Here I am, writing a blog for everyone, baring my heart and soul, and yet I want to hide when describing the basics of myself. Hi, I’m Sami. If you’ve been to any NHF event in the last two years, I’ve been around somewhere. I’ve been fortunate to be a part of NHF’s National Youth Leadership Institute (NYLI) and am the current co-chair.
I’ve thought about the different ways I could describe myself. What I didn’t want to say: “I’m 24 and have a clotting disorder.” But that’s how I’m going to start things off regardless. It’s good to throw oneself into the deep end of the pool at times. My friends talk with ease about their bleeding disorders, even to complete strangers. It’s still a process for me, and I realize that writing this is helping me grow.
I recently heard of other young clotters struggling, and it occurred to me that more often than not, I put on that “brave face” and tough it out. If I’m not feeling well, I hide. I’m not a consistent ball of energy, and I have struggled and do struggle to balance all of this. I never let that struggle be known, and that does not benefit anyone. That just makes me one less person they can identify with, and I am now ready to not be ashamed of me.
Being in my 20s feels much more difficult than sorting out my teen years. Shouldn’t I have figured it all out by now? But I’m far from that. I worry about whether people I meet will be OK with all of this. Also, with all of this health stuff, I don’t want to get left behind while everyone else's personal lives and careers move forward.
I’m a clotter. I do not have a bleeding disorder. My clotting disorder is believed to be antiphospholipid antibody syndrome. It is autoimmune in nature and is usually treated with anticoagulants. Unfortunately, I have not responded to any treatment and have continued to develop blood clots. This is probably part of the sore spot for me—the out-of-control nature of it all. I’m not going to lie, it can be scary.
Since I am still on anticoagulants to try to at least curb clotting episodes, I am prone to bleeds. I guess I am sort of bleeder-like. Actually, at the Annual Meeting in New Orleans in 2010, I was very close to being taken to the local ER with rather large bleeds in my legs. I have a pretty amazing new hematologist who is trying to sort all of this out for me, and hopefully, eventually, I won't have to worry as much about clots. I have a myriad of other health issues that have been (somewhat) present since birth, including the suspected primary immune deficiency, which is believed to have caused numerous infections. But I have a sunny disposition and good sense of humor to balance all of this out.
The world around me has not failed to lose its magic. I think it was supposed to fade somewhere around my preteen years, but this is how my life is:
“Oh my gosh, a mountain!”
“Oh my gosh, a state I’ve never been to!”
“Chocolate cake!”
Yeah, I get excited pretty easily. I’m happy about this, though. I’d rather choose magic over cynicism.
I love sloths. I went to the zoo for my 24th birthday just to see the two-toed sloth. Someday, I would love to go to Costa Rica to visit the sloth sanctuary, if my health allows. I’m very musical. I sing, play drums, play piano, but the instrument I’m most fond of is the ukulele. I currently am the proud owner of three ukuleles.
I’m in the process of having a banjolele custom-made. I’m convinced that if it has four strings (or less), I can play it. I wish that sloths played ukulele so my interests would be more fascinating and lively. I dance when I hear music. I make up songs about the most mundane tasks. I read hundreds of books a year. I like autumn and cannot go a day without coffee. I continuously try to find ways to reach out and give back because I’m pretty sure that’s the best feeling in the world.
For the time being, I reside with my parents. They’re pretty great. I’m itching to move out, but I’m taking baby steps. I have two dogs, Mimi and Tessa, and a rabbit named Beckett. My best friends, who I will continually mention, do happen to have bleeding disorders. They are Shelly and Joe, and I truly do not know what I would do without them. I love the many NHF adventures we’ve been on. We once all flew on a plane together. It was the best two hours of my life. We also happen to have color-coordinated outfits in most of our pictures, which is just bizarre. They are everything to me. I talk to at least one of them every day. They’ve gotten me through a lot, and that is what is most important in life—people you can count on.
I hope this blog will give an honest look at how things are for me and at the daily lives of my NYLI friends. It’s important to me to be as personal as possible. I don’t want to give the impression that everything is easy, or that every challenge is impossible to overcome. I keep moving forward, and I’d like to take you with me. This is the world through my eyes.
About this blogger: Wisconsin resident Sami Jankins, 24, is co-chair of the National Youth Leadership Institute and runs a small nonprofit that provides access to the arts for chronically ill children. She primarily has a clotting disorder, but has had difficulty getting diagnosed and finding a treatment that works. She is on NHF’s Victory for Women and Steps for Living task forces. Her interests include music and sloths.