The Right Decision. Or maybe not, we'll find out.

It was just over six years ago that we made the decision to uproot our family and relocate to Abilene, Texas in pursuit of a better life for all of us. 

There have been plenty of ups and downs in that time, but we've always regarded it as the 'right' decision.  We found a place here, a home. We made friends, found a Church home that we love, even found a rental house eventually that was just a perfect fit for our little niche.  Tula was born here.  Nine months later we nearly lost her here.  We've had birthdays and funerals, broken bones and broken hearts.  We've met some of the kindest people we've ever had the pleasure to know, and said goodbye to ones we wish were still around.

And now, its time for a new decision. And I pray to God above that its the right one.

I've been offered a new position, doing network security for Honeywell.  It represents a large pay increase and as anyone close to us can tell you, that is very badly needed right now. 

It's also in Phoenix, Arizona.  Turns out there is one after all.

We have until next summer to relocate, but I’ll begin working remotely in just over a week.  The company is paying for the relocation in full, including packers, movers, vehicles, etc. So thats one less thing to worry about.  But this does mean that once again I’ll be uprooting our family and venturing into unknown territory where we have very few friends or family as contacts. 

I wasn't sad when we left Lubbock.  It was an adventure.  A new opportunity. I’ll be sad when we leave Abilene. It did not take long for this to start feeling like Home.  A large part of that has been our Church Home, University Church of Christ, who have been the most perfect church home to us that we ever could have asked for and we are heartbroken to be leaving.  I'm hoping to have a chat with some of our friends in the Church and see if they have any contacts or church family recommendations in the Phoenix/Tempe area. 

And of course, we are leaving behind many friends and family here, so don't expect that you Abilene locals have seen the last of us. 

I'm not sure what more to say about it really.  We are all frightened.  We aren't totally sure what we are getting ourselves into.  But we've discussed it at length and we are hoping and praying that this is the right decision for the family.  Ultimately my only motivator is providing for this unique little family, and right now a larger salary is the only thing that can do that.

We love you guys.  We love it here, and there will be no shortage of tears.  But we have some time to ease that transition.  

Please feel free to reach out to me or Andie if you have any questions. Or just say hi.  Its a scary time in this country and we all need a little support from our friends now and again.

Also, there are some big scorpions in Arizona so its entirely possible I'll chicken out.

~Michael

Guest Writer: Michael - ABLE

I've been struggling with the best way to approach this, and I've come to the solution that honesty and simplicity is probably the best approach.

Its no secret that taking care of these kids and their needs takes a financial toll.  And we are fortunate and blessed enough to have family and friends that occasionally (or some more regularly) help us with that toll.

Gabe receives a small SSI payment every month to help cover costs. If our assets reach a certain level, he loses that.  Its never been a concern, really as every dollar we earn goes right back into providing and taking care of the family.

However it brings us to a position where we qualify for an ABLE account for Gabriel. Any funds that go into this account do not count against his benefits.  What's more, it is an account that can accept donations online.  It is also the only way we can save for future emergencies or for Gabe's future at all without risking risking SSI or insurance.

I've found myself in the position over the years where I was too proud to accept outside assistance. I've grown past this and simply become grateful for my loving friends and family who wish to help out.

I am not asking anyone to make a donation, I simply want to put this information out into the world. If you want to chip in to help with bills or groceries or rent, or to help secure the future for Gabe, this is a very easy and convenient way to do so.

Many of you have been following our family for years. We appreciate each and every one of you.

~Michael

https://www.able-now.com/give-a-gift/

Account Number:

701012017928

Owner's Last Name:

Wearden

Onlies

I am so tired. 

Who isn’t? 

Who isn’t tired of the current state of things? It is exhausting. Anyone that is making it through unscathed is...I don’t know. Lying to themselves perhaps. We are tired of the ugliness, the hatefulness, the divisiveness. I am so damn sick of COVID. If I never hear of it again, it would still be too soon. 

But we will. While the disease itself is going to go away one way or another, its legacy is one that will endure--we have ensured that. Too much has happened. 

I could sit here and debate national and global response, the merits of protective guidelines and facial coverings or whether that encroaches on personal freedoms, should we do more or have we gone too far in response to this virus...but that would violate my personal beliefs. The ones that say: if you are not an expert in the matter then the only thing you have to offer to the conversation are opinions and therefore utterly worthless. 

