On ALS: 2 – Mind

This is part 2, of a 3-part series of essays on my journey with ALS.

In the last article, I described the experience of living with the physical symptoms and progression of ALS.

In this second reflection, I hope to shed light on the emotional trauma that arises from such an experience, primarily in the early years. That’s generally, the period after the effects of progressive paralysis started to hamper my life, and, before the adaptation to my condition.

It’s a daily gauntlet of physical deterioration and loss, that chips away at the soul.

As days turn into years, and one’s body becomes increasingly incapable of interacting with its environment, it becomes clear: it’s never going to get better than this.

It’s always going to get worse.

Those initial years of fast deterioration were hell on Earth. Not the first year, where I could feel I was sick but still live a relatively normal life. It still hadn’t sunk in how grave my condition was going to get. There was still a misguided implicit belief (hope?) that it was a temporary glitch; a mistake.

In fact, I was so confident this mismatched disease was misplaced, that I had no doubts whatsoever, of being able to cure it; or the very least stop its advance. There’s no way this disease could be happening to me. This sort of thing happens to other people. Much older, other people. Individuals who’ve lived most of their lives healthy and old age caught up with them. I just couldn’t understand  – and therefore, accept – why this kind of disease manifested in me.

The understanding of why something happens goes a long way to offer some solace. Even if we don’t like it, we can accept it as a result of cause and effect. Something like a family history, genetic predisposition, lifestyle choice, toxin or pathogen exposure, accident or chronic injury; something!

It’s justification. That means, if I do this, I get that. Conversely, if I don’t do that, I won’t get this. That there is a higher order; the cause & effect of Newton’s mechanical universe. That the Universe – and therefore, health and disease – is ordered and rational. And by extension, fair.

But ALS came out of the blue. No rhyme, or reason.

It feels like a case of injustice; of unfairness. A feeling of injustice makes feeling the deterioration, pain, and loss of function that much harder to accept.

Loss of function. If that were the only thing I was losing in this nightmare, this disease would be much easier to deal with.

So much to deal with.

Impending death; unstoppable paralysis; loss of mobility; loss of my hands; loss of my legs; loss of communication; loss of breath; loss of friends; loss of love; loss of partner; loss of attraction; loss of future plans; loss of income; loss of career; loss of status; loss of personal value; loss of privacy; loss of independence; loss of autonomy; loss, loss, loss.

Every day, every week, month and year; unrelenting, continuous loss.

STOP! JUST F*CKING STOP!

My Neurologist did warn me. He sadly told me this disease was the worst diagnosis he could give. He loathed watching his patient’s lives deteriorate into obscurity. He lamented, that unlike other mainstream illnesses like Cancer, ALS isn’t a disease that’s short-lived or with heroic treatments for people to hope and rally behind. You just fade away: physically and socially. Fully cognisant and lucid, patients will watch their whole life, identity, and social structure, disintegrate before their eyes. The longer one’s around, the more they’ll witness.

I know, I know, it’s a depressing thing to talk about. It’s also one that we’re apparently mostly in denial over. Unfortunately, I thought the same thing to myself as my Neurologist warned me of it happening. He told me that in every case of his patients with ALS the process tore families, friendships and relationships apart; mainly through abandonment and absence. But, it also brought a few together, stronger than ever. That bond in adversity. The one you don’t know you have until the shit hits the fan.

And it’s all true.

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It’s a journey full of dread, impotent frustration, and misery. The truth can’t be denied nor ignored. It’s just the way it is.

But it’s also a journey of benevolence, loyalty, and humanity.

Yes, despite all the negative forces in this violent ocean of a disease, I’d like to shed light on that small lifeboat that is, humanity. Those people – familiar or acquainted – that give freely of their time and skill to ensure I suffered a little less, by enjoying a little more.

Some, are the ones you’d expect. Others come out of the woodwork and surprise you with kindness.

I’ve had therapists who hardly knew me, travel up to an hour to relieve my pain with their skills. From Chiropractors, Bodyworkers, Physiotherapists, Acupuncturists, and mainstream care providers, whether for free or for a much-reduced fee, took time and effort out of their routine, to come to my home and be of service.

I sometimes feel such gratitude at what I’ve witnessed that I well up inside. But nothing comes close to the emotional salve, which originates from those special few, that ensure my well-being is maintained. We all have someone that will fill these massive shoes. They will differ from us, but their exceptional quality is their consistent, loyal, presence.

They won’t leave because they’re bored, or have something more exciting to do, or because they’re temporarily the target of your frustration and despair. No, they’re with you, through thick and thin, from the beginning, throughout, and to the end, constantly. And that, my friends, is the foundation to mental tenacity, for the patient dying of a terminal disease.

I have a mother that is always popping in with some groceries, or a home-cooked meal, to make sure I have a nostalgic delight. She’ll water my plants, sweep my yard, and empty the bins without needing to be asked. She knows how I kept my home before ALS, and she’s dedicated to maintaining that same standard.

I have another friend and ex-student that will visit to massage my aching muscles. All these years, she’s been driving through dense traffic, taking time away from her busy schedule just to spend some time relieving my aches and pains with that infectious, sunny disposition of hers.

Another friend, will visit me every week, no matter how tired she is from work, and drive for 30 minutes through the cold and the rain, to say hello, fix some things, and spend some time with me. She’s also the one that will spend a week living with, and assisting me, while my personal assistant is taking a much-needed holiday. She’s also my hairdresser, barber, and handyman. How cool is that?

Talking about my personal assistant, here is a woman and my dearest friend, that has been my hands and voice for six years. Moving into my home six years ago, she does all those things that I can’t physically do, while I take care of the rest. There would have been no Herbosophy, no degree, no progress in my life without her. She is the sole reason I have been able to stay active for so long.

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Before you think this is becoming a post to glorify certain people, let me stop you right there. The point is, we are what we are, because of those around us. It is certain that when tragedy strikes, and we’re drowning in our despair, that many people, will abandon you. It’s true. But it’s also true, that there will always be someone that is standing there by your side, ready to drown with you if need be. Because they’ll never leave you.

You are as valuable to them as they are to you. You just have to look up, get over yourself, and remember that no man is an island. We are what we are, because of those few in our everyday lives, supporting us to be so.

The ancient Greek Philosopher Epicurus placed the highest value on Friendship as the way to happiness. He observed that it was your friends that could be the biggest help when you’re in trouble, and the most significant bringers of joy when you weren’t. Whether their support meant advising, consoling, protecting, defending, feeding, or housing you, there was no greater fortune than a caring and loyal friend. Friends are a vital component towards your psychological happiness and emotional will. And mine is no exception.

Despite my willpower or what I wanted to achieve, none of it could’ve been possible without the constant, daily, unwavering assistance of a few close friends and family. They are, for all intents and purposes, the reason I’m still here. These angels on Earth, are my hands, my feet, and my voice. Without them, I could not have done anything physically, and therefore, I can indeed admit, I would’ve chosen the final exit long ago, rather than live an unproductive life.

I just would not be able to cope with my change of fortune, if I couldn’t do something of value.

Doing something of value for ourselves or another is, I found, the sole determinant of our will to keep going. It is the only reason, to get out of bed in the morning. That value has to be higher than the price you pay for the effort expended. This formula applies to all things, but it’s so much more important in the ultimate battle of our lives: a terminal disease.

This will be the focus of part three of this series.

See you soon.
Jorge Tendeiro

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