bad moment quoteIt’s no secret that things have been rough for me lately. Not only have I had to face one of my biggest fears, but I have been surrounded by it. Having to go through an agency to meet my caregiving needs instead of being able to hire people independently goes against almost everything I am about. For more than thirty years, my life has been defined by fighting for my independence and finding my voice as well as making my own choices. Because of various circumstances, going through an agency to get caregiver coverage will take some of that away.

There are times I have wanted to do nothing more than turn and run, but if I could do that, I wouldn’t have a need for caregivers. That seems ironic somehow.
It hits me hard sometimes. The loss of control. The decrease in dignity. The thought of absolute strangers coming into my house to help me with the most personal things that I do. And it’s a big deal. But it’s up to me not to make it everything.
People who are close to me know that I am no stranger to frustration and disappointment. Those things are a part of life for everyone, maybe even more so when a person lives with a disability. But bad days? The older I get the more I am learning that, for me, those are a decision.
When I get bad news or something doesn’t go the way I want it to, or something happens that is unexpectedly unpleasant, it is natural for me to feel sad or hurt or angry. And I am a huge believer in people feeling what they feel completely instead of trying to minimize it. I know that when someone feels into a negative emotion it can feel all-encompassing, and the moment seems to last for an eternity. The thing that I need to remind myself is that negative feelings don’t last forever and a bad moment doesn’t have to equal a bad day.
When I look around at all that is happening in the world, so many people are affected by things that are out of their control. Hurricane Harvey hit the neighborhood where I grew up with a vengeance, and many families who were a part of my childhood lost their homes, their cars and most of their belongings. It hurts my heart to think about people I knew when I was younger, people I care for, dealing with all of that. And then I see Facebook posts from the same people in Houston who are incredibly grateful for the sack lunches they received from strangers during demolition days and the groups of volunteers they had never met who pitched in for hours helping people who needed assistance. Are they in a bad situation? Yes. Did they have a completely bad day? I don’t think they would say so.
Because of some glitches with Medicaid rules, I technically have not had any caregivers this week. (The agency can’t start until Monday.) Have there been moments I have been scared spitless? Yes. Am I spending more time alone than usual? You bet. And that has been proven to be not a great thing for me. But in the last few days, I have put effort into doing some things for myself that I have never attempted before. Some crashed and burned. Some worked out. I would never have known about the latter if my current circumstances were different.
My friend Andrea lives in Lee’s Summit, about 45 minutes away from me. I have seen her much more often than usual lately because she is checking on me whenever she can. She keeps up with my laundry and does my dishes when she is here, all the while reminding me in many ways why we have been friends for more than twenty years. That has been a good reminder that not everything in my life is changing. I need to know that. Eric, who technically stopped working for me last Sunday, comes by for a bit in the evenings just to help me into bed. It’s something he doesn’t have to do. He does it anyway.
Do I still get overwhelmed with the idea of working with an agency when I vowed I would never do so again? Indeed. I have sobbed and screamed and cursed the unfairness of the world and the fact that I am so dependent repeatedly. At other times, I have invited my heart and my soul and my mind to be open to the possibility that working with an agency might be a good thing for me.
There is also something to be said for looking the deepest fear in your soul square in the eye and showing it who is boss. If I can do that, at least eventually, I will feel unstoppable.
I am certain that I am not yet finished processing all the emotion around this situation. I will be okay with the bad moments to come. And I will do my best to keep a simple truth in the forefront of my mind.

Bad moments don’t have to equal bad days.