My Grief and Huntington’s Disease Are Intertwined

I suppose grief comes in all shapes and forms.

For the first 17 years of my life I never had to grieve anyone except my aunt, but even then I was too young to understand fully what was going on.

I always found death confusing. I could not grasp the whole concept of being full of life one second and then just gone the next. But, then it happened to me, only I was not grieving a loved one, I was grieving myself.

In October of 2014 I was diagnosed with Huntington’s disease — a degenerative disease that practically diminishes who you are, your livelihood, your legacy, your memories and the people around you. I remember sitting in the waiting room trying to understand what dying could feel like. I wondered if in the last seconds before you go, wherever you go, if your life really did flash before your eyes. I debated if my life would be a life worth watching as it flickered by.

But that came later, way later. At first, I was prepared to be told that I was fine.

My brother was fine. Healthy even. My brother was fine. Is fine. It was my results paper that looked different, more complicated.

I had to go to a psychologist’s before and after receiving the results because they have to make sure that you can deal with this type of knowledge, knowledge that will uproot your life in a matter of seconds. It is protocol.

Everything was protocol.

I had gone through so much already that knowing whether or not I was deteriorating would just be another notch on my belt. While it seemed simple enough on paper, no amount of counseling could have prepared me for the results.

In a way, you go to the psychologist’s to be able to grieve, but it is not as straight forward as that, not that grief ever is, it is just harder to grieve for yourself when you feel fine. It is not like knowing makes you feel different in a matter of seconds. It is a gradual process. A gradual decline.

My mum and brother were present for the results and watching it take its toll on them was hard. For the first two days of knowing what I was facing, I had to be strong…for them. I could not grieve who I was because I did not realize that I was no longer the same person. I remember listening to my mum cry herself to sleep. I remember walking in on my older brother crying on the balcony so that no one could see him. He kept promising a cure but the doctor had already told us that the cure would be developed for our generation’s children’s children.

They called it survivor’s guilt.

He kept trying to overcompensate for something he had no control over. I think that that is what hurt him the most — he felt helpless as most people going through grief do. By the third day I started to truly understand what all this meant. I was the girl that had her life all planned out: school, college, university, marriage, children, grandchildren, retirement, growing old. When I found out, most of these things became impossible.

I would not grow old, or retire. I would not have children, let alone grandchildren. Marriage like a cruel option to put someone through became unrealistic seeing as marriage meant till the end and my end was a lot sooner than anyone else’s. University was pointless.

So after being that girl, who was I now?

It hit me like a ton of bricks; the unfairness of it all washed over me like grief itself was drowning me in sorrow. I never had to grieve so how could I have been prepared for this?

Days later my friends came over and I realized that one way or another I had to tell them and I just came out and said it. I think what makes it harder is that my symptoms are visible so whenever I forget or lose my balance or shake, the people around me — my friends, my family — they know what it means.

They know that it means I’m one step closer to my departure.

The best advice I got by far was from my Mum. One day she looked at me and she said to me, “Sam, you don’t have much time and it’s not fair. It’s not, but take it as a blessing in disguise. Live your life the way you want to and make it mean something. You will have quality, not quantity and that’s something many people overlook.”

Most of the bad things that have happened to me I wrote about in a book. I always wanted to help people with music, writing, self-help talks, anyway possible but grief was something I could never cover until now. I have not grieved like others but so many people are facing death that I feel like grieving for yourself, for who you once were and for what you will lose, can be relatable and a life lesson all the same.

If I could have given myself any advice before finding out it would have been to stop living life by conforming to the social hierarchy and to stop waiting for something like this to happen in order to live life the way I wanted to live life — fearlessly and confidently.

So now I celebrate my life and the time I do have with my loved ones. We do things that bond us and that we would not usually do in normal circumstances. But these are our normal circumstances now.

I have a bucket-list and I plan on finishing it before I go, or before I become unable to complete it. If I do not manage to finish it, I know that the people I leave behind will. I want to channel their grief into something positive and help them manage it before it hits them completely.

I am lucky enough to have the opportunity to do that, to plan ahead.

I document what I can so that if I ever forget I can remember. I write for my friends and family — without their knowledge — so that they have something that carries my essence. So that when the time comes, they don’t feel like they have completely lost me.

I think the worst thing I was told after receiving my news was that there was nothing that I could do about it and that I just needed to go on like nothing changed. I believe that to be the worst piece of advice you could give anyone.

If someone said that to my loved ones after I died — to go on like nothing ever happened — I would roll over in my grave.

Grief is not something you can bottle up and deal with another day.

It grows; the more you ignore it, the more you feed it. To borrow the words of John Green: “pain demands to be felt.” I believe that in his book, The Fault in Our Stars, he truly captured the essence of losing someone gradually rather than all at once.One day I hope to meet him to thank him for writing that book.

At the time when I read it, I did not know that it would prepare me for something similar. I had no clue that one day I would pick it up and read it as a completely different person from a completely different perspective. I also hope to reach more people and inspire them to live life their way and not to feel ashamed to deal with grief whether it is grief towards themselves or their loved ones.

I also hope to raise awareness and funds towards Huntington’s disease because not enough people know about it.

Ultimately I hope to leave a mark on the world, and as much as it sounds like a cliché, I do hope that I’m able to help someone in the same situation or someone who’s in an entirely situation. I just want to offer a hand. This is how I live through my loss and I hope that I have built an army of grievers that in time of their own loss, my loss, they will come together.

You  can follow Sam on Instagram here. To learn more about Huntington’s Disease visit Huntington’s Disease Society of America. 

Too Damn Young