I had a horrible episode yesterday that culminated in me spending the night at my parents’ house. I hadn’t been to their house since late January except for one 3 minute trip inside to meet the new cats. I was in a desperate place.
I could go into detail of all the problem situations I was in yesterday that culminated in an episode, but I’d rather give an explanation of the insides of it. But just for a frame of reference, here’s the Facebook post I wrote while on the phone:
On the phone with a health insurance person, I don’t know her title. She’s young and not that bright, and keeps giving me the number to Medicaid, which I’ve ALREADY spent a ten-minute call on, dialing my way around the keypad through the automated system, trying to speak to a real person. I hung up on this girl and called back, hoping for a competent adult. Instead, I got the same girl, Casey. I’m on the phone right now, and she just directed me to the Medicaid number AGAIN. I said LOUDLY to EMPHASIZE…
I finally got her to give me my representative’s phone number. Thank GOD.
I put my representative into my contacts and called her. I got a message saying the number was no longer valid…
I burst into big, messy, sobbing tears.
I calmed myself, steeled my nerves, and called the Nurse Line just to try to talk to someone else. By the time I made it through the voicemail system to a human being, I was so grateful to hear a calm, human voice say “How can I help you?” that I started sobbing again and ranted my way through explaining what I needed, apologizing profusely in between sentences and trying (unsuccessfully) to lower my voice…
I just got off the phone with the Nurse Line representative. She has the same number for the caseworker, and keeps insisting that UHC doesn’t do what I need, which is help filling out paperwork for food stamps. My disability makes it nearly impossible, and NOW, I’m in a horrendous episode BECAUSE I was trying to get help for my disability! I’ve gotten calls from UHC saying they do EXACTLY what I need them to, but the reps I talked to tonight kept pointing me in other directions
I need help with my food stamps paperwork because there’s a legal aspect that has to do with my disability benefits and reporting any money that comes in. I’m afraid the money I accepted for help when I ran out of food stamps could cause problems and I need to be able to explain it properly, but the government wants everything done “just so” and I have to report any earnings or other money in an exact way and I don’t know how. The people who have offered me THESE EXACT SERVICES before are qualified to do that, and I have a legal right to be accommodated for my disability with a caseworker and other help. The fact that I’m sobbing right now and showing the whole of Facebook my ugly, ill side and displaying a shocking lack of personal boundaries, but fuck it, this is what bipolar looks like, so now you know. Welcome to the inside of an episode. We’re all a fucking mess. Now I’m going to go punch a pillow and yell.
I’m stressed. I let my food stamps run out because I didn’t check my mail. The mail is such a struggle; it’s where the bad news comes from, and I get lots of mail from the government and my health insurance. It’s benign most of the time, but sometimes it’s alarming news that means I’m gonna have to work my ass off to keep my benefits. During this last time that I ignored the mail, I got a letter from a Texas Benefits office asking for a list of documents. I didn’t send them, so my food stamps stopped. I’ve selected the option to have everything sent to my email inbox instead, but I didn’t receive any email, just the paper letter. I found out that they stopped when I was at the grocery store, facing a $192 bill at the checkout counter. I had enough in my account to pay for it because it was at the beginning of the month, right after I get my disability money, but my income is limited. Even now, with Patreon, I’m only pulling in $65 of my own money each month, and the government expects me to live on $770 a month (not including food stamps or Patreon). All this to say, $192 for one grocery trip was a shock to the system.
When I made it home, I got on Facebook and told my story. Then I went to the food stamps website and started filling out what I needed to get them reinstated. There are several documents they need, including bank statements for all bank accounts for the past 4 months. There was a page where I had to report how much money was in my bank account right now, and I said something like $300. But when I got back on Facebook, my exceedingly kind friends touched my heart by giving me money for groceries to get me through until I get my food stamps back. In total, I got about a $700 cushion. I was overwhelmed and beyond grateful, and I didn’t think about the fact that hours earlier, I’d reported my balance as $300. Now, I’m basically worried of being accused of government fraud.
This was at the beginning of the month, and I am now at the end of the month. I requested that a new paper packet be sent to me, and I know that I need help from a caseworker to fill it all out in a way that makes it clear that I did not defraud the government. My insurance is United Health Care, and the coverage is largely wonderful. About a month ago, I got a call saying that someone could come to my house and help me fill out paperwork for government programs. I didn’t know I needed it yet, so I thanked her and didn’t take down her number. I assumed I could call customer service and be put through to whoever was in charge of that program. In summary, I wanted help filling out my forms so I wouldn’t go to jail.
The voice-jail for United Health Care was long, and by the time I got to a representative, I’d used all my spoons (spoon theory here). I was relieved to be speaking to a person, but she wasn’t that bright and she didn’t listen to what I was saying. She kept trying to look up the number for Medicaid, which I had in front of me, and told her I didn’t need. She complained that her system would have to turn on and it would take a while and was I sure I wanted to stay on the line? I want to know why, at a call center during business hours, your computer would be off. I had to talk over her and say, no, I don’t need that number, don’t look it up, I need… “Here’s the number for Medicaid” That’s great. Can I please speak to my representative? “I turned the system off again, it has to boot up” Why the hell did she turn it off again? “Let me look up the Medicaid number for you, I’m gonna put you on hold…” I’m beyond out of spoons.
