What matters most

what illness helps us touch :: ORIGINALLY PUBLISHED FEBRUARY 19th 2024

Dear soft heart,

One thing chronic illness has taught me over the past 16 years is a lot about what matters most.

At first, I did not get it. I was a teenager when I got sick - preoccupied with hiding my illnesses as much as I could, I still wanted to fit in and belong and matter. I could not do so much of what my peers were doing, and this always made me feel like a failure. I got introduced to grief and learnt to co-exist with it - making it through small and big things and having to give up being the same entirely as those I wanted to belong with. However, even though my attempts at grieving what I wanted my life to be like, and accepting what it actually was were genuine, I could not stop myself from trying to assimilate as much as I physically could anyway. I tried for so many years, especially my late teenage years and my early twenties to be amazing despite being sick.

Between my autism and the co-morbid conditions I lived with, I had the genius compensatory idea that to make up for being a burden on this planet (by existing) that I would serve it as much as I could. I always wondered what it would be like to have an experience in which being alive did not make you feel guilty. To make up for the extra needs I needed, I decided I would be formidable. To earn your belonging on this earth through service and devotion is perhaps altruistic, but it is also incredibly anxiety inducing, and perhaps, even sad. I never really got it until recently when someone would say you are inherently worthy. I never really knew that there were some people waking up and going about their days, not worrying or feeling angst like I was. I guess I had projected that everyone felt the same way I did. It blew my mind to some degree that some people actually felt a healthy sense of entitlement about deserving great things consistently. Meanwhile, I felt that I had to earn my existence because of how burdensome it was to love me.

For a long time, I always wished I was someone else, someone who did not have the illnesses, the sensitivities, the disorders, the issues, I have.

For most of these 16 years, I had lived only really feeling distain for this experience. Jealously, despair, fear, isolation, those things were the norms.

It’s only been recently now that I have come to notice that illness has also given me blessings, and has not only stolen from me, but actually yes, given to me things - perspective for one.

Illness has a way of showing you what matters most in this life - love, being the most important one. I have found, personally anyway, that it is really true that there is nothing that matters more than love. In this culture though, love is not always prioritized, and I think if it weren’t for illness, I wouldn’t really consider it or value it the way I do. There are things that I have learnt early, and so I have not wasted as much time as I could have if I hadn’t been ill, and if illness wasn’t making everything so dire, and inspiring me to take action.

When I decided to get off social media almost a year and a half ago now, I did it because illness had given me the perspective that we do not have forever, and that time doesn’t come back. I did not want to get to my death bed and realize that I spent most of my adult time on a screen, scrolling, consuming. If it weren’t for illness, I don’t know if I would fully grasp this. I know now how to be in the present because it is among the many things illness has given me. I wrote a memoir even though I was terrified to, because I know I won’t be alive forever.

Sometimes the things that make us the most vulnerable make us realize our humanity the most, and at that point, we get to be courageous, as we get this special access to touch the centre of ourselves. When we see, hold, and know who we really are, and what we really desire, and what we really think, and who we really love, what matters to us the most, this gives us something so rich to be with. We get to be fully alive when we are in connection with ourselves like this. And we protect the things that matter most to us, because we realize how finite we really are. We don’t wait, we just… live.

I may be sick, but I am so alive. That didn’t happen just because, it happened because illness taught me how to be.

On a good day, august 2023