I am not ready…and neither is He

I thought I was ready.

Over the course of the last few months, I have noticed decline in my condition. It’s subtle, but from all of the research I have done on this relentless disease, I know what signs to look for, thus I know what decline looks like. And after six years of battling, I have come to accept my diagnosis and have made peace with the most likely outcome. So yesterday, I had a really bad day, and I was ready…or so I thought.

My day was great to begin with. Aside from the occasional tickles in my throat, soreness in my body, and fatigue, it was a typical day in the life of a person with ALS. But sometime after lunch, I had a terrible “choking attack”, as we call it. In hindsight, I wasn’t even eating anything at the time. Maybe it was something in the air or a little piece of dust, but something got lodged in my throat, and I could not clear it. For most people, this is not a big deal: you drink a little water, cough it up, and you go on with your day. But that is not the norm for someone with my condition. For starters, I can no longer cough on my own. I don’t have the muscles, I don’t have the strength, and I don’t have the breath. Sure, I could take a sip of water, but when you’re in the middle of this type of an attack, it is very hard to get anything down your throat while you are gasping for air. All the while, the people around you are in a panic to help, but you’ve lost all ability to communicate with them. Not to mention that as I am desperately gasping for air, my stomach muscles are working overtime to try and clear my airway. My eyes are tearing, and I cannot see anything that is going on around me, leaving me feeing like I am truly in the dark. And what makes it even worse is that the force that I am so desperately trying to exert usually causes a bloody nose. So while blood is pooling in my mask, my nose is getting more clogged, phlegm is dripping down my throat, my eyes are completely shut, and I don’t know what to do. All I know in that moment is that I am terrified.

That little episode subsided, but that would not be the end of the discomfort I would feel for the remainder of the evening. Just around dinnertime, my stomach started to feel uncomfortable, and I chalked it up to the muscle contractions that I had been forced to use earlier in the day. But then it got considerably worse, and my mouth began to get warm and watery. My body felt hot, but my teeth were chattering. I suddenly thought I was going to vomit. I closed my eyes again, hoping for it to all go away, and I don’t think I opened them until the guys were putting me to bed. That’s how miserable I felt. And I was whimpering, telling them how I just wanted to curl up into a little ball and go to sleep. But for a person with ALS, even that little bit of comfort is impossible. So while I sat captive in my recliner, one of the boys held a garbage can up to my mouth while I gagged into it, another stood by wiping my eyes with a Kleenex, and Brian grabbed a cool cloth to place on my forehead. I couldn’t speak, and they didn’t know what to do for me. My stomach continued to ache, and I managed to get the message out that I needed to use the bathroom. But my body was so weak, and I was so scared, that I didn’t even have the courage to get up and try to relieve myself.

Everything in the room was muffled, but I knew they were all talking and trying to strategize how they could alleviate my pain. I heard someone mention the bedpan, and I wanted to cry even harder because it was just so humiliating. I heard someone mention the hospital, but that terrified me even more. And I shook my head emphatically “No”, the most life I had shown in minutes. I knew they were trying, but in that moment, I wanted all of this to be over…meaning I fully believed that this might be the end. I wasn’t interested in any of my pills because I could not stomach them, and they tried giving me little bits of THC (which, by the way, ironically help with nausea) but I couldn’t even consume a piece the size of a popcorn kernel. I just wanted to go to bed, and quite honestly, die quietly in my sleep. And what’s worse is that getting me to bed involves removing the respirator and the air that serves as my lifeline. But with everyone’s encouragement and support, they got everything in place and moved very quickly so that my transfer was as seamless as possible.

Once in bed, Nick suggested we just turn off the lights and not complete the usual routine, which include readings from our books of nightly prayers. But I insisted through gritted teeth, “I want to hear the prayers”. I was trying not to talk at this point. My eyes were still tightly shut, and Jake began reading. And within the first few sentences, I began to cry. Because in that moment, I felt like I was getting a message.

I won’t quote the entire verse. But the first lines went like this:

   Trust me, and don't be afraid. Many things feel out of control. Your routines are not running smoothly. You tend to feel more secure when your life is predictable. Let me lead you to the rock that is higher than you and your circumstances. Take refuge in the shelter of my wings, where you are absolutely secure.

I reflected on those words as I settled into sleep. And with the way I was feeling, I actually wondered if I would wake up the next morning. And part of me prayed that I wouldn’t. But even as I had that thought, I could feel tears welling in my eyes. Because I realized one thing: I was not ready to go. Even though I made peace with the disease and have the utmost faith that the outcome will be whatever is meant to be, I knew then and there that I really wasn’t ready. And that is the most frightening feeling a person can have, knowing that you have no control over when your life is going to end.

So when I woke up this morning, I thanked God for a new day. Because I just was not ready yet, and I have more to do. Clearly, He felt the same.