“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.