Living with Cerebral Palsy and Intersectionality

I'm fried at all the edges this week. I almost didn't write this post. This happens way more than I get into most of the time. I'm constantly burning the candle at every space possible because I don't feel like I have a choice to do anything less than that. I'm exhausted, completely depleted, dealing with work emergencies, and rolling into a disability in context presentation on Monday on fumes. This is me. I will go as much as I can until I can't because I feel like there's no other way to live. I'm told I should rest and take care of myself and the output rarely slows down. For me, it's not a lack of choosing to rest, it's a lack of people understanding how much rest I actually need. Even the people closest to me really don't get it (whether they try or not is irrelevant). I'm about to talk about disability in the context of leadership on Monday. If leaders “eat last,” I was born to lead.  In leadership, you do everything to...

Previously on Cerebral Palsy and Intersectionality you read about some longstanding rules that I still keep today. I covered no phone calls after 9 pm, not refusing food, not telling people what goes on at home, and not leaving things on the floor. Here you'll read about some other rules I still keep today: no uninvited guests, don't talk about that, don't cuss in the wrong context, and don't do things without permission.  “Rules and regulations to command and obey” (Fuzzbox, “Rules and Regulations”). No uninvited guests is a lifelong rule that I still keep. Growing up, my dad was a recovering junkie on methadone. Not only was I not supposed to talk about that openly (as I addressed in part one), I was highly discouraged from having friends over without my dad's prior knowledge and approval. This might make sense as a little kid, but that remained true until I moved out in my twenties.  My dad was incredibly paranoid about the methadone, that he had a co...

“What's a rule from childhood you still follow and why?” There's probably too many to count for better or worse. No phone calls after 9 pm. Don't refuse food. Thank people and use your manners. Hold doors open for others. Rinse and reuse. Finish what you start. Don't open the door for strangers. No uninvited guests. Don't tell your friends what's going on at home. Don't cuss in the wrong context. Always lock the door. Don't do things without permission. Don't talk about that. Don't put things on the floor. Always figure out a way to eat, even if you can't afford it. Try something before you decide you don't like it. Wait until others are served before eating. I think that illustrates that I've got a lot of embedded rules and that's not everything. I'll kick this off with no phone calls after 9 pm.  First, let's clarify that I grew up before the cellphone. I have a lot of memories of coming home and checking the...

“What advice would you give your younger self?” Love yourself first. I was brought up on “Jesus, Others, Yourself.” I'm still trying to rewire that. Throughout most of my life with CP, I have lowered my worth for your acceptance. I have put you before me. Being the child of an alcoholic and a drug addict only exacerbated that pattern because so much of my life was for and about my parents. It's happened in jobs, friendships, and relationships. Now that I'm a parent myself, my kids take center stage, and I'm still finding my space. I'm still trying to figure out how to love myself first. I'd give this advice to my younger self because it's a really difficult pattern to break.  It's taken me nearly forty years or so to develop the comfort to ask for the accommodations that I need and to advocate that people don't make assumptions about my abilities. That's not for a lack of words on my part. It's a lack of owning my space in life. I...

“Tell me a time you were terrified to do something, but you did it anyway.” The real answer to that is there's at least one thing every day. For instance, today's fears were walking on steps for a group photo shoot and making sure I didn't miss the photo shoot on my day off because I don't want to be invisible or have anyone think that I was unwilling to show up. I work really hard and being present for that was an acknowledgement of my efforts. On a historical scale, hospitals top that list.  I'm very uncomfortable and also very familiar in a hospital setting. When I was about eighteen, a peer and I went to the local Children's Hospital, a place I spent a lot of my childhood. A place that gives me trauma flashbacks to this day. Hanging out with this girl was confronting in a lot of ways. She was still involved with the Children's Hospital because she'd been through a major life event that they helped her recover from. I was terrified to walk...

What happens when my cup isn't full? What happens when there's more outputs than inputs? What changes when I get what I need versus when I don't? In my second to last album, I wrote two songs that pretty much have a polar opposite vibe. Beautiful Life opens with the following line, “I sang of redemption and the wounds of war, but never a hope like this before” (Tim Kellogg, “Beautiful Life”, 2013). It's oozing with hope and joy. That wasn't exactly the norm then, nor is it now. A couple tracks later on the same album, “Tattoo Me, Love Me, Boo Me” is a scathing indictment to some critics at the time. It closes with the title line, “Tattoo, love, or boo me” (Tim Kellogg, “Tattoo Me, Love Me, Boo Me”, 2013). I wrote these two divergent songs about 4 months apart. They illustrate what happens when I get depleted.  People aren't really used to me being a beacon of sunshine or energy for that matter. I'm not used to it myself. Frankly, it's pretty much my norm...