Tuesday, 17 January 2012

My Name Is Jane

Yesterday I made the decision to take three months off of work. If you know me, you know that my job is part of who I am. My best friend jokes that my husband is books and I am numbers (I am an accountant). This is my first day off and I already miss my calculator. Still I wouldn't get up and go back right now if you paid me double time.

As I write this I'm sittng next to my husband's hospital bed. It isn't fun at all, but this is part of being married to a wonderful man who happens to have Huntington's Disease. I don't like this part of his life, but nobody  promised me a rose garden. 

I have accepted it just as I've accepted the fact his music of choice of Electronica and Trance.

Before my engagement my mother told me I should get out of this relationship before it became too serious. I told her it wasn't an option for me. I've never felt this way toward another human being in my life. For a year my mother didn't talk to me. Then she invited Paul to her home for Christmas. After that, she never brought the subject up again.

Until I met Paul, I couldn't put my finger on people who called their spouse their "better half." Now I understand why.

I wouldn't trade my husband for George Clooney, Oscar and all.

Yes, Paul has angry outbursts and often he's irritable.

Yes. I have to drive him around.

Yes, he'll eventually knock household items over from lack of body control.

Yes, I will have to bathe and shave him.

Yes, I will have to take care of his bodily needs some years ahead.

Yes, he will forget my name.

Yes, he will become immobile.

Yes, I will lose him far to early in our lives.

Yes, his chorea movements will pull his muscles until they hurt.

Yes, I wouldn't trade him for the world.

Yes, I love him more than life itself. When you fall in love with someone that has HD you truely understand what that saying means.  It is no longer just a cutsy Facebook status but a feeling deep in your heart.

It has to be.


  1. Jane, I don't think Paul will ever forget your name, there is simply too much love there. Keely never forgot my name, although she did forget many others. You two are so lucky to have found each other. Thank you for sharing your lives with us. Sending much love and hugs.

  2. Thank you for posting, Jane. You are a strong woman and I would love to see you on here more often!
    Your perspective as a caregiver is one that is so valuable to the HD community.

    By the way, I am wondering what your music preferences are??? :)

    Sending prayers to you and Paul.

    1. jane dont worrie every thing will be fine and it is our love and duty towards our partner, you are really a strong woman and i respect you.

  3. Jane, this is so touching, and makes me think about the trials ahead for my husband, who insists he loves me and will stand by my side through this whole tragic illness. People like you and my husband help those of us with HD to have a reason to get up every morning and give it the best we can. All the best to you and Paul and I hope he is home soon. And glad to see you posting! Hope to hear more from you in the future.
    Love Steph