Life doesn’t Suck. Living with ALS SUCKS.
One year, that’s how long I’ve been blogging. One year, that’s how long I’ve been experiencing my body decaying from the inside out. Well, to be more precise, I have been living with ALS for Twenty-one months. A year ago, I started Filipendulous. Thinking that it would be my soul dangling on an ever-weakening thread. That spiritually I would be tested with every onset of a different symptom or further regression of the body. What I have discovered is that the soul is resilient, in touch with the Universe, it is instinctively aware of the energy surrounding it, living through it. With love and happiness, it gains strength to carry on. The body is however resilient only to a point. Breaking point!

Living with ALS really sucks. moving ever closer to the breaking point. Every day, more aware of your own mortality. It’ not an obsession! It’s not my focus in life. It is however a stark reality! Every passing day a random culling of motor neurons, every day less voluntary muscle movement possible. The result known, the involuntary termination of the diaphragm movement, the termination of breath! One of three essential organ functions to sustain life, lung function, heart function and brain function. Mortality is not unique, it’s the common denominator for all living organisms. Unfortunately, ALS, as with any other terminal illness gives you an insight to the end. The precise timing though still unknown. Life, our best friend until the end. Like all good friendships, to be nourished, cherished and enjoyed until the end.   What we learn growing up is that we consist of body, mind and soul. What no one bothers to elaborate (unless you are studying biology, medicine or expressing an interest), we are a biochemical process controlled by genetic coding. Running on auto pilot. Very few of us question how we come to be or how we exist at all, physiologically, not spiritually or religiously. We take it for granted that we are the result of reproduction. Upon conception we start the genetic process. We start dividing, replicating, growing, mutating and programming cells. All the while oblivious to how this process is controlled. Genetic coding running on auto pilot.

If you believe scientist the genetic coding we are born with and which determines how we develop physically, mentally and to a degree even spiritually, evolved over millions of years. Our genome with a DNA super computer with machine learning capabilities involved in this process of evolution. To live, our cells need to repeat this process millions of times over every day we are alive. The only problem, at least half of the genomes found within the bodies billions of cells consist of junk, molecular parasites and retro-viruses. Unfortunately, our bodies, rather than recognizing and isolating the genetic nonsense continues to replicate autonomously. This junk can disrupt our life in a significant way. No one knows if the junk is responsible for ALS, they think there could perhaps be a retro-virus responsible for triggering ALS. It could be several other genes. No one is sure. No one has a cure for it either. I suppose it really makes no difference. Probably better that we don’t know every aspect of Life’s process, there are enough hypochondriacs self-diagnosing on the Internet already in this world. There’s nothing, on an individual level, that we can do about it. We can’t control the process of life. We attempt to influence it in many ways, we design training Programs, diets, growth hormones, plastic surgery, minerals and vitamins. Everyone tries something at some point to make us healthier, stronger, younger or prettier. To influence life’s natural selection process for better or for worst.

So, living with ALS really sucks! Not like putting in all the effort training for a marathon and then injuring yourself days before the marathon sucks. Not like a bad haircut, receding hairline or ten pounds overweight sucks. It sucks like willing your brain and body to stop producing Glutamate to toxic levels that obliterate your motor neurons! It sucks like a year of aggressive physiotherapy, three days a week, which by now would see me doing the splits Between two chairs. Instead I need Sancho and Jonathan to support my eighty-kilogram frame, with all their strength, to stumble three meters in fifteen minutes with my shorts and underwear wedged so high up, if I still had a singing voice I would sound like Sarah Brightman. It sucks knowing it’s unlikely I’ll get to celebrate Tallulah’s sweet sixteen or her twenty first birthday or walking her down the Isle on her wedding day. It sucks knowing I won’t get to grow old with Antoinette, exploring many of the magnificent destinations in this world. It sucks not being able to scuba dive and share the experience with Tallulah. It sucks not being able to walk through a construction site and experience the redolence of each stage of the construction of process. It sucks knowing you were fit and healthy one day and the next having to experience a steady decline, decaying on the inside while all your cognitive functions remain as sharp as before. Nothing sucks more though than watching your loved ones struggle more every day to support and take care of you! From being the bedrock, the family is built on to becoming the slippery clay the family rests on, displacing more every day, as more stresses are exerted on the family.

The most amazing thing though, if you have a sound mind, the mind and Soul accept the onslaught and you find ways to nourish and cherish Life. Together the family experience the external changes and learn new ways to adapt Life changes forever but, memories are made, and lessons learnt. Life has given me an opportunity to imagine, in some way, what the future may hold for Antoinette and Tallulah. It’s like sketching an image from a camera obscura, the pin hole my imagination, their future the perfect Image upside down and inverted. As long as the light shines bright I will be able to add more details. My eyes to the keyboard recording my thoughts, in some way I will continue to be a small part of their Life in future. As Shakespeare said “Let me embrace thee, sour adversity, for wise men say it is the wisest course.”

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