This is part 3, of a 3-part series of essays on my journey with ALS.
* I won’t be giving any specific therapeutic advice on what I’ve done to help me survive. I feel this is a conflict of interest since I own a herbal business. Besides, since ALS is a collection of symptoms with possibly differing causes among patients, what works for me, may not for you. However, a phenomenal starting point, with a wealth of information by someone who’s survived and reversed ALS, is Steven Shackel’s site. I think if you follow his reasoning and protocol, you’ll be going in the right direction.
In the first article, I explained the physical process of ALS, and how it affects daily life.
The second reflection explored the psychological toll of ALS, and how it can so easily pull the patient, into an emotional undertow of despair. It also emphasises the vital role that family and friends play in abating the emotional downward spiral: whether from a terminal illness or otherwise.
In this third and last piece, I hope to share with you some of the things I’ve done, and learned along the way, to make life worth living despite ALS. The result is that, no matter how bad it gets, as long as some or one of these things is implemented, you’ll have a reason to get up and last for one more round.
I named this third reflection “Will” because I believe in Arthur Schopenhauer’s conclusion that the life force is in essence, Will. It is a constant driver towards nothing in particular, but it drives and pushes for its own sake.
I found that my psychological Will was strengthened if appropriate principles were present. If they weren’t, then staying motivated enough not to quit, was almost impossible. The body goes where the mind goes. If there’s nowhere to go, nothing to look forward to, then the body and the Will resign.
You’ve heard the famous quote by the philosopher, René Descartes: “I think. Therefore, I am.”. It’s a famous quote summarising his argument for proof of his existence. Although it sounds great, thinking isn’t enough to prove or achieve anything. There must be action. Any action. Something that gives us immediate feedback. We are physical beings after all. Flesh and blood beings with a nervous system, that’s continuously evaluating its environment on how to proceed.
That’s critical right there. Please reread it. Because that is the foundation for everything you’re about to read and the reason, I’m still functioning.
Life often presents us with a choice of evils, rather than of goods. – Charles Caleb Colton
The psychological pain in the ALS process, boiled down to an increasing inability to do what I wanted: fundamentally, it was about what I could, and couldn’t do. Remembering what I could do in the past punished me with longing, and therefore, reminded me of what I would never do again in the future.
Doing is what makes us creators. It is how we author the book of our lives. But if you can’t, and all you can do is observe, it becomes torture. Like watching someone eat, and smelling the aroma of a tasty meal when you’re starving.
Doing, therefore, became my priority.
I decided to focus my options on that which I could do myself: principally, my home and computer. On my iMac, I have specialised software that allows me to write via a mouse. I run my entire life on this invaluable machine. I operate my home, manage and administer my business, study my degree, communicate with others, read books, listen to lectures, learn new skills, and entertain myself (and others) through this incredible medium.
I restrict my activities to those that don’t remind me of what I can’t do or achieve. What’s the point in going somewhere, only to feel the overbearing nostalgia, that makes me hate my body for its inability to get out of the chair? With the millions of options available to us in such a prosperous and lucky first world country, why to focus on the unattainable, rather than on what is.
I don’t think of homes I can’t buy, cars I can’t drive, clothes I can’t wear, foods I can’t eat, places I can’t go, and work I can’t do.
But I do focus on my home that I can improve, clothes I can wear, making the food I can eat tastier, go to places I can enjoy, and work which I can do.
It’s a case of moving past the delusion of wishful entitlement, into the necessary adoption of practicality. And it’s fantastic!
There exists in the world a single path along which no one can go except you: whither does it lead? Do not ask, go along it. – Friedrich Nietzsche
The quintessential requirement to survive without a psychological breakdown is to remain autonomous as much and for as long as possible. I can’t emphasise how important a sense of personal dignity and autonomy is to the human will. My ability to dictate the course of my day and environment is imperative to feeling in control.
Control is one of those things that I started to lose on much of my life, via my deteriorating body. If I can’t control, let alone move my body, how can I control my personal effects? The answer is, I needed to demand it. My home, my body, my life, my rules.
Those supporting you will be offended initially, while others will understand completely. Eventually, with time and persistence, people will know how important having that small area of control is. It’s imperative to the health of your psychological Will, and therefore, keep giving a shit.
As you would do to an unparalysed person’s home, you wouldn’t just take over and do whatever you want. You would, I hope, check with them on how they’d like something done. That slice of manners is even more important to someone stuck in a chair or bed. You help the most if you do for them, what they would do for themselves, and most importantly, how they would do it for themselves. Then, you are mirroring who they are. You are helping them keep their identity.
Imagine you went to the hairdresser, told them how you wanted your hair cut and then to your dismay, they cut it completely different to your requests. When you tell them to do it the way you like it, the hairdresser would dismiss you and say her way is better, or worse, just ignore you altogether. Understandably, you would be furious. Not because the hair was cut, or that the hairdresser chose her personal taste, but rather, it wasn’t your taste. It wasn’t you.
Your identity is in all those subtle and overt nuances that make you who you are. As long as I have my mind intact and rational, I can choose. I can choose what is done, and I can choose to say no. Saying no is incredibly important when you’re vulnerable.
In the early years of ALS, there was intense pressure from the medical and support services, to put me on assistive devices as fast as possible. And let me tell you, they were pushy. It’s as if they’re on sales commission, and they haven’t reached their quota unless they’re ordering equipment for you. To them, I’m a disease to be managed.
But if there’s one thing I know about the body and mind, is that they will lose their function and will faster, if there’s some crutch doing their job for them.
I chose not to use a wheelchair until it was necessary. That moment arrived when walking with a cane, or a walker was more dangerous than not to. I also decided not have a PEG feeding tube fitted, or use a V-Pap respirator. So to this day, I can still eat and breathe on my own quite well.
