I’ve never asked myself this question before. In fact, thirty months into the diagnosis of ALS I still hadn’t asked this question. So, what leads me to ask it now? Antoinette. She asks it in the most direct manner, “we were supposed to grow old together, what now? What’s it all been for? What’s it all worth?” I have no answer to this, but it leads me to ask myself the question we should all be taught to ask ourselves, what’s it all for? What’s the meaning of life? After all, if we don’t ask this question how do we navigate through this world? Haphazardly, I’m forty-eight and still don’t know the answer to this question. I’m going to try to answer it for myself though!
This is not a blog about the meaning of man’s existence – for that you can read Sapiens by Yuval Noah Hariri. It’s my thoughts, facing my mortality, on what the meaning of life means to me. It may touch religion, politics and perhaps even humor. For what would the meaning of life be without humor?
Mortality is the only thing we have in common in this life. We will die, when and how differs for everyone. War, diseases, trauma, suicide or old age. How we live also differs vastly. What forms the basis of our life, the meaning we place on it, and how we navigate it? Is it Islam, Catholicism, Buddhism, agnosticism or atheism? Something must inform and guide this life we live! Perhaps this is the question we should ask. What does a good life look like, what does a bad life look like? Is it not driven by electric activity of neurons in the brain? Who controls that? Our genetic code? Why then has two thirds of my brain stopped firing? Who decided that? I didn’t, not directly! As a result, the quality of life I would like to live no longer exists. The meaning of life as Antoinette and Tallulah had thought of no longer exists. So, who does determine the meaning of life and how we live life? We have no choice; we’re put on this planet in whatever social structure or race we are born into. If you believe in a greater Omnipotent being, then you’ll believe your life has been predefined. More than seven billion people, really? An Omnipotent being surely cannot control the fate of seven billion multi denominational people! Would he even want to become involved in every turn we take in life? Isn’t it recorded that this Omnipotent being leaves us our will? So, I’m left to believe that we are responsible for the meaning of our own lives! We get dealt a hand in life’s poker game and need to play out the hand as best we can, one card can make all the difference!
So, what is the meaning of life? The poet Antonio Machado wrote something I would like to share before attempting to answer the question for myself.
“Path maker, there is no path,
You make the path by walking.
By walking, you make the path …”
Destiny and fate are two words that should not feature in any definition of the posed question. Especially when you examine the words above. It has also become very clear to me that an Omnipotent Being is neither responsible, nor directs our life in a manner that we believe we are destined to live! Was I destined to be diagnosed with ALS? Was the young family destined to endure the grief and pain of losing a loving father and husband? I cannot believe this as my diagnosis was not genetic, meaning it wasn’t predetermined millenia ago by an Omnipotent being. Did the Being define that people dispersed in generations along our path will die of ALS so that the world, family, or the individual could be taught a lesson? Growing up in a Christian household we are taught to believe that everything happens for a reason – we are also taught to believe in prayer. Neither have been proven scientifically to be correct. As for prayer, no amount of prayer is going to take away ALS. So I can’t believe that life’s purpose is to live a religious lifestyle, only doing good, as a result to live to a ripe old age and then die.
So, I go back to the quote,
“Path maker, there is no path,
You make the path by walking.
By walking, you make the path …”
I do believe in an Omnipotent being that created us – whether by evolution or by other means, it’s irrelevant, we are here so what do we do with this life? We make our path by walking, by walking we make our path through life. Once we are old enough to understand, we are responsible for our own path in life. Yes, our parents or guardians play a role in setting the foundations and core values in our life and if we are dealt a good hand, we have a solid foundation to build from. We decide if we take a good path or a bad one. We decide if the path rambles or is structured. What we can’t know for certain is what lies ahead on this path and when. No matter how well the journey is planned, the contour of the path varies, the challenges vary, even the substrate varies. One thing, however, remains constant: us, the path makers. We decide how to tackle each part of the path and the challenges we face. The path can be scenic and beautiful or dark and ominous, we should still approach the path with curiosity, determination, resilience, authenticity, awareness and integrity. Knowing this early in life allows you to approach the path with confidence, it still doesn’t prepare you for “Peter, you have ALS. Your prognosis is three to five years.”
Being a path maker, responsible for our own life is both liberating and scary. We can direct the path in the direction we want it to go and change it if we don’t like it. Sometimes we are forced to change the path, circumstances out of our control make the path insurmountable. Retrovirus, cancer, trauma, genetic coding makes the end of the path clearly visible, mortality! The interesting thing about forging your own path is that you choose who crosses the path and journeys with you, and if the path comes to end, you move on. The challenge comes when you travel this path as a family, so many more obstacles occur along the path. The only thing to realize is that there are no guarantees in life. Treading this path allows you to create the meaning of your life, hold onto this when life becomes unhappy. When you move forward again, it is with meaning and no matter how tough the path becomes, remember you control the path and that holding onto the meaning of your life will always get you through the insurmountable! After all, you are responsible for your own happiness!
I hear you ask where has my path lead to? Had I known from a young age that we are the path makers, I will have been able to direct my path better. I believe the values I use to navigate my path are authentic to who I am, no pretenses here! As I face my mortality, I look back at the path and the crossroads where people have joined my journey. I’m happy that I’ve left a legacy to be proud of. I’ve met amazing people along the way and learnt many lessons from those young and old travelers. Would I have liked more time to explore forks in the path? Yes, I would, and now that I realize we are the cartographer of our life’s path I would be brave enough to explore so many paths. But now I have a different path to follow, one that prepares me for the end of my journey. As T.S Elliot said, “we shall not cease from exploration, and the end of all our exploring will be to arrive where we started and know the place for the first time.” So, as I prepare to return my positive energy to the universe, where I started, or as Vincent Van Gogh said ” someday death will take us to another star,” I’d like to leave you with a few lyrics from my favourite Monty Python movie, if you reach a challenge along your path remember,
Always look on the bright side of life.
