Gimme Some Lovin', Whiskey Lullaby, One Year, Six Months

Have I cracked the surface of disability in context over the course of the last year? This post marks one year of Cerebral Palsy and Intersectionality. I've told you stories about mountain climbing, literally, figuratively, professionally, and so on and so forth. I've told you about portions of my medical history and racking up 10 surgeries over the course of my lifetime. I've told you elements of my family background. I've talked about the passing of my parents, the addiction of my father, the alcoholism of my mother, mental illness that they both struggled with, my mom's overdose, and how my perspective of these things has changed over time.

For one year, six months, I've been sharing my story in front of various groups of the general public, library professionals, organizational development practitioners, and more. I'm incredibly grateful for those opportunities, how they continue to develop, and where they might go. 

“Follow me there, a beautiful somewhere, a place that I could share with you” (Yelloowcard, “One Year, Six Months”). “And I'm so glad we made it” (The Spencer Davis Group, “Gimme Some Lovin'”). 

When I started doing this in February of 2024, it was a chance thing that I wasn't expecting to become a thing. I certainly didn't expect to write over 800 words a week about what it's like for me to live and work in the world with CP. I didn't expect to write about the broader context of my life and how it converged at an intersection with the CP. 

Oddly enough, I started reading the books Boldly Belong and Fawning at the same time. One deals with being disabled in a world that unfortunately makes things disabling for people with disabilities. The other deals with a trauma response from feeling unsafe in one's environment and adapting their behavior for survival. The overlap between these two completely different books is wild. It's very reminiscent of my life. With my CP I haven't always felt safe in the world. I've had to talk my way out of bullying and other sticky situations. Growing up in the full knowledge of the powers of addiction, alcoholism, and mental health issues put me in a position to respond differently to feeling unsafe in the world and at home. In fact, I did a lot of protecting for the people who were technically supposed to protect me. The coexistence between my CP and family dysfunction is intertwined. 

One day, my dad is taking me to the Children's Hospital for physical therapy, one of my surgeries, CP sports programs, and even karate. The next day or even the same day, I was accompanying my dad to his drug treatment center. That was my normal for many years. I was proud of my dad for finding Jesus, treating his addiction, and being there for me through all the surgeries during my childhood. Jesus was a second chance for both my parents and that's how I saw it. 

Though, for most years, my relationship with my mom was complex. I was upset with her for my parent's divorce when I was little. Things were just odd and I'm saying more than I can there. I don't remember how old I was when I learned that my mom was an alcoholic. I do remember the only time she invited me and my other family members to a meeting where she was getting a chip for sobriety. Things were pretty estranged by that point and I remember that I wasn't happy to be there. 

I remember the times my parents tried. I remember the times that their behavior hurt the people around them. My childhood looked something like this. I spent most summers recovering from a surgery. I spent a lot of time in PT. I spent the winters in ski programs for kids with CP and other disabilities. I spent my Sundays mixed between Evangelical church and my grandmother's in the mornings and custody visits with my mom in the afternoons. 

It's funny how time changes perspective. In my childhood, my dad was my hero and the one I saw as there for me. Growing up with a single father who had primary custody is a perspective point of its own. In my childhood, my mom was the one trying to win affection and right wrongs. I knew my parents were divorced and I saw them trying to get along most of the time. Not that it wasn't also weird because it was, except that it wasn't because that was just how it was. 

As a teenager and young adult, my CP was shifted to the background because I wanted to hide it. I was tired of being bullied. I wanted girls to like me and I thought that was going to be a deterrent. I phased out each of my CP specialists one by one. The medical system helped with that too because there are considerably more resources for children with CP than adults. In my teens, I doubled down on favoring my dad. I was fully codependent, helping him run the household, and usually taking his side in his conflicts with my sister. That one still bothers me a lot. And, in my teens, my mom was starting to go between twelve step meetings and prescription abuse. By the time I was eighteen, I'd fully cut off most regular visits with my mom. As a teenager, looking for belonging, I left the Evangelical megachurch for the Salvation Army because it felt more relatable, less the army lingo. 

I'm glossing over or straight up skipping, the trauma of the James Dobson method of discipline (fuck that guy), some intense battles with my sister, the clouds around certain individuals in my life, the introduction of my dad's terminal illness that wasn't what killed him after all, and the beginnings of why I hate receiving phone calls and voicemails to this day. I may have wanted to hide my CP to be more attractive to the ladies in high school, but it was very much buried in the background of my codependent caretaker roles. 

