Physically I’ve morphed into a rag doll! At least it feels that way. No control over muscular function in any limb and neck. I know anatomically the head and neck are not considered a limb! I’m going to say it is, it’s connected where C7 connects to T1, although not a major joint it still behaves like one. Allowing the movement of the neck And head. So, no control over five limbs and one appendage! Well, I have some control of the appendage, depending on thought, but that’s not muscular! I’ve lost the ability to urinate, thanks to a supra pubic catheter which neatly collects urine in a bag! I can’t call it a mutation as I have no genetic markers for ALS! So, I suppose I’m thinking of it as a metamorphosis, my wheelchair the hard-outer shell of the chrysalis! My body, however, is not miraculously going to change and finally wriggle away like a beautiful butterfly, although I wish it would. The best it gets, is an incomplete metamorphosis from a strapping, virile, intelligent young man into a rag doll with senses and a brain!   I can’t even be referred to as Chucky, as he was rigid and had motion! No, I’m a rag doll with accessories, a hospital bed, a motorized wheelchair, a commode, a supra pubic catheter, a ventilator with a double patient circuit, a tracheostomy, a PEG for feeding and a suction machine to remove all that excess saliva!

It doesn’t sound like a cuddly rag doll, more like Chucky returning from a role in Platoon!

Some biologists see the human life as a kind of metamorphosis, juvenile to adult, adult to octogenarian. They believe the change in hormones to be like the phases of metamorphosis. I’m not a biologist, but to me, it would seem like an incomplete metamorphosis, sans molting of an exoskeleton to emerge slowly into adult form. We go through change and pain along the way to evolve into the adult form of ourselves – juvenile, adult and octogenarian! Now, only halfway through my process towards octogenarian, my metamorphosis has taken a detour. Why? I don’t know – doctors haven’t figured out either! It’s taken forty-five years to morph into the being I thought I was comfortable with. Now, in only thirty-three months from diagnosis, I’ve morphed into a rag doll with an exoskeleton type undercarriage. Either in the form of my hospital bed, or my Quantum I-Level wheelchair. How does this change so drastically?

It all started about six months prior to diagnosis. I started to notice a more sinister side of my self-emerge. I know all developers need a narcissistic side to them. This was different. It was pure pleasure telling consultants their solutions didn’t work, with a smirk across my face that made it even more obvious I thought they were incapable. This was not me. Usually polite, pragmatic and diplomatic, I assumed it was workload that was finally making it very difficult to deal with mediocrity! Unfortunately, this behavior followed me home, smirking and grinning at the most inappropriate times. It resulted in an unexplained anger within the family! Little did I know that the brain had started the process of detoured morphosis. Pseudobulbar had already started! Emotional incontinence, uncontrolled laughter or crying caused as a secondary effect of a neuro degenerative disease. It started and never left, thankfully within eight months I managed to get it controlled, not before it made for some interesting situations. Strangely enough this also made me stumble, slur and repeat sections of sentences. This made me seem even more condescending!

Next was the loss of a fine motor skill, walking through construction sites in the early summer morning is not quite as much fun if you are unable to drink water. I found myself unable to wrap my thumb around the bottle cap and exert enough pressure to open it; not a problem I have two hands, try the left! All fine! Must just be muscle fatigue from early morning workout. Not. a few days later sitting down to lunch with Antoinette and Tallulah, I choked on and dropped a passion fruit drink, right hand the culprit again, we thought nothing of it. Clumsy Pops! And my struggle to open plastic water bottles continued. Right hand to left hand to teeth – when all else fails revert to Neanderthal methods. Only I quickly realized that the caps may not be as sanitary as I had hoped! By the time of my diagnosis I had to ask my colleagues to open bottles for me. The next sign was my morning cross training regime. I was starting to build a good rhythm, pushups, squats, rope jumps, sprints and sit ups – five sets for time. I was getting stronger, almost ready for marathon training again. Until one fateful morning I fell over doing squats and couldn’t complete pushups. From then on it progressed to more and more half pushups – something was not right! My last day of cross training as I had known it was the twenty seventh of December, 2016. Ten days after confirmation of diagnosis. I then tried a private trainer to maintain basic movement, squatting to be able to sit on a toilet bowel without falling over. The simple movement of bending over to pick up a basketball lead to me crashing into a dumbbell rack ribs first. The act of throwing and catching the same ball, while standing upright lead to me falling like a large red wood tree being felled. Stiff legs, straight back, head crashing into floor before the remainder of my rigid body followed, narrowly missing the sharp metal corners of rowing machine. The crack of my skull sent my glasses flying and left me dazed for a few a minutes.

The most obvious sign my morphosis was taking a different path was the fasciculation of major muscles. It felt as though the muscle had little beasties living inside of them, no matter what I did I couldn’t control it. Asleep in the early hours of the morning I would awake from a death like stiffness in all my limbs. All the muscles fasciculating and contracting into a rigid corpse like pose, this was the strangest feeling. The first doctor I saw nonchalantly quipped “why don’t you just wake yourself up?” By the time I was referred to the Neuro Muscular specialist my tongue had the same beasties living parasitically in my tongue, affecting my speech even more.

From December eighteenth Two thousand sixteen, the confirmation of diagnosis, my body has continued its incomplete metamorphosis. All the time my exoskeleton molting, from a single cane, to a double cane, to a Walker rollator, to a manual wheelchair, to my final 180kg black metal automated Quantum I-level Exoskeleton. Unfortunately, the morphosis did not stop there. As my brain continues to be overrun by glutamate or a retrovirus the motor cortex is shutting down. No longer able to defend the onslaught I’m now confined to a ventilator, most of the day it’s me breathing with pressure support. Where to next? Your guess is as good as mine. If only we could be like the immortal jellyfish, when it senses danger it produces a protein which returns it to the polyp or juvenile state, only then to start the metamorphosis process again. The only problem is the adult size of the Immortal Jellyfish is seven millimeters. Can you imagine if we returned to embryos, that’s pretty sci-fi! The embryo will need to be brought to term outside a body, there’s a movie to be made somewhere! I know The Curious Case of Benjamin Button, where from octogenarian the process reverses to juvenile. Either way it would be an amazing process of evolution to repair malfunctions in our creation.   I suppose we need to go all the way back to embryo though, isn’t that food for thought? Do we drop limbs and appendages until there’s a sack a pupa like structure that regenerates in a matter of days or months? What this will do to society as we know it? Who knows, perhaps balance the human population, there would need to be a group of nurtures instead of parents? Big Pharma would not be required, cures for dreaded diseases would no longer be required, and death?

Well, death would still be there, loss would still hurt, grieving the loss would still be and would be no less painful. But living with a terminal illness where you faded into obscurity will no longer be required. Isn’t that worth considering? Could an incomplete Metamorphosis have been the best answer to humanity’s terminal illness?

#ChallengeALSDXB

 

 

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