I can tell you with 100% certainty, that if I had of allowed these support service employees push me, into earlier than needed palliative support, I would be either completely paralysed, mechanically dependent, or already dead. The chances of infection from surgical and mechanical interventions increase at an alarming rate. Not to mention, the faster deterioration of function from not using the muscles due to mechanical assistance.
Saying No to the medical franchise is one essential. The other is saying No in your personal life too. It’s inevitable that in their attempt to be supportive or helpful, some people will overstep boundaries, and do things that normally wouldn’t happen if you were well. It’s going to happen as you and others adjust to this new reality and its demands.
It’s important that you and others maintain YOUR level of normalcy and environment. You are the one that has to live with it and feel its consequences, on your psychological, and then physical health.
We judge ourselves by what we feel capable of doing, while others judge us by what we have already done. – Henry Wadsworth Longfellow
It’s such a privilege to be able to do things for oneself. And so taken for granted.
The ability to work; to create; to serve; to feel useful, and capable, is of the utmost importance. I get fulfilment from knowing someone is benefiting in some way, because of that which I know and do.
Occasionally, I wake up after one of those dreams that are so vivid and seamless, that I regret waking up. In these particular dreams of mine, nothing particularly exciting is happening. It’s just an ordinary, run of the mill day, with one crucial difference: I’m not paralysed.
On awakening, I sigh: “Shit, it was just a dream!”. The remembrance that paralysis, and worse, will be the rest of my life becomes hard to justify making an effort for.
Then, I remember.
I have work to do! I’m depended on! I have a purpose!
Meaning, I’m needed. I have value. I have skills. I have experience, and thereby:
• I have a business to run.
• I have to earn money to pay the bills.
• I have to save money for when I can’t work anymore.
• I have employees that depend on me succeeding so they can put food on the table and a roof over their head.
• I have customers that rely on me succeeding, so they have access to my herbs.
• I have customers depending on my herbs to heal their lives.
• I have assignments and readings to finish my degree.
• I have friends that depend on me being around for them when they need me.
• I have a mother whose heart depends on me being alive and well, so she can sleep at night.
• I have potentially hundreds of unknown people who rely on me writing something of enough value, to possibly help someone for the better.
It’s not difficult to find good reasons to get up and “do” life. But it is difficult when our perception is limited to a narrow circle of influence. And I wouldn’t blame you for having that self-centered limitation. I have it as well. We all do. Welcome to the human condition.
Happiness is inversely proportional to the amount you don’t do. That is, the more you don’t do, the less happy you will be.
Got it? Good!
“Life being what it is, one dreams of revenge.”- Paul Gauguin
I am extremely proud that I can still dictate the direction of my life. But it hasn’t been easy. It’s a daily Everest climb to will past the constant physical and psychological onslaught; to give up and take the easy route.
- It’s easier to milk this (or any) illness to use others.
- Instead, I get busy authoring a life that’s worth being proud of.
- It’s easier to bitch and whine about how bad I have it, and do nothing.
- Instead, I adapt to what I can do and forget about what I can’t.
- It’s easier to rely on others for answers and surrender autonomy.
- Instead, I roll my wheelchair to my desk every morning, drink my espresso and get to work.
- It’s easier not to do all those things that I can and should.
- Instead, when ALS is begging me to give up, I internally scream to myself: “FUCK YOU! NOT TODAY!”
It’s always easier to choose the easier path. It’s easier to be spiritually paralysed. To do nothing. To simply be a consumer of others efforts. It is easier.
But nothing of value is easy.
Life isn’t easy. But it is valuable. And anything of value demands effort.
Each day is a little life; every waking and rising a little birth; every fresh morning a little youth; every going to rest and sleep a little death. – Arthur Schopenhauer
Let me end this piece with one last consideration. You and I, we’re going to suffer and die; that’s the price of being alive. There’s nothing anyone can do to change that. Humans have the cruel characteristic of being the only species that are aware of their mortality. This awareness is half of the source of our angst. From denial to apathy, to panic, to debauchery and everything in between, we’ll play all kinds of games to avoid dealing with the fact.
But I like Epicurus‘s observation and dismissal of death. He stated life and death are mutually exclusive. When we’re alive, death is not. When death is, We are not. So, to concern ourselves with it is a waste of time.
What isn’t a waste of time, is living while you’re alive. Living means the majority of that life is going to be painful, stressful, boring, monotonous, and bland. Only a tiny fraction of life is the exciting stuff that everyone lies about doing all the time. So why the hell would you not learn to enjoy and improve the majority?
It’s unfamiliar. Sure it is. It’s more challenging. Absolutely. But then, who in their right mind ever believed life was easy? Have you watched the news lately?
Your job is to get up, dust yourself off and keep living the best way you can (whatever that means for you) until you’re 6 feet under. Fall, fail, cry, scream and curse, but when you’re done, stand up and go another round with life. Keep going, keep working, keep doing.
Reading something doesn’t make anything happen. Thinking about something doesn’t make anything happen. Dreaming, wishing, and talking, doesn’t make anything happen.
Doing something, makes something happen.
Those other things are intangibles. They’re possibilities, nothing more. Doing them is what gets things done. Doing them, over and over, because you can; because you should; gets things done. Getting things done, enforces your Will to keep doing. If that’s so, whether you live a bit longer, or die sooner, what you’ve done stays as a reminder that you were here. You were alive.
Then, you can trump René Descartes famous quote, with one of your own:
“I do. Therefore, I am!”
I’ll leave you with my favourite Stoic lesson in cinema history. Nothing resonates and expresses my philosophy, as powerfully as this scene from Rocky Balboa.
Thanks for being here.
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Also published on Medium.