In an unprecedented time of available platforms for expressing one’s viewpoint, there are so many that feel entitled to share their two cents on every. Single. Topic. All this serves is to drown out anyone who has something worthwhile to hear, muddies the water until it feels as though there is conflict or uncertainty where none exist. A google search confined to first page results (don’t kid yourself--nobody goes to the second page) and ten minutes of perusing blurbs does not a specialist make. 

And yet. 

I can speak precisely to my experiences and my perceptions, so it is what I will do. This is for entertainment purposes only--there is certainly no expertise I could claim. 

As I sit in my bunker for what feels like the tenth year of exile, I keep seeing and hearing the same dismissive things:

“It really only kills those that have health problems anyways.”

Only. 

As a mother of two onlies, the daughter of a former only (may he rest in peace), as a person that has taught and held and befriended and loved those onlies, may I say: 

Please don’t. 

While it is true that this virus is, like most things in life, more difficult for those with chronic health conditions, the idea that it makes it...what? Okay? Less worthy of consideration? Oh, I know:

It makes it not worth the price to pay for your inconvenience. 

There are times in this that I am going to sound angry. That is because I am. All the time. I am so angry about so many things and for so many reasons. I could try and stuff that in a sugar-and-lace tone more palatable for all audiences so hackles remain safely down, but...why? Anger is an appropriate response to hurt, and it is something we have to work through like any emotion.  

I do not and never have asked for anyone’s help in keeping my daughters safe. It is my burden, Michael’s burden, to keep them healthy and alive because frankly at this point we know more than anyone on the topic. What can I say, I have a vested interest. As such, I have made the choices during this nightmare of a reality to the best of my ability, with full and intimate knowledge of what the consequences would be for us as a family, as individuals. 

If you are looking up stats and seeing the news articles, you would have surely noticed that a particularly at-risk population is those with diabetes. Not an insubstantial portion of the population. There is not a lot of research on whether it is exclusively those with Type-2 diabetes because there is a high rate of comorbidity with other mitigating factors, but I can tell you with certainty: contracting coronavirus will not be “the sniffles” or “just like the flu” for my girls. 

My onlies.

Every one of Gabriel’s classrooms since he started in the preschool program for children with disabilities at the age of three has been populated with medically fragile peers. While he himself would likely (we pray) recover if he got sick, he would unwittingly expose a classmate that would not fare as well as he. Children I have met and worked with through my time at Sugar'n'Spice, Woodson Early Childhood, and REACH were populated with some of the most beautiful, funny, vivacious, wonderful onlies you could imagine, and for every second I had them I loved them as I would my own. 

Maybe it’s a perspective issue—people don’t realize that there are so many stuffed into this box of “onlies”. In this country alone there are millions, millions of those with chronic health conditions that have been acutely aware of the precariousness of their situation and are going to considerable lengths to ensure their safety. Most are doing the best they can under the circumstances because some garbage about the economy and we gotta work to live. But they are there with their loved ones, living in more fear and doing the best they can despite the fact that all around them it is being made abundantly clear: 

They have been voluntold that they are the acceptable cannon fodder for this new threat because others can’t be bothered. 

For the most part, I shoot a bitchy look and let it roll right off of me because I got more important things to worry about, but I gotta be honest: when my rare shopping trip is sullied by a grown adult screaming and throwing a tantrum at the grocery store entrance because someone who is definitely NOT making enough to put up with your crap was told they had to enforce corporate orders for facial covering and you think that somehow infringes on your “rights”....I want to leap over there and strangle you with my freshly sanitized hands from a safe six-feet away.

That might seem harsh. Some of you may even be getting your hackles raised, arguing “Well, you don’t know, Andie. They might have a reason that they don’t want to wear a mask. Maybe they have asthma. Can’t breathe while wearing it. Maybe they have trauma that prevents it, or or hey! What if they have sensory issues? Huh? AUTISM, perhaps?!” 

In which I reply: you honestly don’t buy that, do you?

Masks are made for people to breathe through—that’s why surgeons (and surgical staff!) aren’t single use items. And a respiratory condition would only be further exacerbated by having a respiratory illness, I would imagine. But if one were truly invested, they would be able to find a mask that worked with their condition. Or heck, they could (as much as possible) limit their time in the mask and with people because they are aware of their own inability in this realm. 

