In the first installment of her column, Noa Karidi writes about the fluctuating conditions she lives through as someone with a dynamic disability, and how being “okay” looks different every day.
If you’ve ever had the flu, you’ve experienced the extreme desire to “be okay.” As you’re sitting at the edge of the toilet bowl with your throat burning, mouth tasting like death and your nose running, you can’t help but wish to feel okay. You don’t wish for great when you feel terrible because okay feels a world away, especially if you’re trying to get work done and move forward as your body feels like something foreign and outside of your control.
Living with the dynamic disabilities PolyJIA — an autoimmune condition that attacks most the joints in my body — and dysautonomia/POTS — an autonomic nervous system dysfunction — means that I often have days where I cannot help but wish that I felt okay. Being dynamically disabled means having a condition that routinely fluctuates. I rate my days from good to okay to bad to really bad to awful. Awful usually means I’m not leaving my bed, while good could involve a two mile slow walk in nature. Most days are okay, where my pain levels are around a 5/10 — I can stand without support and when I tell my body to do something, it listens.
Bad days are also pretty common — days when everything hurts a bit more, my body moves with delays, I need my forearm crutches and I use a mobility scooter to go places. On bad days, I live my life like an okay day, but with less energy. I might grab clothes without aiming to look cute, because even if I look in the mirror and don’t feel cute, I don’t have the energy to change. I’ll pick and choose the work I do or the social activities I engage in. I’m more aware of my actions and extremely conscious of every decision I make. Yet, those days are still functional. They’re still pretty good. They’re adequate.
It’s on the really bad days and on the awful days that I can’t help but wish that I was okay. Good feels too far away, and often I would even accept bad. I just want to not feel terrible.
As people, throughout our lifetimes, we have enough hope and dreams to reach for the stars. But in our day to day, when we are really feeling awful, we just want to reach okay. For every person, okay means something different. As someone with a disability and chronic pain, my “okay” might send someone else to the ER. That’s fine. What’s important to understand is that with chronic illness, I spend a lot of my time wishing for and striving for “okay.” My lifestyle is built around trying to get to or remain in the “okay” category. Being disabled sometimes means waking up in the morning and failing to get out of bed because you just can’t. So if I’m not there, don’t worry. I’m just trying to get to “okay.”
I think, in some ways, we all are just trying to reach “okay.” So, let’s give ourselves some grace and know sometimes we can’t reach every goal or achieve our desires right this moment because we are human. Sometimes we are not okay and sometimes we don’t feel like reaching for the stars. On those days, reaching “okay” is just as good.