Dignity. Always dignity.

Love that.

Of course, with ALS, dignity is… A little different!  Reader-land, I have shared my undignified moments with you, and you know that after a given situation, it’s something to laugh about later.  And I’m all for that.  But I want to highlight something different.

It’s hard for us to let go of control.  For me it goes in spurts, but I have to still grunt and whine to make sure I won’t die in a given situation.  For friends with similar issues ( Joe Grimberg), you know the deal.  Also, you have endured far more and for much longer, and you are a saint.  Anyway, as hard as it is to let someone dress, bathe, and feed me, there is the other side, the caregiver.

If I’m stuck on the floor, or need help in the bathroom, it’s easy to call for help.  The only thing is, do we respect the dignity of the caregivers?

I think we have rejected it and sanitized our lives to remove any embarrassment, not for the one who needs help, but the ones around.  An ambulance whisks away a patient, and the world resumes the flow.  We rely on hospital staff to take care of the inconvenience of bathroom mishaps.  Nursing homes for the elderly and disabled.  Our society is built now to keep all that out of sight.  Spare us the embarrassment of seeing the less fortunate.

You think I’m wrong?  The patient has no privacy in a hospital.  I have shown my privacy parts up the eastern seaboard!  In nursing homes the same, only more isolated.  There is no dignified way to wear a backless gown designed for your butt to be exposed!  A study that I can’t find again from Canadia said that a large number of people who opted for assisted suicide were because of the toll on loved ones.  And how convenient it is to have that person pick their death day so the family doesn’t have to worry or care for someone indefinitely. gown

But the people who are willing to put their own embarrassment and discomfort aside and engage the patient as a person gives dignity to the patient and to themselves.  They say with their actions, “you have value, and I receive value by acting beyond my comfort zone”.

Recently, I was in a pickle.  I needed help from Mel, but she needed help so we got Jack.  In the moment, I watched Jack overcome his embarrassment and literally help his helpless father.  Just think how jarring that is, being the man of the house when your father is helpless!  And he stayed with me, got the Tobii so I could communicate, and in a situation that I know scared him, he kept cool.  I’m absolutely floored by his love and generosity, freely given.  God blessed the world something special when He gave us Jack!

But why?  Because in the moment when I needed help, he gave me dignity by caring for me, as did everyone who helped us.  I wasn’t some patient, I was Joe.  And in giving me dignity, they received dignity back, if that makes sense.  The love and gratitude that I give them raises their dignity.

Recently there was an insurance commercial that talked about the four loves.

Agape, that is what you show when you give dignity to the sick.  A higher form of love.  You don’t show respect to a person when you want to put them down like a pet!!  Speaking of which, I want to point out that they want to make California a no-kill shelter state, but they allow humans to kill themselves willingly.  Your pet will have more dignity than your grandma, or people like me.  I really have a rant about love!

I honestly don’t know how to end this one.  Thank you, Mel, Jack, Tim, Jen, Jess, and Joey for loving me as a person, and giving me that dignity even when I was totally helpless and dependent.  Thanks for giving an example for Reader-land.  I’m super blessed.

4 thoughts on “Dignity. Always dignity.”

  1. Joe,
    What a beautiful witness you and your family are. I have been best friends with Mary Spicer since college and now have the honor of being in the same family as her as in laws (we married brothers) . She has told me so much about you and Mel and I can’t help but be moved by your story. Your courage in the face of pain, your faithfulness to your Catholic faith and your family are constants that will be imprinted on the souls of your children for all eternity. How blessed are they to have a father that shows such strength, devotion and love. I can think of nothing that matters more. Thank you for sharing your journey and your heart with us (Especially all of us that follow along online). You are a gift to us all. We are praying for you and routing for you.
    Katie Pearl


  2. I love the Singing in the Rain reference! As a former nurse, this reflection is so insightful and meaningful. It helps me think more about those who need help among us, and how dignifying it is to receive help when you need to—and give help when you are able. Although you, Joe, are probably most often feeling like you are receiving help, out here in readerland how it feels is that you are GIVING help (at least to me) because we learn so much from your beautiful reflections. Thank you for these insights. God bless you and Mel and Jack and your whole clan.


  3. As caregiver to my husband (diagnosis:incomplete quadriplegic), I truly can say that the performance of all those needful things gets easier and more natural over time. In fact, there is great satisfaction for the carer from being able to show “active concern for the life and growth of the other person,” which was the definition of love we were given back in olden times. But it gets easier for the carer, not for the receiver, as well you know.


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