As for sensory issues, autism? Honey, you can get straight outta my face with that one. You are preaching to the wrong person. Since his birth, I have had to deal with Gabriel’s sensory seeking/sensory defensive cycles, which have been disheartening and extreme. He has gotten completely buck-nakkie in the buggy at Walmart on more than one occasion whilst I had my back turned. But here’s the rub guys: we don’t let sensory issues dictate behavior. I don’t smile warmly at other grocery store patrons that are staring aghast at my son’s exposed everything and brightly explain, “oh, it’s okay—he has AUTISM!” When there is an issue with expected or appropriate behavior, we give them the tools to cope. 

For Gabe’s nudity in the store, I started with having him focus on me. I felt like a great big ol' fool but I would belt out songs at the top of my lungs because for him, it was like I was casting a magic protective spell over him. And it worked! Sure, there were people that shot me weird looks (and more than one that would join in or offer song suggestions) , but I wasn’t doing it for them. I was doing it because I knew long-term Gabe needed the tools to get through this. 

Fast forward to today, where he would rather wear a mask into the store than pants, if given the choice. But I still make him wear both. And if it came down to a “pick your battle” sort of scenario (because BEEN THERE)? I don’t take him out. 

Guys, I can’t begin to tell you how much this doo-doo storm has negatively impacted my life. Starting with the fact that I have been more or less trapped in this house with these kids since friggin' March.

Tula is missing out on critical exploration time, as well as her time with Mommy’s undivided attention. Small potatoes; she’ll be fine, but it still sucks. She is loud, screaming for attention in a house where her voice is just one of many. Emotionally it has been difficult for her. 

Emerald is scared out of her mind of getting coronavirus, to the point that she is afraid to leave the house or be around other people. Because she knows. She asked me why people weren’t taking this more seriously. I told her that a lot of people lack the imagination to know what it is like to be really, really sick or in the hospital if it hasn’t happened to them. Her perfect little face blanched so hard I thought she might pass out and she whispered, “it’s not fun”. 

Benjamin, my sweet almost-normal, healthy child is suffering, too. He is simultaneously incredibly social and very bad at human interactions. He is getting the one-two punch of isolation with a big sister that finds him annoying and a little sister he finds annoying (Gabriel is just a source of constant aggravation to him) but no friends to play with, which deprives him of the benefits of socialization. He is showing signs of stress, but he doesn’t want to go back to school because he is afraid he might accidentally make one of his siblings ill. 

For the last few months, he has been losing weight, complaining of stomach pain that leads to vomiting and eating less, and looking weak and wane. He had to start omeprazole and have a sonogram, fecal smear, and lab work done that revealed he has IBS brought on by stress. He lives in constant fear that he or his family members are going to get sick and die, and he is trying to mentally prepare himself.

And Gabriel? Oh, my Gabriel. The amount of regression—loss of progress and skill—that we have experienced in my boy is...more than I can face at the moment, to be honest. Since he was 17 months old, we have applied firm and steady pressure to help him gain skills. He’s been enrolled in multiple therapies weekly since that age, had a case manager to help direct his services, met with specialists regularly (no less than every three months), and aggressive behavioral treatment plans. Since he was three, he has been in school year-round with teams of special education specialists, building toward as much independence and self-reliance as can feasibly be attained. We have dealt with every problem behavior that has arose from fecal smearing to aggression to extreme prolonged sleeplessness to dumping (upending organizational units that hold multiple items like bookshelves, toy buckets, or jars full of pickles from the fridge so that it scatters on the floor) and triumphed over them while pushing for him to gain new skills: eating with a spoon (attained at age 7), dressing himself (pulls on clothes with stretchy waists and no fasteners, age 10), sitting and attending tasks (ongoing process, but we were up to 15 minutes regularly). He was cultivating friendships and interests and social skills, secure in a predictable routine. 

With that constant force, the indomitable will I am infamous for, we were able to achieve around three months of developmental progress per year. 

Over the last six months of this, the worst of all time lines, I have had a front row seat to the majority of that progress evaporating into thin air.

He started out after spring break begging to go back to school. He would get dressed, force his feet into whatever single shoe he located (whether it belonged to him or not), and put on his backpack to wait at the door for the bus. Heartbroken, Michael and I would try and get him distracted, get him engaged in something else. But he would just sit beside the door watching for the bus, fat tears rolling down his face.

