The New Normal

 This was written in October 2021 - only just got around to publishing it. 

    Recent events since Covid have left me somewhat ‘frazzled.’ My community nursing team is on its knees across the city barely managing to pass what seems like a constant beep test on a daily basis. The accumulation of events over the last 18 months have inevitably led me to somewhat take my eye off the ball. Long hours with early starts and late finishes have resulted in several small ailments which have led to an accumulator effect on my physical and mental health soI have taken some time to stop for a while

    When your full attention has been dragged along  by work through Covid,  other aspects of your life begin to slip away and stopping has made me reframe my mind somewhat. Within this the reality of my old  ‘normal’ has faded and evolved into the next step in the change of events that presents itself during the HD process.

    How did I get to this other new normal? How did I miss the old normal changing? Have I been neglectful as a wife? Or as a mother? Whilst propping up a severely understaffed NHS? Or is my new normal me buckling from an overfull life circumstance? I pray that this is the latter because after a while you and your soul just become so very depleted. The fuel tank is running on empty and the trick is to stop and refuel before the overheated engine explodes and you are left gathering pieces of yourself which have been splattered all across the motorway fast lane!

    So how does my new normal look and feel? Well I guess I’m trying to figure this out.  I have been told to stop and refuel that bank of me, which I have again lost along the way of the last 18 months. It’s like being lost in the deepest of oceans looking for familiarity in a deep dark sea knowing that the ocean is so vast and patiently waiting to end up on a warm familiar shore paradise, an impossible dream that can bring comfort and hope to a broken soul. When your new normal changes irreversibly and so unpredictably over and over again, you live in a perpetual cycle of ongoing grief.  These creep up on you in different ways on different days, simmering in the shadows catching you when the ebb of light changes.

    Today I’m taking a breath, a golden quiet moment in a café to gather my thoughts, when a young mum is sat with her beautiful baby girl, chatting away to me. She looks so tired, but beneath the fatigue of a new-born shining from her like a golden beam of light she is filled with the joy of new life and hope and love. I remember feeling that before the tide of the ocean turned. There isn’t a day I don’t mourn that feeling of anticipatory hope that my husband’s clinical trial had brought us before it was taken away again.

    It is in this progression of change of love and of hope that the fundamental core issues appear. It is why living with an ever-changing degenerative condition is the place where perpetual grief lives and grows and it is just so hard. The knowledge that the days ahead will get darker with no hope, the days will change just as you find an equilibrium of new normal and the more the change the less the world understands and the comfort of familiarity forever fades.

    I am not grateful for HD or what it has done to all of our lives, not one bit. However the process of adopting compassion and teaching my beautiful husband and daughter to live each day like our life is on the line is somehow maybe changing me into the person I maybe should have always just been. Because of this I am living in gratitude and feel humble for the life I live for it is full of love and support. This life has no room for the fair weather friends.

    HD means my love is drifting away off into the darkest of deepest of oceans and I can’t save or protect him from what is coming. The fears we both face become inevitable. I’m powerless to change or rescue with reassurance the fear and fright that I see him fighting in his eyes each day. Love. Love, compassion and kindness are the only medicine and weapon I have to protect us and gain inner peace in his depleting world.

    Maybe this is why I became a nurse. The task is rarely the treatment. The gift is within the moments where you can just hold that inner pain and suffering both physically and mentally for a person. In life this is just such a precious gift, I want my daughter to learn. It’s about just being there unquestionably with the power of just listening and physically being. This is where the power in life lies. Its cost is nothing and its power is everything.

    You find these special gifts in people; they are rarely in the people you expect.  My compassion is therefore extended to those who aren’t able to see such value as for them their path may be long and dark or filled with anger, bitterness, vanity or fear. The people who need to schedule you in to prove their worth or to tick that box.  It truly amazes me how many people just don’t get it!

    I am thankful in many ways where this life path has led me, I am thankful I can do this for others and to the others who just do this for me because despite all this I am so very lucky. 

    This post is dedicated to my dear friend Bhav who challenges me to try to apply this method to myself… this bit I’m working on, not always successfully!  J Thank you sweetheart for keeping me on track when I’m not sure I always know the way x