[whistle]
Always look on the right side of life,
[whistle]”
#ChallengeALSDXB
Judithiris
Oh Peter you never cease to amaze me with what you write. You face every obstacle with such determination and always a smile.Yes you have been dealt a rotten path on your journey through life but, on this rotten path you met a wonderful woman who with your help gave you a beautiful daughter and together you made beautiful memories. Nothing is guaranteed in this “Lottery of life” and as l have gotten older l now wake up each day grateful to see another day.
Thank you for sharing so much with us in your writings. You should write a book you are that good. Love you all lots
Susan Matthews
Hello Peter, this is your mad aunty again. This time I am not going to rant and rave about the Omnipotent (I love this word you used, even though I had too look it up in the dictionary lol) that is supposed to listen to us and help us when were need Him the most. With all that you are going through I salute you. Why? the philosophy in what you put into words gives me the strength to look at the world with a different perspective. I sometimes sit and think Why did I lose my toes. What did I do so wrong that I suffered this retribution? Why did this happen and why did that happen THEN I think of you and what you are going through every day and some how my thoughts become irrelevant because what you are going through is a million times worse.
I have to thank you for putting Monty Python’s song in my head, I am walking around singing it lol.
I think of you, Antoinette and Tallulah every single day. I love you all so very much xxxxxxxxxx
Lori Campbell Rose
Peter, you left a legacy upon me and I am sure you didn’t know that. I used to watch you in meetings being so detailed and thorough. Oddly enough, today I came across a photo file of you, me and Carolina Suels on a site visit to Burj Khalifa and the Armani sales centre.
Your writing is brilliant and it moves me and gives me inner strength. I find a new meaning and outlook when I read your articles!
Thank you,
Lori
Loti
Sally
Pieter, thank you for this beautifully written blog. I think this is the one that I will read many times. As you well know I had to read it twice to find the answer to a question I asked.😘 I can’t wait for the next blog 👍
PAT, You are my inspiration and there is no end to the amount of love that I have for you.❤️
Your blog , through the image that you used, took me to the world of Vincent Van Gogh. I thought I would share this verse with you, as he refers to your path, from The Letters of Vincent Van Gogh. 😘😘
(I am sure it’s something you have read. 😊)
I must continue to follow the path I take now. If I do nothing, if I study nothing, if I cease searching, then, woe is me, I am lost. That is how I look at it — keep going, keep going come what may.
But what is your final goal, you may ask. That goal will become clearer, will emerge slowly but surely, much as the rough draught turns into a sketch, and the sketch into a painting through the serious work done on it, through the elaboration of the original vague idea and through the consolidation of the first fleeting and passing thought.” – Vincent Van Gogh
Claire Penberthy
Wow as always amazingly expressed but now that my own mortality has been shoved in my face and realising that the life I had planned is not the life I will have, this blog resonated very loudly. Your strength and insight will give me strength. I am so glad I got to meet you when Frank and I were in Dubai … something in your eyes touched my soul deeply and I felt a “weird” connection with you. Maybe following in your enlightened footsteps was the reason. Much love to you, Anotinette and Talullulah, Claire xxx
Anita Boniface
Hello Pieter, Sally your mom sent me this link. We worked together in 2009-2011 and Sal was like a mum to me. As I have –
always felt a connection to your family (Your mom used to show me pictures of Talulah growing up doing Ballet classes for example and tell me stories of you and Armani – I think he once gave you a watch- I always was touched by Sal’s beautiful devotion to you all and your closeness as a family. Sally is so caring and I felt the benefit of that too, with your Dad too until he discovered I was unmentorable!!
So as I have always felt a connection to your family (you probably know little if anything about me) I was really upset when Sally told me what you are all going through. Then I read your blog. Well, this most recent entry for this month. My goodness! What an incredible testimony to determination, resilience and spirit. It is your Mum and Dad right through, but not only that. Your Mum once gave me a book of poems and one verse of the first poem reads :
“I too am a flower in the garden of life
I too have a mission and power
To gladden, and brighten and cheer in the strife
My fellows- a heavenly bower.
My lot is fleeting- my portion is brief,
My sphere close-ungirded as theirs:
I’ll strive, while I can, to bring others relief,
And minish their burden of cares.”
That was your great great grandfather Herbert Nield. He found his meaning in bringing strength, courage and fortitude to others by being , ‘constant, true’. Your blog entry and your photos resonate so clearly with this for me. The spirit of your family is in your writing and in your thoughts, and in that you write with dedication and courage yours is what I consider a Christ like testimony of suffering. You take it on you and in your writing you use it to teach/ explore it / to learn. So it is in no way anywhere near futile or hopeless but laden with meaning and inspires.
Thank you Pieter for writing. my prayers are with you. Love from a stranger in London. Anita Boniface
Sancho
It’s a good topic to ponder on about. Especially when dealing with issues of mortality. I’m no expert with the whole life thing but I think that we’re not suppose to know the answer to that one. That question is meant to be answered by those people around us. It is from their unbiased perspective that they can glimpse a part of each meaning that is our life. And for the ones who are in question or for whom it was directed to, the only thing we can do is just to go on living. There was a time in my life where I had to deal with deaths roughly five times a week and it really does question someone’s faith on this omnipotent being. They were all believers and there was no salvation. Having to face their demise on a corridor of an old dilapidated hospital. Those kind of things makes you not want to believe and it did made me agree with what John Constantine had to say, “God’s a kid with an ant farm, lady. He’s not planning anything.” If you are the path maker make sure to walk laughing 😂 and smiling😁 and dancing💃 and singing🎶.