"I imagine death so much it feels more like a memory"—a line from the musical Hamilton. Alexander Hamilton ran out of time. And there is a chance I do too.
Now, that does sound scary.
But the reality is, it's not just some thought I have once in a while. It's something I carry with me every day. My health conditions have taken so much from me—my mobility, my energy, and a lot of the certainty I had for my future. I wonder how many more steps I'll be able to take before my body says, "enough." How many more breaths before something goes wrong with my heart again? As I write this, I have a device monitoring my heart.
I'm 21 years old. Most days, I don't feel young. The truth is, it's hard to know how many more days I have before a serious accident or organ failure. My spine, my feet, my ribs, my fingers—they've already shown me how little it takes for them to crack under pressure. Two minutes of walking with my cane leaves me in excruciating pain, and each step is a gamble. Then there's my heart. An SVT episode a few days ago reminded me how vulnerable I really am. It was a jolt—both literally and mentally—that this could be it. Although SVT episodes aren’t heart attacks, they usually mean something is wrong with the heart. If my dysregulated immune system is attacking my heart, it could lead to heart failure. My liver was attacked by my immune system last year. It got to stage 3 before remission. Stage 4 would have been critical.
There's this overwhelming sense of not being able to plan for the future because I don't know if I'll have one. How am I expected to learn and attend school, knowing that any day could be my last?
Despite all that, here I am, writing this. Because I haven't given up hope, and I don’t plan to. It’s true that I might be running out of time—but I'm going to keep doing what I can to make the most of it. I plan on attending college again this upcoming term.
I have been in talks with my family doctor regarding MAiD (Medical Assistance in Dying) within the past few weeks. Although it's not something I want currently, as I feel I’m not ready to die, I plan to reassess my situation in 2027 and see where I’m at regarding pain and independence.
I will be starting Ozempic in a few weeks, out of pocket. Due to the weight I’ve gained from depression and lack of movement, I need to lose weight to feel better and put less stress on my bones and overall body. I also take a BMD (bone mineral density) test next month, to see if my bones have improved after a year of treatment. If they have not or got worse, I am in trouble.
Here is me currently.
Thank you everyone for the continous support on my health, and the well wishes. I hope to give good news soon.
Alex