This is Olivia’s story. She tells it with honesty and courage. Few stories better convey the conflicts, confusion and challenge of living with a rare and chronic disease. In Olivia’s case, a disease that has caused heartache for two generations of her family. We are grateful to Olivia for being so open and truthful in her generous narrative.
I Am Olivia
I like to think that throughout my life I have more or less done my best with what I’ve been given. My best cannot always be the best-but that’s okay. Recently I have come face to face with some significant self- discovery. Thus leading me to a number of topics and feelings that are, to me, less than comfortable to face up to.
My name is Olivia, I am a part time college student/table busser/eighteen year-old hopeful. Sometimes it feels as though I am full time Neutropenic/anxiety ridden/barely existing half-human. As far as the chronic illness goes, I was born with Cyclic Neutropenia, of which I inherited from my father, John. My grandparents had three out of five children, all sons, born with Cyclic Neutropenia. Two of them, Matt and Louie, died in their later teens.
My father and I started on GCSF, Neupogen, “the juice” just about a year apart. It must’ve been 1996 when I started receiving injections daily. My parents had been reluctant to have me on the medication. I think mostly due to imagining administering to their first born infant a poke with a needle every night. But when after a year or so of being alive I had been frequently hospitalized and treated for infections and jabbed with butterfly needles into my tiny veins, they decided that since I wasn’t getting better the medication was a good idea. I’m thankful they did. I’m also extremely thankful more and more for the NNN and their vast abilities to make something collectively positive out of the excruciating mess of disease. I see the faces of Audrey Anna Bolyard and such like Lee Reeves, both of whom I have known since before I can remember. I know they and the other doctors, researchers, event planners, etc will always hold a special place in my heart. I truly do not know where I would be were it not for their advancements and painstaking care for human life. I do know that to have been a part of something so important and to have met and known some of those most outstanding individuals is an honor I hold dear.
Growing up sick wasn’t all bad. I could talk for days about the suffering I’ve felt in my body and my heart. Everything I struggled with growing up I still struggle with in my life today. Keeping friends is still hard, (partly due to my social anxieties and introverted tendencies) in that often I don’t want to hang out. I don’t want to text or socialize. I’ll feel tired and achy. Which is nothing against any of my companions, at that point it’s about me and really what I need. I’ve missed out on a lot of social events, field trips, school dances. I couldn’t have a job until after I completed high school, and even keeping up with that’s hard. It makes prioritizing a mandatory skill. Often I’ve taken things out of my schedule to make room for getting better physically and mentally. I’ve noticed how the cyclic part of my life has been prominent in my day to day obstacles as well as my blood cell production. It seems as if I will fall sick and have to drop everything that I’m working on, during which I fall behind on my life -school work, mostly, but also prominently I fall behind on my medications which result in even more pain and another cycle all over again later. By the time I feel better I have mountains of work to complete and a deluge of tasks, friends, chores, to catch up on. When these feelings of being overwhelmed completely shut me down, it feels like the hardest thing in the world to get even a chapter of homework done. So I spiral into the next phase of my emotional cycle which is just me not doing my work or taking my shot, because it scares me and I’m afraid if I attempt to pick myself up I will fail. It feels too hard. Eventually I do pick it back up and get my crap done, and it’s not ever been as dreadful and titanic as my mind says. Currently I’m working on the getting back up part. I just haven’t worked out how to get past that ending rut in a timely manner. Usually when I finally do get back in the swing I’ve missed out on even weeks of activities and important functions, which takes its toll. When I miss out on so much of life, my life, it hurts me. I wonder if I’m a real person or just a useless, needy sick person. Which I’m not. I’m not sick all the time even. Sometimes it’s like I don’t even have Neutropenia because I feel so healthy and strong (which can also make it all the more crushing when I hit my low cycle again). And I have to remind myself that it’s okay to have things in my life to overcome- everyone has them. When I’m not feeling cripplingly immobile, I’m confident that I will conquer them.
I have things I’m proud of as well. I’m proud to administer my own shot, something I had my parents do for me until I was seventeen years old. That was something I had to work to get past and I did. I’ve graduated high school on time, something teachers, deans and my parents were alternately unconvinced I would do. But I did. And I worked hard, even during the summers in order to get everything completed. I get so caught up in putting myself down and convincing myself I’m useless, when really I’m not and have never been. My disease does not make me any less of a human being, and it does not stop me from following through with my goals. When I was little I wanted to be a ballerina but was told I couldn’t because ballerinas couldn’t afford to get sick and miss rehearsals and recitals. So I didn’t become one. But I wish that I could tell myself how real and possible dreams are for even the chronically ill. I wish I could explain how endless the possibilities are, because I’m not limited. I’m full of joys and talents and capability. I weep for my childhood self, for the doubt I’ve felt toward me and who I could become. Now I open my arms and feel endless power and strength. I’m already more than I ever thought I could and would be, and I know my future is going to be even greater. I’m more than my disease, and I wish I could feel so all the time. Life confuses me more and more the older I get. I’m still trying to understand how there can be so much pain and suffering in the world, in one person, all at once. I use the terms “sometimes” and “I think” and “it seems” because they are not absolutes. I used to tell myself the only consistent thing in my life was inconsistency. Getting through a month is like being a dancer, pivoting and leaping to changes in my environment and how my body is feeling. Beyond my obstacles I will grow and I will flourish and maybe someday I will understand why things are the way they are. For now I’m still working on a number of things, but mostly I’m working on knowing I’m okay and that I’m good enough and that I am more than just Cyclic Neutropenia. I am Olivia.
