Smash it with a hammer

CW: violence and mentions of self-harm

This morning, at breakfast with my family, I asked my father if he had a sledgehammer I could borrow. He had two questions in response. The first was, “Is this going to be like the jumper cables, or are you going to give it back?”

“You’ve told me to keep the jumper cables, like, five times, because you’re going to buy new ones!” I replied.

“Right, but I keep forgetting to buy new ones.” His second question was, “What size sledgehammer do you want?”

“One that I can swing easily but will still do a lot of damage,” I said.

“I think I can manage that,” my dad told me.

My mother, sitting beside him, listened to this exchange with clearly mounting concern, mixed with unabashed curiosity, turned to my father. “Um. Maybe you should ask her why she wants it.”

My father looked at me. “Why do you want it?” he asked obediently.

“I need to smash something,” I replied.

This answer did not alleviate my mother’s concern or curiosity. “Is this something you should maybe run by your brother?”

My brother, the cop, snapped to attention. “Run what by me?”

I sighed. “It’s nothing illegal. There is an object that I own, in my house, that I need to get rid of. Violently.”

My brother nodded sagely. “You’re going to go Office Space on it.”

“Exactly. See? He gets it,” I said to my mother.

She looked unconvinced, but she said okay and dropped the subject.

I’ll go into a little more detail now, though.

Seven years and four months ago, I decided I was going to have a baby.

Two weeks later, that plan was put on indefinite hold when my immune system went haywire and coordinated an unprovoked assault on all of the connective tissue in my body, plus my skin. Within weeks, I was in constant, excruciating pain, unable to walk from my bed to the bathroom without weeping because every step felt like knives slashing into the soles of my feet.

I have a high pain tolerance. I once walked from an apartment building to my car after falling down two flights of stairs with my foot twisted beneath me, and then operated the gas and brake pedals with a broken foot through three towns without tears. I once went to a work meeting minutes after an elevator door closed on my hand, and did not even mention the incident until someone asked me a question and I had to admit that I hadn’t heard what they said because I was a little distracted by the pain. And then there was also the time I practically had to be forced to go to the hospital with the kidney infection that could have killed me this past summer.

But this pain was absolutely bewildering.

At first, I convinced myself that this pain was a temporary setback.

Even after I was finally diagnosed with a chronic, degenerative disease, I still convinced myself that my life would get back on track once it was treated, and I could get back to my plan of having a baby.

In retrospect, I don’t think I had a clear understanding of what “chronic” and “degenerative” meant. Or how fully they would disrupt my life.

Almost exactly seven years ago, I attended a fundraiser flea market for the Catholic school where my best friend taught. One of the items that had been donated for sale was a white Jenny Lind changing table, in reasonably good condition. It was marked $10. Brand new Jenny Lind changing tables sell for over a hundred dollars.

At the time, I thought it would be a year, tops, before I would be able to go back to my plan of getting pregnant.

I went back and forth about buying it. On one hand, it seemed like jumping the gun. On the other hand, it was a really good deal. My friend’s co-teacher, a sweet old nun, saw me waffling, and my friend explained, “She’s planning to have a baby, but she’s not pregnant yet.”

The nun smiled at me. “Well maybe buying it will be how you can let God know you’re ready.”

Seven years ago, I still believed in God.

I bought the changing table. I put it in the back bedroom. I didn’t rearrange the room to make space for it. I figured I would do that when I actually had to put together a full nursery. The only “open” space for it was against the closet door. It’s pretty lightweight. Easy enough to move it out of the way when I needed to.

A couple years ago, I moved my bed into the back bedroom, too, because it’s closer to the bathroom and the stairs. Anything that cut down on the number of steps I need to take makes life easier.

The changing table is still there.

In the last seven years, much has changed. Nothing has gotten easier. A lot has gotten harder. My back hurts pretty much constantly. I can only be on my feet for 10-20 minutes at a time before I need to sit down. Showering exhausts me. Going up the stairs to my bedroom is excruciating. I need to sit down and rest after I feed my dogs. And the medication I take to keep the pain tolerable leaves me vulnerable to serious infections.

