“It’s time for that to end. I want to start living.” An essay that exemplifies the fear many of us struggle to manage in the face of potential life-changing truths…
by: Sapphira-Star Carrier
Ever since I was eight, I’ve had big ambitions. First, I was going to be a Timotheé Chalamet level actress, living it up with fellow A-List actors. As that dream fades and I’ve grown more accustomed to reality, I want to be a writer. Acting is still my dream, but I’m an adult now. Practicality. The truth is, nothing I have ever wanted has been practical, and I highly doubt anything I’ll want in the future will be either. My mom once told me the meaning behind my first name. “I named you Sapphira-Star because I always knew you’d be a star, someone great!” I cringe just contemplating those words. Yet still, I reach for the nearly unachievable, because I need to prove to her that I will be someone great.
I was thirteen when I found out that I might have a deadly disorder called Huntington’s disease, which causes degeneration of the nerve cells in your brain. It’s not something you want to hear at any age, but especially not when you’re young and have just entered puberty with a million misplaced hormones raging around inside of you. After hearing this earth-shattering news, I went home and did some research.
In the early stages of Huntington’s, the individual remains largely functional. They can typically work, drive, handle money, and live independently. Some early symptoms may include minor involuntary movements, subtle loss of coordination, depression, irritability, or disinhibition. In middle stage Huntington’s, individuals lose the ability to work or drive, and may no longer be able to manage their own finances or perform their own household chores. They can eat, dress, and attend to personal hygiene with assistance. With this comes the increasing difficulty with voluntary motor tasks. In the late stages, individuals require assistance in all activities of daily living. They are often nonverbal and bedridden, but some people with Huntington’s seem to retain some comprehension. Psychiatric symptoms may occur at any point in the course of the disease, but are harder to recognize and treat late in the disease because of communication difficulties. Basically by the end of your life, you’re in a vegetative state.
In my dazed state with logical reasoning being sundered from my brain, I came to the conclusion that I was going to die. Strangely enough, I’ve always had the feeling that I was going to die a young, unnatural death. Learning I might have Huntington’s just confirmed it in my confused mind. I ran to my mom crying, telling her everything. All of the research I did, symptoms I was already showing, and more.
I had never heard her be so angry at me in my entire life.
She nearly screamed at me, telling me to stop wishing death upon myself, upon her baby, that I would be fine and I needed to stop being so pessimistic. I didn’t know how to react other than to walk away as I heard her quiet sobs behind me. In my brain, I did the right thing. I did my research, I read numerous pages from different sources all about Huntington’s, I even read pages written by people who have Huntington’s to see their perspective on how it affects their lives. I would ask what went down in my mom’s brain that day, but she has a habit of conveniently forgetting every time she’s yelled at me for something that isn’t my fault, so I know it would be in vain. But I think that to her, it wouldn’t be long before she was prepping for my early funeral.
After that, we barely ever spoke about it. On the very rare occurrence that we’d talk about my biological father, which was mainly me asking questions and her reluctantly answering, all I got from her was dagger eyes anytime I got close to mentioning him having Huntington’s and potentially passing it on to me. You would think she was the one who this was happening to and I was prying for her medical information.
I’m twenty now, and I still hardly know anything about my biological father. One of the most frequently asked questions I get from anyone I talk to about my situation is what I know about him. The truth is that I only know the bad things that he has done, and I’ve never tried to see past them. I have enough bullshit going on in my life, and getting to know him would give me a bigger headache than it’s worth right now. I also think that deep down, a part of me knows it’s easier to continue to view him as the villain of my life, rather than give him the benefit of the doubt. I don’t want to know him. I don’t want to meet him. If he remains the man who tried to hook up with a fourteen year old at twenty-six and in a relationship with my mother, the man who got so mad at his other baby mama for breaking up with him that he shit in her pillowcase, and the man who is just an all around bad guy, then I don’t have to feel guilty for not wanting to know him.
The only way I learn certain things about him is through his Facebook account. A couple of months ago I was stalking his page and saw that the Huntington’s had been hitting him pretty hard. From what I could gather from his cryptic posts, he is losing some of his motor functions. That’s all I could learn without actually reaching out to him to ask how he is, which would be an absolute last resort for me. I have things that you could count as symptoms of Huntington’s, depression and anxiety, stumbling over words and having moments where I need to actually think before I speak. When I was younger I would fret over these things, automatically attributing them to the Huntington’s I may or may not even have. Of course I still wonder if they are byproducts of it, or if I just have them because they run in the family. I’ve somewhat managed to calm myself down from jumping to rash conclusions, but I still have my days where I’m convinced I’m dying slowly.
At this point, you must be wondering: why don’t I just solve all of my problems and get tested.? Trust me, I’ve asked myself that question many times. Herein lies the issue:
I’m terrified.
