If your fate were determined, would you chase after it or run from it?
Back in January when I restarted my journey into philosophy and content creation, I picked up a book on Free Will and Determinism. For a week straight, I tried to decide if I believed in free will or if determinism/fatalism were a more likely scenario of the human existence.
The example I use to understand fatalism is this: An all powerful being appears in front of you. They speak to you and inform you of your fate. According to them, everything is already scripted, from what you’ll have for lunch today to the day you die. They tell you there is nothing you can do to change the outcomes. So what do you do?
This belief may elicit feelings of dread within you. This being has stripped you of any free will you once thought you had. If everything is bound to happen no matter what, why should you do anything at all? Considering this is not a joyous experience for me, it’s honestly quite depressing. There is a sense of pointlessness behind every action, a loss of any control, and no longer any curiosity.
There’s the story of Oedipus, a boy told by an Oracle that he would one day murder his father and sleep with his mother. Oedipus decides to do everything in his power to prevent this fate. In the end, his actions created the reality he so desperately tried to run from.
Would you try to run from fate like Oedipus? Maybe then you’d at least feel a sense of free will, like you were choosing to go against the prophecy, even if you weren’t. Would you give up? Or maybe you’d accept your fate and choose to move towards it with grace.
The good news is, there have been no close encounters with all powerful beings (not that I’m aware of) and thus no insight into the fate of your life or humanity. Until that day comes, you have no idea what the future holds. The only fate you can be certain of is your own mortality. My belief is that whether the fatalists are correct or not, the best course of action is preparation. If death is the only fate you are held privy to, be ready for it, so when that day comes, you have no regrets and can leave virtuously.
In this blog I’m going to share a story of what I feel is the closest interaction with a prophecy I could possibly experience. I’ll also share more about how I “prepare” for my fate, so I’m ready for whatever happens.
As always, I don’t have all the answers, but I hope my expedition to try finding them in my life inspires you to start the search in your own.
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The Cure
My yearly visit to the genetics department at Golisano Children’s Hospital put me face to face with a reality I never thought possible. As I sat there, surrounded by my doctor, two nurses, and a med student, I felt eager to leave. Doctor’s appointments have always been tedious for me, but necessary considering my unique circumstances. Even though I thought my being there was pointless, I answered all their questions and made note of any concerns or desired next steps.
At the end of the appointment, my doctor said, “I’m sure you’re aware there is a phase one trial in the works for your disease. They’ve started testing a cure in humans.” No, I was not aware.
Since writing a blog on hope – read it HERE – I’ve had multiple instances where my perspective on hope has been put up for debate in my mind. This moment was one of those times. The thought of one day being released from the embrace of my disease brought with it a sense of temporary hope. My breath caught in my chest for a brief moment as my brain tried to weave an image of a life without Hurler-Scheie. With the exhalation of my hope, my thoughts were once again grounded in the moment.
My biologist brain kicked in. The doctor answered all the questions my curiosity could come up with and I formed a more tangible understanding of the situation. Researchers are testing a cure in humans, a virus works its way into the cells, the enzyme my body is missing is now produced within my cells, the enzyme breaks down the complex sugars that have been building up, no more weekly treatment is necessary, just time.
The doctor also suggested I do not become a subject in these phase one trials because if it does not work, there’s a risk of my body becoming resistant to future trials. With this suggestion, acceptance floods my system. My disease and I will continue living in harmony for the foreseeable future. “I’m in this for the longhaul.” I say to the doctor. “I’ve had it for 29 years and assumed I always would, so I’m in no rush.” The four of them exited the room, unaware of the impact they made on my thoughts.
That moment became this blog. A beautiful butterfly rests in the palm of my hand. I do everything I can to stay still, to not scare it away. So much intricacy, uniqueness, and wonder are held within the colors of the wings and I want to take it all in for as long as I’m allowed. There’s a fragility that frightens me. The slightest breeze could strip me of this moment. For now, I will give it all the appreciation I can muster.
Losing a Part of Me
My disease is responsible for many habits and beliefs that I am grateful for. I have so much to thank Hurler-Scheie for and what I touch on here will only scratch the surface.