That army we had amassed to fight for him slowly trickled away. Insurance, at least in this state, looks for any reason to deny coverage of therapies. It demanded that the sweet occupational therapist do one hour of therapy per session instead of the former half-hour, because children (especially those with autism!) are known for their long attention spans. This happened about a year or so ago, so when stuff went all sideways in this catastrophe clown car of a year, the OT was now expected to get Gabriel to attend to therapy for a full hour. Over Zoom. After a few months of struggling with this, we had to do a re-evaluation without the specialist there to administer the test—I was given a questionnaire to fill out, which was the best we could manage given the situation. They were unable to prove through the re-eval that there was progress made, and we were denied coverage. Same deal with Speech. These people we had been seeing in our homes for years that were just as crushed as us had to sign Gabe off their caseloads, with the hope that when things got back to normal we would resume services. 

We expected regression. It is inevitable, with all kids but more so with children on the spectrum. But I wasn’t prepared, emotionally or otherwise, to handle a Benjamin Button scenario play out before my eyes. 

I won’t fully recap it here because I am already in tears, but some of the highlights were: human poop intentionally decorating my walls and furniture, painted afresh every day. Aggression so unexpected and out of control that I had to wear long sleeves and pants in Texas summer because I was covered in cuts and bruises, but putting myself between them was the only thing I could do to keep him from hurting his siblings and deal with his outbursts. Literal weeks of less than two hours of sleep a night...again. Weeks worth of food dumped out on couches, carpets, blankets, floors. Butt-ass naked boy body in our vision every time we turn around. 

Despite our desperate attempts, Michael and I have sat witness to literal years worth of progress erased. Don’t get me wrong: we have faced down each of these problem behaviors and we triumphed over them once again because we are legitimate Bosses. Each time one of those special ops from his team spoke, we were right there taking notes so we would know for the future. Every single issue that arises, we will smack down like the many hands of Durga, slap slap slap slap slap. 

But it will take us actual factual years to get us back to where we started. Not to make new progress, but to re-emerge close to the state he was in at the beginning of this year. And perfect timing, too, since Gabe is creeping steadily toward puberty, a notoriously easy time for everyone involved. And it friggin sucks.

This. This is what I have sacrificed to keep my children and those around us safe. I made the right choice, hard as it was, and I would make it again. Because when we are living in the worst of times, the only thing we have is our humanity—not willfully endangering the lives of those around us feels pretty baseline. 

So shut up about the mask, would you? 

—Andie

Crazy

 Feeling like your mind is not under your authority can make you feel crazy. 

There is a dangerous equation with mental health and attitude in our world. It is one of the most disheartening things I have encountered, having people tell me “change your mind--choose to be happy”. To be sent  “Let Go and Let God” memes, coached on having an “attitude of gratitude” and to “count my blessings”. 

Their hearts are in the right place, but I promise you--if I had a choice, this definitely would not be it. 

No one chooses to be this broken. To shower four to six times a day because you can’t stand the feeling that you might not be clean. Frankly, I’d rather save the water because it ain’t free. To make list after list after list, things that matter and things that don’t because it gives you momentary comfort to see  the structure, everything in its nice little place. Y’all. If I could go into a parking lot and just park….anywhere. Can you imagine the freedom, the power? Of not circling the lot for forty minutes before going into the store, just waiting because someone is in your spot and if you don’t park in one of your designated spots you won’t be able to find your car when you come out and that it will be unfixably, inexplicably bad so we can wait, wait for them to move. 

If could air lift my Checks(™) straight out of my day, could you imagine how much free time I would have? Picture this: you make a sandwich and you just...eat it. You don’t have to page through each ingredient to make sure there is nothing (mayonnaise) on your sandwich, then totally just skip rechecking each layer before each bite just in case. I mean, YOU made it; shouldn’t you know whats on it? Checking to make sure you locked the door, then driving back to make sure, and just once more because it never hurts to be extra cautious. Physically watching the kids go into the school to make sure they don’t get abducted (no, the crosswalk doesn’t count--you have to see them go through the gates to the school)...and then calling the nurse to make sure they made it in. 

After the bedbug trauma, I got my daily checks for them down to a clean (heh, pun) two hours-- take down all the curtains and bedding to wash, take a flashlight and comb the baseboards, the bedframes, the mattresses, the furniture. Every inch to make sure they isn’t a single trace of unwanted tenants. Search everything thoroughly before I sit on it or touch it. It didn’t matter that there hadn’t been any evidence at all of their reemergence, I had to be sure. 

