As we enter the 10th year battling ALS, I decided to write a letter to myself as a new ALS Caregiver. There are so many things I wish someone had said to me early on.
Dear ALS Caregiver,
Welcome. You have entered into the war against ALS. Consider this preparation for battle.
What I’m about to tell you is going to scare you. You won’t want to hear it but I encourage you to continue on. Take a deep breath. Get through this lesson and I promise it will all be worth it.
This is beyond hard. The hardest thing I’ve ever had to do and way worse than I ever imagined. It’s ugly, it’s awful, it’s sad, it’s terrible. Some days are like living in a horror film, hour after nightmarish hour. Take it as such. One day, one hour, one minute at a time if you have to, just hang in there.
You will learn how to discipline yourself. You will teach yourself mind over matter. You will learn how to grin and bear it. And sometimes you will fail and be a blubbering mess in front of your PALS. Strengthen your mind, grasshoppa.
There is no map, no timeline to go by. No one is coming to save you. That’s okay. You will need help but you…can….do…this. You’ll figure things out as you go and you’ll save yourself.
There are sights and sounds and smells you will never be able to forget. Images and situations burned into your brain, forever making you weep if you stop to ponder them for too long.
It’s almost unfathomable just how awful it gets. The sleep deprivation alone is a monster. Feeling like a prisoner in your own home while witnessing the love of your life endure being a prisoner in their own body, well…it’s just almost more than you can bear.
Days and nights will blur together, your home will become a hospital and the word normal will mean nothing. Events will be missed, so-called friends will fade away and the term groundhog day will take on a whole new meaning. You’ll wonder how your loved one could choose to live like this and burden you in such a way. Can’t they see the pain they are causing you?
Sadly there will be these kinds of frustrating moments where it will become hard to separate the patient and the disease in your mind. You won’t want to and you will know better, but on the darkest of days you’ll find yourself resenting your PALS a little if not a lot.
Yes, you love your PALS more than anything in the Universe but you f*cking hate ALS. It takes so much. Hopes and dreams, careers and plans, bucket lists and the like. Gone or put on hold. Life interrupted, with no end in sight. Accept the feelings then let them go, we all know it’s not their fault.
You’ll find yourself praying for the end at some point and it won’t matter whose or how, you’ll just want it to be over. “Over” has a heavy connotation, as there is no cure. You’ll wish it was over and be on your knees begging that it never ends all in the same second of time. You’ll see how absolutely selfish you can be while also sacrificing just about everything you’ve got, including your own sense of self.
Say goodbye to the person you know as “You”. That person has left the building. Your heart of gold can remain intact but know you simply won’t have time to do all the things you used to.
You’ll find yourself crying on the floor of your closet way more than you’d like to admit. Because you thought you were stronger than this. You thought you were one tough cookie but now you’re crying…AGAIN?!
This disease will try to break you. It tries to break everything in its path. And it succeeds all too often, leaving devastation and sadness behind.
Some days will be a sheer test of your will. You’ll wonder how in the hell you’ll be able to keep going, to keep enduring the pain and the grief and the physical strain and the emotional toll, feeling as though your very soul is being chipped away.
On top of it all, floating ever so slightly above you, all the time will be guilt.
For being able. For eating food and for walking and for talking and for something as simple as being able to turn your head to look out the window.
You need to get ready. You need to toughen up. Find your patience, you will need it for sure. Forget what you know, forget your routines, prepare for the road less traveled and for the love of God, learn to ask for help. If that doesn’t come easy then at least learn to take the help that is offered. It won’t be easy being the receiver after a lifetime of giving to others but it will just be easier that way.
You’re about to find out who you really are and I hate to tell you but you’re not as great as you think. You’ll tell yourself that the last thing you’ll do is to make your PALS feel like a burden, yet you’ll find yourself doing that too. You’re going to say things at four in the morning when you’ve had less than an hour of sleep for the hundredth night. You’ll wonder how those things got past your teeth from your tongue, yet the words will hang heavy in the quiet air, then will echo on in your brain forevermore.
You’ll wonder just how in the hell our healthcare system could be so messed up and such a disappointment to the ALS community, and be insanely disappointed by doctors and nurses alike while wondering why this disease isn’t a national emergency.
Of the medical community, friends and family…keep your standards high and your expectations low. ALS is alot for anyone to handle.
You’ll wish you were exhausted. There is no word for the level of tired you will be. Something like your little finger will seem like an easy and fair trade for a good night’s sleep.
Your body and mind will scream at you in tired frustration and you’ll wonder how your loved one and you could possibly have been dealt such a cruel fate. Though you don’t believe in asking why your mind will often ponder what thing in your life you must’ve done for this to be your karma. Yet with each contemplation of the subject, you’re sure that can’t be it. The why is best left alone, as no conceived answer could be correct.
To be blunt, it’s absolute Hell on Earth sometimes but guess what?!
There are silver linings and if you’ve read this far you’ve got what it takes to do this, dear caregiver. Yes, YOU!
One of those silver linings is this. You will become smarter and you will learn to better think for yourself. You will be braver and you will speak up more and you will learn to navigate a broken system. You will ask more questions and demand more answers.
Your perspective on so many things is going to change and you’ll better understand what and who is important. You’ll recognize the power of the present and will know that being here now is the most real thing there is and that it should be lived in that moment…recognized and savored. You’ll be here now, present and mindful. And you’ll have a great appreciation for those friends and family that stick with you as you travel this long and winding road.
You’ve already been so brave and strong but you are about to become a WARRIOR. You will learn many hard lessons along the way and encounter many people you wish you hadn’t but you will also rise like a phoenix out of the ashes, stronger than you ever imagined yourself to be.
You will feel more alone than you’ve ever felt in your life but good news! There is a community of people fighting the same war and you live in a time where being connected is easier than ever. Find your tribe of ALS caregivers. They will see you like no one else can.
Our battles are different but the intended target is the same.
ALS.
It must be destroyed but in the meantime, you’re going to have to endure the battles and continue on in the war. You will meet, then fight alongside other amazing warriors and will create lifelong bonds with strangers that will mean everything to you. Those bonds will come with incredible pain as well.
Your love for your PALS will be tested in many ways. Though you won’t question whether you’d do it all again, you will tend to question the past. Let it go. It can’t be changed. Ever.
Okay, fine, maybe if you had a time machine and I can tell you now that you don’t, so stop. They did stuff, you did stuff, you gotta move forward with ALS and where you are now. Doing that together is something beautiful and special in and of itself. The bond you’ll have with your PALS will be on another level, a higher plane…something few humans will ever know.
All right, fellow warrior, enough talk. It’s time to suit up.
YOU’VE GOT THIS. You’re. A. Badass.
Yes, you are! It’s okay if you don’t think so now. I promise you will know for certain later. You’ll be far from perfect but you’ll make it, I swear.
You’re terrified and you have every right to be. As strange as it sounds to say, you should also be excited. You’re about to engage in life in a weirdly beautiful way that only a fraction of people on the entire planet can say they’ve been able to do. You will gain knowledge that few will ever have access to.
It’s going to change you for the better and you’ll know what an actual badass WARRIOR looks like, and lucky you!
That badass warrior will be the person in the mirror.
Love,
You
Certified ALS Caregiver WARRIOR
