This world tends to throw us curveballs left and right, and you never know when they’re coming for you. When they reach you, often they’re difficult to work through. And sometimes, the outlook gets bleak. You can fight something and do everything you can to get through certain hardships in life, but sometimes it seems like there is just no working through them. Sometimes, you have to force yourself to push through and try your best not to let it get in the way of your life. Living with a rare medical diagnosis means that you’re not always going to find a solution to certain complications. You’re just going to have to take a deep breath, hold your head up high, and live your life as best you can.
When you have a rare disease, it’s scary. As many times as I’ve tried to claim I’m unafraid, I’m not sure I’ve ever actually convinced myself. It is scary, and there is no fighting that fact. What’s the scariest part about it? The unknown. Not knowing what lies in my future scares the living daylights out of me. I do my best to be positive and stay brave, but I’ve never been able to shake that fear of the unknown lying ahead of me. Having a rare disease means that you don’t know everything about your medical diagnosis. There is very little research on it. You can’t just Google “CLOVES Syndrome” and read all about the disease, the symptoms, the treatments, the risks, and scariest of all, you can’t read much—if anything at all—on what lies in your future.
Why? Researchers and doctors don’t always know. They can make speculations, but they don’t know things for certain. They may not know what happens when you’re sixty years old with CLOVES. They may not know if you can still hike through rugged terrain at that age like you can now at twenty-two. Will your joints still work properly? Will your scoliosis be worse? They may not be sure if you can carry a child when you’re thinking about having a family. Will the vascular malformations on your torso grow more by the time you’d like to start a family? Will your risk for blood clots make it too risky to carry a child?
They might not know until you reach that age, if they can get an answer at all. There are very few people with CLOVES who are even at that age or at the age of sixty. And not only that, but also one person may be able to do things that another person can’t or vice versa. It’s a very delicate, very complicated syndrome. And I thought I already came to terms with it.
When I was growing up, everything affected by CLOVES on my body was growing with me at twice the rate of everything else. My foot, my leg, my abdomen. It was a lot, and it terrified my parents. We didn’t know what CLOVES even was back then. It didn’t even exist yet. But when I stopped growing, the areas of my body affected by CLOVES did too. I struggled for a bit, but eventually I came to terms with it all. I accepted it and began to grow more confidence in myself, letting my syndrome fuel my self-esteem rather than diminish it. And for a while, things were relatively easy. I had few medical complications, I was thriving in college, and life was moving smoothly. I thought it all just stopped.
Come my final year of college, things started to get a little difficult. My back was hurting more than usual, and I started a few sclerotherapy procedures. Before I knew it, my vascular malformation on my back was kicking into overdrive. It was swelling to the point that even my friends were noticing the unevenness on my back. Why were things still growing? The growth is supposed to stop when I stopped growing. Or at least, that’s what I thought. I never really knew that for sure, nor did my doctors. I vaguely remember doctors mentioning that parts of my body could grow even more down the line. I had pushed that thought to the back of my mind back when they told me that years ago because I didn’t want to believe it. I wanted it to be over. And at the time, it was. That’s even what I told many parents of children with CLOVES.
But here we are. Things have progressed, and I happen to be attempting to come to terms with something I thought I already came to terms with years ago.
I do my best to stay positive, but I get weak sometimes. I do my best to act as a role model for children with CLOVES and a source of information and support for their parents, but everyone has their breaking points. Especially me. After this next round of medical complications, I completely broke down. I didn’t break down about the current issues I was having, but I broke down for the future that lies ahead of me. I’m only twenty-two years old, and I’m already coming face to face with something I thought I wouldn’t have to face ever again. I thought my body was done being put through hell. But now that I think about it, I realize that I had only hoped my body was done being put through all of this. I knew there was a great possibility that things could get worse. I just never thought they actually would.
Talk about curveballs getting thrown at you. I knew I may have had this coming for me, but I just hoped to God it wouldn’t. Just recently, I was speaking with my mom about all of this, and I asked her with tears in my eyes, “Does this mean my foot could grow more anytime in my life? I thought this stuff ended when I stopped growing.”
“No, unfortunately, it doesn’t end,” she replied.
It doesn’t end. That is what I feared all along. The complications, fears, and difficulties do not end. We have to live with this for our entire lives as people with a CLOVES diagnosis. I’ve spent so much of my time trying to calm the nerves of the parents of beautiful, glowing children diagnosed with CLOVES, but it is hard to do that.
However, in a way it can end, if you stay strong enough. We are always going to run into medical problems as long as we are on this earth, but we don’t have to let it slow us down. We can break down as many times as we need to, but we don’t have to let it consume us. We can beat this fear by staying strong and as positive as we possibly can. It will get hard at times. My God, will it get hard. But we didn’t go through all of this in our childhood just to let it defeat us as adults. What we overcome as children makes us so undeniably strong that there is no way we can’t handle more as we grow.
At my most recent breaking point, I found myself sobbing simply about the way things were. I wasn’t crying about my medical problems or how I’d deal with them. I was crying about the future. I was crying for these beautiful, loving, radiant children that may end up going through what I went through. Because this can be a harsh world. At my weakest point, I was terrified for the children who might experience the same struggles I did. As much as I don’t want them or their parents to fear for their future, sometimes that fear is inevitable. We will all have this fear, but do you know what else we have? Perseverance. Strength. And most of all, hope. If I could get through the worst of it, I know these children can. I’ve seen their smiles, their accomplishments, and their unwavering joy as they live their childhood to the fullest. Seeing that, I am confident that they can get through any curveballs life throws at them, especially anything CLOVES related.
Though I may have experience under my belt, I can’t promise an easy life to these children and tell their parents that everything will be stress-free when they grow older. But I can tell them that they have some of the strongest children in the damn world, and there is nothing that they can’t overcome.
What I’ve realized recently, and what I’d like to put out there to CLOVES parents, is that there will be breaking points. As much as I’ve tried to say things get easier, I can’t deny the truth. There will be bouts of weakness, tears, and pain. But if I know anyone that can get through hard times like this, it’s children in the CLOVES community. I’ll be honest; rare diseases suck. They are not easy to live with. But they are conquerable. While there may be hardships periodically throughout our entire lives—childhood and adult—they aren’t anything we can’t overcome. They are able to be defeated, and by God, will we defeat them as we face them throughout this unpredictable life.