Since I was diagnosed, I’ve found it hard to define my emotions until this evening. In a discussion with Antoinette and Tallulah, something Tallulah said helped me define it.   I had an identity for forty-six years; now that person is gone, replaced by a fraction (in using this term I don’t mean a quarter, I mean one hundredth) of the man I used to be.  Now I struggle to hold onto the memories of the past. Why?  Because a fractious persona creates the stronger more current memories.  The defining voice that once narrated the memories, my voice – now replaced by my augmented voice “Microsoft David American.”  Really!  Who the f*** is David?

This led me to wonder a lot about grief and the experience of loss.   I came across the following,  “People don’t talk about grief, especially outside the context of a recent loss (death). It’s a private experience often hidden in our society, an experience that we are incredibly uncomfortable facing, yet one that every person on earth will eventually have.”

It made me wonder why we don’t get taught to deal with grief in its different forms.  Why are we taught to deal with all other emotions!?  Grief, a taboo! Why? Because most people consider grief related to death, and death for some reason, is an uncomfortable topic.   What about grief unrelated to death?  What about grief in terms of loss?   Although, death will inevitably follow at some point. Society forgets to acknowledge this loss and the grief associated with it, often no different from death.  Miscarriage, Alzheimer’s, dementia, ALS, or loss through trauma? These things impact not only the person affected by the disease, but the immediate family too.  This loss we are not taught to deal with.  I mean, how could we be.   None of us want to predict this grievous loss or role play it, but if we addressed it through death and accepted death as we do life, might we be better prepared for it?

Who am I?  I don’t know!  I’m not who I used to be.   I’ve experienced loss, significant loss.  The past thirty months I’ve lost it all.  Not the loves of my life, not my financial position, worse.  I’ve lost what it meant to be me!  Who am I?  What’s left of me?  Is there anything meaningful left?  No!  At this moment, nothing at all.   What did I lose?  My passions that defined me.   The process of real estate development, running, exercising, scuba diving, eating, intelligent spontaneous conversation, wit, sarcasm, irony, food, my car, the ability to be intimate and most of all what defined me – my voice. What am I?  Quadriplegic, no passions, no voice, no ability to eat or drink, reliant on others to do everything.  Another person!  I don’t like what I see or what I have become.   This fractious persona crept up on me, knowingly.  What did I do, move forward?  I thought accepting the disease would make it easy.  I didn’t realise the loss doesn’t go away; it doesn’t make the pain any less painful!  It doesn’t make memories narrated by David any easier to accept.  I’ve experienced loss without death.  Death will come at some point, but how cruel.  Take everything that defines you, remove it, leave you a shadow of who you were and then you finally die.   How miserable!  So, it turns out I’m an angry fractious quadriplegic waiting for death!   Who can I direct the anger at?  Myself, my brain, my DNA, as it turns out, no one! 

What I’ve realised, it’s not just me experiencing the loss.  My carers, my beautiful girls, Antoinette and Tallulah, experience loss and grief with every stage of the disease.  The loss of warm loving touch, the loss of an intimate spontaneous conversation, the loss of an adventure engaging Pops.  The loss continues every day, no relief, it continues relentlessly.  How do they grieve this loss when the fractious shadow still exists?  Society doesn’t realise that this grief is as intense as grief for a death, it hurts daily, minute by minute. It doesn’t let up, but life continues.   Then finally, death!  The grief everyone understands.  But how are the family meant to deal with grief for the loss of “their person” until then?  The loss is like a dark thunderous sky, it covers everything!  CS Lewis defined what loss feels like in a simple way, “It doesn’t really matter whether you grip the arms of the dentist’s chair or let your hands lie in your lap. The drill drills on.”  Only it comes in waves, you experience a joyous moment, relief from the drill, momentarily it feels normal.  Then the high-pitched whining begins again.  Does it ever stop?

For in grief nothing ‘stays put.’ One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?”  My loss I know is a spiral, ending in death.   I know the loss for my beautiful girls will continue round and round!   Like waves against a shoreline, some days fierce, intensely battering the shore!  Some days calm and peaceful and other days with a ferocious rip tide that feels like it’s sucking you in and it’s just about to drown you, then spontaneously it ends, and calm beautiful blue water caresses the shoreline again.   The memories happy, the day joyous.  At some point I pray that the ferocious waves disappear, becoming a peaceful azure lagoon filled with memories, caressing the shoreline. 

Until then we experience the loss and the grief day by day.   Oh yes, there is more to lose, what ever facial expression I have left, the smile, the raising of my eyebrows.  Soon it will all be gone!  Unable to show my anger towards this disease, unable to punch a wall, kick the door or let out the spine-chilling scream of pain!   I suppose I could cry and let the tears of sadness and anger roll down my face, until someone wipes them dry.  I could just move forward; move forward with the hand I’ve been dealt.  One thing is certain, I know that the thing I want is exactly the thing I can never get back. The old life, the jokes, the laughter, the arguments, the Intimacy, the work, the burgers and beers, even the heart-breaking common place moments.  I’ll follow the spiral, downwards.  Perhaps the best is knowing the least where the spiral ends.  Trying to make the most of the new memories, even if narrated by Microsoft David, fractious quadriplegic!

However, it’s not me I’m concerned about.  My beautiful girls, going round and round.  Where do we take them, how do we cope with their continuing loss?  “And grief still feels like fear. Perhaps, more strictly, like suspense. Or like waiting; just hanging about waiting for something to happen. It gives life a permanently provisional feeling.”

 #ChallengeALSDXB