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.