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Cold

Haven’t written in awhile. I’ve been dealing with many things lately and haven’t seemed to easily gather the energy or inclination. The past few nights have been nervous ones. After rent I had just under five available dollars in my account. This means food pantry again this month–and we have to make it last because we can only go once a month. Choices are crucial: do I choose the can of mandarin oranges from the pantry or the pumpkin pie filling? Which type of noodle provides more bulk, spaghetti or egg? With egg noodles is there more protein?

Another night here in the hospital with my husband. He has pneumonia and they can’t seem to keep his fever down. Two nights ago I brought us both here with symptoms of heat stress. The (supposedly new) central air unit to our trailer started making its own unhealthy noises and finally stopped. We spent one hellish night trying to sleep, but it wouldn’t come for me. My beloved spouse, already ill with fever, couldn’t do anything but sleep and baste in his own juices. My dog engaged in scary, rapid panting. I stayed up all night trying to google for helpful numbers (one reason Internet is a strange non-luxury) on my low-cost wifi for those of us on public assistance. I called a slew of 24 hour assistance numbers, texted my landlords (church people), and generally worked myself into a hot frizzy to no avail. I worked the phone and my email well into the following afternoon. Oddly enough, the fact that a disabled woman couldn’t afford to fix her air conditioner to help her sick husband and precious pet cool down elicited little more than scripted lists of who else to call for help, anyone-but-us, who all had similar responses. One guy, from the “House of Help” snorted, “I have a window unit, but I can’t give it to you. I don’t have any money.” Puzzling.

The sum total from my efforts was a 12-inch window fan which, as anyone experienced with June in the South can tell you, is just a punishment. And I received a frozen chicken. Which if I cooked would probably kill us with the heat.

When the thermostat read 95 degrees, the air was like molten metal, and my spouse was having seizures, I brought us here to the hospital. It’s a cold world, just not in a way we need right now.

What I keep thinking is this: 1) God is supposed to be our source of help; 2) He works through people; 3) reaching out to my local church people did squat. Does that mean something about God, the local church, people, or all of the above? Does the fact that almost all I can feel is a raw, gnawing sense of abandonment mean that there’s something wrong with me? That I’m “playing victim”, looking to ascribe blame? When what I want is a good home, health for my little family, peace, and a chance to do something like afford a movie once a year. Is that too big a job for God, or are his employees just tone deaf idiots?

If The Church can’t help us now, who can?

My husband’s last temperature reading was 100.3F. It’s up again. His breath rips through his body as he lies there passed out from total exhaustion. And we have no insurance and I don’t know what we’re going to do. I’m so scared I want to vomit.

Earlier a church member offered me the requisite “thoughts and prayers” via text. I miss my dog who is housed elsewhere. I can’t do anything to make my husband well and he is my only friend in this world.

Thoughts and prayers.

Choke. On. Them.

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God+Brain Chemistry

Disclaimer: This is my own experience. I’m not a doctor and you should follow professional medical advice, which this isn’t.

For a few months until the end of February 2019 I was an SSI recipient due to disability.  I’m on the autism spectrum, suffer from depression, and have generalized anxiety. These things together have made it extremely difficult (and impossible right now) to hold down a job and make an income that would sustain me.  Fortunately, starting in March I qualified for the SSDI program as the SSI funds ended, and I was shifted into those benefits which currently help me keep a roof over my head. Unfortunately, however, when the SSI went my medicaid went with it. I didn’t know that would happen. And in the state in which I live I’m not eligible for medicare until around 2021.  So, I have no health insurance.

In the confusion of the transition from one program to another I also lost my nurse practitioner and ran out of meds.  I wasn’t able to wade through the labyrinth of indigent healthcare in time to figure out how to keep my care going without interruption.  No medicaid, no money, no meds. For the past two weeks I’ve been off my SSRI cold turkey.

If you’ve ever been on an antidepressant long-term and tried to come off, accidentally run out, or missed a dose, you know what I’m going through.  Night sweats. Day sweats. Chills. Nausea. Vertigo. Mood fluctuations and irritability. Crazy dreams. All kinds of mental and bodily weirdness.  And the coup de grace, what some people of experience call ‘brain zaps’.

Brain zaps are like mini electrocutions inside your head.  They’re audible–you hear them inside your skull. They’re not constant, but they constantly threaten.  They come unexpectedly, sneaking like a thief. You might be turning your head to look at something, you might be blinking, you might be bending over, and all of a sudden–a burning, crackling, zooming electrical sound, shock, confusion, and vertigo that takes the wind out of you. It’s like your brain is broken.

Wading again a couple of years ago into the pond of antidepressants, psychiatrists, and side effects took a lot of thought.  Even though I was in intense emotional pain, at times suicidal, I experienced a further crisis when confronted about the need to take pills.  I had cycled on and off various psych meds through the years, but during this trough I was very involved with the church, and that made me question.  My hope–my prayer–was that church would fix whatever was wrong with me. I had doubts that God would approve of drugs and pre-emptive shame about how others would judge me. It somehow never occurred to me never to mention that I was seeing a psychiatrist.

I wanted to talk to fellow members of the church who could understand; I was ambivalent about isolation. I needed someone of faith to talk to, but I felt alone. It wasn’t as though like minds were running around with little stickers on their lapels:

Hello. My name is _____. I’m on Zoloft.

The prevailing winds from overheard conversations and unsolicited comments let me know there wasn’t any safety. The overall message that I got in the church was that having my mood problems was unrighteous.  Anxiety was a sin. I was supposed to be in the world and not of it, and that meant something about my depression. If I truly believed, I wouldn’t be having mental problems, anyway. And so on.

I worried that changing my brain would make me even less of a good Christian.  After all, hadn’t some of the greatest martyrs for the faith lived through torture, humiliation, and despair greater than anything I was going through and prevailed?  Wasn’t it a sign of weakness to take medication to sort out my desperation? Wouldn’t God heal me?

But, the thoughts in my head towards suicide wouldn’t be quieted, no matter how much I tried to pray them away.  So I took medication because I didn’t really want to die.

At times on the meds I felt it was easier to pray, easier to sing in the choir, easier to attend services, easier to be on the social committees.  I was nicer. More agreeable. Things didn’t bother me as much. I was me, 2.0. A happy Christian.

Now, the pillow is gone.

As the natural chemicals rebalance in my brain and internal chaos abounds, I’m flowing in so many directions emotionally.  It’s hard to pray. Church worship is a bit annoying and physically exhausting. I don’t feel The Presence. I don’t feel Nice. I don’t know if how I’m thinking is right or wrong, healthy or unhealthy.  Part of me beats other parts of me up: I should have been able to organize myself well enough to find some financial assistance, do the massive paperwork, and figure out how to keep my psychiatric care from being interrupted. But the forms, the processes, the long lines, the autistic overwhelm–you’d have to not need most social services to be able to survive the intake processes involved.  But, I couldn’t get it together in time, couldn’t get organized, couldn’t face the crowds, and here I am.  It helps to be naturally organized and focused, especially if you’re poor. I’m not naturally organized and focused.

But maybe it’s not all about how I feel and think.

I’m reminded that God is changeless, no matter how mercurial my mood.  So, no matter if I’m medicated, unmedicated, sick, dizzy, sleepy, or irritable, nothing I am changes Him.  And it could just be that whether I take meds or not isn’t the final issue.  Maybe I just need to be where I am right now. Maybe this is a time to learn a new way to trust God to get me through it, whatever comes, whether I find myself likeable or not.