My walking is deteriorating rapidly. I thought since I am losing weight, it would make moving easier. And it has to some extent. But as there becomes less and less of me to heft around, more and more, I’m feeling like the scarecrow in The Wizard of Oz. My legs go one way while my arms go another way. Meanwhile, I watch to see which wall or doorway I need to grab hold of to keep me upright or on course.
The only people in the world who have acknowledged my deterioration in this area are my sons. My youngest son lives with me and seeing me stumble around is just another day in his life. “You OK?” is a phrase he utters a hundred times a day. My husband is vigilant, responsive and never complains. I am grateful and I feel loved.
My two older boys live away from home. Recently, we were together in the NC mountains (at my friend, Nina’s house) after being apart for a couple of months and I think my sons were a little shocked by my decline.
My older boys, I noticed, were never too far away. When there was a stair to climb, a hike to attempt, and darkness to negotiate with, one or both sons were there, asking me if I needed help, extending a hand, or simply grabbing hold. I was grateful and I felt loved.
But the thing is, nobody came out and said, “Gee, you’re getting worse.”
People don’t like to say things like that that.
Still, sometimes I think I need to hear such remarks so I can better avoid avoidance and deny denial.
I wish someone would walk up to me and say, “I can tell it is getting harder for you to walk. I know it must really suck.”
No “I’m sorry” is necessary.
Just affirmation of my reality.
Huntington's Disease and Me 
I know. its the pink elephant in the room. Everyone continues to walk around it. perhaps next time say ” Is there a pink elephant in the room?” maybe that will invite some conversation. Always, always, I will admire you and your courage;)
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Thanks Teeny. You have given me the idea to search for a pink elephant costume. Much love.
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Love your story. You are amazing! I can feel that i m getting worse. I am blessed that my own family and my friends will help me such as putting food into my plate or helping me buying food and drinks when we go out. Sometimes i take so long to eat that i get tired of eating and will stop. We must fight HD
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I’m so sorry to hear this, Sarah, but I also appreciate you sharing it. My sister was here the other day, and I thought the same thing… but didn’t have the heart to say it. That’s the crux of it, isn’t it? Heart. We love you. We are guarding our own hearts as well. BUT, you are right. It’s important to be honest and support you in this incredibly challenging journey. Validation is what we all want and need in life. It’s not just about HD, it’s about feeling seen and heard.
When I saw you earlier in the summer, I could definitely see the HD–– it’s something I recognize. However, I told you honestly, I’m not sure that strangers would see it. Or anything unusual, to be hones. Though, I understood your feelings of self-consciousness. So, I imagine, like your older sons, I too would shocked. I can only imagine you smiling across the table, sharing stories with me, and becoming my friend.
I’m sorry you are going through this. It does suck. It’s just not fair. I for one, am so grateful that you are sharing this journey. (( hug )) And congrats on the weight loss; you’ve worked so hard! I’m amazed at your tenacity!!
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