The Lonely Road

                                         

Being broken by an event involves you picking up the pieces and putting yourself back together. However the ‘back together’ version isn’t the same, physically it looks the same but it requires change and growth. The strains of the world push against the cracks and the new version emerges stronger like a phoenix rising from the ashes. The reality is different; however the choice remains yours.

Whilst still together, my husband and I have embarked upon the loneliest of roads. Huntington’s is an absolute bitch for that. Neither of us wish to be on it, live it or experience it, but here we are as promised in our wedded vows right here living out our own versions of this horrific degenerative disease. Where anticipatory grief pulls away all your hope that you try to grab hold of because that bastard of a gene just keeps taking and taking with no mercy.

The lonely road refers to our peers moving forward, striving, progressing, moving homes, booking their holidays, planning living. We live in neither a forward or backward state, dealing with the daily toll of deterioration like a game of Russian roulette.

It slowly eats away like a cancer replacing the good memories of joy and comfort in being still in life, with loss and heavy burdens which change daily, day after day with no end in sight. The end as terrifying as the present, and the past holds a mourning of the loss.

Atomically I am the same, the physical and mental toll just catches up with you. We are both young, I need to work to keep our home going financially. I need to be a present mum emotionally there, physically there as I do as a wife and carer.  The HD takes the broken pieces that you have tried so hard to put back together and out of the blue smashes those fragile repairs you made further into a million pieces. Like an ever changing rubix cube or china pot held together with potters glue.

How will my happy ever after look? My grief and love, my darling husband, I can’t save you.  Do I run and save myself?

In my experience running saves no one, not me not him, not us. We just aren’t coming out unscathed. No distance will save us now.  Love is like that, isn’t it? As his memories fade and he physically degenerates, I keep a piece of my heart alive with the memories we made once upon a time. I will stay because I remember the person you made me by believing in me, teaching me forgiveness and love and kindness. Teaching me to be the person I wanted to be and that I am because of you.

This is the reason I stay because when you don’t remember I will forever and so will our girl, as we are forced to enter into this unforgiving world without you.  This is why HD is an infinitively lonely road.

Dedicated to my beautiful husband, Mr W, how did I ever get just so lucky to be loved so much by you.  I just hope I am enough.

Photo in public domain (Larisa Koshkina): https://www.publicdomainpictures.net/en/view-image.php?image=57458&picture=road