Hi, I am sorry if this post is not in the right category but it seems the best fit.
My late partner’s farther lost his life aged 57 after suffering 20 years with Huntington’s Disease. I never actually got to meet him when he was alive as Blaise (who was Italian, although named after a Frenchman his dad idolised) and I had only started seeing each other a month before he died, I did go with Blaise to the funeral in Italy, although I had no idea he would be the love of my life at that point.
He was diagnosed at 37, but he had symptoms for a few years prior. He was a mathematician, a great one at that apparently, he managed to teach for many years after he was diagnosed, his mind was not effected until towards the end I am told, although he was prone to severe mood swings, he remained shape as a whip.
Blaise followed in his footsteps and became a maths teacher as well, although reluctantly at first his mom says, he wanted to be a pro wrestler until his mid teens, but at just 5’5, I don’t think that was a real possibility.
It was at this point his life first fell apart, firstly his father’s diagnosis and then the difficulty of coming to terms with his sexuality. I know he like most children of HD sufferers worried for their own health as well as his father’s, a fear he sustained for the the rest of his life, although he never knew if he carried the gene mutation.
It was at 14 or 15 he turned to alcohol, it destroyed him for two years before he regained some control, and although he still maintained his high academic life somehow, his physical health was in deep decline. He would go many months sober, but then he always ended up back there again through his life.
He still managed to get through university, ultimately earning his master’s degree making his father prouder than any of his own lofty achievements, I struggled academically no matter how hard I tried, yet for Blaise it was almost effortless, I turned to sport.
He moved to the UK eight years ago, with the dream of working in London, he taught himself English just so he could read English literature, god knows how he ended up with a broken old ex-motorbike racer like me (nine years older). It was then he fell in love with British comedy, especially the Cambridge Footlights bunch, and specifically Stephen Fry… his idol.
Things didn’t work out in London, but he did get a university job teaching in Staffordshire, where 4 years later met me, a mature student taking a degree in Classical Studies. He was a handsome - if short - Italian, interested in literature and art, although hated history, too much uncertainty.
Then aged 31 his world fell apart again when his father died, remarkably he remained relatively sober during this time, he would get drunk sure, but nothing to suggest he had a problem, but after lockdown when things started returning to normal and we were both back at uni, it started getting out of hand, he would get home and immediately would start knocking back whiskey.
In mid 2024, he started working part time in Milan, filling in for an old friend of his dad’s who had been diagnosed with cancer, when he was recovering from treatment, Blaise would fly off and take his lectures, 2 or 3 days a fortnight alone in hotel rooms didn’t help with the drinking, he was terrified of being alone.
It around the same time he had developed a tic in his right hand, I put it down to alcohol withdrawal, but I knew he was worried, then he developed one in his jaw, his moods were more erratic and he would get confused and frustrated, but again I put it down to withdrawal symptoms.
So in late November, when out of the blue he was offered the job full time and that he had accepted it, I was mortified, I was halfway through the third year of my degree. We always wanted to move to Italy at some point, much nearer his mom in Certaldo, Florence, certainly not Milan in the north and not yet.
Anyway, just two and a half weeks later he started his new life in Milan, it was chaos. We agreed, or should I say he did, that I would join him when I finished my degree. I am not going to lie, it was tense between us. Whenever we spoke it would end in an argument, and the worry, stress and his loneliness became two much.
On the 27th of December he ended his life, the next morning his mother, who had come up to spend a few days earlier for Christmas found him, he is estimated to have died about 7 to 9 hours previous. After a very brief inquest, his cause of death I was listed as an unintentional overdose.
However, I knew him, I believe he did not want to put me through what his mother went through with his father, he did not want her to go through it again with him. It was like he was pushing me away, his mother and I both agree it was deliberate, however much we would prefer otherwise.
I know I have gone on and on already, but I want people to know about him, he was the life and soul of a party, a smiley, chatty entertainer with immense wit and intelligence, but people forget so quick and I can’t let that happen, I won’t.
My knowledge of HD is third hand, I know the basics, the wiki info, but I don’t know what it would be like to live with, how could I without going through it myself. I would like to believe I would go through anything for him, but the loss I am feeling now feels unparalleled. The pain I see his mother in seems unimaginable to surpass.
I feel so much anger, not just at life but at him, for not allowing me to decide, for putting his mother and I in this hell we are going through. If you are going through living with Huntington’s or have lived with someone with it or indeed lost someone to it, I ask, please help me to understand, am I right to be so angry, should I be grateful he doesn’t have to go through it.
I understand it’s an impossible question to answer and I don’t know what answer I would want anyway but help me understand better, please.
Again I am so sorry for the long and tiresome babble, I lack the eloquence of my dear, dear Blaise. Thank you so much if you have got through my rambling.
Love and hugs to all those in the hell we find ourselves in.