How could I realistically think about what I needed for my physical health when I thought my dad was dying and thought my mom wanted to end her life? And, of course, I didn't feel the physical pain from my spasticity the way I do today so I was able to ignore my needs. Today, I wish I'd never quit the ski program. I wish I'd never been in a position to take sides between my father and my sister. They were both out of line most of the time and my dad was the parent, so he was the one with the most responsibility. I'll never know if my mom's overdose was accidental or intentional. It doesn't make any difference really. 

The deterioration of my immediate family was a slow burn, or burn after burn. But, surprisingly a massive amount of changes occurred in the span of a few years. Between twenty four and twenty eight, I went from being an Evangelical studying youth ministry to a Lutheran youth minister between ministry gigs. I went from visiting my father on the weekends during college and having hours long drug influenced conversations with my mom over the phone (she was regularly in an altered state at this point), to transferring to an out of state college a few months after my mother died because I desperately needed a change of scenery. The Evangelical scene was pissing me off and encouraging my rebellion. I'd fallen in love and been heartbroken. I was grieving the loss of my mother and the weight of her death being an overdose. I fell in love a couple more times and burned some bridges along the way. I had to take my dad's car keys away from him because his anti-tremor medication, mixed with his psych meds, and his addiction meds, made it dangerous for him to drive. Hell, it caused him to fall down a flight of stairs, which changed everything in my life. My grandmother died. My dad refused to make his care needs easier for anyone. I left the home and the state I grew up in for the unknown. In about three and a half years, my family was obliterated from what it once was. 

My childhood and teenage norms weren't great, but my twenties norms were change, chaos, and sorrow. Is it any wonder that I found more relatability in Jesus’ cry of dereliction that God had forsaken him than something more comforting? And, yet, I went on to continue a career in youth ministry in spite of my doubts because my conviction that Jesus was my path out was indeed true in a practical sense. It was Church leaders and mentors that gave me safe spaces from the chaos, supported my college goals, and taught me most of what I know to be good ministry. I learned how to be an Exvangelical in a Lutheran world and kicking and screaming, I wanted to belong there. I loved it. To the many former teenagers who allowed me to be a voice of hope and wisdom in their life, thank you. If you think I don't remember you, I do. 

The business of Church didn't provide me the same message that I taught people – you belong here. That broke me deeply. The absence of God in my hours of darkness broke me further. Enough to leave the Church altogether. 

“I want you gimme some lovin' every day “ (Gimme Some Lovin', The Spencer Davis Group). “Life is short this time it was bigger than the strength he had to get up off his knees” (Whiskey Lullaby, Brad Paisley and Alison Krause). 

Challenge and chaos has been the norm for most of my life. It's why I'm comfortable managing chaos at work. Chaos is home. I don't consistently take medicine for the pain I feel every day in my back, my hips, my shoulder, my arm, my hamstrings, and sometimes more because the pain is like the home of knowing I'm still here. That I didn't sing the whiskey lullaby no matter how much I like whisky and carry a deep sorrow in my soul. 

The beautiful parts of my life have all been influenced by my CP and my complex trauma experiences. I rarely have the energy to keep up with my non-disabled children who are more agile and energetic than I have ever been, even after 80 oz. of coffee. I don't really trust anyone and I'm not just saying that. I rarely feel comfortable in my own skin. The more “normal” something is the harder it is for me to navigate. As I reflect on a year and a half of telling my stories and a year of this writing journey. The stories I haven't told are as intentional as the ones I have because every day is an adventure to find steady footing on the ground beneath me and a sense of safety and belonging in my own skin. 

It's okay that my body hurts, it's been through a lot. It's okay that I carry sadness every day because my heart's been through a lot too. It's okay that I've made mistakes along the way because perfection is a mask for the fear of not being enough or being too much. I do my best to show up to work every day and focus on the mission of the job rather than this stuff here and I do alright at that most of the time. Work has become an ironic form of reinvention. I get to show up as a dad for the assignment of having every button pushed so that I can focus on the space between stimulus and response as Viktor Frankl says and chose something different from the chaos. I mourn the loss of a lot of things, but I'm grateful for the lessons. I'm grateful for the many lenses of perspective that come in handy in a polarized world. The flame of life burns inside reminding me that I am worthy of belonging and that I can love myself to the fulfillment of my dreams because I can live the impossible. 

If you've made it this far, the best is yet to come. Thank you to my allys and supporters for encouraging me to share my stories. Thank you to the people no longer on the journey with me in one way or another. I am who I am today because of the ashes of yesterday. Sometimes, “the juice was worth the squeeze” and sometimes it wasn't, but gratitude sits in tension with the sorrow so that I don't forget you. Love, light, and peace to all who need it.