Getting real about Huntington’s Disease

I worried a bit about sharing such a dark post yesterday. About bringing the people around me down and spreading sadness. About reminding them of their losses. Of course these are the very worries that cause a lot of the problems that I talked about. The lack of communication in families and isolation when coping with such heavy issues. Last week I was thinking that there are others out there feeling what I feel and coping with the very same issues. I am not alone in this. I joined a support group that I will attend next week. Maybe I will meet some of those people. A couple of years ago I joined a parent support group. Parents sharing their fears and challenges and supporting each other through it all. It was amazing. I was so worried about my teens who had just lost their dad. I was so scared I would lose them too. I do not know how I would have made it through that time without that support. Thinking back on that time I decided to try a support group for Huntington’s caregivers.

We had a girls night over the weekend. Mom, my niece and I. My niece was out, so mom and I had a beer and chatted while we waited for her. We talked, we cried, we laughed. We were honest and we were open. Some things were hard to say and some were hard to hear. All of it was good and all of it was needed and long overdue. Yesterday I cried a lot as well. I was sad, I was angry, life felt so unfair. I let the feelings flow and gave myself space and comfort to feel. To feel without guilt or shame. And today? Today the sun is shining.

I have buried so much over the years. Suffered alone. Felt bad about feeling bad. Tried to pretend that everything was ok. The people around me could feel and tell I was not ok. I was angry and cold. Now I am giving myself the space to feel, to cry, and I am sharing my story. I know I am not alone. And this is how I will heal.

I hope that I will be there for my niece. I am so proud of her. She has such a positive attitude and is so sweet. She has accepted and is moving forward. She is hopeful. She is an inspiration. I hope to follow her lead and do the same. I hope to be here for her during her moments of sadness. I want to cry with her and hold her and love her. I do not want her to suffer alone. To be isolated with her pain. I want us to be real. To be open. To do this together.

I hope to open the dialogue for everyone. (If you want to join the conversation, please feel free to comment).

2 Comments

  1. Darlene

    Hi Ang. I think you’re really brave, sharing your vulnerability. It made me smile to think of you and your Mom laughing together. It made me sad to think about Lor and to hear about your Dad and your niece. Somehow through all the terrible and heavy experiences you’ve been dealt you are resilient, grounded and real. You are an inspiration. You are not alone. As humans we each have different experiences and horrors, but I think this can result in similar feelings of guilt and shame. These are heavy weights to carry. Perhaps the solution is to let our protective walls to come crashing down and allow ourselves to fully feel…thank you for sharing. -darlene

    • Angie

      Thank you Darlene. I think you are right about the similar feelings of guilt and shame and the solution. These feelings don’t have power over us anymore when we realize that our stories are part of a common, shared human experience. We tend to hide when we go through difficult times. That makes those times even more difficult. When we find people to share our experiences with, they become manageable. Somehow when we know we are not alone things become easier.

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