I didn’t realize how much space silence takes up until it started to consume me, until it started to taunt me. It was 4:45 AM on that cool January morning. Naty, my sister, was driving, I was riding in the passenger’s seat, and my mama was in the back seat. No one dared to speak. No one knew what to say. Because what do you say on the day of your surgery? You say nothing, because the silence itself says it all. Instead of speaking, I starred aimlessly at the clock and observed how time stood still. It felt as though every silent second that passed filled the air; it filled my thoughts, it cons ..read more

Just breathe, I told myself as I slowly began to fade in and out of consciousness. My legs were weak, my body was heavy, my heart slowed as I fell backward and landed on the medical exam bed. I could feel myself slowly drifting away. The lights in the ceiling began to fade. I was in what seemed like a weird cloud. In the distance, I could see hoards of people ambush me with alcohol swabs and oxygen. A nurse kept smacking my face and yelling, “Ms. Velez, Ms. Velez, can you hear me?” Yes, I obviously could hear her, she was yelling two inches away from my face, but no, I didn’t respond. Not beca ..read more

When I tell people about having scoliosis, many question the validity, as if my condition isn’t really all that serious. If I go into all the gruesome details, I notice that many look at me differently than they did before. Some, in fact most, I think get confused about scoliosis and spinal fusion, because it’s not something I can really explain in a short conversation. So, I have found that sometimes it’s simply easier not to say too much about my scoliosis and instead, for me, it’s easier to write about it. In all honesty, I am actually a super private person who doesn’t really like over-sha ..read more

Music soothes the soul—especially, when all you want to do is hide from the world. As a person living with scoliosis, and the chronic pain that comes with it, there are days when an endless stream of music is all I can cope with. If you’re having on of “those days,” here is my list of relatable songs I listen to during those tough days. Skyscraper – Demi Lovato You can take everything I have You can break everything I am Like I’m made of glass Like I’m made of paper Go on and try to tear me down I will be rising from the ground Like a skyscraper Way Over Yonder – Carole King A way o ..read more

You have to forgive and accept—yourself, mostly. The use of medical equipment for assistance, such as canes, walking sticks, and back braces, doesn’t change who you are. High-heels are so over-rated; practical comfy shoes like Clarks are the way to go. People can be really, really mean. Dealing with scoliosis is like navigating a maze—you will run into a lot of dead ends. Squatting down is a much easier way to pick things up than bending over. People do not see scoliosis the same way you do. A pretty dress and makeup can make you feel so much better. You don’t have to sit down if you don’t wan ..read more

I asked my closest family and friends to share what they’ve learned from loving a person with scoliosis, and this is what they had to say: I’ve learned a lot about resilience, and about individual strength to cope with and push through challenges. But I’ve also learned about helplessness, and understanding that as people we have an incredible capacity in some ways, but we are so restricted in others. — said my doting husband I suffered a lot with everything you went through,and through your resilience and resignation, little by little, I learned to accept that in life we have to accept everyth ..read more

Dear Lukas- I can’t believe that you are coming into this world in less than two months. I feel so incredibly lucky, yet terrified that you have chosen me to be your mom. In the short amount of time that we’ve been together, I’ve really been reflecting on my own fears about the potential limitations my condition will bring, and I need you to know that I am afraid that I will not live up to my own expectations for the kind of mom I want to be and feel like you deserve. I know that there will be times that I will not have the physical strength to do the things you want us to do together. I also ..read more

Some people say that things happen for a reason. Sometimes you have no idea what that reason is, and sometimes the reason is so obvious you can’t ignore it. Maybe the reason things happen a certain way is because they need to happen in that particular way. I know it sounds trite, but in the moment, it’s hard to see it that way. When things happen and doors close, it’s hard to see the possibility of it all. For me, the closed door was no health insurance. It was getting denied for Medicaid. It was knowing that at least for the near future, I would not have surgery. It was the uncertainty of my ..read more

The future is hard to talk about, because it’s largely unknown. I have no idea what to expect in the next 10 years. I have no idea what to expect the older I get. I’ve searched for answers. I’ve looked through medical research, but there doesn’t seem to be a clear picture as to what the future holds for people who have had scoliosis spinal fusion. To make it easier for myself and for anyone else searching for answers about spinal fusion, here’s an infographic I created based on the statistics that I found in various medical journals ..read more

I have scoliosis, and I am fused pretty much all the way up and down my spine, which makes me part bionic. I know, I know, lucky me (ha, just kidding). It’s really not that great. In fact, the truth is that being fused feels kind of like someone strapped a giant piece of wood alongside my entire spine and told me that now I have to live this way forever. Don’t get me wrong, I am totally used to my piece of wood that limits my mobility, but it does make things slightly more challenging. Not all people living with post-surgery scoliosis will go through the same challenges as I do, but I wanted t ..read more