It’s easy when things are good to “forget” about Huntingtons. It probably helps that I’d like to avoid
thinking about this as much as possible. It also helps that the symptoms vary in
intensity day to day. So some days it’s
inescapable that Harry is getting worse and others he seems perfectly normal.
If I could remain in the denial space forever—I totally
would, but unfortunately/(fortunately?) I can’t authentically exist in
denial. Once your eyes are opened to the
reality of your situation, you can’t stick your head in the sand because even
in the stand all the thoughts you hope to avoid are crashing around your skull—and
pretty much continue until you are forced to act.
I get why people try so many methods in life to escape their
troubles. I wish that there were pills I
could take to abate the sadness, but life just doesn’t work that way.
I’ve felt distance between my husband and me this month. We had a great anniversary trip in May and
made love almost everyday (well once we left NYC—we were too exhausted to do
much but pass out when we went to bed.) I’d say we have sex at least once a
week. But we haven’t in almost a
month. I’m not sure if he just has a lot
on his mind. Usually I am the one who
initiates and I’ll I’ve wanted to do since the HD conference is get further
away emotionally because it hurts so much.
I don’t love my husband less or am any less attracted to him but I want
to protect myself, my heart, and spirit, even though its too late.
I know it’s too late. And is it really fair to either us to hold
back the depth of emotion that we have for each other, when our time is
limited? There’s a part of me that wants
to love Harry with wild abandon and endless love, not only because I truly feel
that way about him but because our time together is limited. Yet, there’s the other part that wants to protect
myself, because as his health declines I will need to be on top of EVERYTHING—my
own life goals (my degree, my dreams, and interests) and his care and costs for
everything, while handling household bills, cleaning, maintenance, and repair—and
the emotional fallout from his continuous decline for the both of us.
I’m afraid that if I pour all my love into him and he dies
that I won’t have much left for anyone especially myself. When he’s gone, will I survive that? I don’t necessarily mean suicide but more,
will I be able to recover emotionally? Will I be able to be myself?
Or will I just be this husk of a person?
