Grief is like an onion...

 Grief is like an onion...

Just when you think you have peeled back the final layer another one sits beneath it but the onion of grief is full of grace. It gives a chance to process. This is how I have found my journey with Huntington's disease. 

I have been grieving since the day I got my positive result. Grieving so many losses has been a process. I was only 20 years old when I got my results, and 19 years old when I took the test for HD. I had no idea what I was opening the door to when I took the test. But I was adamant - I did not want to grieve. I refused. I believed I could continue life as normal after my result. 

I had no idea that grief was constantly spilling out of my heart wherever I went and no matter how far away I tried to run from it. I could not escape the pain - it was there. 

Suddenly life becomes back to front after the HD diagnosis. Death is what sits in front of you - the end of your life. You see the end - care homes, losing your independence, thinking about your wishes, end-of-life care, memories you wanted to make, and what legacy you want to leave behind. It all swims before you too soon. I was not ready to confront these things. 

Many people have to face such things after terminal diagnoses but the hardest of all is to accept the certainty that this is what it will be unless there is a cure in your lifetime. Every part within me did not want to accept such a diagnosis over my life. The HD diagnosis strips away any remnants of childhood when you test positive. It's gone, as you suddenly have to start thinking about things that are associated with old people, with death, not life. 

HD steals so many things. The losses come one after another, after another as you realize that it leaves no part of your life untouched. You lose your parent who has HD, you lose yourself if you test positive, you lose your ability to have children because there is now a 50/50 chance of passing the disease on, you lose loved ones sometimes because they don't understand about HD, you lose your future, you lose your old-age/plans for retirement, you might lose out on becoming a grandparent. The losses come in waves and we become used to grieving. 

Grief has changed who I am and shaped who I have become. As I have peeled back those layers of the onion with each one I have been transformed into a different person. Things that used to matter to me, do not anymore. I am beginning to find the things that really do matter. 

I will forever be on this journey of grief as with each passing year more layers are peeled away and more losses uncovered. There is still so much hard ahead yet and once again perhaps people who are not in the HD world will not understand this which is why I want to share the journey. I will lose myself to this disease and this is life with Huntington's.