Finally, I got my representative’s name and phone number, after loudly demanding it several times. I was grateful to end my interactions with this very dense, unhelpful, clueless girl.
I took a deep breath, got off the phone, and re-centered myself. I called the number I’d written down (and double-checked) and got a message that that number has been disconnected. I burst into tears. Burst. Sobbing. Wailing. Working with a deficit of spoons.
But I wanted to get this done and I was afraid that if I gave up before making at least some headway, the task would loom so large in my mind that I would never be able to get it done. I have Generalized Anxiety Disorder in addition to Bipolar Disorder, and even thinking about a process like this can trigger an episode. If I was going to feel awful, I was going to feel awful in one fell swoop. So I called United Health Care back, hoping to speak to a competent adult. I got good old dense Casey again, my new albatross, and we accomplished nothing during our 5-minute interaction.
I called the Medicaid number again and still couldn’t find a way out of voice-jail to a real person, which took about ten minutes before I’d reached a dead end.
Off the phone. Another round of sobbing. This is just what happens when I have to make frustrating phone calls. It’s a great example of the difference between ordinary irritation and frustration and being mentally ill and disabled from it. In this case, it’s all about the degree of distress. I screamed – screamed – that all I wanted was help a couple time, and, with my whole body and hands shaking, I dialed the number for United Health Care Nurseline, knowing that at least I could talk to someone different. She didn’t have a valid number for my caseworker and she insisted that what I’d been promised less than two weeks ago didn’t actually exist.
Then she gave me the Medicaid number again. I hung up.
I was broken. Wailing. Screaming “All I wanted was help!” to my empty house. The walls are brick, the neighbors can’t hear me, so fuck it, if I want to yell, I’m gonna goddamn yell. I was sobbing. My lungs felt like they were made of rocks. I was getting lightheaded, so I sat down and back on the bed in case I fainted. I’ve had a seizure before from hitting my head after fainting; I now have a very realistic fear of fainting and hitting my head. There were tiny lines of neon colors swirling in the air just below the ceiling, a sign of psychosis. I had fallen, hard, into a mixed-state episode. For me, even the worst ones now seem minor, but they’re still all unpleasant. And this was a particularly spicy, frisky, miserable, uncontrollable concoction of an episode, with all the bells and whistles that, these days, don’t happen to me as often. It was the most intense episode I’ve had since last July. Over a year ago.
I sent a disorganized, distressed text to my mom and she immediately called and said she was coming over. I’ve had no one in my house since the coronavirus came to the U.S., and I’m under a shelter-in-place order. But it’s only ordered by me. So I manically set to cleaning the cat box, taking it outside, opening both the doors and was heading to the front door with the broom and a powerful fan (I’d let that corner of the house get stinky) and when I rounded the corner my mom appeared, IN my house for the first time since January. She didn’t fight me on what I was doing. I plugged in the fan, and the broom is still at my house on the floor in the pantry. Sometimes people fight me on whatever I’m doing that’s odd because it makes them uncomfortable and they think if they help me stop the behavior, the episode and its repercussions will stop, too. In reality, as long as I’m not hurting myself, it’s far better to allow me to do whatever it is that I think is important at the moment and not try to pen me in. That actually makes my anxiety much more severe and frustrating. My dad is a big fan of taking control of a situation in an episode, with the best of intentions, and it only makes me furious and much more agitated. It’s better to let me “crazy away” as long as there’s no chance of me hurting anyone.
My mom went out to the driveway and sat about eight feet away from each other, her with a mask on, and me nursing a bottle of kratom water (kratom is a plant powder that I take for medicinal purposes) and repeatedly wiping tears and snot off my face with the tissues I’d brought with me from inside. I was crying off and on for whatever amount of time we were out there. I had no relationship to time, so I don’t know how much actually passed. I was hyper-aware of how thick my germ cloud must have been. I was dissociating, so I couldn’t really understand my surroundings or my thoughts, and everything I looked at had little clear wavy lines coming up off of it, like the shimmer over a hot road in the summer. We talked our way through the situation, and she showed anger at the fact that our system for helping the disabled is so broken, which made me feel cared for. She’s my momma bear and she would fight anyone or anything that tried to hurt her baby. I am so beyond lucky, and grateful for her and my dad every single day. I got the best parents in the world. Just having her there, loving me in plain sight, helped. It always makes a difference.
My parents offer the spare bedroom to me on nights when I’m not doing well and might get confused or hurt myself, accidentally or purposefully. It’s my old bedroom, painted bright blue with orange and white trim around the windows. My parents thought I was crazy for painting it those colors, but I still think it’s beautiful. Cooky, but beautiful. Like my insides. Like my messy, messy brain.
