Posts Tagged ‘life’

Way to give me the shortest end of the stick.

When most people have a loved one who is dying of an age-related infirmity, or something that they know is going to happen where they’ve had time to prepare for that person’s death, they get to make memories with them and things tend to be pretty peaceful. Although arrangements have to be made for the person’s death, they get to spend time with them and things are… a lot happier than how they played out with my mother. I had to make peace with the fact that I was “shafted” of my mother giving me a good death. I didn’t get to prepare for her death even though we knew that it was coming, even though she didn’t actually get on Hospice until days before her death, because she had turned into such a vile person with what she had inflicted onto one of my children that I actually wanted her to die and looked forward to the time in my life when she would actually no longer be in it. I didn’t get to make memories with her as she was getting ready to die because I wanted her to be gone. And although I’m at peace with the decisions that I made leading up to her death and am at peace with the fact that she is no longer here and that I will never have to interact with her again, I used to read stories on social media of friends of mine getting this good experience with their loved ones and was jealous that I got the shortest possible end of the stick with my very own mother.

What brought me closure was the fact that I chose my own child over her because she made me, that I would — will — literally never see her again, and that I will never forgive her for what she did because not doing so brings me immeasurable peace. But for awhile, I was jealous reading these stories of friends having loved ones who they got to make memories with before they passed and that, even though it culminated in the passing of their loved one, things were as happy as they could still make them. My mother took that away from me, knew that she was taking that away from me, and turned into a monster before she died.

But giving me even a modicum of that would have involved her actually apologizing for what she did, so…

Since I have not formally amended the list…

Neurological medications:
Lisinopril, 5mg once daily
Olanzapine, 10mg once daily if needed
Promethazine, 25mg once daily if needed
Rosuvastatin, 10mg once daily
Trokendi, 200mg once nightly
Zomig dissolvable melt, 5mg up to three times per week

Respiratory medications:
Albuterol, one vial nebulized up to every four hours as needed
Albuterol, two puffs inhaled up to every four hours as needed
Claritin, standard dose
Singulair, standard dose
Symbicort, two inhalations twice daily

Other medications:
Depo-Provera, taken every ninety days

I went ahead and removed prednisone from this, although I take it if absolutely needed. I’m not “on it” due to the pandemic, because if I am exposed to COVID-19 we want me to be able to fight this off to the best of my ability and it is a potent immunosuppressant (that does have purpose). I also alphabetized the list since Symbicort was above Singulair for some peculiar reason, and albuterol wasn’t alphabetized properly… heh.

Expecting people to “act less disabled” in spaces.

This is the closest that I have come thus far in this entire blog, aside from writing about… various experiences that I have had with attempted religious indoctrination as they relate to Bub’s father’s family, in writing about specific experiences with people, but I felt like they had to be addressed in the way of disability advocacy: the expectation that non-disabled, or sometimes even other disabled, people have in expecting disabled individuals to “tone down the disabled parts of themselves” in general, to “act less disabled” in mixed spaces, and not to talk about the parts of their lives that have to do with their disabilities, even if being disabled “takes up a large part of their lives” and they are proud of being disabled. Like I’ve said, this seems to be something that society does in general, whether it is being done by non-disabled members of society or even disabled members of society who do not feel that they are “as disabled”, who have better passing privilege (the ability to be seen as non-disabled by society if and when they want to be, or simply to “turn off” being seen as disabled to their advantage), or who are not as proud of being disabled as the disabled person in question. I’ve noticed that this intersection can also sometimes occur when the disabled person in question is a member of the disability advocacy community, or “disabled community”, in general.

I do not like having to “tone down the disabled parts of myself”, as I feel that being disabled is an important and integral part of myself. I can not be myself without being disabled, and I should not have to expect to “be the non-disabled part of myself”, because that is a large part of my identity. If I were not disabled, I would not be the person that I am. If me being who I am makes you uncomfortable, that is something that you need to reconcile with yourself. That should not be something that I need to “tone down” in myself to make you more comfortable with me. I should not be expected to “act less disabled” in mixed spaces because there are non-disabled individuals present, because what sort of standard does that set in the era that claims to be all about social justice? Not a very good one, I’m afraid. Disability is not, and should not be, something that you can “turn on and off” to make other people’s lives easier. If that is something that I feel I have to do to make a group of people’s lives easier, maybe I need to consider how much time I spend around that group of people. Me being disabled is simply me being myself. If someone can’t tolerate that or doesn’t like that, then they need to tell me that they can’t tolerate me and that they don’t like me. It’s just that simple.

I caved and bought us a new PC controller, folks.

Knowing my luck, I’ll find the “old one” within a week of having made this purchase, you all just watch.

I am going to keep this one where I keep our headphone and mic set, that way I know for a fact that it’s not going to grow legs and walk away the same way the other one did… although I had kept that one in the same place for years, and even checked the infamous “mess drawer” in my room (which was halfway organized, to my own credit) thinking that I might have put it in there to conceal it from Bub’s curious hands. Knowing that this could… walk off again if it walked off for the same reason that the first one did, I didn’t want to splurge too much on the second one though. I just wanted something that would allow us to play games on the computer. I mean, we have a lot of Nintendo games, Sega Genesis games, and Super Nintendo games that are boxed up that we can legally play emulated versions of because we own them, and I can introduce them to Bub that way. It would just help to own a controller to play them with, though.

And some of these are games that you can’t play elsewhere, such as Kickle Cubicle (NES) and Marvel Land (Sega Genesis), which were two of my absolute favorite games growing up as a child. I loved those games. If there were any other way for me to introduce them to Bub, such as digitally buying them on some of the newer consoles if they were available there, I would already have done so, but there isn’t. Well, not stateside.

Surprisingly, Bub does not mind playing older games with me.

He’s even played some old Castlevania games with me, to include the very first one that was ever made!

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