If it was a matter of stubbornly bucking up and making the choice today to not have to, say, do or think things in multiples of fours, I rather think I’d jump on the opportunity. I won’t let you down, sir. Give me a chance to prove myself, because frankly I am a control freak. Such a cute way to put it, right? It speaks to a meticulousness, an attention to detail that will make you an exceptional employee. Instead of a person that cannot transition when plans change to such an intense degree that you just straight shut down. Where I keep such a tight rein on myself and my kids that none of us can breathe from it, a source of unending tension and conflict in the house because I can’t relinquish control of any situation. 

About a year ago (the time line is foggy but the landmarks clearer), having exhausted the limits of my primary care doctor’s attempts to medicate me through this, I met with a mental health professional to discuss a more targeted approach. I sat in that office, folding and refolding my tissue until it was a tidy little square, on the verge of tears because she was going to tell me it was all in my head, there was nothing wrong except my attitude. 

Or she was going to see someone so broken that I was an unfit mother and they would take my babies away. I had already tried so many prescriptions--citalopram, amitriptyline, zoloft, klonopin, wellbutrin, to name a few. I could go into the kitchen and check the Santa cookie jar of failed drug experiments waiting until Texas Tech center does a safe prescription disposal day, but the results were all the same: hopeful optimism, intolerable side effects, limited to nonexistent efficacy. What else was there left to try? Nothing had worked. Not years of counseling, yoga, meditation, prayer, clean diet and daily exercise. 

I had to fill out a questionnaire about how I was feeling that day. Afraid of the repercussions, I lied my sweet fanny off on it, minimizing and rose-tinting just about as hard as one person can. Brits got the stiff upper-lip; Americans have the jazz hands of distract and deny. Don’t worry about me because I am 👋 fine 👋.

Even through all of my bull, she saw the reality: a woman that was hurting so badly on a daily basis that death felt a welcoming alternative. 

Many doctors had given names to what I was struggling with: Postpartum depression, depression, anxiety, panic attacks. Each a piece of the puzzle they were trying to use chemicals to correct, each time failing because it wasn’t seeing the whole image. Like Akinator, her questions started out so gentle and broad as she took notes in the margins of my well-presented fiction, each one getting a little more honed in until you could tell that she had figured you out. Looking up at me from across the desk, she asked: 

“Have you heard of Obsessive Compulsive Disorder?” 

Immediately, I am skeptical, dismissive. Nah, can’t be that. Lots of people I know are the same as I am. It isn’t a mental disorder, I am just particular. 

Don’t you love how we go to professionals for answers just so we can disagree with their assessment?

She explains what the condition is, clinically and in such a way that made it apparent: the way I had been functioning for so many years until felt it felt normal to me was actually a dysfunction. Then she explains why all the medications I had tried had failed--they weren’t intended to treat the symptoms of OCD. She wrote me a prescription for a low dose of fluvoxamine and recommended I purchase a workbook that would help me understand and work through the symptoms. The dose I would eventually need to be on we would have to work our way up to so things were going to be slow and steady and I wouldn’t see a lot of progress at first, but I just needed to be patient and stick with it. 

Most of you have probably heard of OCD before but so we are all on the same page: Obsessive-Compulsive Disorder is a condition marked by excessive and irrational thoughts or fears (obsessions) that may or may not lead to repetitive/ritualistic behavior (compulsions). It usually follows an individual throughout their life and varies in severity at different points. 

The obsessions can take a lot of different forms--fear of germs and disorder is a big one that is portrayed often in media. Usually, the media will focus more on the compulsions as a visual cue for the obsessions; in this case, ritualistic straightening, intolerance for disorganization, excessive hand washing, things of that nature. 

A lot of people can relate to that and even use the condition as an adjective to describe themselves: “Sorry, I am just so OCD!!” There is, as always, a difference between a preferential quirk (tucking in someone’s shirt tag that is sticking out) and a mental disorder (changing your full set of clothes and showering multiple times a day because you feel like you can’t get clean). The defining line is: how long do your compulsions take you to complete a day? If it is in excess of one hour per day, then it is significantly impacting your life. You also can’t control your response for the compulsion, even though you are internally begging yourself to stop because you know it isn’t right, it isn’t healthy. And there is usually not any relief brought by acting on the impulse--it just stops the anxious thought, if only for a minute. 

Other obsessions I have, upon forced recollection through the workbook to identify, dealt with in the past are aggressive thoughts, unwanted or forbidden thoughts, and religiosity. 

