Perfume and Milk to the Whole Wide World at the End of the Line

“Well, it’s all right, every day is Judgment Day. Maybe somewhere down the road always (at the end of the line)” (Traveling Wilburys. “End of the Line”). I was first introduced to this band when I was 18 years old. Playing in a band with three guys my senior that they dubbed, “The Old Farts and the Peep.” However, it was for a different song on this same album. I was introduced to “End of the Line” in the rooms. Today, I’m listening to it as I write this post. Not because I plan to tell you about the rooms (those are intentionally anonymous). Instead, it is because I’m looking at a picture of myself within the first eight days of life. And, the front of the line was pretty fucking close to the end of the line. I’ve been “doing the best I can” ever since.

If you recall, I was born two months premature. If everything had aligned perfectly, I would have been born on my mother’s birthday. Instead, being born so early I was just 3 pounds, 11 ounces. Those first eight days were pretty intense. Constant observation, definitely some near death, and some “resuscitative efforts” in the very beginning. As I look at this picture of my tiny little body, I see a lot. Mostly tubes and wires. As you’re probably aware, babies in general are pretty small. When you come in about half the average size of a newborn baby, there isn’t much of my body that’s not covered in tape, tubes, and wires. There’s the respirator that’s breathing for me because my lungs weren’t ready to do it. There’s the patch over the umbilical cord to make sure I’m eating. There’s the heart monitor because my heart wasn’t fully formed either. And, my eyes hadn’t opened yet. There’s the IV. Literally strapped to my arm. My tiny little arm. Making sure that I get whatever nutrients and antibiotics they could pump into me. It’s the most rounded shape my head has ever had.

Even though I know this picture is me. It’s pretty intense to look at. Especially after reading my birth records earlier this year, knowing that I almost didn’t live through that. And yeah, sometimes I process that in real time with you as I write. Because I knew most of my story but I didn’t know that. Turns out, that tiny little baby was a fighter. A very strong fighter. I am fairly convinced that my resolve came at day one. When the prognosis isn’t good and they assume that you aren’t going to live, those aren’t good odds. Every day was touch and go.

“When the whole wide world’s against you. And life’s got you on the run. And you think the party is over. But it’s only just, only just begun” (The Rolling Stones,.”Whole Wide World"). In another picture from that same set, my tiny little hand is resting between three fingers of my mother’s hand. This is the time of year that I might reminisce about those stories with my mom or with my dad for that matter. Instead, I’m reconstructing these stories for my readers without the help of any of the people that were there with me. They're gone. I’m relying on photographs, memories, recountings, and most recently medical records.

It’s a little bit apropos that this is the time of year that people gather and when people like me mourn. And, still other people find themselves alone. It’s hard to be alone this time of year. Even if I don’t miss some of the holiday traditions that I remember. It’s not always easy to think about these things in order to write them down. I think what this particular story illustrates when you look at the strength of the tiny little baby version of me is that we find our resolve and we find our strength. Sometimes we find it in the most harrowing of moments. Sometimes, in the moments where we have no control over the outcome, and that lack of control over the outcome has been a driver of a lot of things in my life. From life itself, to how my career has played out in certain moments, to the people that have come and the people that have gone. However, that may have transpired.

“And all shall be well, all shall be well. Miracles are often inconvenient. And prayer is a spell…. The seasons change. The world turns.” (Florence + The Machine, "Perfume and Milk”). Life is a lot like surfing. You learn to ride the waves or it takes you out. My life is an adventure in learning to ride the waves. Personally, professionally, and otherwise. I learn to ride the waves every day. Some days are better than others. It’s always a learning curve. I’ve learned a lot. About how to show up in this world. I’ve learned a lot about what I’m capable of and what I’m not. I’ve learned a lot about what I believe and what I don’t anymore. And, like I said a long time ago, “the more I learn, the less I know.” 

Something I learned recently, to call back on when I need to, is to hold space for the pain and the joy at the same time. I think it’s honestly pretty cool that I was able to overcome all the things that I have and generally still have some sense of positive thoughts, or kindness, or generosity towards the world. Sure, I like people a lot less than I used to. Sure, I’m not religious anymore because I’m jaded as fuck about that. Sure, holidays don’t sit quite well for me. It's a smoke screen for the life that is gone and also the chaos that it was. On the other hand, I've gotten to do a lot of cool things along the way. Dangling off the side of rocks, skiing down mountains, hanging out with other adults with CP, publicly talking about disability, providing tools and resources for my professional peers. For all the things that I’ve had to learn and will continue to have to learn, I have something to offer. It’s only taken me 40 years to really start to believe that. This season, whether you’re alone, you're alone in a crowd, you're surrounded by joy, or something somewhere else in between. This is a season. It is followed by another season. And, I wish you well, in whatever season you’re in.