Chronic illness changes your life. In many ways it takes what you used to have and devours it. It is easy to have it consume everything you once knew, including your passion if you are not careful enough. You are thrown to rebuild a new life and at the same time being a person of color navigating the medical world can be devastating.
Who I am has changed but the core of my being hasn’t. I am still an activist, I am still a writer, queer, brown & beautiful.
Don’t get me wrong. I struggle. A lot.
But over time, (A LOT of time) I have had to learn and truly re-learn extremely important realities; to cement them in to my being in the hardest of times. If you are one amongst the many who have a disability, you may find these truths that I use as mantras, useful:
- I am good enough. My existence and being is good enough. Regardless of what expectations others have of me, they are not me. They are not in my physical body.
- What I contribute is good & a true contribution. Even when I feel it isn’t as good as what someone who can put in physically active hours, what I do makes an impact.
- I know myself best. Navigating the medical world is complex and often times downright discouraging. Even if a doctor looks at you with transparent judgement, there are countless other doctors.
- I am not alone. There are others with similar disabilities. In fact, there are so many people like me that there are communities.
- Self care is not self indulgence or laziness. It is literally a matter of prioritizing my health & life. Remember, you hurt yourself by pushing past what you are physically capable of. And this is very, very real. A reality that others may not be able to see in front of them but you understand daily because it is your existence.
- Pace yourself. Pace what you do even when you feel like you are being slow and you are being judged. Someone’s judgement of you is not worth being sick in bed for days if not weeks because you pushed yourself that hard.
- Friends are understanding and supportive. If someone is not understanding and supportive of your illness/when you are ill, they are not a friend.
I hope this helps anyone who comes across it that needs it.
Have you ever fucked around and tried to be a general ass to the driver in front of you by flashing your high beams over and over? Sure, you didn’t mean any harm because it’s just lights right?
Maybe one of your headlights was going out so you put on the high beams?
I barely made it home tonight. I’m still a little shaky as I write this, there is still a burning pain in my eyes and I’m closing this laptop as soon as I am done writing this down.
I normally have my glasses with me for when my vision blurs due to fatigue which is often due to chronic illness issues. Today was different.
I’d left my glasses in my mom’s purse when she was in the hospital this week and completely forgot about them. As I drove home tonight on the freeway, I noticed a car behind me with one extremely bright headlight riding the butt of my car.
I switched lanes because that light was so bright and my short economic car was directly affected in all mirrors by this large tall SUV.
They switched lanes as well. All three times. After the third lane change I tried to simply brave it out and keep driving. My vision continued to blur even more and I began to have a splintering headache. I got off on my exit thinking thank goodness, I’m going to be home soon.
They got off on the same exit. Same city.
They stayed behind me. By now, my vision was so blurred I just wanted to drive a straight line home since I know it by memory. I put my hand up and over the biggest mirror that was affecting me (rearview mirror). The person behind me noticed this and I suppose, found it hilarious so, they began to flash their high beams at me. Over and over.
When I finally turned in to my street I had my hand over the canister of mace in my pocket and I had my phone turned on. It wasn’t only becoming irritating it was a little scary.
Have you ever been in a situation like this? Have you been the perpetrator? Sometimes we do things without thinking of different bodies, literally. We don’t think about people who are differently abled.
I can only take so much stimulation & light. This act of what was probably hilarious fun for the driver behind me was frightening and physically harming to me.
I want to drink tea, stop shaking, close my eyes and hope the burning pain and strobe light shadows and headache subside.
I find it completely awful that someone would do this. It’s completely dangerous, not to mention creepy as fuck.
The high-beam flashing is horrible enough on its own, but even if you have the same fucking destination as the car in front of you, unless you and the driver know each other, DO NOT copy every move they make. Even if it’s just waiting a minute after they switch lanes to switch, it’s an issue of being considerate. Some people have enough issues with anxiety WITHOUT being tailed at close range for the majority of a trip by a strange car. Just. Fucking. Saying.