I don’t remember when I first said those words. Throwing rocks at God. But I’ve said it often. Sometimes I would stare off into outer space or be caught gazing into the distance. Other times I would sit on a bench and look out over Lake Tahoe or take a walk through the forest. There was a trail by my house that meandered along the Upper Truckee river and I would take my buddy, Dakota, my fat, fluffy malamute with me. Whenever anyone would ask me what I was doing I would reply, throwing rocks at God.
Man I threw a lot of rocks! I was just so damn angry and hurt, and bitter and betrayed. I wanted one of those rocks to hit God right between the eyes. Maybe a good crack on the nose or a bloody lip! I wanted him to feel some pain or at the very least, know that he had messed with the wrong guy. What I really wanted was answers. I’m sure many of you think this is an ill advised approach and you might be right. But when you’re at the bottom it’s easy to be courageous or stupid. I have a tendency to be both sometimes.
I threw rocks into the river until my shoulder was sore. Dakota couldn’t have been any happier about my whole temper tantrum by the way. He was jumping after each baloop the water made. Trying to fetch the rock from the bottom. Every time he would gag on a snout full of water and come up coughing and hacking , but he didn’t care. Of course this made the situation even more complicated because it’s incredibly difficult to be angry at God when a big, wet, fluffy malamute is snuggling by your side.
I’ve always considered myself spiritual and I’ve always believed in God. Well, tried to believe might be a more correct statement. My life was pretty good overall and I was grateful for it. I had everything that I wanted. A beautiful family, a great job with a shiny future. I lived where I wanted, couple of vacations each year and a few bucks in the bank. The American dream baby! And then BOOM! Over the course of a little more than a year and a half everything I knew my life to be was just ground into dirt.
I really don’t think God was listening. I knew he could probably hear me but he was ignoring me at the very least. Can’t really blame him though. I was a pretty damn poor example of a Christian. Christian in name only and that was about it. For me to show up now, looking for a fight, I wouldn’t be listening to me either. But I persisted because I needed someone to blame.
I cried a lot while throwing those rocks. Swore a lot too. I didn’t want anyone to see me fall apart. Especially when nobody would understand what was happening to me. I still hadn’t told anyone about ALS except my brother but that needed to change, so I started scrolling through my contacts. I know I was in danger of becoming deeply depressed. I probably already was but I needed to shake it off and get my shit together.
As a side note. Every time I go to the ALS clinic, they ask me if I’ve ever had any suicidal thoughts. This apparently is a routine medical question, and I understand why. But how is someone supposed to answer this question truthfully without complicating things even more? If I
say no, I’m a liar. Has there ever been someone that received an ALS diagnosis, who didn’t at least once, consider checking out early? If I say yes, that shit goes into my personal file and never goes away. Then the headshrinkers line up to try and tell you everything is going to be alright when it clearly won’t be. No thanks. Have I thought about walking the plank? Yes sir I have. Am I suicidal? No. No I’m not. So I lied. Fuck them. I’m a fighter.
As my phone scrolling continued I knew there was only one person I could lean on at that moment. Tina was a long time friend and had shepherded us through Jennifer’s hospice and been a rock for me in so many ways. I knew I could talk through my situation with her and maintain my secret. I dialed her number and asked to meet on short notice. Tina is part of my foundation. I wouldn’t be here if it wasn’t for her. I’ll talk about Tina in a later episode but everyone needs a Tina.
I threw my final few stones into the deeper pool at the rivers bend. Dakota watched the waters ripples pass him by. He was done chasing and not catching anything and I was finished throwing and not hitting anything so we called it a day. I dried him off the best I could and wiped the tear stains from my face. The walk back to the house, the afternoon sun drying the rest of us, was slow and quiet. I prayed there was a reason for all of this. If not for me, at least for my daughter. Did I have God’s attention? Maybe not yet but I still had plenty of rocks to throw. Lots and lots of rocks.
Alright! Enough about me. Let’s talk about you!
ALS affects everyone differently but there are definitely some recurring themes. Obviously I can only be well versed in my own decline but let’s get the conversation started. Shall we?
Getting out in front of your decline will make things easier on you and your team. This is going to require you to be accepting of your situation and honest with yourself. These are not easy things to do and go against the no surrender mind set somewhat. The idea is to be practicing new skills and always be in a state of transition. That’s what ALS is, an endless state of transition, and to stay ahead you should be no different.
I know several pals who really struggled with this; we all do to some level. Nobody wants to be in a wheelchair or get a feeding tube. Yet these are the sacrifices required to extend your quality of life. This is the path I’ve chosen and since you’ve still listening I assume you are on a similar path.
The average pals decline is one point per month. The ALS scoreboard starts at 48 and goes to zero. Zero equals dead. Wherever you score you’re probably aware of what your slope is. It’s math. If you don’t know these numbers it’s time to figure it out. Google is your friend and there are several FRS trackers you can find. I use ALS TDI because it reminds me monthly to update my score and I can review my history. The reason this is important for you to know is because ALS moves very fast and the medical systems we rely on move very slow. Worse than slow, the medical system is reactionary instead of anticipatory. So whatever you are going to need four months from now is probably a six month process, if it’s approved at all. Procrastination is your
enemy here. For the record I’m at a solid 23 FRS score, but I feel like a 37 when my girlfriend is around. Wink wink.
Most of the day to day needs of ALS warriors are expensive, aren’t covered by insurance and are transitory. This is where you need to be proactive, resourceful and cheap. ALS support groups and communities are super beneficial. You’re going to have to network, speak up and ask for help. The help is there but you need to be persistent and look for it. That’s your job! Remember boss? As a brief side note, as you progress you will quickly become an ALS veteran and there will be new rookies coming behind you. It’s a short window with a steep learning curve. If you can, please reach back and help pull the newbie’s along. It’s important.
One tool I use constantly, because I’m always on the move, is my well stocked backpack. It hangs from a carabiner and hooks to the back of my wheelchair, I never leave home without it. I encourage you to do something similar. Your caregiver team will thank you and your quality of life will remain high when the shit hits the fan. But that’s a different story for a different time. Haha!
My backpack has a urinal bottle, I know there are female versions out there, that has saved my pants so many times. When I gotta go I gotta go and unfortunately for the innocent bystanders, I am not shy. I didn’t ask for ALS and I’m sure not staying home or walking on society’s eggshells. ALS is messy! The world needs to see it. My caregiver, Vanessa, says her dignity is already gone because some of the places I’ve had to whip it out. We’ve certainly had to be creative, that’s for sure. But dignity? They’ll never get that. We’re not apologizing for keeping it real. Sorry, not sorry.
I also pack wipes, mouth swabs, and a change of clothes which I have needed multiple times. What else is in the bag? Eye drops. Nasal spray. A bib because I drool like a fool. Plastic
straws. Listerine strips so I’m always kissable for my girl etc. Whatever I think I might need when I’m away from home is in there. I suppose it’s my security blanket . The better I’m prepared to venture out the less worry I have and the more adventurous I can be. It makes me feel normal. Helps me to shove ALS into its compartment where it belongs. It also gives my team confidence that we can weather whatever comes our way.
People sometimes use words like courage, warrior, and inspiration to describe the simple act of trying to live a normal life. They aren’t wrong but the more I think about it I know my word is defiant. Absolutely, fucking defiant and yes I like to sware! It gives me power. So say it with me! Fuck ALS! Yes sir! Yes sir! Fuck ALS! Besides, it’s just a mild case of ALS.
Pack a backpack. Go be defiant and until next time, you can ask me anything.