On the one hand, if I get tested and the results come back negative, I’ll finally be free and I can live my life without constant fear of my future self. But knowing my luck, it’ll come back positive. Of course there are benefits to knowing if I have it for sure, but I’ve never been good at focusing on the positive side of things. If I found out I have it, I could start early prevention techniques to delay the onset phase. But then I would also know I’m going to reach a point where someone has to feed and clothe me, and I won’t be able to do so much as wipe my own ass. I don’t want to live like that.
Then there’s the issue of children. Anytime I think about my future, or what little I’ve envisioned for myself at least, I always have pictured me as a mother. I hate buying into traditional gender roles, but I can say the one stereotype I fall into is the born-to-be-a-mother trope. I love children. I work with them because I feel like I’m able to restore the childhood I don’t remember much of. My baby niece is my purpose for continuing to push myself through school and become the best version of me I possibly can be. If there’s one thing I know for sure, it’s that I want to be a mother. If I have Huntinton’s, then it would be incredibly selfish of me to run the risk of passing it along to my children by getting pregnant. I refuse to intentionally make another child go through what I am experiencing with this. I’ve always been open to adoption. In fact I’d prefer it. Blood or not, I will love my child unconditionally. But whether or not I have a child myself or choose to adopt, if I do have Huntington’s, then I’ll eventually be leaving them without a mother, and that thought horrifies me.
My mother and I have always fought on the topic of me getting tested. She’s always wanted me to, but our insurance won’t cover the expenses. Typically, the process involves seeing a genetic counselor first, to make sure you are making the right decision for yourself. Then you can proceed with testing. While I don’t have a genetic counselor, I have talked about this many times with my therapist and she always says the same thing. It’s my decision. No one gets to choose for me whether or not I get tested, no matter how much my mother will try to push me to. But I just feel so guilty. Not because of me, not because of my future, but because of my mom.
She has herself convinced that she’s the reason I don’t want to get tested. When I was around eighteen, I overheard her on the phone with my aunt talking about my situation. Yet everything she was telling my aunt was contorted to her jaded point of view. She told my aunt that I was deliberately choosing to not get tested because she wants me to, and if I found out I had it I would blame it on her. It took everything in me not to burst through the door and confront her, but now I sort of see what she means. I could potentially blame her if I tested positive. She had a child with a man that has the disease, knowing what the risks of a person with Huntington’s having a child could entail. But the thing is, she didn’t know he had it, so it’s not her fault. And as much as I may hate to say it, my father is not to blame either. He was told by his mother, who also has the disease, that he tested negative and therefore doesn’t have it. It was only after he had four kids, me included, that she confessed she had lied and he actually does have it. So the only person who’s really at fault here is his mother, not mine.
Halfway through writing this, I called my mother to talk. Writing about this isn’t easy for me, but thinking about it with no support is even worse. Her advice has always been the same:, “It’s better to know than to not.” Some part of me knows she’s right. Logically, it makes the most sense. But this time, in addition to those same words, she threw in something else.
“Your problem is that you’re worried that if you find out you have it, you’ll focus on that and fall into a depression that you can’t get out of. Am I right?” Is she right? I knew that for a long time, but I had never heard it said out loud before. I had to physically fight back the tears forming in my eyes upon hearing those words. I wanted to scream back, Yes, mama, I’m afraid. I don’t know if I’ll be able to drag myself out of this one. Instead I choke back the ball in my throat and simply say, “Yeah.” “Then don’t focus on it. And don’t become an alcoholic or a drug addict because of it, either.” The first part is easier said than done. But this time, I’ll give her the benefit of the doubt.
I’m twenty years old. I’ll celebrate my twenty-first birthday in July. That’s twenty-one whole years I’ve lived, and eight of them I’ve wasted in fear of the future. It’s time for that to end. I want to start living.
I want to act again, ride my horse again, travel the world writing and have fun doing it. Huntington’s or no Huntington’s, I can’t let it stop me from living a full life. If I am condemned to die at a younger age than most, then there’s nothing I can do to change that. There’s no cure for Huntington’s. There’s no cure for death. But there is hope, and that’s all I can do. Hope my future proves me to be someone great. Hope that I can someday be a mother and be a damn good one at that. Hope that one day, when I’m frail and on my deathbed, I won’t be afraid anymore because I’ll have lived a good life.
In case you’re wondering, I still haven’t decided whether or not I’ll get tested. Maybe I never will. But that’s okay. I am still me, with or without a diagnosis. I still have control over who I choose to be at this given moment. Who I choose to be is a good role model for my younger sisters, the best auntie to my niece and future niblings, and someone who appreciates the beauty in the life I was given. My life is mine to seize, and day by day, I’m getting there.
Header art is entitled “Eyes of Huntington’s” by Kathy Gibson Kathy Gibson.
Sapphira–Star Carrier is a junior at Emerson College, majoring in Creative Writing. She has been writing short stories and poems since she was ten years old, and is pursuing a career in travel writing. Though her specialty is fiction, she has been testing her boundaries to see her writing and herself through a non-fiction lens.