In the past month, I lost my job because of absenteeism related to my health, was diagnosed with diabetes, and had a pretty serious scare with a spot on my liver. I started several new medications, on top of all the heavy duty medications I was already taking. I am probably going to be filing for disability.

Throughout the last seven years, that changing table has sat in the back bedroom, a tangible symbol of the dream I kept clinging to, as I creep ever closer to my 40th birthday. It’s just over 4 months away now. The changing table is still there, taking up space, gathering dust, and accumulating junk, as unused furniture tends to do.

That dream has kept me anchored. It is everything I wanted for my entire life. At the end of the day, the one thing that mattered to me; the one thing I have ever really wanted, was to be a mother. Everything else – career, family, hobbies, whatever – was just details.

Three weeks ago, I realized that it was time to let that dream go. Even if I could still get pregnant, the risks have increased with every new diagnosis and new medication. I don’t have enough energy to take care of myself and my pets and my house on my own. How could I possibly add a child to that mix? I don’t know if I would even be able to carry a baby up and down the stairs – sometimes I literally have to pull myself up the stairs with both hands on the bannister to keep my knees and back from giving out.

And in any case, at this point, I think it’s pretty much a given that my genes need to die out with me for the sake of humanity.

So I will never carry a child inside my body. I will never have a second blue line on a home pregnancy test. I will never feel those first fluttering movements inside of me. No sonogram pictures, or first time hearing a heartbeat, or first cry. No feeding a tiny human that I created from my breast.

I am anchorless now. The only things holding me here right now are my nieces, my animals, and wanting to know what’s going to happen next season on Santa Clarita Diet. I can’t really think too hard about the future right now, because the idea of another 30 or 40 years feels pointless to me. I don’t want to give up on living, but the future that is available to me is not a future that I want. People say that when things don’t work out the way you want, it’s because there’s something better out there for you. I don’t buy it. I think sometimes things just suck. Sometimes the best you can hope for is the outcome that will suck the least.

I mostly manage to hide my grief and rage over being denied this simple desire that most people take for granted. I only cry and scream and bang on the walls when I’m alone.

And sometimes journaling and meditating and lighting candles are insufficient for dealing with emotions this huge. Sometimes violence is the answer. Very few times, granted. But this hurt and anger needs to be expressed.

If I could separate my self from the body I inhabit, I would take a sledgehammer to its bones. I would rip apart the joints that don’t function properly. I would stab and slice through the worthless uterus and ovaries and misfiring glands. I would exact revenge on this defective vessel for every way it has failed me. But I am inextricably bound to this corroded, rusted POS, and any pain I inflict on it, I will feel.

Meanwhile, that damned changing table is still there. There is not enough space for it in my house. It is too close to my bed; I have to squeeze past it to get to the bathroom, or go down the stairs.

It literally blocks me from going where I need to go.

I’ve thought really hard about what to do with this last symbol of the hope I once had for a future that is lost to me. And maybe I should give it away or sell it. But that’s not what I’m going to do.

I’m going to smash it with a hammer.

(PUBLIC SERVICE ANNOUNCEMENT: Any comments asking if I have considered adoption will be deleted. I PROMISE YOU THAT LITERALLY EVERY PERSON WHO HAS EVER EXPERIENCED INFERTILITY HAS CONSIDERED ADOPTION. There are many reasons why it may not be a feasible option for them, or they might not be ready to move in that direction, and no one owes you any explanation for that. And for fuck’s sake, do not ever, ever tell someone who has opened up to you about their struggles with infertility that they could “just adopt.” In the best possible case scenario, adoption is a lengthy, invasive, complicated, and sometimes expensive process, and it does not fix or erase the grief that comes with not being able to have a biological child, and they are allowed to feel that grief. If someone who is experiencing infertility wants to talk about adoption, they will bring it up.)

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The Dog Who Rescued Me

This is Leo.

He’s an American bulldog mix, ostensibly, although there are moments that I suspect he is actually a very large cat. Such as the times he is indifferent to my arrival home, or how he always manages to be underfoot in the most inconvenient places when I am trying to do something, or how he gets irritated with me when we’re in bed and he’s trying to sleep and I won’t stop petting him because he’s so cute, and he’ll give me a dirty look before he jumps off the bed to sleep on the floor.

