I’ve been oddly peaceful lately… in some ways, this is preferable to crazy anxiety and insomnia, but I wonder if some part of my brain has become dumber and switched off an activation code lately. I’ve reverted back to the days of a 7 year old relying heavily on their parents to feed them, get them things, and spend time with them. It may be a coping mechanism, but it could also be that I have resolved on my plan for this year and just need to map out the kinks and details at this point.
For example, I am a Medicaid patient, and I had called them recently to get more information. This week, I was sent three letters and packages in the mail from them, not small by any means. These packets included a living will, a case manager they offered to assign to me to help me with all this confusion, and another enrolling me in a pulmonary education program.
Here are some things I really want to change in our healthcare system as well as disability assistance in common places such as work, our community, and our cities (I’m looking at you, NYC). We should always have the automated doors, we should always have elevators or sloped walkways, especially when that poor mom fell down the stairs trying to carry both a stroller and a child alone down the subway. These are two of the most basic disabled rights that I can think of off the top of my head, although I also think it would be totally fair to make offering straws illegal unless a disabled person requested one. Even though disabled rights have improved over the years, we are still so far away from what is actually fair and equal.
Five years ago, I similarly went through rigorous research, but that time, my desperation and panic led me nowhere. I messaged Harvard professors and emails prestigious sounding doctors, of which I remember one advising me sternly not to to seek any stem cell therapy centers, and to insist that I get a lung transplant. To me, a lung transplant was the epitome of death. Now, it is a chance for hope and a better future and quality of life, even though death is still there in the picture (I am actually going to be diving into the outlook on death for my next therapy session this week).
I’ve been on Youtube a lot lately and watching mostly mukbang videos, The Voice, and World of Dance clips. But in between, I also watch Youtubers who share their lives in living with a disability, and there’s one channel that features an inter-abled couple. I always felt like a part of me was more enlightened and more patient, and kinder, and understanding because of everything I’ve been through. But a part of me also understands the comments that are incredulous, sometimes borderline mean, that ask how such a couple exists and is okay with handling the “burdens” of care-taking. I think maybe a fear of mine is that even as a technically handicapped and sick person, I still hold prejudice and still aim to separate myself from other disabled people. I remember one time in college, the disabled office told me I could hang out with the other freshman kid who was in a wheelchair. I also remember feeling resentful that I was by default, lumped in with the other kid as if we were the same kind, and also resolving to do everything I could do to fit in with “normal” students, and not associate myself with him. Some time later, I remember seeing him walking by, us making eye contact briefly, and me thinking he was pretty cute. Eventually, he was walking by on a cane and often accompanied by an attractive girl, and I felt pretty ashamed for ever disassociating myself from him just because he was in a wheelchair.
I love my mom and dad, but to be honest my childhood was difficult. My mom was always stressed out and this caused her to be very impatient, often getting angry with me for things that were out of my control, like having a poor appetite and not being able to finish meals, and eating slowly, and needing her to drive me to school everyday. Looking back now, I am much more understanding of her experiences and struggles in raising a different abled kid, especially when neither of us really understood it, and she was already dealing with a lot of personal, separate problems. I guess despite my understanding her especially now that she is a lot more patient and calmer and we communicate more, I fear that I would be the same type of parent or girlfriend, I would still run away or deal poorly with any signs of hardship that wasn’t solely my own.