The Trapped Butterfly is still in pain after the horrific fall that her husband and her took a week and a half ago. Not fun when you have no choice but to sit in a wheelchair for hours in order to live. She is finally getting better as is her husband. But she is still struggling with the anxiety of falling again despite her ability to count the number of times that they have fallen in the past 24 years together on one hand. The story of the fall is for another time when she feels ready to write it. Not tonight.
Tonight she finds herself feeling depressed, sad, angry, exhausted. She is an open book anyway which often gets criticized because others are much more private than she is. Don’t tell her not to post something that is directly related to her. She feels so triggered because before she had to cut ties with her narcissistic mother and other family, her mother would be controlling and criticizing of some of her social media posts. Bull shit! She has a right to post whatever she wants as long as it doesn’t violate someone’s outright privacy. They do what they want.
However, The Trapped Butterfly is currently seeing why it may not always be worth giving details of her life online. Yet, she wants to be supported and encouraged especially when she is going on three fucking years of not being able to just be around people. God damn Covid. God damn the people that won’t do everything to help keep it as low as possible!
People who mean well were giving her ideas from getting an aide to getting a lift to help her husband with her care. She knows that they want to help them, but only one person recognizes that she and her husband have been talking about it and trying to get help but they don’t qualify for the type of help they require. They’ve tried many times. The second she got married almost 20 years ago she lost all her disability benefits. The fucking USA expects the disabled population to live way below the poverty line in order to get the help they need with extremely expensive adaptive equipment and services that will allow them to live independently and comfortably.
And now Covid has made it pretty much impossible for them to even try again because they are so high risk. She had a very telling dream the other night that they were going to a made up mall. When they got into the parking lot, there was a huge cement gate with the name of the university that she had went to and it was closed. The Trapped Butterfly looked at her husband like, “what the fuck?” The door of the gate was metal and dark while the rest of the gate was cement and brick.
Somehow her husband was able to find a way around the wall but when they started walking around the mall, every store was being packed up. She doesn’t remember but she doesn’t think anyone would interact with them.
It was such a weird, short dream but her husband said that it is obvious that she felt trapped and rejected. Basically, unseen.
Bingo! As people have brought up things that have been hard for her her whole life…Getting someone who is willing to do everything for her (feed, lift, take her to the bathroom, physically help with her schoolwork) wasn’t easy even when the damn school district was hiring and paying for them while she was in school. Thankfully, her parents found her a perfect babysitter until the babysitter moved after she finished her first year of high school. Then there were a couple other people that cared for her after school and on days off.
She found one aide after a first try when she graduated high school and the state was paying for them. That aide was with her for a few years before she had to quit. They had to get an agency that could provide aides quickly. The main aide was great. But a sub didn’t understand that she was talking when she talked. The Trapped Butterfly had to get a teacher to explain to the aide that every time she spoke, she wasn’t just “making noises.”
When the state decided that they couldn’t use the agency anymore and had to hire someone independently, they, again, looked through lists of people who wanted to work with in home care for people with disabilities and put an ad in the paper. But The Trapped Butterfly was in community college and her mother had to keep working, so her wonderful husband, then boyfriend/fiancé eventually quit his job and became her aide.
They were lucky that the university helped with aides for certain things that her husband didn’t want to do. Besides, she wanted to prove herself with other people helping her out. Her husband was still her primary caregiver and aide at the university.
After she graduated from the university, they went through the degrading process of trying to get the state to pay for someone to just sit with her for a few hours a couple days a week so her husband could ride his motorcycle but they didn’t qualify so they had to pay for the person who wasn’t always reliable. Thankfully, The Trapped Butterfly’s friend offered to have her over for free just to hang out.
Now the ongoing pandemic has limited her ability to do anything. There’s a fucking closed gate in front of her that unlike her dream, there’s NO WAY TO GET AROUND SAFELY!! Trapped AGAIN…
The Trapped Butterfly 