Reader-land Request!

Ellen asked, “I’d love to hear more about your devotions and prayer life and how to keep living even in the midst of chronic illness.”

Hoo boy, I have a tale for you!

First, right off the bat, I talk a good game, but I don’t live it.  My prayer life is a joke.  There, total honesty! download

Ok, so it is important to explain my situation.  I can’t, or won’t, travel anymore.  I can’t hold my head up, and every bump or corner is a danger and very painful to my neck.  I can’t strap it upright because I get saliva, and I have to tilt my head down to swallow or it will just go down my throat and into my lungs.  So, I sit at home in front of the eye-gaze Tobii from 730-730.  My dad brings me Holy Communion every day that he can and I feel up to it.  This is the first and most critical, my whole day revolves around it.

When I wake up in the middle of the night, I begin my morning prayers, which are the morning offering, St Michael prayer, and the Guardian Angel prayer.  My mom had a whole routine that stuck with me.  If I’m still awake I will say the Angelus.  Now having prepared for the day, probably in fits of waking up, Mel gets me up.

Then on weekdays I work from home, a computer job, so I try to focus on that.  But this means I put off devotions I want to do, like liturgy of the hours and the Rosary.  They only take fifteen minutes but I let them slip by most days . Yes, I let them slip by most days, you read it right.  If I am not lazy, I put on the Rosary with scripture on YouTube, because mental rosaries for me are extremely difficult, I have been known to take an hour or more to get through a silent mental rosary.  And I can’t talk.  So I use the YouTube. download

I have a devotion to Our Lady, I call her Mom.  And I try to remember to talk with my Angel because I know he’s there.  There are reminders during the day to pray for the souls in purgatory.  Otherwise, I find that I don’t actively pray a lot, but in the course of being distracted, I will find some thing that clearly points the way to the Truth and will think about that.  I share a lot of pro-life stuff on Facebook, which also helps me focus on truth.  Sometimes it is hard to even think about praying.

At night, when I go up the elevator, I say an act of contrition, but I don’t really do an examen which I should.  And then while waiting for Luke to fall asleep I might say a Divine Mercy chaplet.  If I wake up in a lot of pain I will try to say a chaplet.  There’s my prayer life.  Isn’t it awful?  I’m like Super Skier…

And how do I continue with a terminal illness?  I have to say that it was difficult.  The greatest burden and temptation is to believe you’re a burden to your loved ones, and they would be better off if I were dead.  Frankly, this is the majority reason for assisted suicide.  But I don’t know how, somehow it got knocked into my head that the human condition is not one of utility, or production.  It’s a state of being present, of actually being.  In that regard, every human has dignity in their humanity, not by autonomy or whatever.  If the family feels burdened, they are looking at you like a tractor that isn’t running.  But the state of man is LIFE, and anything else is just capabilities.

And the state of man is also humor.  Funny story.  The second doctor I saw for ALS was a female, late forties maybe?  I had to undress and get in the paper gown, I don’t know why.  And sitting on the exam table I was confronted with the fact that said doctor was wearing an extremely low cut top!  So I’m trying to answer questions and avert my eyes which wasn’t always possible.  It was the most uncomfortable exam I’ve ever had, even more so than when the nurses had to move me around after the first infusion in Massachusetts, and I was exposed to the room! 2009-09-30-malpractice-makes-perfect

That is life.  If you can’t laugh about how ridiculous it can be, then a terminal illness will just kill you faster.


6 thoughts on “Reader-land Request!”

  1. yeah clearly all talk !! whatever—your amazing. I love that your thoughts always take you to our Lord. if I wake up in pain I say a chaplet, if I’m waiting for Luke to fall asleep I say a chaplet, on the way up the elevator I say an act of contrition. Your are truly inspirational.


  2. I read this today and thought of you.
    “The endurance of darkness is the preparation for great light.”
    – Saint John of the Cross


  3. Joe, I feel like a minor celebrity cuz you took my question.
    Your answer inspires me because a) you are human and forget to pray or lazily don’t pray—and that reminds me of me; and b) when you do pray it’s real and I love your mother for instilling some routines because maybe now it’s hard to go deep, but you can at least say some prayers by heart.
    The next rosary I say, no matter how much or how little I concentrate on the prayers and meditations, I’m praying it for you and your family and maybe especially for your wife. Which, btw, I loved her post about meeting and falling in love with you. Thank you for that.

    Next question: what do you think about GKChesterton (if anything)?


    1. Chesterton is brilliant! A great influence on Tolkien and Lewis, and the better known half of the Chesterbelloc! If you haven’t read Belloc, you are missing out.

      Chesterton caught me first with the Fr Brown stories, then the Club of Queer Trades, then The Man who was Thursday, then the Napoleon of Notting Hill, then the phenomenal Ball rolling the Cross. The last two I read were the prophetic The Flying Inn, and St Francis. Yeah, he’s a must read, in this time of ridiculousness he’s a beacon of common sense!


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