My old teaching job is posted.
Again. That same job that shaped me and helped me to recognize my life's calling is available, and those wonderful people I used to call coworkers and still consider family reached out to me to let me know that the position was open. Again. Three times this month, in fact. This is not an isolated occurrence. They have not kept an English teacher since I left the post in 2014, and they have told me over and over that the job was mine if I ever wanted to return to it. It is flattering to be wanted. It is tempting to return. But as much as I would love to go back, I just can’t, and I hate the reason: I am dependent on government disability. I broke down and applied for disability coverage after working a half-time load proved to be too much for me. My initial application was rejected, but my doctor recommended that I apply again. I didn’t want to, but I finally came to a place of acceptance and admitted that I needed it. I took my case before a judge, represented myself, and won. I was awash with emotion: relief and hope tempered by the taint of shame. Because I had waited so long to reapply for disability (two years after losing my driver’s license), I was only working a half-time schedule when I won my case, so my disability is capped at that level. I can work some, so I sub and direct the plays, but if I were to ever go past that cap--even for one month--I would be deemed "fit to work," and I would be immediately kicked out of the disability program. That means I would lose my health insurance. Um, I need that insurance. My medication--the stuff that I need to literally NOT DIE--is over $1,500 a MONTH. That is more expensive than my MORTGAGE. Those pills are so freaking expensive and precious that I have literally dry swallowed one covered in dust bunnies and hair and cobwebs after dropping it on a nasty Old Navy dressing room floor, just because I wanted to make sure that it would do its job and shut my brain up long enough to focus on the 40-mile drive back home without malfunctioning. In the seven years since my diagnosis, I have been on eight different medications, and this is the only one that has worked long-term. Unfortunately, it is also the most expensive. I need this medication, and I am relieved that my disability coverage makes it affordable. But If I took on a job--even a long-term sub job (I am asked to do those all the time, too), I’d be gambling away my coverage on the hope that I’ll maaaaaaybe be okay, all the while knowing that there is an MRI-confirmed knot of scar tissue in my brain that is still active, a dormant volcano of repetitive hand motions, mumbled gibberish, altered consciousness, and convulsions. One seizure, and it’s all over. I would lose my driver’s license again, and I would be back at square one. I would have to reapply for disability, a process that took me two attempts over the course of five years. I was rejected the first time, even though epilepsy is a condition that automatically guarantees coverage. (I found out that nearly everyone is denied the first time, regardless of their condition.) I have had to run the gauntlet of government bullshit to get this coverage, and I am not about to gamble it away on a chance that I might be okay if I return to work. That volcano of seizure activity has been there since I was two years old, sometimes active, sometimes dormant. It is not going away. It is part of who I am. I feel tremendous shame about this. I feel shame that I am a college-educated, battle-hardened teacher who can’t accept a job because her brain can’t keep its shit together. I feel shame every time I say no to these opportunities to do what I love, what I’m good at, what brought me such fulfillment and joy for seven great years. I feel shame that I am only turning down these opportunities because I am afraid of tipping the scales, of piling too much straw onto that proverbial camel’s back and breaking it. I feel shame when the kids I sub for now flippantly ask me: “Why don’t you have a real job?” “Why aren’t you an actual teacher?” “Why are you just a sub?” I feel shame that I have become “just a sub.” I used to be more, I swear. I feel shame when my friends joke that it “must be nice” to not have to work. Not gonna lie--in the beginning, it was. But that luster has long since worn off. I’m nearly 37--my peers are advancing in their chosen careers, becoming managers and supervisors, and I have the schedule of a teenager. Now, instead of feeling like a luxurious, never-ending vacation, being unemployed is a strange combination of boredom and embarrassment and loneliness. I wish I could go back to work. I want to. I miss it. I miss the kids. I miss their chaotic, teenage energy. I miss pep fests and fundraisers and chaperoning dances. I miss helping kids slog through Nathaniel Hawthorne and make sense of e. e. cummings. I miss hearing them absolutely murder Julius Caesar and Macbeth and Romeo and Juliet by reading them aloud, and then helping them to make sense of them. I miss lesson planning and reading essays and grading papers, even the awful ones. But I really miss the kids. I miss being a teacher, not just a sub. I want to go back. I would love to. But I just...can’t.