Compulsions are the burning urge that you can’t resist until you feel better, kind of like the need to move when you have restless leg syndrome (I recently rediscovered). When I get supremely agitated, for example, I have to count to four. It started in high school when I would stroke down the length of each of my fingers as I counted until I was calm. As you could imagine, I rather loved common time signature in band. Multiples of four also work. Having four kids either worked out perfectly or was a bit more premeditated than I intended, but whenever I have them out in public you will see me doing a pinging head count. 

There are also the ones I mentioned up above, and some others that even I have the pride not to talk about much in a public setting. They can be humiliating, disheartening, crushing. Anything but quirky. 

So back to the story, I guess: we know what it is and that now I have reasonable suspicion that I have it. Now it is just slowly gaining the tools to fight back. 

I saw the doctor every two months as we eased up the dosage. At first, I didn’t notice feeling any better, a fact that actually encouraged her--she reminded me that I wasn’t going to feel better for a while, but the fact that I wasn’t any *worse* told her we were in the right direction. The workbook had me identifying when it first started, learning what the condition was and how I was going to regain control of it. It was two fold: 

1. Identifying my anxious thoughts and confronting them as irrational thoughts. This is tricky because your sneaky OCD brain wants to write these rebuffs to intrusive thoughts as a mantra ritual that eventually becomes a reassurance compulsion. It is kind of like a little talisman you wave to ward off bad luck when what you are really supposed to be doing is training your brain to stop bringing you these dead bird carcass of thoughts to you in the first place.

2. Recognize the compulsions for what they are--a damaging dysfunction--and rewriting your subroutine into healthier coping mechanisms through a process called ERP (Exposure/Response Prevention, not the other thing. Get your mind out of the gutter, gamers)

ERP is where you expose yourself to a stimuli that usually prompts a predictable trigger for you and gradually increase the time before you allow yourself to complete the compulsion. It is kind of like Plato’s  “Allegory of the Cave”--you can’t start out staring directly at the sun, you have start by seeing its reflection in the lake, its shadows on the wall. For me, one of the things I had to work on was laying on the floor for increasing periods of time without going to take a shower and change my clothes. Or drop Emerald off for school at the front of the building but not watch her walk in, then eventually drop her off at the crosswalk and let her walk in from there. 

I need you to know: I get that this was not rational. That at her age, Mom would have probably let me walk the same distance to school from my house, maybe not by myself but with a sibling. But knowing it wasn’t healthy or sane didn’t prevent me from having this reaction because I was unwell. 

So I made the ERP my new compulsion--along with the tenants of mental, physical, and spiritual health I strove toward every day, I built the scaffolding for a stable mental health. 

I saw them for a little less than a year. Each time an appointment would come up, I would ask them: do you have some sort of financial assistance? Is there anything I can do because this money we are budgeting for is coming directly out of our grocery money, our bills. Can we switch to a generic medication? That cost was for the generic, they told me, and couldn’t I just pay it this time, pay it this time and we’ll see what we can do in the future. We’ll look into your options. Finally last month when they called to confirm my appointment, I asked them to take me off of their patient load because I could not justify the cost anymore. I patiently explained one last time that this was outside my budget. The receptionist told me she would discuss it with the office and call me right back. A few minutes later, she does phone back and asks “Have you heard of the app GoodRX? That might help get your med cost down. Now! Are we ready to make that appointment?” I was so stunned at how truly obtuse her solution was--I told her no and to have a nice day. 

Michael and I sat down and discussed it. The medication alone was not my goal; I didn’t want to be on a med for the rest of my life and we hadn’t even gotten up to a dose that was strictly effective yet. (I shudder to think how the price would have skyrocketed at that amount). We were at a crossroads to decide if I wanted to pursue this path. If I chose to, we could make it work--financially, we have been much worse off and we can cut down costs to make sure I had my prescriptions and doctors visits. But to me, it was infinitely not worth it. Thus decided, I had to go through the painful discontinuation syndrome for the last few weeks. 

Discontinuation syndrome is withdrawal from a nonaddictive drug. Your body gets used to things being a certain way and it does not much care for sudden changes, dang it. My particular poison manifested at first in a swimming head--I was so dizzy, I couldn’t watch TV or play video games or be on my phone or anything involving a screen. Every time there was a sharp or loud noise, it grew significantly worse. My emotions were all over the map--I wanted to call the doctor's office and dress them down for being over glorified drug dealers. I wanted it to all end. Mike told me I was being rude nearly every conversation we had.

