It's like a waiting room...

It's a strange place being premanifest for a disease. 

You are not yet like the other symptomatic sufferers of HD but you are also no longer in the place of unknowing like those who are living at risk for HD. You are in a waiting room. Waiting for you to be next. Nothing has happened yet but you are constantly either preparing or grieving for what will.

But to be honest I don't know what I'm waiting for. I know the symptoms of HD and I have seen them in my father but I don't know what it will be like for me. What HD Polly will look like. I don't know what it will feel like or whether I will even realize. 

You are constantly watching your parent's journey with HD, how it affects them, how they cope, how it manifests in them, and how other people treat them yet knowing all the while that yours is also to come. You are waiting. You are watching. You are preparing. 

When I was in my place of denial in my twenties I used to think that this was morbid and completely unnecessary. My view was that life could just carry on like normal after the diagnosis and that there would be absolutely no reason to think about it until the last minute. Almost like having an exam put before you and believing that you can do it all without even bothering to revise a single thing. In my mind, I did not need to 'know' anything else after my diagnosis. I'll face it when it comes was my answer. But it does not work like that. 

My focus had been entirely on breaking out of the waiting room. To me, it was like a prison that I desperately needed to escape. I knew it was all a mistake and I had been put there by error. But what if it was never about escaping the waiting room but embracing it? It's not about being in the waiting room but its about what you do while you are in it. I wasted all my time and energy trying to break out. I was ashamed I was trapped in this awful place. I wanted to be free. 

What if being premanifest is actually a gift to you? You have been given time. Time to embrace this life even more fully because of HD. It's so hard to reach this place in the journey after you have been diagnosed but bit by bit I have begun to see a new way ahead. There is so much hard stuff still yet ahead for me but even more so now I can embrace it. I can open my arms wide to it. It is radical and it will probably be easily misunderstood. 

This year, on my eleventh anniversary since my HD diagnosis I began this new way of being. I decided to celebrate this day. I even bought a cake with candles. I said out loud the things that I was grateful for and that if I had not had HD brought into my life, then these things would never have occurred for me. It felt surreal to be celebrating my diagnosis but it was the first time that I finally did not slip into a deep depression afterward where I would ruminate on dark thoughts for days. 

On my 11th HD anniversary in my PJS!

There are still hard things to do in the waiting room. Decisions that need to be made, plans to prepare, memories to make, and dreams to be fulfilled. Some days are still full of triggers. Some places still cannot yet be crossed into - it's not ready for me yet. 

Some days I look in the mirror and see my future self and it becomes tempting to fall back into that seemingly blissful denial where all the troubles melt away but denial will only lead to death. It's a dead-end and a waste of time. This is life in the waiting room of HD.