Cowardly Lion

Joe

I’m not quite Lambert, because I roar.  I’m a blowhard!

*This was written over the course of two weeks.*maxresdefault

I’ll explain, Reader-land.  There comes a point when even if there were some magical treatment that would extend my life, I would seriously have to be convinced to get it.  I’m tired.  I can’t explain it better than that.  I’m weary of the daily pains.  And we have moved to palliative care because nighttime is terrible and Mel is suffering.

So much so that a person who I imagine would prefer to remain nameless came over to deal with my nighttime repositioning so that Mel could get a decent amount of sleep!  To said person, thank you.

Then there are the painkillers.  Reader-land, I have begun more intense painkillers at night, except I haven’t.  I had a very low dose and felt nauseous and cloudy and then hungover the whole next day, and it didn’t even get all the pain!  It’s like I can’t make up my mind! tenor

So let’s break this down.  I am not sleeping well so I need more powerful meds that make me feel terrible.  I need something to stop the nasal drainage, but my mouth and throat are too dry.  I have difficulty with bathroom, but now have to be near a bathroom just in case.  (Fool Mel five times…) I want to have real food, but I now have massive gas.  I want to type but I don’t know how to hold my head up.  I am having problems breathing but I’m more afraid of the hospital.  Everything is a paradox!

Even writing this is a paradox.  I’m complaining about my suffering and whining, but I want to go to heaven and all the saints don’t complain and whine.  Every single time I write about stuff.

I’m in a funk of my own making.  I’m not praying, but I am so afraid of hell that I should be scared straight.  But I’m not.

We all know people who throw out excuse after excuse to every solution to a problem, and I feel like I’m doing this.  Just now I broke down in tears when the nurse suggested the hospital because I am terrified of the hospital.  They can’t understand me and I will panic at being alone.  Do you see how I’m trapped?  Paralyzed by very real fear?

But I talk a big game.  When the chips are down, I forget what I have said.

 

Published by Joe

I have ALS and big ideas, oftentimes beyond my grasp. 37-year-old father of four, I love God and try to keep my eyes on the goal!

13 thoughts on “Cowardly Lion”

    1. Mel, I don’t know if you remember me, but I was your oldest son’s preschool speech therapist at Yorkshire Elementary. Your family have always held a special place in my heart. Joe, although I had only met you maybe a few time, your family and you spoke to my heart. I have been following your journey . You, and your family, have been in my thoughts and daily prayers for years. Know that you are human. It is ok to let us pray for you. Be human as you are already a saint in my eyes, and many others. God knows and understands. Just be in the moment with Mel and each of your children. You have, and continue to be, a role model for fathers around. Put your fear at the feet of Jesus and know he’s carrying you in his arms.

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  3. Dear Joe. You are a rock star. You inspire with your unparalleled love, courage and honesty that I feel in some of your blogs. The humility, your presence of mind are earthshaking to me. (Now don’t you be getting a big head)!
    In a nutshell, your exposed humanity in today’s blog gives me courage. Faith is a beautiful thing! Stay focused on The Cross. I continue to pray for you.

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  5. I assure you—that you just being you is inspiration on a daily basis. you are a hero. you and Mel are such a beautiful example of the true vocation of marriage. god bless you both!!

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  6. So sad to read this, Joe, but thank you for making the effort to share it with your readers. Everything you wrote is so understandable – especially the panic you would feel in the hospital. – as well as the other paradoxes you cited.
    Vince and I pray for you every day – often many times a day. The aches and pains that go with being 78 are offered for you each morning.

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  7. I agree with Joey. You are a hero, even if at times afraid. Being afraid is normal. And being too overwhelmed to pray, well my friend, that’s why you have us, your readerland.
    I began to pray as soon as I finished reading, and have been praying more rosaries than usual too. Your readerland loves you for your honesty, and we’re trying to hold up our end of the team by praying for you all. God bless you. May your sufferings be efficacious. But may they also be eased. Gilbert and Frances Chesterton, pray for us.

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  8. Whenever I am afraid I always think of or sing this song. It helps me so much!

    “Do not be afraid, I am with you
    I have called you each by name
    Come and follow Me
    I will bring you home
    I love you and you are mine”

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  9. I have missed your updates. I am off fb and thought I was signed up for notification by email. Now I am. I am praying with all my might , joe, that all fear will be removed. Fear is a liar. It distorts life. It is a force to be reckoned with and I am confident 100% that Gid will hear us and grant you NO FEAR. Please, Holy Spirit. In Jesus’ name. Much love and prayers, Kristin

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  10. I have missed your updates. I am off fb and thought I was signed up for notification by email. Now I am. I am praying with all my might , joe, that all fear will be removed. Fear is a liar. It distorts life. It is a force to be reckoned with and I am confident 100% that Gid will hear us and grant you NO FEAR. Please, Holy Spirit. In Jesus’ name. Much love and prayers, Kristin

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  12. Hey Joe just dropping a note to say I am thinking of you and praying. I appreciate your honesty here, because it helps me focus my prayers for you.
    You are allowed to be tired and you do not have to suffer if there is medicine out there to help (without making you sicker bah).
    I work with patients with Pulmonary Hypertension: another disease with no cure. The IV medicine that prolongs their lives makes them feel sick. My secret weapon is marinol! (Synthetic pot!) I am not kidding, it is a lifesaver for nausea, headaches, and pain. You should ask about it!
    I cut down my hours in May for the kids over summer break, but I cut them before the kids get out. I hope you can hang in there and I will be reaching out to see if you will have me to visit: I miss you both and it has been too long. Reach out anytime if you all need any nursing support or if Mel needs a rest.
    I hope you have a peaceful week.

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