There were other symptoms like the zaps--electrical pulses like amped up static electricity inside your brain--, face tingling, painful restless leg syndrome, insomnia, nausea and repulsion toward food. But I made it through; I am currently on the other side. But it is the quiet before the storm, the moment when the meds are out of town and the OCD gets to throw a rager. I don't know how it is going to look, but I am gathering my forces to fight back.

This post is because it is Suicide Awareness Week and I wanted to share my experiences with mental health issues because sometimes it helps. Sometimes you have to read someone else going through it to recognize a dysfunction or disconnect in your life, the life of your loved ones. Where the Call of the Void is so strong and so welcoming that it is nearly impossible to ignore because being alive is so hard. Sometimes you don't know why you keep picking yourself up, trudging on ahead because if this is what life is, no thank you. You may not have all the answers yet, but you can't find them if you're not here. Talk to someone--reach out.

They may understand more than you realize.

<3 Andie

Burned Out

I am not doing well. 

Every day that I grit my teeth and push through, I feel more of my health bar burning and turning to ash, sizzling down toward the end. That is Andie I am giving up of myself to keep moving forward, despite the depleted reserves and frazzled nerves. Between hits, I have scarcely a moment to triage before tossing myself back into the fray, head off another day. 

A few weeks ago, I got the unbelievable blessing of getting to go to my church in person. There were scant few of us there, observing social distancing guidelines and wearing our masks, chairs scattered about in the dark as we watched service remotely on a live stream. Sitting there allowing the hymns to swell my heart, I could acutely feel every crack and scar that these last few months have left. I became painfully aware of how broken I had allowed myself to become. I was so very grateful to UCC for making it possible and to God for allowing me, even for such a short time, to realize how essential coming together with our brothers and sisters in Christ each week is. How much I had been taking it for granted. If I walk away from this nightmare of a year with nothing but the health of my family and the knowledge of how lucky we are to worship God together, then this year will not have been a complete loss. 

I am tired...all of the time. Regardless of how much sleep I get, it never feels like enough. The noise level in this house is so constant, so relentless that every sound feels like a physical blow and I flinch like a beaten dog at each sharp note. The simple act of feeding myself, even deciding what to eat, is just an absolute chore--nothing sounds good and I am not hungry. My existence feels like an ongoing fragility where any event, no matter how minor, could send me over the edge and I will just break down and cry again. 

And you know what? I think you feel it, too. 

Caregiver burnout is not something many people have had to face before. It is a spectre that perpetually lurks in the periphery of families with special needs (of any variety), threatening to overtake us should we fail to keep it at bay. The burden of round-the-clock care for one that cannot care for themselves often falls to a family member because the cost of assistance or hiring out is so astronomically high that it remains out of reach for most households. 

As I sit here, my chest heavy with the enormity of another day’s responsibilities, my heart goes out to all of you that are struggling right now. I wanted to give a name to the hurt you are feeling, and to give you hope because you are not going through this alone. 

Maybe I’m way off base. You’re sitting there reading this on your phone, the smell of another perfectly baked banana bread making your stomach growl as you sigh in contentment at another perfect day. Your kids are all clean and dressed and didn’t fight even once today, certainly not over who stepped on who’s empty shoe or who’s turn it was with the vacuum cleaner attachment they’ve deemed a weapon. Coffee was hot and makeup was on fleek and you are -crushing- this global catastrophe thing. 

In which case: friend, I am happy for you and not jealous at all. Good on you, you high-functioning unicorn. 

This post is slightly less for you, then. Maybe you can store the information in the back of your mind alongside your encyclopedic knowledge of “Tiger King” in case it benefits you or someone you know down the road. Or maybe it’ll just give you a glimpse of the struggle some of us are going through right now, give you a reason to be a little more patient, a little kinder to those around you because Lord knows we all need a little more kindness right now. 

No, this post is for the busted down jalopies of human beings struggling through another day. You absolute disasters that served a meal best described as “it’s food—eat it” because you didn’t make it to the store (which reminds you to tell the kids to hold it because there wasn’t any TP on the shelves last time). Those that are considering lining the children up fully clothed in the backyard and spraying them down with the hose in a master shower/laundry sesh of multitasking. The ones that sat down on the floor and cried because it’s 2 o’clock Cry Time and you are so damn sick of everything. 

People like me. 

As with all topics, I am so far from being an expert. But I hope there is a nugget of something here you could use. If there is one thing that resonates, I think that would be enough. 