I’m grateful towards my disease for instilling in me a sense of urgency. I realize I wasn’t supposed to live past 13 and every day that passes feels like I’m trying to evade the Gods like Sisyphus. There are times when I worry I won’t be offered a long life. I often wonder how much longer my body can fight off this disease. Is this medicine working or am I wasting my time? This disease has written “Memento Mori” into my DNA, and for that I am grateful.
I’m constantly reminded that life should be appreciated, that death could appear at any time. That life should be lived intentionally. Death has the power to remove any chance of you correcting your mistakes of character. Life offers you the opportunity to be whoever you want to be and do whatever you want to do. Death puts the final nail in the coffin on your character and your activities. Is the person you are now who you want to be? Are the things you’re doing what you want to do for the rest of your life if it were to end sooner than you hoped?
My disease has made this constant observation of my choices and habits enjoyable for me and worth the struggles. There are things I want to be remembered for, a description of my character I’d like people to have of me. So every day I’m offered, I try to remind myself how much of a gift it is and be grateful for another opportunity to be the person I’d like to be remembered as being.
Losing my disease would be like removing an impulse. An impulse is an unconscious response to a stimuli. My impulse is to work hard at being a good person, to take care of myself, and to pursue something bigger than myself. This impulse is stimulated by my disease, so any time I’m reminded of it, Memento Mori crosses my thoughts, and I check in on my character traits and habits to see if improvements can be made.
Just like any other impulse, if you make it conscious, you can see it’s cause, then change the habit if you feel it doesn’t serve you anymore. So now I’m aware of my impulse and I see the cause being my disease. If I remove the disease from the equation, like removing a false core belief from childhood, would I still perform this habit? In this scenario, even if I was cured and had no disease to remind me of death, I’d still always keep the impulse associated with it, but now the cause would be because I choose to live that way.
I don’t know if that made sense at all, but it felt good writing it.
Parents
Hearing the news of a possible cure also made me incredibly grateful towards my parents and for how they raised me. They could’ve given up all hope when they heard my diagnosis, but they didn’t. They could have sheltered me from the world, told me there was no point in trying to fight the disease. They could have discouraged me from trying certain things because of my disease.
I could’ve believed I was meant to stay unhealthy, to feel like shit because of my disease. I could’ve stayed home all day, never bothering to explore a new hobby because I believed I couldn’t do it. I could’ve ended up incredibly sad and lonely because I never tried to accomplish anything or meet new people out of fear of my disease getting in the way.
Luckily, they didn’t raise me like that and I didn’t end up that way. They raised me to believe I could do anything, it just may be a little differently than others. They taught me how to advocate for myself and ask for the things I need. They encouraged me to pursue what interested me and continue to support all my endeavors. Because of them, I’ve lived a life that I’d be proud of even if I never had the disease.
I feel as though I have a distinct advantage if I am to receive a cure. I’ve already built the habits that promote my health and well-being, I’ve started pursuing hobbies that fill me with peace, and I’ve always lived like I didn’t have a disease, so losing it would be like removing the final barrier to my health, the one that would always be out of my control.
Had my parents raised me in any other way, I wouldn’t have tried to build a life I was proud of. Then, when the cure came, what would I have? I would’ve wasted all these years being lazy, feeling like shit, not meeting people, and letting the disease get in my way. But with a cure, now the disease isn’t in the way, so I’d have no excuse anymore, but I’d have to start from scratch.
So honestly, a cure wouldn’t really change much. At this stage of my life, if I was never offered the cure, I’d be content. I’ve believed there would never be a cure from the moment I was diagnosed. I’m mentally in this for the long-haul, so I strive to make choices that may slow the progression, stabilize the health variables I have a say in, and lessen the affects of my symptoms. If I have this forever, I’ll be cool with it.
If a cure comes, I wouldn’t have to do a four hour treatment once a week. Other than that, I don’t think a thing will change and for that, I’m proud and grateful.
If this is a goodbye note to my disease, I’d like to say thank you. Thank you for being such a major part in making me the person I am today. I’m so grateful for all you taught me and continue to teach me. I don’t know where i’d be without you, nor would I like to imagine.
September 6, 2026