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Our barn was a gorgeous thing. People were always telling us so—it was rustic enough to suggest a rich history of agricultural use, yet elegant enough to serve as the backdrop for a sweet country wedding. And it did both: my sister got married in our yard, right in front of that barn, and it was stunning. At least, it was if you were looking at the east side of the barn. If you looked at the west side of the barn, you’d see something completely different. The west side of the barn was…well, it was pretty much gone. The west wall was shielded from view by trees, but it was nothing more than a beautiful ruin, riddled with holes wide enough to walk through, and the west roof gaped in a way that let in the light of the setting sun so the whole hay loft glowed. It was too far gone to restore or repair, but from the east, the barn looked whole, so I liked to pretend that it was. But a holey roof can only take so much before it gives way. This winter has been a weight in so many ways, and I wasn’t surprised when I walked outside last week and saw that our beautiful barn had finally collapsed. The roof had caved in, laden as it was with Minnesota snow: a burden that had become too heavy for all of us to bear. In a way, I understand the weight of such a burden. I haven’t had a major seizure in quite a while. I hear it often: “You look so healthy! Are you better now?” I never know how to respond to that, because...well, because it’s complicated. I am not sure if I will ever be “better.” I do not think this problem will ever fully disappear. What the world sees may look better. But hidden behind a body that seems whole is a crumbling infrastructure. I know there’s a hole there; I saw it on a terrifying MRI. The world can’t see it, can’t understand it, but I know it’s there, and I can feel the weight of the pressures applied to it, like a camel’s back laden with straw, just waiting to break. So many aspects that affect my condition are outside of my control: I’ve learned that my seizures are triggered by poor sleep and high stress; that my migraines are triggered by barometric pressure changes, hormones, and hypoglycemia. I can’t control these things. The only thing I can control is my reaction to them. To be honest, I was one of those people who thought that “Zen” was a completely ridiculous concept. Meditation sounded like a waste of time. Peace seemed like an impossibility. Ask my husband: I (still) can’t even sit down to watch TV. I always have to have another thing going on. I’m cleaning or exercising or reading a book or folding laundry or making jewelry or drawing or making a list or something, because I have always tried to stuff as much activity as I possibly can into every hour that I have. When I was diagnosed with epilepsy in 2012, I had so many external stressors that piled upon me like the weight of all that snow on my barn: At work, I was literally the entire high school English department. I had just lost my driver’s license. And a year before, I had received the crushing blow that having a biological family was not in the cards for us. I was encouraged to slow down and grieve these things, but I did not. Instead, I stuffed this all away and kept on doing. Because I believed that my life did not have value if I was not constantly doing. My doctor had advised against this. He told me to do less and sleep more. I saw other doctors, and they told me the same: Slow down. Do less. Just relax. This is not what I wanted to hear. The very idea of “doing less” threw me into a maelstrom of panic, because I believed that my worthiness as a human was intrinsically related to all of my doing. My mind went wild with fear: If I can’t teach/be a mom/drive a car/keep up with my housework all by myself, then I’ll need help, and I don’t accept help; I give it. If I can’t do those things by myself, then I’ll NEED, and I can’t NEED, because needfulness is tantamount to weakness, and I am far too productive to NEED. Accepting help was like admitting defeat. Because I literally had no other choice, I swallowed my pride and accepted the car rides when they were offered. The school board where I was working responded with compassion to my plight, and they allowed me to do less at work: I stepped down gradually, going from overload to full-time, then from three-quarter-time to half, and then the school hired me a permanent substitute on Mondays so I could make appointments and get rest. It was a generous act of compassion on their part, but it was also a humiliating staircase to descend. Insanity is doing the same thing over and over, expecting different results. It took me more than five years to understand that trying to force fifty pounds of productivity into a two-pound brain was a form of insanity. Even trying to shove half that amount into my brain was insane. That push, that busy-ness was the opposite of productivity. So, yes--I am doing "better," in a way. But I am only doing "better" so long as I am doing less. I still have moments where I am pissed as hell that this happened to me. I spent a lot of time being bitter and heartbroken about everything epilepsy has taken from me. No, I take that back--I wasted a lot of time, and now that time is gone. It is a tempting whirlpool of thought, and I am easily sucked into it. I am so often lured by the anthem of self-pity, the Siren song of “Why me?” But there is absolutely nothing I can do to change that diagnosis except deal with it. This is where the Zen comes in. Zen is about surrendering to what you cannot change. So while I cannot exactly scrape the pile of stress off of my life with a snow rake, I can do my part to hold up the crumbling roof from the inside. This has involved making some pretty significant lifestyle changes, and I hate them. (Not gonna lie—I really do.) I wish I did not need them, but I know that I can take a dump in one hand and fill the other with all those wishes, and I know which one will fill up first. I do these things, because I like being “better.” So what does managing my epilepsy look like? It means that I do my best to stay on a schedule that would make a kindergarten teacher proud. It means going to therapy to work through my stressors. It