It’s been a while since I sat down with the intention to write. I’ve thought about it dozens of times. Recently, I heard myself say, “Intention without action is useless.” So, here I am, grappling with a myriad of thoughts and points swirling in my head, not sure where to start. Bear with me; I’m just going to go for it.

Eight years ago, I faced the looming possibility of losing my ability to walk. You could attribute part of it to my lack of knowledge, but spinal stenosis, I’ve come to learn, is misdiagnosed and mistreated far too often. Thanks to the extensive community backing me, I found Dr. Feldman here in West Palm Beach, FL – a man and his team who refused to give up on me, working tirelessly until I was back on my feet.

In the midst of this chaos, my initial intention was simple: have surgery, heal, and return to Charleston. However, one surgery led to another, and the cycle continued. Two became three, three became four, and around surgery number four, I had to make a quick decision to uproot my life and move to Florida to continue the battle against my uncooperative “soul suit” (body). Four became five, five became six, and as of yesterday morning, I was eagerly awaiting surgery number eighteen in nine years.

Living with achondroplasia presents two types of people: those who journey through life without any medical intervention, and those who require one and sometimes multiple forms of medical intervention. Hands up for group two over here. It became evident during my childhood that I needed correction for the bowing in my lower legs – a choice I made to do in addition to lengthening. However, these past nine years have been different. Looking back, I realize there was a significant choice involved: fight for my mobility and independence or succumb to my “soul suit,” which feels like a little antique car constantly breaking down.

This past Thursday, I met with Dr. Feldman in preparation for surgery one week from today on the 31st. Initially, it was supposed to be a complex spine surgery – extending the fusion to my pelvis, re-instrumentation, and the insertion of two intervertebral cages in my lower lumbar spine. After several conversations, we both agreed that I couldn’t follow through with that.

Remember my little antique car analogy? Meet my mechanic, Dr. Feldman (DFeld), the unsung hero who refuses to let this little v end up in a junkyard. This surgery, which I now aptly refer to as a “tune-up,” was initially just going to be a spinal decompression where my spine has become stenotic again. There was a sense of relief after the agreement was made. And now I know why.

Back in October, my right shoulder and arm started bothering me. Nothing crazy. My massage therapist and I assumed that it was muscular, and that became a focal point during our weekly sessions. By Thanksgiving, it became pain that traveled all the way into my hand and fingers, accompanied by numbness, weakness, and spasms. That was my check engine light coming on. I needed my mechanic STAT. He knows that when I come to him with a complaint or an issue, it’s something. X-rays didn’t reveal anything concerning. After fighting with my insurance company for far too long, I was able to get an MRI. In my mechanic’s eyes, he saw a bulging disc in my cervical vertebrae (neck). He hinted that this was a minor breakdown, and I was hoping it could be taken care of during my upcoming tune-up.

Enter mechanic number two. My neurosurgeon deals with all of the wiring for these little legs; my nervous system is a mess. DFeld urged me to go see Dr. Raffa as he was going to be in on my spine surgery anyway. He deals with the cervical spine and the spinal cord on a deeper level. Yesterday afternoon, I sat in his office, with snacks, awaiting our discussion, convinced that this would be a simple fix in addition to my lower spine. An hour later, that was not the case. In addition to the bulging disc that I knew I had, I also have stenosis on several levels in my cervical vertebrae. Because I’m me. I have achondroplasia. My spinal canal is narrow. And this stuff happens to some of us.

If there is anything that my journey has taught me about my journey, it is NEVER a dull moment in my shoes. EVER. Did something ridiculous happen? Was Kristen in the middle of it? Oh, probably! I love when people ask me, “Is this your last surgery?!” I don’t know, and I never will. Imagine me asking you, “Did you just take your last breath?” Achondroplasia has rolled me into the OR 30+ times in my 38 years. 17 times in the last 9 years. But who’s counting? I am not going to sit around waiting for the “last one” or when I am going to be all better because truthfully, I have one shot at this thing called life. We all do. And I have never been more clear about saying YES to any and every opportunity that I am presented with and finding gratitude and excitement in every single day. I don’t know how long these little legs are going to keep me standing and mobile. Go BIG or GO HOME, people.

That word YES currently has me sitting on the Brightline on my way back from Key Biscayne where I spoke on a panel to the global leadership team of Havas Health and You alongside Molly Burke. A fellow disability community member, Molly is blind, and she can use YouTube far better than I could ever dream of. She too is a motivational speaker, and people, this woman knows what is up. It has been a while since I have heard another member of my community share their story, and despite constantly talking about the importance of being open and vulnerable, it is usually me doing so. Every point that Molly touched on about living in the face of adversity was relatable in my own way.

Radical Inclusivity Through Creativity

Diversity is creativity in its purest form; bringing together a variety of perspectives, experiences, and ideas, resulting in an inclusive, accessible, unique canvas. Different backgrounds and viewpoints contribute to innovative solutions, unique approaches, and life hacks, making it a potent source of creativity.

After the anxiety and sadness from yesterday, feeling less alone and unapologetically expressing myself has washed my slate clean. Havas, thank you so much for having me. The work you’re doing to include members of my community in advertising and marketing… just YES! No one else lives in our shoes, has our perspective or opinion. Thank you for highlighting our community, promoting the value of inclusivity and believing in change. Representation matters. Nothing about us, without us.

Love.