All in all, these are honestly points in his favor. Although I’ve loved every dog I’ve ever had before Leo, and I adore my sweet pomeranian mix, Daisy, the truth is I’ve always been more of a cat person. Dogs tend to be a lot higher maintenance, emotionally. Very in-your-face in pushy, slobbery, smelly ways. I admire a dog who is a little more independent. And the reality is (sorry, Daisy), I’ve honestly never fallen quite so in love with any other dog as I have with Leo.

In the meantime, the past few days have been awful.

The kind of awful that has had me asking myself hard, dark existential questions, and not being able to come up with any answers that give me comfort.

I’ve been through enough tunnels to know that there’s always a light at the end, but right at this moment, it’s pretty pitch black where I’m at, and I’m honestly not sure that what’s waiting for me in the light is anything I’ll want to see.

I’ve been trying to manage the dark with beer and ice cream and zombie comedies on Netflix for the time being. Don’t judge. The other option right now is ruminating in the dark. If I gave into that completely, I don’t know if I’d ever find my way out. But every so often, the questions still creep in.

It happened just a little while ago, and I suddenly found myself sobbing over my tablet.

And then this good boy, you guys.

Usually when he gets into bed with me he keeps a little distance. He’ll lay back to back with me, or, after he’s checked in and let me scratch his ears, he’ll stretch out with his head by my feet.

But while I was lying here shaking with sobs a little while ago, I felt him climb onto the bed, and then suddenly, a cold nose pushed its way under my arm. He crawled up so his head was next to mine on my pillow. And he stayed there while I cried. Sometimes he watched me, and sometimes he laid his head down and closed his eyes, until I took a shuddery breath and he would look up and just watch my face for a minute. Checking in.

I’ve always agreed with the statement that we don’t deserve dogs, but I’ve never felt it like this before.

I still don’t have any answers. I still am lost and aimless in a way I’ve never been before. But I’ve taken a lot of hits over the last couple of decades, and nothing has kept me down yet. I’ll figure it out.

And while I do, I have this good boy by my side.

Why Kids Don’t Tell

Though I started formal piano lessons in first grade, I had already loved the instrument throughout my childhood, and my father had already taught me to play Chopsticks and the chords of Heart and Soul. Despite my small hands and short, stubby fingers, I displayed an aptitude for music, and picked it up quickly under the tutelage of the sweet music teacher nun at my Catholic school.

At the end of second grade, though, Sister decided that she had too much on her plate and would only retain a handful of private piano students. I was one of the students jettisoned to take lessons instead from the young, pretty Miss D.

Initially I was excited about this, largely because Miss D gave little gifts to her students, dropping off little bags of candy for them at Halloween and Christmas. When I watched my classmates accept these small tokens with envy, I was grimly informed that the bags of candy were basically bribes to buy their silence for how mean Miss D actually was behind closed doors.

This did not worry me as much as it should have.

I will add here that I was one of Miss D’s favorite students. I say that not to brag or pump myself up. It’s simply the truth. I was chosen for various music themed outings with her. I was entered into multiple music competitions, and have an assortment of ribbons and trophies to show for my efforts. I don’t even think it’s an exaggeration to say that Miss D loved me, in her own self-serving way, to the degree that my ribbons and trophies were a reflection of her teaching.

Which makes the way she treated me all the more horrifying, and makes me wonder how awful it was for the students who didn’t have my Teacher’s Pet standing.

From third through eighth grades, I continued to take weekly lessons from Miss D. And I lived those years in a constant state of anxiety about the verbal beat-down I would get during those thirty minutes each week. I didn’t even get a break during the summers – she continued to offer summer lessons with her star pupils.

It’s been over 25 years since I last saw her, and I couldn’t tell you anymore what she said when the yelling and berating began, but I can tell you exactly how it felt. How my fingers would shake and go cold in fear of hitting a wrong note. How dread would settle in the pit of my stomach. How the inevitable mistake would make it that much more impossible to play correctly.

How my knees went weak with relief and I felt like a boulder had been lifted from my shoulders when my 30 minutes of torture ended each week.

