Hello. Its been a while since I’ve written here, but I had an idea for a blog post while trying to sleep.
Going to school with chronic illness can be challenging. I got sick my sophomore year of college and though I wasn’t as sick at that time it was still very hard. Somehow, unimaginably I made it through. I graduated from college with honors and I am very proud of that.
Still, now I am playing on a different level. I am in graduate school to become a rabbi. I perhaps want to do chaplaincy or become a Hillel director. This is something I’ve wanted to do long before I got sick. But it’s been so hard. Last year I didn’t complete the year, I was so sick I couldn’t physically be in school anymore. This year I started over but I didn’t finish my classes last semester because I had neck surgery. Since I started at my rabbinical school I’ve had 7 surgeries.
My memory is shot, I have trouble sleeping, I get so tired in class, I don’t have a lot of physical stamina and I am in constant pain. You try that while trying to memorize rabbinic Hebrew vocabulary.
Recently the reality of my illness was made very clear to me and my future. My dad mentioned how he had also thought of what happens when I get too sick or too financially unstable to live on my own and have to live with my parents. It seems like that day is getting closer and closer. My cardiologist expressed concern because I have had fainting spells at home and I live alone. What if I get hurt? What if I fall? Or fall out of my wheelchair while transferring?
24/7 aides are an option but I still have 0 financial funding from the state to pay. My apartment is also very small.
But I want to finish school, I want to live. But the reality is not always compatible with desire. My reality is that I continue to get sicker and sicker. I sometimes have trouble breathing even. Each system in my body slowly is shutting down. I don’t think I am going to die, but I also don’t think my life will be the way I imagined.
I expressed my worst fear to my therapist recently. That I die of sepsis. I have had sepsis twice in the past year and one of the times it started to shut down my kidneys. 1 in 4 people who have sepsis don’t survive. I know it seems morbid, but its a fear I carry with me. I seem more susceptible than others I know with central lines, which makes me even more scared. This is my reality.
I am a disability advocate, I am proud of who I am, I am not ashamed of my chair, or think my life is not worth living. However, if I could take this away, I think I might.