“Those of us with ALS are not ready to lose so much so quickly.” – Martin D’Amore, MD
Fair warning, this is hard for me to write so if you aren’t ready for it, postpone reading.
Picking up on part two, the night after the infusion, Mel left I think around 10. Poor Mel, she has her own medical issues and was stuck there taking care of me, but she finally got to leave and enjoy the hotel. Remember, after my crack-house hotel debacle, I’m only putting Mel in a NICE hotel. And I hope she was able to rest and relax. I went to sleep, waking up every so often but mostly sleeping, with one potty break where I stood and walked to the bathroom (it feels so good to walk!)
I had these velcro things on my lower legs- since I was not got to be walking as much as normal they are to circulate blood, and I didn’t mind the compression, but the air hoses connected me to the foot of the bed and added weight to my legs. And the ibuprofen had kicked in, plus food, so I was pain-free.
In the morning was a different story. I wasn’t checked on very often, my nurse and tech had changed, and the sun was brightly shining in my window. My hamstrings were extremely tight, and my lower back/pelvis/tailbone (all below infusion site) were throbbing. I couldn’t roll in bed to reach the controllers to raise and lower the bed. I couldn’t move the pillows under my arms to help me move. and I couldn’t move my legs more than so far before I worried about the hoses disconnecting.
This was my first physical glimpse of the paralysis of ALS. Mentally, I’ve thought about it, but being a turtle on a supersoft hospital bed, unable to relieve pressure, roll over, move legs, etc, was the first time I experienced those symptoms. You know through the night that someone will come in the morning, that you’ll be able to get help moving. The longer that takes to get there, the more you feel forced to mentally put it behind you and suck it up, soldier. This is doable, trying to offer it up (if you remember, which I’m guilty of forgetting often), putting the brave face on.
Breakfast came, and with it, some relief – able to sit up, and Amy the nurse cut up pancakes for me, but then she had to go. And then… the hospital tray was too high, my arms couldn’t reach up to stab a piece. Then, when I got a piece, it was too dry for me to eat and swallow. It took 5 minutes for me to get it down, then I couldn’t get another piece on the fork. At this point, it’s 8am, I’m dehydrated, I can’t move, my back and hamstrings are killing me and there is no relief in sight because now I can’t reach the call bell, nor my phone. I was able to push the tray table away, and move the bed flat. Then I lay there and cried, and contemplated.
I’m a pretty lazy fellow. Ask Melanie, she’ll agree with me. So will my Mom. But when I want something or want to do something, I want to do it myself, my way. I’m a bit of a micromanager for the things I do want. So being incapacitated either through illness or injury is something I don’t like. I’m saying this to give the fullness of the situation, not for anything else.
At that moment the quote at the top of the page was right there in front of my mind. I’m not ready, mentally or spiritually, for incapacitation. My patron, Fr Al, talks about this too, in terms of his life’s work. Dr D’Amore wasn’t ready at first either. But both men found a way to accept what came and grow stronger in that acceptance, becoming peaceful and joyful in that acceptance. But the spectre of paralysis and all the burdens for me and for my family was there in front of me, and I couldn’t deal with it. It overwhelmed me so much that I couldn’t think of anything else. Yup, at that moment “offer it up” wasn’t on my mind.
Fr Al Schwarz talked about the Garden of Gethsemane, something I and my brother-in-law think is an underappreciated aspect of the Passion. Jesus saw and knew the suffering He was to undergo. It troubled Him even to sweating blood, and for hours! The Garden is the mental contemplation of suffering, the coming to grips with suffering and suffering at that moment, mentally yes but also physically. For Jesus, He prayed even “that this cup pass” – can you imagine what would make someone pray that? Jesus, praying that? What chance do we pitiful fools have in the same situation?
In this moment I had my glimpse of the Garden. A very small glimpse, because I’m not strong. When I was confronted with my suffering, I didn’t pray that it passes, but I also didn’t pray “not my will but Thy Will be done”. No, I lay there and didn’t pray, just thought about being trapped and how much of a burden I was to everyone, and how it would only get worse. When presented with a small glimpse of the Garden, I couldn’t “stay one hour” with Him.
