My name is Jess and I lost my incredible dad to Motor Neurone Disease on the 6th of May 2020. My dad’s name was Neil and he was the kindest, loving man I have ever known. He fought this incredible cruel disease with such grace even though in one short year it took so much from him. I miss him more than words could ever convey and I would give anything to be able to walk into my family home and see him sat in his armchair with that smile I loved so much just once more.
I’m still figuring out how I want people to support me through my grief. Some days the pleasantries and ignoring the elephant in the room are all I can handle and that the last thing I want to do is talk about it. And some days all I want is to do is cry to someone for hours about the overwhelming pain of knowing I can never see him again.
It’s the small things. The mug I bought him for Christmas, or a song on the radio we used to sing, or the contact number still in my phone knowing there is nobody at the other end. It’s the small things that bring the deepest of grief to the surface. The big moments and days are equally as difficult: birthdays, Christmas, my parents’ anniversary. However, for the big things the grief is easier to anticipate, I can plan for those days to be difficult. It’s being blindsided by the small things that knock you off your feet.
I wake up and forget and for a short few seconds the world is ok. I forget that he is no longer on the end of the phone to moan to when I have a bad day. He’s not there to give me advice about big decisions I am making in my life. Remembering every morning is even more painful than the day we said goodbye.
I watched my dad deteriorate so quickly in the space of a year since his diagnosis. I ache to hear his voice once more and I feel endless guilt that I can’t remember our exact last conversation before he could only speak through a machine. Or our last meal we ate together before he solely relied on being fed through a PEG. I grieve how in the last year of my dad’s life this disease took so much of my dad away before he was even gone.
Some people will never truly understand the trauma and grief that accompanies you in your day-to-day life. People may think you have changed, become more closed off, less fun. Grief changes you as a person and shapes your life in ways you can never predict. You are still learning to find you way in a new world without them in it.