When my mom invited me to stay with them, I shook my head no. Then I stared at nothing and changed my mind. I nodded yes. Making decisions is really hard, and I wasn’t sure I was making the right one, but it was the one she was suggesting, and in that moment I was aware that she knew more than I did, and it wouldn’t hurt me to spend the night (unless I got COVID-19, which I was hyper-aware was a risk I was taking).
I’ve been here at my folks’ place since last night. Tonight my mom and I will go for our normal walk at 7pm, and then I’ll go home.
Tomorrow, we are taking on the paperwork for my food stamps with the help of an experienced friend. I’ve also had a social work caseworker (not my own) and a lawyer volunteer their services. My community cares for me at every downturn. I feel like I get the best of Facebook. I’ve lucked into finding so many compassionate people. It’s really amazing.
I’m tired today and have a very flat mood. Neutral. It’s not a bad thing at the moment. I do feel like I’m going to have another episode tonight. There’s a tightness in my chest and butterflies in my stomach. My lungs still feel like rocks. I also have a pretty painful ear infection and a fever, which on its own hurt my chances of staying stable. Having these forewarnings does allow me to do some prevention and intervention to try to neutralize the beginnings of an episode. My pattern is that I have one at the same time every day for three days UNLESS I can get 16 hours or more of sleep. If I can do that, my brain gets a hard reset and I’m golden. I didn’t get a solid night’s sleep, so I’m going to do everything in my power to prevent another episode if possible. It’s actually a good thing to be forewarned; it’s much more complicated than a simple “self-fulfilling prophecy”, which I’m sick of hearing from people who are not experienced with bipolar episodes. That’s a very ignorant thing to say because it’s victim-blaming and unscientific. If someone has an idea of what bipolar actually is and how triggers work, they don’t say anything like that. You learn your triggers and patterns, and you must acknowledge them in order to treat yourself effectively: most of the time, we’re treating our illnesses ourselves- that’s what daily coping is.
I’m writing my afterthoughts now, two weeks later. I wrote the above article at my parents’ house and haven’t touched Microsoft Word since then. Today, I finally had enough spoons to edit and write, and I hope to publish and promote this today, while I have focus and presence of mind.
I stopped writing as soon as I set a goal with my dad to write three articles a month and publish two (keep one in my back pocket for sick times). I immediately got writer’s block, or something similar. I could write out frameworks for articles, but every sentence came out like a tenth grader writing a book report- fairly awful. Delete, delete, delete.
Since I wrote this, I have finished my food stamps application and mailed it in. I checked its progress online today and it’s still pending. I haven’t yet been charged with government fraud. At this point in the process, getting to know all the details, I feel 90% certain that I won’t be charged, and even if I am, I have physical proof to refute the charges. That 10% still weighs on me and elevates my heart rate when I think about it. I don’t want to go to jail. The system is broken. All I can do is jump through all the hoops they put in front of me and hope for the best.
My mom brought me to her house to use the printer and help me. I explained what I needed to do, printed out a couple sheets of guidelines for the process, and walked her through what I’d learned so far. Then I got on the computer and started printing things out with a very frustrating printer. I’d go round and round with that thing. My mom suggested I stop after three hours and return to it the next day.
So I did. I showed my mom my progress and went back to printing and filling out papers. Eventually, I had everything I needed, so I organized it and put it in the giant pre-stamped envelope to mail the next day.
I thanked my mom for her help. She pointed out that she hadn’t actually done anything.
I had done the whole thing by myself.
She did help after that, by copying all my documents to keep for my records and taking the envelope to the post office. But the part I was certain I couldn’t do – filling out the papers – I’d done by myself.
I’m really anxious to get approved. If I don’t, I can go through an appeals process and get a disability lawyer involved, so this application is not my final option. But that can take a long time, and right now I’m getting groceries with the help of friends and family, and sometimes food banks (support your local food banks if you can).
I’m even more encouraged than I am proud. I’m encouraged because I’m moving into a part of my life where I am more abled, and less disabled, than before. I’m getting “better,” whatever that means. I can’t get my hopes up too high: it actually helps me to think of myself as partially broken, because that accounts for my disability and frees me from expectations that are unrealistic. You can’t tell a disabled person that they can do everything a normal person can do. And if their condition is chronic, meaning recurring and often life-long, it’s cruel to say “You can get better! You can do anything! You’re so empowered!” because we’re not. We’re not abled. We are disabled. And again, this is science, not a self-fulfilling prophecy.
Becoming even slightly more abled makes the future shine a little more. I still can’t see the end of the tunnel, but lately, my lamp is brighter. That’s more than I ever thought I would see.
And I don’t think this is the end of things improving. I’m a human capable of surviving immense torture and seeing more beauty than one mind should be able to hold. I’m on a pendulum, and I have to cling tightly when it swings, but I’ve seen things that no one else will ever see, and some of them are wonderful.
So give me my food stamps or not. I can fight through this. I can jump through hoops.
I’ve got a lamp.
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