When you want to celebrate achievements of another and you love parties and people, it is gutting to learn that your presence at such events is a source of stress for your loved one instead of a celebration of a shared life experience.
When the potential for happiness is overshadowed by fear of what I may say and what I may do, it makes me feel inhuman and unloved.
When I haven’t even said or done anything wrong but need to be tucked away to preserve future relationships with more important people, I feel like I must hide in the asylum. I was invited by another party goer and gave my loved one the gift of “no”.
I will hide in the opera house for you if it makes your happiness complete and your transition smoother. Just realize please that I don’t belong there. I don’t want to be hidden in the opera house. I want to be free and proud and me, even though I am sick. I want you to be proud of me for trying instead of being terrified that I will be symptomatic.
Today has made me question all of my relationships because my closest one surprised me the most.
But I have given the gift of no because if I went and something did happen it would not be well received. I have no watch or present for you. I have love and years of listening to your dreams and frustrations and encouraging you to be your best possible self.
I gave you the gift of no and Fear it is the beginning of a lifetime of my further excision from potentially embarrassing moments.
But I do not have a behavioral problem, I have a neurological disease. Control only goes so far, as evidenced by this blog.
I would hope that as I worsen, the focus will be on ways that I say yes without feeling like Boo Radley has come a calling. Ways that my family and community can accept and even buy into my disease. That I can feel as welcomed at a going away party for my husband at work as any other wife would. That I will be treated with the dignity of a cancer patient or a paraplegic.
But today the gift of No was the best I could do. And I did it so you would be free of the stress of me.
If I had been there I would have looked at you with pride for all you’ve accomplished and with love for the man you are.
That’s how I’ll look at you when you come home today and every day, forever.
Huntington's Disease and Me 
Oh Sarah…I am so sorry. You are so special and never need to be hidden! I feel sorry for people that don’t take the time to understand 😞
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Thank you for your kindness. xxxx
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I am very sorry. It is a tribute to your humanity and love to receive someone’s fear and pain and to hold it with such understanding. Just because his fear took foreground in the moment does not mean it will be his truth tomorrow. Your generosity of spirit offers him the chance to grow.
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Thanks for your kind words xxxx
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I have said it many times, but I am always impressed at your insights and how you can express them and put them into writing. Love to you.
teeny
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Love you too Teeny
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Sarah, I have been following your blog for awhile now; I used to be close to a family affected by Huntingtons and I love your wisdom, perception, and writing style.
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I am so sorry Sarah. You do not need to hide yourself.we do not need to hide. This post breaks my heart as i can understand your feelings and why you want to do this. In Singapore it is much much worse with such people due to the unkind society. We are train to be puppets in schools and be competitive. That was why I migrated to US for the sake of my daughter her name is Chrysla. She is noe doing well in college and should be gradutsting in two years time. I lost track of the time as i don’t find purpose in my life anymore. Recently been thinking if her and what if i forget her like my mom. I don’t think i can stand the thought of not remembering her. I also remember the book Still Alice by Lisa Genova. Alice in the book was a Harvard professor for years and her husband too. They have two girls and a son. She went for testng and found out she had early on set Alzheimer’s disease. She was 50 years old. Her kids each have 50% risk too. And once Harvard colleagues knew that she has Alzheimer’s disease. They are different to her. her memory got bad. She could not recognise her love ones. i just hope that the drug from UnuQure will work for us.
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Reblogged this on The Huntington's Chronicles and commented:
Sara writes with such beautiful, poignant honesty. This may be my favorite piece of hers, but I’ve said that before. There are so many I love, as I admire her so much as well. This reminds me that those I love may feel very much the same sometimes… and I can do better to let them know I am not judging, just loving. When it come to HD, as with so many things in life, we all do our best, and (I believe) rarely mean to hurt each other. But we do. So, we say sorry; we say I love you; we try to do better tomorrow. Sarah says it so much better than I could.
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Sarah, this breaks my heart for the pain in it and the beauty of the words you use. I’ve reblogged and commented further on The Huntington’s Chronicles. You amaze me. xo
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You are very kind in your understanding and support. I am deeply touched that you reblogged and that I have someone in my life that gets me like you do. I am so lucky.
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We are all so lucky, that you do such a wonderful job writing about your experience. I know my own family members don’t always feel that I’m understanding or supportive. It is a painful thing on all sides. But, I think that it’s hard when you’re so close to something so painful. I appreciate your writing this and helping others see. xo
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