• Susie Torres

Re-Evaluating What a "Good Day" Looks Like

What is a Good Day?

Yesterday at the infusion center the nurses kept telling me how great I looked and acted. This was hard for me to accept. But you know when people keep telling you that, it does improve your mood. Before I left one of them said, "You're smiling, so you must be feeling good!" As I was leaving I wished there was a dance club attached to the hospital so I could go dancing for a minute. As I drove home (one nurse pointed out that I had put my walker in the trunk, drove to the hospital by myself, got the walker out of the trunk and walked into the infusion center all by myself.)

”Confidence” by Demi Lovato came on and I partied a little bit in my car. I even shoulder danced a bit and daydreamed that Justin Timberlake saw me bopping my shoulder then started a conversation about me being a dancer. I have a very active imagination. I had listened to one of his songs on the way to the hospital so that probably had something to do with his involvement in my daydream. By the time I got home I was getting tired but my emotional high had not ended. I walked to the mailbox without my walker! When I came in the house my husband remarked that I looked like I was doing well. I told him he must be right because the nurses thought so too. Instead of going to bed at 2pm, I stayed up, ate something and watched TV with him for a little bit. I decided it was time to reevaluate what a good day is for me. When I was a little girl most girls wanted to be teachers and nurses. It was the 1970's so when someone asked what a little girl wanted to be she didn't have a lot of options. I remember thinking I didn't want to be either of those things. I talked to my mom about it and she told me that I wanted to be President of the United States! I beamed. She was right. I was going to be President of the United States and I was going to be the best President of the United States EVER! I tell you this so you know something about my personality. My life took a different path. I hate to tell people this but I still have not become President of the United States and it is unlikely that I ever will. For me a good day would have been waking up, showering, fixing my hair and makeup, preparing healthy food, going to work, being the most productive member of my team, celebrating someone's birthday or having a team potluck, having lunch with a friend, doing some volunteer work, listening to a self help book during my commute, attending college after work, coming home to play with my grandchildren, spend time with my husband, talk to one of my kids, practice an instrument and a new language, get ready for bed, sleep 8 hours and start again in the morning. Now you understand why often times in the past year when my husband would say, "You look good today." I would get defensive. In fact, just 2 days ago, before bed, I was pouting to him. I said, "I wasn't very productive today." He said, "Yes you were! You made a recipe and you did dishes." I feel like he said something else but I don't remember it. In my mind I reminded myself that I need to change my expectations and I replied, "You are right. Thanks." Yesterday I woke up feeling yucky. Often when people ask me how I feel I don't know what to say. Yesterday I told my son in law that I was better than some days and worse than others. But yesterday turned out to be a good day. I took a shower and went to the infusion center all by myself. That was my productivity. Not exactly “President of the United States”, but I ended my day happy. That is important. I need to remember to judge myself not by how much I do but by whether I did my best. I have this idea that because I don't go to work, that I have time to practice 3 instruments and 8 languages every day along with cleaning and organizing my house, doing some dancing and preparing all of my meals. If I could do all of that I could probably go back to work. I need to be nice to myself. I know I would not put all of this pressure on anyone else. It's time to be nice to me. Goal number one: Get my smile back. When I was working my friends called me sunshine because I was always smiling. Maybe if I lighten up the pressure I can find my smile again. Disabled people are allowed to smile.

Susie Torres is a blogger and member of DSN's Writers Club. She is a frequent contributor to our blog and valued member of the DSN community. Follow her on her blog Positively Susie

If you would like to be a part of our Writers Club, join our Global Group Dysautonomia Divas and Dudes for auto-access to the Lifestyle Clubs.

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