Without getting into personal life, I’ve always preferred Jean – Luc Picard of the USS Enterprise over any other captain. End of story.
Like Picard, I also have my share of problems. Thank goodness Whoopi isn’t in this episode! But I’m going to be vulnerable and share some stuff I’m going through. If you haven’t noticed, the blog got real negative and emo. This is easy to explain as I am going through a dark place. Those who know me, know that I am very emotionally moved, and flow from happiness for a while into dark moods that may take months to get out of. A doctor would probably say I’m bipolar or insane. The last time this happened, was hostages being beheaded in Syria. Before that was the consulate attack in Benghazi. Etc. Right now it’s the church scandal, the political bs that is going on by both parties, the downtrodding of human life by a medical aid in dying proposal that i don’t doubt will pass in VA, AND my lack of ability to come to grips with ALS.
There are so many strong people out there, with strong stories. I’m not comparing, but I’m not like them. The book I told you all to read, he was accepting of his ALS, but his wife had trouble with each of new stage. For us, it seems the opposite. I can’t deal with each step, I’m too proud to admit I need help or can’t do something I used to, I get angry faster with the kids because I perceive they don’t listen to me or understand me. It is not a joyful experience. As someone wise told me, it’s not choose bitterness for Joe!
But I thought I would share. I won’t talk about physical ailments, because we all have those. But you should know the little ways that everything seems to be turned against you, mentally, in my particular situation.
For example. Going up or down stairs is a chore now, as I have posture issues. But more than once I have had to stop and cling to something, terrified that my legs will give way. Then, RIGHT as that is happening, a small voice says it would be better to fall down the stairs, why not just do it? ……… Right?! Freaks me out every time.
What about other stuff? I’m afraid to get my feeding tube, because it is a symbol of how I can’t eat. Or I don’t want to use the bipap because it takes too much time, and I don’t want to be weak. It is all about pride and not accepting each step as it comes. I am not accepting of the progressions, and why is that? I don’t know. Because I’m human, right? But, I am going to get the feeding tube, I will ask for more help, I just need prayers, please. I have nightmares about not living my life as I should and being in sin.
So what do I do when I’m depressed? I found that if I keep my mind busy, if I’m thinking about solving problems, if I’m inventing, then it opens up the outlook. Why do disabled and old people begin to wither away? They are left out and feel they can’t contribute. And the way we treat them is shameful.
So today, after I wrote this very open post, I took my new bump cap from Findlay, and went outside on Isabel and took a short walk or ride with Luke and Mel. It cheered me up, holding my son on my lap, and being with my wife. I am going through dark places but I’m supposed to be here with them, no matter how many sufferings I have. And he’s cute as hell!
Joe's ChronicALS 
Darn straight you two are cute! Same smiles and faces! Praying you through these dark days. We’ll get the stairs thing all worked out asap. I know all these new gadgets and gizmos and tubes are not very thrilling, but if they can help you or your family, it’s best to give them a go. -Said with love and props to my inventor, cause-y brother! That’s what makes you you! With a tube or not, -speaking clearly or not, you’re the you we love and don’t mind traveling/helping in our own feeble way with you as much as we possibly can. Sorry if you have to ask, but don’t feel bad about asking.
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Joe, I am going to focus my prayers and sacrifices on you and God getting you to a place of peace and trust…and even joy. As always, I have no idea how He does these great things , but He does – I have seen it and I know He will grace you in the same way. I am grateful for your incredible honesty and insights. Your family is very blessed – we need more men like you!Peace.
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I love you, Joe. Your frankness is so appreciated, and helps me be more united in spirit with you when you share your trials. Luke is that ever healing balm!!!
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What Jenn said, except you don’t know me. Your courage…that thing that lets you tell it like it really is…we need that. Those of us who don’t have ALS need your words and images so we can help our loved ones, colleagues and students understand what it is like to be you. Especially with Luke on your lap.
So often we think of our loved ones who are facing down horrific diagnoses as solo warriors. That’s not how it really works, most of the time. Luke on your lap is the the image we should take into spiritual battle, for you in particular and for our loved ones, too. We are meant to worship in community, and that means we are meant to help bear each other’s burdens in that same community.
Thank you. Everything you do matters.
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Thank you for your honesty. It’s inspirational even though you probably don’t feel very inspiring. I appreciate you sharing your dark, diffucult time. Your suffering is sanctification not just for your own soul but everyone around you, as I’m sure you know. Your dignity reminds me of St. John Paul. May he be a constant source of strength for you as your days get harder amd possibly darker, and may he intercede in asking God for comfort amd brighter days for you all.
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Thanks for sharing your intimate thoughts and exposing your heart to your readers and the world. You are a living breathing supernatural hero! Your cross is laid before you and you must live it. There is no choice in which sacrifice you will offer today or tomorrow or the next day. It has been “forced” upon you by the Divine Hand, foreseen from all eternity. It is in your weakness, your vulnerability that you have become a true supernatural hero! Each and every day you choose to open yourself to God’s grace. Your desire to love, your desire to be perfect, your desire to choose joy, your acceptance of your limitations, the enduring of your pain, the letting go of human respect, the choosing to get out of your bed and live another day, the love and tenderness you show your wife and the joy you find in your children are all the “yeses” of a heart and soul full of beauty and grace . You are living a life of holiness and the less it feels like it the more it is a reality. Thank you for allowing us a glimpse into what life is living as a Supernatural Hero. We love you and will increase our prays for you. Offering our family rosaries for your peace, surrender and joy! Sweet Heart of Jesus be Joe’s refuge!
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Love you, Joe! Our prayers continue.
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Hi Joe, I just love the picture of you and Luke in your Isabel and neat helmet on a beautiful sunny October day! You both look so peaceful and happy. I can truly understand your dark days and why me and I have a hard time with “its God’s Will” None of us can understand when you have a beautiful family who love and need you in their little lives as well as Mel. Anyway please know you are in my daily prayers at Mass. Keep up your blogs and your perseverance!! YOU ARE A WINNER
Peace and Love,
Susan
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Praying for you, Joe!
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Brother Joe: You have been very especially blessed by the Christ to experience your own ‘Via Dolorosa’ imitating His. I can only imagine His emotions and perception as He was treated so badly by so many of His creatures. As He was, you are innocent of the “sentence” you are living, but your graces in Heaven are uncountable. I marvel at your strength and courage, even more than I have those friends who survived war. You are indeed a wonderful example to emulate spiritually in this troubled age; as Christ has determined that you be the reminder for all who know of you, what Jesus underwent to win us eternal life. What a huge and noble mission Christ has bestowed upon you. It may be that each stage you encounter is like one of the Stations of the Cross that we venerate. Please know that you or Melanie can call on us anytime for any reason. We are just down the street. God bless you all with His infinite graces, Friend. Bill C.
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love you brother! you’re an inspiration to us all
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and not that you asked. but I’m more of a Kirk guy! probably showing my age
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