They say the worst part of HD is watching your loved one deteriorate physically, uncontrollable chorea, poor coordination, having to help with everyday tasks, the feeding, the incontinence, the eventual poor swallow or mentally the violent mood swings and emotional liability that comes along with such a dire diagnosis. We are lucky - at present Mr W despite some chorea movements and some facial twitching looks to the outside world as really quite alright. Of course no one really sees or understands the constant fatigue he goes through, the constant isolation this causes for him as he sits alone at work at lunch because he just can’t keep up. He is still able to work, albeit finding two days extremely taxing but he’s committed to make it work for normality and with the hope of off label drug trailing on the horizon due to start in March we are just holding out for hope for a better future. Please God let this be our turn for a stroke of good fortune in health.
Today I’m not going to talk to you about any of that because what the rule books don’t tell you is how to manage the missing. It is very rare that I get to experience the witty chat I fell in love with, the life and soul of the conversation as he once was.
The conversations for a while now have become one way. Whilst when asked he can respond well one to one, Mr W never seems to want to generate any conversation and I know now how hard he finds this. When bustling home from a busy day at work, I just seem to talk at him with an array of challenges I faced during the day, all the things I want to talk about or just laugh about or simply ideas I want to bounce off, an achievement or a cock up... It’s all greeted with the ‘oh I see’ and ‘OK’ answers. What I do get is the constant repeat of questions, "How was your day? Are you ok? What are we having for tea?" And usually the same responses day after day after day, it’s kind of like ground hog day. My daughter and my husband argue constantly. He doesn’t seem to listen - his brain runs away on a one way train of thought and they clash, as I clash with him because it is SO frustrating. I can see his brain isn’t quick enough to keep up with situations, unfolding in constant mayhem of arguments between the pair of them. Raising a strong willed 7 year old was never going to be easy. It requires the art of negotiation and skill in picking those battles like a United Nations peace keeper crossing a field of hidden mines which he insists he’s managing but clearly he isn’t. I am now a referee in their nightly "he said she said" arguments. For me the silence is deafening and the bit I will never get over losing in our marriage. This is the bit that breaks a marriage, because all the physical difficulties can be overcome, worked around and the challenges can be visibly seen and understood. No one can truly really understand the impact of living like this 24/7 and I know 100% for sure at 39.5 years I sure as hell really don’t want to! So I guess this is it for me for the rest of my life then??
So tonight I’m sending out an appeal....
The Missing - last seen approx 1 year ago, 6ft, tall dark and handsome, really funny in his ways and always used to keep me on my toes. The man that mended my broken heart and made me laugh and laugh. The man who used to watch odd little documentaries with me. We used to sit up for hours and hours and chat about. The man who used to sit up and binge watch box sets until we couldn’t push it anymore at 3am because we knew we had to get to bed because our girl would be up in 3 hours.... To the man who used to do a million things in a day and just wore me out watching, it was so fun... To the man who used to bring me a cuppa tea and toast in bed every morning before he went to work... To the man who did all those things... If found please return because at 39.5 years of age your wife really needs you. You are loved and very much missed. Please come back..
This post is dedicated to the bravest man I used to know, my lovely hubby. I will love you always.