When Mel came in she was very worried about me. Poor Mel, she’s got so much to worry about and I’m stressing her out on the hospital bed. She wiped my face and held me and got me out of the bed into a chair and fed me, all the things which I needed desperately. With food and companionship and movement, the Garden faded, a memory now to contemplate on and pray about for my future.
I highly recommend two books by two holy Men with ALS. Fr Al’s Killing me Softly (get that out of your head now, I dare you), and Joy & Suffering by Dr Amore. Both address the aspects of ALS that I’m referencing, but both also abandon themselves to God with joy and hope. I have 4 copies of Joy and Suffering to loan out if you’re local.
Pray for me, so that next time I may pray for all of you instead of wallowing in my self pity.
Part 3 has humor and a rant, I promise.
16 thoughts on “A glimpse of the Garden (part 2 of 3)”
Hard for me to read, I admit, but I knew you were going through this…I felt when I finished Fr Al’s book this week. I would love to borrow the second book.
Gulp, wipe some tears. Tough post, Joe. I am so sorry you had such a rough time of it. Wish we could have helped. And not a burden, ever. Gethsemane is a great analogy-and yes, Joey has underlined it throughout our Fr Al book and we’ve discussed it too.
Joe- you’re so strong. I know it’s been quite a while since days in the back of Mrs. Caroll’s classes but I don’t think I would ever ever have labeled you as a lazy guy. Much love hugs and prayers. ❤
Oh, Joe. What a difficult post to share with us, and so difficult to read. I hate that you had such a tough time. You are never, ever, anything but someone we love and care for, every minute if we could be there. I think from a young age, and the many times we watched “The Redeemer” during Lent, we saw the impact of the Garden on Jesus. That scene always sat hard with me.
And, though in the moment you did not offer it up, there is No Time with God. You can do it now. And we will keep praying that you will feel some comfort from Jesus. Love you, Joe.
(And I would like the book after Jenn)
WOW, you have a way with words. Your family is Always in our prayers. Always wish I had the right words to add comfort and peace to make everything right in the world. Sending tons of love and tons of prayers.
Joe, thank you so much for sharing your journey . My father fought PLS/ALS for 20 years before succumbing to the terrible disease in 2015. I wish he had kept a journal. Marty D’Amore was a fellow parishioner and close friend of many of our friends in Gastonia, NC. A beautiful family brought closer to Christ through their suffering. Although we didn’t know them well, the transformation was quite visible. I remember seeing him bringing his children to confession and instructing them. We moved to Manassas before his passing. I’ve always wanted to read his book. A friend of ours, Kevin Spalding, recorded an audio version, as well. Keep up the fight, Joe and Mel! You are in our nightly family rosaries! May God Bless you.
Dang…You are a great writer.
I can’t wait to see you tomorrow!
Sometimes we have to just look at our “cross” for a while, before we can accept it. You see what Christ went through in the Garden and He was God. Us frail humans have to somehow wrap our minds around it first, before accepting. It is a process. Don’t beat yourself up, Joe. I know that God gave you that moment in the hospital to prepare you for the cross that He has especially chosen for you. I think of your suffering, now and to come, and you have been an inspiration to us all. Always in my prayers!
Continued prayers for you and Mel….that was difficult to read but thank you for sharing.
Oh dear Joe, you are not lazy and I pray for you to not suffer. Your writings are precious. God bless you. Many continued prayers, dear man. Love from us.
God love you Joe, You probably don’t know me but I know your mom and your aunt, Darden well. My husband and I pray for you every night. When I think of your suffering, I call on God while praying Psalm 91. May He rescue you. I promise to pray for your beautiful family, as well.
Dearest Joe, I had a hard time reading this entry without wiping tears from my eyes. YOU are so strong and a gifted writer as I could feel your pain, inability to move, eat, wondering when someone was going to help you, hold you. REMEMBER Joe, God and Our Dear Mother were with you even in these darkest moments. Bless your Mel. I hope to visit her this weekend.
Please know you are in my daily prayers.
:Love and Hugs
Thank you Susan!!! Mel told me you came to visit her this morning and you should see her smell your gardeni
Gardenias!!! You made her morning in a special way! We love you and thank you so much for the prayers. I know they lift me up when I’m in these moments!
you’re the strongest person I know