Writing a book about ALS

So, it’s happened.

I’ve finally decided to work on and write my book about ALS.

Making the decision was difficult for a variety of reasons. First, I wanted to finish my 2nd degree in Philosophy. With only five units left, it would be a shame to let years of work go to waste. My concern is that if I don’t finish it now, then will I want to later? Since my energy is limited and quickly drained, I can only focus on one or the other: writing the book or reading, researching and writing philosophy essays. I’m still unsure about continuing the Philosophy degree but the book is going ahead; even if it’s never completed or published. I say this because I’m a realistic kind of man and I’ve researched enough to know that with books, many don’t get finished. Every published author has four or five books they first wrote before finding the winning formula. Anyone can string words together, but to write a “good” book is something else altogether. Consider the billions of books published, the millions of writers, the thousands of published authors and the hundreds of classic best-sellers; that’s quite a ratio to consider.

Secondly, I wasn’t sure how to go about structuring the book. I considered four options: memoir, fictional novel, self-help/motivational or collection of personal essays.

Memoir: A memoir seems the most common form of literature that people with ALS (pALS) write. While that’s a fine format, I don’t think my chronological story during ALS is interesting enough to keep readers riveted. Furthermore, I’d like to write about ALS and how I’ve dealt with it philosophically, not my daily life and relationships.

Fictional novel: I don’t have the experience to write a 60,000 – 80,000 word fictional story that’s coherent and interesting. Not yet, anyway. Writing short stories is hard enough. There’s a famous saying: “Everyone knows what a story is until they have to write one.” That’s so true, I can’t even begin to tell you.

Self-Help: I don’t have enough authority, credentials or success to even consider teaching people at a traumatic point in their lives how to succeed or proceed. Specifically with a disease as devastating and relentless as ALS. I’m a very average man in an extraordinary situation doing the best I can under the circumstances. But then, so are thousands of others around the world. We play the best way we can with the cards we’re dealt; even if it sometimes means folding and cashing in your chips.

Personal Essays: This seems the most plausible format, and it allows room for creativity in its structure. Essays can be long or short, chronologically arranged or themed, intimate or detached, focused on an internal or external journey; the possibilities are only limited by one’s imagination. The down-side is that they may turn away a demographic that likes a story-like narrative. Then again, whatever format I choose will not appeal to certain people, and that’s not even considering the very small psychographic interested in ALS.

But as the writer’s mantra goes: “Write what you know.”

That’s often misunderstood to mean physical experience. Not so. George Lucas didn’t know what it’s like to be a Jedi nor how to fly a Millennium Falcon when writing Star Wars, but he knows the yearning for adventure, betrayal and loss. These are universal human conditions that everyone recognises when they see it. Likewise, I know the physical and existential effects of ALS, but also how to overcome the psychological toll of the experience. That’s what I have to share. I think that would be useful and something I wish was available when I got the diagnosis. Because let me tell you something you already know, your psychological state is often the crucial determinant in how far your body will continue to fight. You see this in elite endurance sports, special forces selection processes and survivors of every conceivable tragedy. The survivors are overwhelmingly determined to win, overcome and survive despite every fibre of their being screaming for them to give up.

Philosophy has been the inner voice pushing me forward with reason when everything within me wanted to give up. Philosophy has been my cocoon for sanity; and I have a strong feeling that it can be for others too. That’s what socraticlife.com.au is all about. Using philosophical principles to question and improve on our state of mind—particularly for those with ALS—so that our lives are better lived. However, anyone can use it. It’s philosophy after all, and there’s a reason its principles are the foundation of western civilisation, modern science, psychology and even some spiritual practices—because it works.

So you may be asking why I’m writing a blog post about writing a book. Frankly, it’s a little psychological trick to make me accountable by making it public to you. You are the one that cares enough about what I’ve got to say, to part with your email and be notified of new posts. That’s humbling to me and very motivating. Over time as I write, I’ll be posting updates on my progress and any issues that come up, including reflections on the process itself. However, be prepared that this will be a long process with no guarantee of a quality product or even a finished one at the end. The process of writing a book is onerous because of the multitude of drafts, rewrites, revisions and even trashing of material as the book progresses. Writing the book with a computer mouse takes the onerous definition to another level—it’s a mind-numbing process. Nevertheless, I wouldn’t be undertaking a project with such a high probability of market failure if I didn’t think it had intrinsic merit. That’s the price of any artistic project—do it because it calls you. It’s a siren song guiding you towards the inevitable, yet, while she sings one is destined to follow. With your company, the journey’s a little easier.

Thank you for being a subscriber. Knowing you’re out there makes my journey sweeter.

8 thoughts on “Writing a book about ALS”

  1. Good on you Jorge, firstly for making a difficult choice, and secondly for going forward with your book. Seems to me that it may be of more value to the world than you finishing the degree at this point. You have something important to share, whatever the format, so go for it!

  2. Jorge I congratulate you what a journey you are going thru ,you are brave and give me confidence to live the best life I can after a traumatic brain injury incurred by an accident .I look forward to your philosophies ,your book and buying your herbs they alone with your advise assist me . Keep going Jorge it is real men like you that give hope and enjoyment of life ,I am a friend and a supporter of you . Kindest regards

    1. Danny,
      I’m very sorry to learn you have a brain injury. Yet, here you are doing the best you can with the cards you’re dealt, and with enough strength of character left to support me on my journey; that’s quite a thing to behold. I do hope I complete it, but I hope that it stands up to your expectations the most. Public failure is a terrifying prospect. However, if we cowered down every time something scared us, we wouldn’t be able to live with ourselves. Cowardice festers within and unacknowledged it mutates like cancer into envy, resentment and bitter misery. Keep getting up, keep moving forward. The world needs men like you.

  3. Jorge I have been a customer and follower for some years now. I have been amazed and sustained by your strength, positivity and humility (especially now that my path has become tougher with cancer diagnosis and limited lifespan) . So thank you for sharing and being the get going powerhouse. All the best

    1. Thank you Kathryn. Please email me regarding your diagnosis and I’m terribly sorry for the news. Remember that life doesn’t stop until it does; and neither should you.

      1. Jorge Thank you for your encouragement. You are an amazing man to handle study, writing and your own life issues and still show interest and empathy with others.
        My diagnosis is possibly bowel cancer (no primary found) with mets to the liver. I am on chemo but believe in my milk thistle and turmeric too. Also have pawpaw leaf tea and hemp seeds but have not yet used these.
        I lost my husband to cancer 4 years ago but with our daughter enabling me, am grasping at all that life has to offer. Still believe in the “What a wonderful world”
        Kindest regards and all the best

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