Get Your Sh#@ Together


Sometimes I feel like a failure...to disabled people. You know how in the movies when the mother is hyperventilating in the kitchen while a pot of water is boiling over and the fire alarm is blaring, the toddler is eating glue, while the baby is crying because the toddler covered him in said glue, meanwhile the dog is just chewing on everything, the laundry is piling up, the mom looks to the left and sees some ideal influencer mother on the cover of Us Weekly, and she just breaks down because she feels like a failure to motherhood. That's how I've been feeling lately. I don't have a child and my dog is half-blind and doesn't do much. But that doesn't mean I don't deal with infants or have responsibilities.



If I haven't painted the picture clearly enough throughout my blog: I AM PHYSICALLY DISABLED. I need assistants in order to live a stable and fulfilled life. I really don't know how to articulate how important this is for me. I've tried for the last month to explain to multiple caregiving agencies the importance of their profession. Still, it's baffling to me how people who decide to dedicate their lives to helping and assisting people don't value work ethic. But besides that, I haven't been able to find assistants or caretakers that stick. It's like they all have expiration dates like I'm just a temporary job. Which is fine, when the expiration date is three years from now, maybe two, hell, at this point, I'll take six months. But to paint a clearer picture. I'm going to give you the highlights of my past month:


After I came back from my trip home to Puerto Rico, one of my assistants decided to drop me via text, and somehow made me feel like the villain. Keep in mind, I've been doing this for 23 years, and this was the first time I ever questioned my morals. When in truth, she was just going through a rough patch and had to cut something out of her life in order to decrease the stress. (Once again, I am being understanding to other people's problems while being left in the dust.) My other assistant got sick and hasn't been able to show up to work, which is totally human (See how I'm being understanding again?) Assistant #3 is still holding on, meanwhile, I've had to fill the void with caretakers provided by a caretaking agency. Which sounds like Netflix for caretakers. But unfortunately, like Netflix, the quality is a little shaky... If you think I'm being harsh, I had a caretaker abandon her shift IN THE MIDDLE of her shift. Thus, abandoning me, you know, the patient, who doesn't move....... She told me she was going to take the trash out, and just never came back.

After working through the trauma of, well, being abandoned, my parents and I decided to try and change the shift schedule. Usually, the 7 AM to 12 PM shift is a lot more hands-on because it involves some light medical procedures (i.e., nebulizer -- that's what you give your six-year-old when he has asthma.) and grooming (i.e., bathing, dressing, normal human stuff.) We decided to change the time from 12 PM to 4 PM, which means I'm already in my wheelchair, so all the caretaker has to worry about is tidying up essentially, and some light oral suctioning (AKA, the chupa.)

So, this is the part that I don't understand. After the traumatic event, the agency decides to send me an 18-year-olds STUDENT Certified Nursing Assistant (CNA). Which I was kind of okay with, I'm not ageist, I know there are young people with old souls. I used to be one of them, but now, according to my ex-assistant, I'm just a bitch. After telling me all of the experience that she's had helping her aunt who is also a CNA, I still wasn't buying it. Let's just say, the list of what CNA's can't do is longer than what they can do. And most of them, at least here in the South, memorize the can'ts. Allegedly, they're not allowed to shave my legs, cut my nails, clean medical equipment, give me medications (AKA my birth control pill, like c'mon), or carry me, even though I weigh 89 lbs. However, and this is the part that pisses me off, it all depends on the nurse and the agency. Some barely care about the rules, and they shave my legs and cut my nails, and give me my birth control anyway. But these nurses are so fucking hard to find and they're usually paid privately.

I digress... so this girl is telling me about her experience, which leads me to ask her if she's ever used a Mic-Key before. She obviously said no, so I asked her if she felt okay with me teaching her, and she was happy to do that. As my mother and I were doing so, she started feeling a little hot and asked for some water, she went into the kitchen and fainted. She fucking fainted. Soap opera-style, my mom caught her mid-air. At this point, I'm emotionally dead, stoic, and all I'm thinking is, "Yeah, I figured something like that would happen." In a very comprehensive way, of course. She came two more times after that and then decided to disappear from the face of the earth...literally, no one has been able to find her. And this is all happening because the caretaker I had before, for ten months, (I know, she broke the record.) decided to have a total temper tantrum while I was in bed... (If you're reading this, I do miss you, and I still have all of your crazy Snapchat selfies, but it was quite the temper tantrum). I don't know, I feel like I'm not good at being disabled. At 23, I should have this all figured out and I shouldn't be missing people, or be upset with people, or feel disappointed by people, I just can't find a way to get rid of my humanity. My dad used to call me Professor X growing up, because of the whole mind control factor. But I haven't been able to live up to that nickname. I feel like I should be four steps ahead of everyone, but there's a point where I just want to live, which seems hard because every time I build my life, other people's instabilities seem to tear it all down and it's not my fault. Every couple of months I feel like I have to rebuild things, start over. So basically, I need all of you to start getting your shit together, so you can help me turn off the stove, wash my toddler, as I rock the baby and feed the damn dog, so I can at least a chance of ending up on the cover of Us magazine.

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