The real kicker, though, is that I did have that Teacher’s Pet status, so it wasn’t like that every moment that I spent with her. I also had effusive praise heaped upon me. Both directed at me, and, at competitions and recitals, directed at my family, who were told in ebullient detail about my natural ear for music.

This made it worse, for two reasons.

The first was that the praise naturally made me crave Miss D’s approval, but the threat of her ire was ever present underneath it. She only got upset with me because she knew I could do better. It was for my own good. It was not unlike being a battered spouse, hoping that this time I would make a good enough dinner to avoid a beating, never understanding that the quality of the dinner was never what the beating was actually about.

The second was that the praise that my parents heard ultimately made it impossible for me to ever tell them what those lessons were actually like. By then, I knew that what my classmates had told me about Miss D back in first and second grade – classmates who, incidentally, had long since quit piano lessons – was horribly true, but who would believe it of someone so outwardly sweet and generous who obviously thought so highly of my talent and skill?

As far as I can remember, I tried, once, to tell my father, in about fifth grade. I had to work my courage up to initiate the conversation, and when I did, I lacked the adequate vocabulary to describe what really went on in those lessons. Miss D is mean, I told him. She yells at me. I hate the lessons, and I want to quit.

My dad was patient and kind, and he listened, and then he told me gently how he wished he hadn’t quit guitar lessons, and he didn’t want me to give up on something I was so good at – and wasn’t it true that I could probably stand to practice a little more?

In saying this, my father was not being cruel negligent of my emotional health. He was genuinely trying to do the right thing, and he did not have the information he needed to know how bad it really was.

It confirmed my worst fears, though. I would not be believed.

I never tried again to quit.

If I’d had the vocabulary then that I have now, I would have told him that Miss D was verbally and emotionally abusive. That she was cruel and vindictive in her words. That her gifts were grooming, and her praise was gaslighting. I would have told him that I spent the night before my lesson lying awake in fear of those 30 minutes, and her verbal barbs were as painful as being slapped.

I didn’t know how to say all of this to him. And after the first time he didn’t believe me, I stopped trying.

The end of eighth grade finally provided a welcome separation point. I was going on to a different high school, and my parents agreed that I could try out a different teacher. The only caveat was that I had to tell Miss D myself. The final lesson when I told Miss D I would no longer be her student was fraught with stress. I have always been conflict-averse, and I spent the entire conversation on pins and needles. She tried to manipulate me into staying under her thumb, telling me that the music teacher at my new school wouldn’t be entering me into the competitions and recitals that she always had. I think it was the first time I actually realized that those events were far more important to her than they were to me. I just wanted to play music. I don’t remember how the conversation ended, but I do remember the relief of finally walking away from her for the last time.

And here’s the thing: she was a piano teacher.

Not my parent. Not a family member. Not someone I depended on for food and shelter and love. Not someone I loved and needed to love me back.

I was an adult before I ever revealed to my parents how bad it actually was with Miss D. That it was, in fact, abuse. And clearly I was not alone in this. (In fact, I ended up attending high school with Miss D’s niece. When I mentioned that I’d taken lessons with Miss D for years, my classmate’s response was, “Oh, God, I’m sorry.”) She was teaching before I started lessons with her, and she continued to teach after. No one ever fired her. No one ever investigated her. Some kids were at least able to convince their parents to let them quit lessons, but to my knowledge, no parent ever called the school to complain about her methods.

In the meantime, I had a family that loved me, parents who supported me and were proud of my accomplishments and who, while as imperfect as any other parents out there, were warm and kind and never let me doubt my value. I was able to emerge from the experience relatively unscathed.

Imagine what it must be like for children who have someone like Miss D as a parent. Or a grandparent. Or a family friend who everybody likes.

If it was as hard as it was for me to talk about the abuse of my piano teacher for fear of not being believed, how hard do you think it must be for a child to tell anyone that their parent is hurting them? Or that mommy’s boyfriend is touching them in ways he shouldn’t, even though he makes mommy so happy?

How hard must it be to tell when telling might have one of two outcomes: either you won’t be believed and you’ll get in trouble for telling, or you will be believed, and everything you know will be torn apart?

And how hard must it be to tell on someone you love?

