HD and the art of complaining

For several years after I tested positive for HD, I complained to anyone who would listen. “I am not going to be able to think. I am not going to be able to control my movements or speech.”

Essentially, the feedback I got was that it wasn’t happening all that much then, so I might as well not think about it and focus on enjoying every day.

And I have tried that, although it has mostly felt like I was playing a board game on the railroad tracks.

I have captured happy moments like fireflies in a jar and stared at them until they died.

Now the stuff I was worried about happening is starting to happen, and I have used up my complaining allotment. Now what I get, when I share what is going on with me, is that it is not HD and that it happens to everybody. Every time someone says that I want to vomit.

My situation is different now. I can feel the tracks rumbling beneath me and am being told to sit tight.

The thing that perplexes me the most is that, with HD, any sort of denial is perceived as coping. Pretending it is not happening means that you are dealing with it bravely.

I don’t know of many people with cancer who have thrived by denying it, who have been comforted by loved ones and professionals telling them it is not real or that it happens to a lot of other people and, therefore, is not anything to worry about.

My HD progression has increased my defiance with regards to anything I cannot comprehend. I am sick of feeling alone and invalidated.

And in the midst of this cognitive dissonance, I was asked to write something uplifting about having HD. That really pissed me off, to be honest, because I am in the middle of perceiving that my complaints are not being heard. But it was for a good cause and I really like the people who asked me. So this is what I made up:

“Routines are important and, living with HD, I hold my routines as treasures. Eating a healthy diet, walking with my husband, and even sitting covered with my favorite blanket are all simple things but, put together, they form a foundation for a life of substance. I am grateful to have some good routines in place and, when the time is right, I can plan and savor new, positive experiences. And if faced with stress, I have my routines to fall back on, to uplift me. Having healthy routines is like having a huge feather bed that I can enjoy landing on and that is always there to catch me!”

But what I really meant was this:

“I am incapable of achieving anything anymore. All I can maintain are simplistic routines, and even that is hard. I can’t remember processes, figure out procedures or follow written instructions. There are several things that I did last year about this time, like put up the Christmas tree and self-publish the book, that I can’t seem to do now. I stumble when I walk and sometimes my legs just don’t move when I tell them to. The train is coming down the track and all the fireflies are desiccated in the bottom of the jar. Someone please understand that this shit is happening and I do not know how to cope with it. All I can do is sit, covered in my blanket (which is an amazingly awesome blanket by the way) and wait.”

So many of my friends are liking on Facebook the first passage I wrote, which was a lie. They are thanking me for imparting wisdom that I lack.

The truth is that Pollyanna has left the building and I don’t know if she can come back.

But none of this is anybody’s fault.

And how I become acquainted with my fate going forward is my own responsibility.

I just can’t guarantee that I am responsible enough or intelligent enough to deal with it by ignoring how much it hurts.

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11 thoughts on “HD and the art of complaining

  1. Sis sis
    What you say is absolutely true! Before I began work with hospice I was clueless about validating ones state of being. When
    My father used to express his concern for his failing memory I thought I was bonding with him when I would say things like” I know what you mean” or “I feel that way too”…..
    When I began my journey with Sarah House Hospice I learned quickly I was actually invalidating that persons reality and state of being!
    We all need the reminder that we encompass many aspects …. our physical and spiritual selves, health, abilities and most important self observations and perceptions !
    I’m here always ” to lift you up “……
    But never ever to lie to you or shield you from your truth …..
    As always …. I cherish it when you share yourself and your thoughts.
    I will always love you deeply and completely…
    Sister sister

    Liked by 1 person

  2. If only I had read this 13 years ago, I would acted in a different way towards my beloved son. Thank you for for sharing.

    Sent from my iPad

    >

    Like

    1. Dina please don’t let my harsh words on a bad day make you question what you could have said or should have said. I am certain that what you said and did were just right for your son and came from a place of love. xxxx

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  3. I saw that FB passage and believed it. But I know how you feel…I talk to my hubby to see what his thoughts are. They are similar to yours. Talking about your true feelings is good for you whether folks will listen is another issue. God bless you Sarah 💙💜

    Liked by 2 people

  4. Thanks for sharing Sarah. It is always wonderful to read your posts. I know I have not been as active as when I was in US. Living in Singapore does restrict me in having full flexibility as compared to when I was in US. I also do feel a change in me and have been worrying about myself. I cannot control my right knee especially when standing or walking. I don’t know the purpose of life since I am divorcing. Have been telling myself that I should treasure my life since God has been blessing me with more than what I deserve. My church friends gave me a red packet with money as a farewell gift, knowing I will be going back to US. We do need miracles from God, just like that movie ‘Miracles from Heaven’. God bless you Sarah!

    Liked by 1 person

    1. It is so good to hear from you and I am wondering when you’re coming back to America. It is a great wish of mine that some day I can give you a real hug. Love ❤️

      Liked by 1 person

      1. I am supposed to be back by October but I have no money. He took the 50% of my share of money. Think you know my story on Facebook that he sold the house without my knowledge. And need to make sure he pays when I go back to MA and rent a room. But I cannot rent till I am back to USA as I am afraid of scams. Another way is to live in AZ first since it is cheap and goud public transportation in Tempe Arizona. Want to see all of you too and give all of you guys and talk and catch up. ❤

        Liked by 1 person

  5. Honey, everyone has a right to complain when they are unhappy, disappointed, frustrated, annoyed, etc. Friends know how to hold that verbal pain with love.

    The routine give and take of friendship conversations tends to be 70% positive (I think) and 30% negative. Now, I’ve known some people who live in the opposite ratio and I tend to avoid them (which is how I interpret your sense of other saying “buck up!”), But Sarah, sweetie. I love you independent of the HD and holding your pain with you is part of our friendship.

    Maybe this makes no sense to anyone but me, but wanted to share that perspective. I urge you to spend more time with those who know and understand you. I really wish you were here. I want to hold and love you, set you on a chair under a palm tree and play cool calypso music on the steel drums.

    Liked by 1 person

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