I actually learned about caregiver burnout when I attended a seminar a few years ago on the topic so I could report back to REACH what I had learned. The seminar was hosted at Abilene Regional and was geared toward those that care for elderly relatives suffering from dementia. A lot of the information was applicable to us as well, though we had to adapt it for our special circumstances. It is okay; we are used to modifying resources to suit unique individuals (Ay-oh, SpEd joke; get ‘em while they’re hot.)

It is estimated that caregivers provided over $216,000,000,000 in cost of care last year, though of course they are not compensated for their time. I would be curious to see the numbers posted next year while untold households across the nation were affected by this pandemic. They are responsible for all duties “assigned or not assigned”, which basically means “the everything” relating to another person--they assist with everyday activities such as cooking, cleaning, driving, managing prescriptions, paying bills, health management, appointments, etc. 

Starting to sound a little familiar?

Stress levels, physically, mentally, and emotionally are reported very high; most suffer from anxiety or depression or both. 

They offered a couple of benefits like engaging you mentally and giving you something to do when you otherwise might not have much, but these are geared toward those in retirement. I am in the prime of my life, watching as I whither away and age before my time under the duress of constantly being needed. But there is one big benefit I have identified. 

Spending time with the kids is undeniably a blessing. They are so funny, smart, wonderful little goblins, even when they are acting like downright sociopaths. The fact that I -can- stay at home, even stretched financially as we are, to care for them is a gift if for no other reason than I am getting this irreplaceable time with them to watch them grow and learn. There are many people in the world, but no one can care for your kids as well as you can--that is just facts. You know them better than anyone, they are a part of you. 

The ugly truth that keeps coming up when discussing caregiver burnout is that there is no cure. A couple hours away, treating yourself to some self-care like getting your nails done or going on a date is not enough to undo the damage that has been accumulating for so long. 

But…

There are some things that are proven to lessen the load. Kind of mitigate the damage as it occurs so there is less to deal with in the aftermath. 

One of which is skills--establishing routines that you don’t deviate if you can help it. I know, it sounds so simple and frankly constricting. But the routine gives everyone expectations and can make an insecure world feel more secure. I encourage the routine to include both essential tasks of every day, like brushing teeth and taking meds, as well as those that you know are good for your soul but you put off. That looks different for a lot of people. Maybe it is taking a run, watching a show you enjoy, or putting on make-up and jewelry. For me, it is reading to my cat Oscar, playing a game with Mike, and writing in my dark closet. Things that don’t take a lot of time but remind you, even when you are most on the fritz, that you are a unique and special human being that has likes and dislikes, things that make you feel whole and like a person. It is a lifeline to who you were before and who you will be again when things get back to some semblance of normal. 

Another skill we are coached to embrace is called Caregiver Grief. It is okay if you are not feeling grateful for this time together. You need to be able to feel upset that you are not getting to do the things you like to do, to miss having adult conversations and social interactions. To miss the freedom of being able to go where you want and do what you want. You are entitled to feel your feelings. Even if those feelings are “I want to throw the dirt in your face for the way you hold a dustpan” when you look at your spouse. Feelings I am sure everyone has had. We can’t always act on those feelings, but if we ignore them and feel like they don’t exist then we end up with a disconnect, wondering why everyone else is doing so well and we aren’t.

There are suggestions like reading about how to diffuse tense situations (I sing absurd parody songs that confuse and confound, take kids outside, make them run off energy—basically anything I can to keep tempers from flaring too hot),  ask for help when you need it, take moments for yourself. 

Treat yourself with exceptional kindness. You are going through a lot and sometimes, you’re the only one you’ll have on your side. Use gentle thoughts, be patient when you struggle or stumble. Don’t beat yourself up for what you didn’t get done, for losing your cool or for not looking your best. Your body’s job isn’t to look good or be productive—its purpose is to house a spiritual being. So today, it did an excellent job. And so did you. 

The last suggestion is find your support.

Isn’t it wonderful that we have communication abilities even despite all that is going on? Nothing beats a face to face with someone you love, but it does the heart so much good to be reminded of all it keeps beating for. Call or text your best friend. Send stupid memes to your coworkers, or pictures of things you think they’ll like. Make social media posts that get people talking and engaged, or write a letter to someone you want to know better. Each connection is a string making up the rope that you are holding on to, pulling you through each moment to the next until you can stand on your own. When everything around you is uncertain, always remember: 

We are all pulling for you.

—Andie