Look.

I don’t want to be alarmist here.

But my general philosophy is that when a kid says a grownup is hurting them, or is making them afraid, it is imperative to believe them. And then take action.

You might be the only person who does.

The Day the Worst Happened. Also: The Day I Learned to Cope.

Obviously, no one who was alive on this day 17 years ago will ever forget it. Even at the time, we all knew this was history in the making. There was a new permanent demarcation of time: pre-9/11 and post-9/11. For my generation, this was our first experience with the likes of D-Day, or Kennedy or King being assassinated. It was the day that we will remember for the rest of our lives where we were when we first heard that the towers had been hit, and how almost unnaturally blue and cloudless the skies were, and how strange it was to look up without seeing a single plane in the air.

But that’s not what this is about.

In all the accounts I read every year, one of the common themes is one of fear in the weeks following, and the feeling that nothing was safe anymore.

It’s notable to me to read these sentiments. I understand them. They make sense. In the aftermath of a massive terrorist attack, fear is a perfectly reasonable response.

But that was not my experience.

I was always anxious, growing up. Everything unknown was cause for anxiety. It would pool in the bottom of my gut on the way to school every morning: what work would I be overwhelmed by? What nasty things would the mean girls come up with to say? What awkward way would I stick my foot in my mouth?

I think I was about 11 when I had my first real panic attack. I had taken a CPR course, and became convinced that I was going to have a heart attack. In my pre-teens. With no history of cardiac issues. Later, it was that someone was breaking into the house. Every night. There was an entire summer that I mostly only slept during the day, because it was safer.

I recognized how irrational my fears were, so I didn’t tell anyone about them. I was also afraid of being teased about them, and having them dismissed as ridiculous. Especially since I already knew they were ridiculous.

This continued to manifest throughout my high school and college years in various ways. I was particularly terrified of diseases, because there was little controlling them. I took urban legends about intentional HIV infections at face value, and news reports about Ebola and flesh-eating bacteria kept me up at night. The one fear I did talk about was my fear of vomiting, only because it was hard to hide the hyperventilating when someone was sick around me.

It also seemed like a relatively reasonable fear. Nobody likes being sick.

My anxiety also manifested over approaching milestones and assignments I felt unprepared for, such as getting my driver’s license and applying for college and financial aid.

What I have come to realize in the last twenty-some odd years is that the anticipation was always worse than the actual event. When I had to take care of a sick and vomiting child, I dealt with it. When I got sick myself, I got through it. When I had to take my driver’s test, I studied for it and did well. Applying for college was far simpler than I’d expected (and they were paper applications back then!).

So when I woke up on 9/11/01, having skipped my first class of the day in favor of sleeping in, and turned on my radio to hear the president speaking gravely of a national tragedy, and then ran out to my living room to turn on the TV and watch the footage of the planes hitting the towers, and the towers collapsing, a strange sense of calm came over me.

When I went to class that day and we spent the hour processing what had happened and what might be yet to come, I felt a sense of cool detachment from the discussion.

When people I worked with panicked about the thought of biological weapons being released from air ducts in local malls and schools over the following weeks, I was the composed voice of reason pointing out that our small college town was unlikely to be a terrorist target.

It wasn’t that I was unmoved by the lives lost in those planes and buildings, or unaffected by the horrifying footage of people jumping from the towers to avoid a slower death by suffocation, starvation, or fire. I understood the gravity of what had happened. I was well aware that all of our lives would be forever changed by what had happened. I was as horrified and grief-stricken as anyone else about the lives lost, and the trauma of the first responders. I’m still angry about how we have failed those first responders who worked tirelessly to find survivors and recover remains without a single thought for their own safety.

But what I finally understood with perfect clarity 17 years ago today was that any sense of safety we had up to the moment the first plane hit was an illusion.

One of the worst possible things I could imagine happening had happened.

And all of us who are still here today survived it.

And to live through that made anything else I felt anxious about seem small and petty. I understood, on that day, that whether or not a mall in Lexington, KY would have anthrax spores released through the vents on a day I was there was completely outside my control – so why waste my energy freaking out about it?

I would be lying if I said I never got anxious anymore.