means carrying a giant purse with a veritable pharmacy inside of it with me everywhere I go. It means toting snack bars around with me to combat the threat of hypoglycemia. It means making sleep a true priority. (This was a huge change for me. I used to hate going to bed before midnight. But sleep is as important as medication in treating epilepsy, so I have made a commitment to at least trying to sleep, because I do not want to lose my driver’s license again.) It means deep breathing exercises with names I can barely pronounce or spell: kumbhaka, ujjayi, simhasana. It means getting up to do yoga at least five mornings a week, because…Zen. It means cutting out coffee because it makes my nerves feel like they’re on fire. (I’ll occasionally sneak some decaf.) It means erring on the side of caution in my social life. (This means that I rarely drink alcohol and am usually the first one to leave a party these days. I hate this, but since my diagnosis, I’ve learned the hard way that it’s an ugly necessity.) It means carrying earplugs and hiding out in bathrooms to get away from noise and lights and people and sensory overload. It means saying no to things that might overwhelm me, even when I want to scream YES. (This is the hardest one, and sometimes my husband has to do this for me. Case in point: I wanted to take surfing lessons in Costa Rica on the same day as another excursion we had planned, but he wouldn’t let me because he knew that it would have been too much for me. I was mad, but he was right.) It means giving up the career I trained for and truly loved and taking on less work. It means only operating at 60% capacity when I long to be back at 110%. If I do these things, if I allow them to become my daily practice, then I stay “better.” This Zen business has actually turned out to be pretty hard work. Surrendering to my limitations is something I am still learning to do. I still struggle with the idea that “better” is actually a compromise that I must make, a tradeoff that allows me to live a normal-ish life. But it is a commitment I am willing to make to keep the broken roof of my life from caving in on me. I grew up in a pretty non-traditional church experience: We met in someone’s garage two counties over. There were maybe 50 people in there, all crammed in, sitting on folding chairs. The little kids just sat on the floor. There were a lot of closed eyes and raised hands and shaking heads and voices shouting “Praise Jesus!”. (Sounds cult-ish, I know. But it wasn’t.)
We didn’t recite any creeds. We didn’t have hymnals. In fact, most of the songs we sang were written by the pastor. The Bible was our only book. There was no “How-To” guide stashed in the back of the pew that explained when to sit, when to stand, and what to say. I always felt a little weird about this growing up. When you live in a small town, you’re defined by the groups you belong to, and I didn’t get to be Catholic or Lutheran or Methodist or “non-religious” like virtually everyone else in my class. And I always thought that maybe my church experiences were less-than because of this. They weren’t “official.” There was no Pope or Diocese to oversee our practices. We had no book to follow along with and guide our participation in the service. Like I said, the Bible was our only book. Whenever I visited other churches, this bothered me. It was rare to see an actual Bible in those churches. Usually, the passages were just printed in the bulletin. So I felt like we were doing it wrong in our garage. Everyone brought their own Bibles in our “church.” And people shared with the “congregation” what they were reading and what learning from it. So there was (and still is) this disconnect for me: the words “Pope” and “Diocese” don’t appear in any Bible I’ve read. There aren’t a lot of instructions in there about conducting an actual church service. The Biblical church, to me, just seemed to be a group of people who loved and supported each other and who weren’t afraid to act out their faith to better the world. (Becauase faith without action is dead.) So I feel like I serve God better in caring for foster children than I do sitting in a pew. (The Bible tells us to care for the fatherless and the widow, but I don’t think it says anything about sitting in a pew.) Likewise, I hate feeling guilty for not volunteering my “time and talents” to pass out bulletins or join church council. I hate feeling guilty for not buying soap for kids in Africa. And I’m not saying that those aren’t worthy causes. I’m just saying that I see a lot of things that churches ignore, either because they’re way too into themselves (“involving” members of the congregation by having them pass the offering tray or hand out wafers) or way too outside themselves (giving money to foreign missionaries). They miss the needs that are right here, right now. Churches are missing the needs of their own communities because so many of their programs stay within their church walls. They want people to come to them. They don’t go out to meet those needs. They are fine sending a single family to North Korea or Borneo or Fiji and supporting them with money and prayers and school supplies and stuff that was bound for the Salvation Army anyway. But it is rare to see people step out within their own communities to make a difference, especially if those who need help don’t “belong” to to the “right” religion. I’m not saying it doesn’t happen -- our community just saw a beautiful example of people coming together to support a family in need that crossed boundaries of denomination. But it is rare. I didn’t realize how much need there was until we started doing foster care, until we jumped into that trench and started to interact with people who needed real help with real things: Basic education. Life skills, like cooking. Money, time, and resource management. Hygiene. Sobriety. I live outside a town of 2,500 people, and there is plenty of need right here. And I don’t know if I’ll ever feel comfortable going to church where they expend more effort in finding someone to read scripture next Sunday than they do in meeting the needs that are just outside their walls. |
Old Stuff.
January 2023
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