Monday, January 10, 2011

Questions and Comments

“How do you do it?” “How can you not complain all the time?” “How do you get up?”

“I could never be you.” “I could never live my life like that.” “I would just die.”

“I don’t know how I would deal with life.” “I wouldn’t be able to cope with it.”

“I would hate to be you.” “What can you eat?” “Why do you do that?”

“Why can’t you go out in the sun?” “Do you ever feel hopeless?” “Why you?”

“Must be challenging balancing all of the paper work.”

“Getting up in the morning is so hard when you’re sick I have found out.”

“What keeps you going?” “Do you hurt?” “How long will this last?”

“It’s all in your head.” “You look normal and healthy.” “Nothing is wrong.”

“How are you feeling today?” “How are your spoons doing?”

“How are you doing today?” “May I help you?” “Is there anything I can do?”

“What’s next?” “How long have you had this?” “Why don’t you cry?”

“Everything happens for a reason.” “You will get through this.” “You’re strong.”

“You’re hands look swollen and huge today.” “Are you okay?” “Hello?”

“What’s next?” “Isn’t this thing supposed to be managed sometime?” “Feel better.”

“You are a gift from God.” “You will light the world on fire someday.”

Welcome to a day’s worth of questions and comments. My response: “I take each day one step at a time and work with what I have. Instead of looking at what I no longer have, I look at what I can do. This is a journey I will be walking for my life. Many months of practice has led to the illusion of normality. Honestly I could cry buckets but it wouldn’t change a thing. I have learned to say everything is fine even when it is not. Management is what I strive for but doesn’t always work out that way. Of course I hurt. Probably enough to define hurt in the dictionary. I eat whatever I want to eat as long as it is gluten free. Yes some days I feel beyond hopeless. Thank you for the compliment. You’re quite amazing yourself.”

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