Last Sunday I was laying with an ice pack on my back, trying to stifle my laughter as dad continued to yell at the television. The Patriots defense was not holding up against the Seahawks offense. If you have ever watched a football game with Boston Joe, you know what I am talking about. If you haven’t, let’s just say, he’s very passionate about the Pats having a stellar record and expresses his sorrow and anger via f-bombs and expletives that I would prefer to omit from this post. [Here’s hoping that today’s game will yield a better performance and Dad will be a little more tame considering we will be in a public place.]
After my appointment with Dr. Feldman and Tiffany and going through narcotic withdrawal, made easier by the presence of friends, it seemed as though the healing process was trending upward. And I have also learned that this process is not a linear one; good days are great and the bad ones can really suck.
Healing. The word itself has a gentleness to it. Not always true. It’s really fucking hard. It isn’t glamorous. There isn’t a whole lot of excitement. It is slow. Sometimes unbearably so. It’s a lot of laying down, sometimes with a bone stimulator strapped to my leg or a tens unit on my back. It’s acknowledging that walking with a walker is the best option. It’s learning to accept and then laugh at the fact that I can’t put on my own shoes and socks by myself. It’s being ok with asking for help… with everything. It’s forcing myself to nourish my body, even when I don’t feel hungry. It’s taking a handful of pills like candy. It’s acting like an infant and then breathing through having to learn to give myself injections to make new bone grow. It’s allowing the process to be what it is, difficult, and letting the tears flow whenever, wherever. It’s saying no and stopping when the pain gets too difficult to bear.
Now that the anxiety and anticipation of a big surgery has passed, the work begins. Healing is my full time job; the little baby steps, every single day, that often go overlooked and eventually become progress. I know that it gets easier with time and it doesn’t make a painful present moment any less uncomfortable. Connecting with others who can relate and truly understand what I am going through has made the impact of the past six months a little more gentle.
West Palm Beach is home to an incredible group of people, consisting of fellow patients, therapists, PAs, hospital staff and doctors, some of whom I get to call friend and interact with outside of the confines of St. Mary’s. In a way, I share the journey with them, each person adding a flower to my bouquet as progress blooms. I stand firm in my belief that we connect through authenticity; our struggles and pain. We all experience it in one way or another and possess the ability to shed light on each other’s situations. Sometimes those hush hush, uber messy, that is not me, shit storm experiences we have, or situations we find ourselves in, that NO ONE ever talks about, are what we form our strongest connections over. Those who know me best are the people who have seen and are willing to understand the path I continue to walk in this life.
As I approach my three week post-op mark, it feels fucking strange to have gone through SO much in the last twenty days and only have a long thin scar running from the middle of my shoulder blades to my ass crack. And that is no exaggeration. All I can do is laugh. My scar is literally a continuation of my ass crack. Someone suggested getting a tattoo and making the scar into a zipper so it looks like you can unzip my back. I’m considering it. KIDDING. Sort of. I am also open to suggestions.
My reality is that in the last six months, I have had three major surgeries, two on my spine and one on my right leg. Three broken bones, two long titanium rods and a whole bunch of screws later, and it’s hard for me to begin to express how I feel. In a way, it’s as if I have failed. Somewhere I took a wrong turn. Listen, I am telling you this because its my honesty. I know it isn’t true. And part of me still looks back and wonders what my life would be like if I wasn’t born with dwarfism, if my spine didn’t decide to nearly paralyze me. If my legs were straight from the start. Would I be working in a major city somewhere making a whole lot of money? Would I be married? Would I have kids? Would I still warrant the nickname Sassy? So many questions. Quietly, I ask them to myself and then I let them go.
Right now, I am here. In West Palm Beach Florida. The fear that I went left when I should have gone right is real and it’s palpable. Every step that I take, shift I feel in my lower spine, sleepless night and moment of severe discomfort; fear is present. Then recently I read this:
When we are broken and bruised, especially as children, people automatically want to wrap us up and keep us safe from the world.
No. Just NO.
Rise up. Go out and face the hurdles. It isn’t pretty and that’s ok. The magic comes from the mess. It hurts. It doesn’t happen overnight. Baby steps. We can only take one step at a time and though small, those baby steps move us forward.
So here I am. Doing my best to drop any and all expectations. One day at a time. Taking the little moments of success as BIG wins. In the last week, I have graduated to crutches, done stairs TWICE, experimented with walking with one crutch, sat up in a chair for extended periods of time, conquered the movies and had another successful check-up with Dr. Feldman. My driving privileges will be returned in 10 days or so. And I learned to give myself injections which will help my body lay down new bone and speed up the fusion process.
That light at the end of the tunnel that everyone always talks about? I’ve stopped waiting for it and I’m creating my own. It grows brighter by the day. When we utilize whatever strength we have, we can light that shit UP. My little wins shine light on my journey, daily. When things get dim, I remind myself that I have two feet on the ground and THAT IS HUGE.
Thank you for the continued support, kindness and love. In a period of time when there is so much division and disappointment in our country, I am choosing to focus on the unity and promise. Look around. We are surrounded by so much love. And I am firm and resolute in my belief that love trumps hate. Keep loving, hugging and smiling. Support one another. No gesture is too small, trust me. Choose to bring positivity, laughter and love wherever you go.
SIDE NOTE: Taking a Klonopin before bed is only conducive to sleep if you don’t have a bottle of craft glue and bags of rhinestones conveniently at your bedside. The result is a bedazzled back brace.
Be the light and reflect the light.