This week I was reminded of the ‘iceberg’ analogy. You know, the one Freud used to describe the complexity of the mind, or the one more commonly used by business today to reflect effort versus success – where 2/3rds of the iceberg is below the water (representing effort), and it’s only the top 1/3rd (representing success) that is visible above the water line.  Below the water line it’s blood, sweat and tears. The graft is long, hard and endless – it is how we define everyday life.  It’s constant battle mode; fighting the onset of new symptoms, the endless flurry of doctor appointments, the continual struggle with the medical insurance, negotiating traffic, managing homework and maintaining a household – and for what?  Our 1/3rd of Success?  Defined as a balanced life?  Quality of life?  Is 1/3rd really enough?

The first 9 months living with ALS we have been struggling below the water line trying to figure out how we were going to live life with ALS. More importantly, how we were going to deal with the impending financial and emotional ALS Armageddon that could reduce our beautiful iceberg to pack ice.  Stephen Fry put it quite simply, “You’ve got to work your bloody bollocks off” and that is what we do, with grit and determination.  So it was with a sigh of relief, when finally on October 4th 2017, we were able to come up for air and catch a glimpse of the shimmering white peak.  We’d managed to secure financial support for the new FDA approved medication, Edaravone, and received approval for the purchase of an EPIOC wheelchair.  But we know that we cannot stop and enjoy this success for to long, we need to get back to fighting. Fighting like Tigers, with dignity and pride to achieve more success, a better quality of life for those living with ALS, those caring for people with it, and finally, for those without ALS.  Through work and through Love.

What has become evident during this constant battle, is not how challenging life is, (it should be, or we’d simply sit back and watch the iceberg melt, never learning,) but how important our values are.  It is this that is at the very core of the iceberg – above and below the water line. Always providing the stability and structural integrity during the hard graft of everyday life, and when we achieve success in what ever form it may be.  And so we shed the blood sweat and tears with love, empathy, passion. Authenticity, integrity and honesty, day in day out……..simply working our bloody bollocks off for work, love and life.

 

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