero name!”  You are right.  Because Hal Jordan was a brave, upright, honorable man before he became the Green Lantern of sector 2814.

He was a test pilot, already putting his life on the line to test the newest planes.  In the classic GL, he was also upstanding, always ready to do the right thing, and just an all around good dude.  You want that kind of dude on your superhero team.  Getting the green ring that is focused by willpower added a whole new dimension to his skills and abilities.  However, unlike other superheroes, the ring is something that can leave Hal and he has the strength to go on without his power.  Hal is a human, he has doubts and insecurities, but also knows the right thing to do even though it is tough.  And (unless you read the modern comics, that made him uncharacteristically whiny and emotional) he does the right thing.  (Again, caveats – he’s still a comic book character and I’m SURE that over the 60 years or so he’s been around that they’ve written many bad things he’s done.  This is my blog.)

Let’s put this into context – Hal Jordan punched batman in the FACE.  Without using his ring’s power!

So, that brings me to the purpose of the post.  We humans admire superheroes, we watch the movies, read the comics, etc.  But we know in our hearts that we can’t be them, no matter how many capes we have.  That is why Green Lantern is the best- he’s a guy, that because of his character was given the power of a superhero, and then used it to become the greatest of all the lanterns.  And still was a regular dude and would be able to move on from that power.  He is closer to you and I than anyone else in the universe (unless some of you are super rich heirs to a fortune) and that makes him relatable.

Because I have off days.  Frankly, there are days when I grow discouraged with not being able to hold a fork, or speak up in meetings, or pick up my kids, or throw a basketball, or be understood when I talk.  This is real, this isn’t something glamorous or that I can fly off to a solitary fortress of some kind to recoup, I have to deal with it.  And in those off days, I pray, and worry, and hope.  And I pray some more.  And… sometimes silly reminders of comic book heroes help you get through the day.  So why not pick the one that is closest to real life?

Remember that we all have down days.  We all “lose heart”.  We all get discouraged when our wheelchair doesn’t get picked up by companies (ok that’s just me.). But our human life is one of trying to do the right thing.  We rely on powers outside our own control or creation to get through those moments, but before we can rely on them, we have to take the step in the little things.  If we fall, we have to choose to get up.  If we fall short, we have to choose to try again.  If we can’t do it, we have to choose to ask for help.  Life is a series of choices, and while we can’t do it alone, neither can we wait around for someone else to magically do it for us.

It takes Hal Jordan’s own choices to make him the best Green Lantern.  Life takes our choices to make us the best we can be, too, no matter how down we get.

Let’s choose to get up, ask for and accept help, and keep moving forward.

 

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.

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!