But that was the day I stopped letting fear rule me.

We’re never actually safe, but in order to live our lives, we have to pretend we don’t know that. But if the worst happens, and we survive it?

Then we pick up the pieces and carry on. It’s the least we can do for those who didn’t make it.

Urban Spelunking

Back when we were young enough to have disposable incomes and time, we would wander periodically through the part of town filled with little shops and cafes and restaurants serving various ethnic cuisines that were not found in the surrounding suburbs we grew up in. Some of the shops – especially the ones that had more illicit products ranging from elaborate glass bongs to flavored glow-in-the-dark condoms – were well established, and being old enough to enter them was a rite of passage. Others came and went, most selling some mix of semi-precious gemstone jewelry and bohemian chic clothing with anime patterned vinyl wallets and used CDs and tarot card decks. There was always enough to look at to make the trip worth passing the day, and always the chance of finding some ring or bracelet I couldn’t live without until I got tired of wearing it.

That day was the first time I’d ever noticed the pet shop, and I never could find it again when I went back. Of course we went in when we saw the puppies in the window, because puppies. The shop was none too clean, but seemed legitimate enough; name brand pet food lined the walls. The puppies ran free through the store, apparently just a litter or two of non-descript mutts. There were birds in cages and hamsters and gerbils in aquariums throughout, but the puppies were the highlight, or so I thought before noticing the entrance to a black metal spiral staircase leading down underneath the store. I peered curiously over the railing, trying to get some sense of what was below. The shopkeeper noticed. “You can go down there,” he told me.

Briefly, I had visions of my face on milk cartons; this was how horror movies began. But the shopkeeper seemed nice enough, and my curiosity won out. We stepped carefully down the metal stairs, and entered a place that didn’t seem possible. Whatever I might have expected, it wasn’t this.

It was dark and cool and a little musty, and smelled of water and shale. Streams ran in a winding pattern through the stone floor, filled with brightly colored fish that also filled the backlit tanks set into the stone walls. The space stretched out the full length of the building. We wandered through what I could only think of as a cave, watching the fish drift lazily through the streams and dart around the tanks. It was quiet, worlds away from the bustling city and rowdy puppies. Just the cave, the water, and the orange and blue and purple fish, and our own thoughts and breathy exclamations of wonder.

I emerged at the top of the spiral staircase back into the brightly lit store filled with rough-and-tumble puppies feeling changed by what I had seen. “Pretty cool, huh?” the shopkeeper asked, and we agreed, wide-eyed.

Months later when I next drove past the spot where I remembered the pet shop to be, the storefront was dark and appeared empty. I’ve long since forgotten where exactly it was. But I still wonder if the cave is still there, and if someone is taking care of the fish.

Or did I just imagine the whole thing?

Adventures in Medical Care

I was hospitalized last week with a kidney infection that I initially mistook for a mild UTI that I could treat from home by staying better hydrated. Even when I woke up last Sunday with a fever and in so much pain that I couldn’t stand up straight, I figured that I would go to urgent care, get some antibiotics, and go home. Even when the nurse practitioner said they couldn’t rule out kidney stones or other infections, and mildly suggested I would probably be better off going to the ER, I said I thought I could tough out the pain at home for a day or two to wait and see. It was only when the nurse practitioner point blank told me, “I can’t force you, but you need to go to the ER,” that I finally acquiesced.

I’ve always had some mild hypochondriacal tendencies, for which I compensate by making a conscious effort not to overreact. This is necessary with a chronic illness, when I have to guess whether my left arm and shoulder pain is arthritis or a heart attack. I generally play the odds and assume that it’s arthritis, which is all well and good for now, but might be a problem if I ever actually do have a heart attack. It doesn’t help that I have a relatively high pain threshold. I totally could have toughed out the pain last Sunday until it killed me. Literally.

The ER doctor decided to admit me to administer IV antibiotics and monitor a spot they’d incidentally found on my liver during the CT scan to rule out kidney stones or appendicitis. They were concerned about the severity of the infection, and the possibility of an abscess on my liver, both of which had the potential to go septic, given my compromised immune system.

Because I have a compromised immune system.

When the hospital transport workers took me from the ER to my new room, I commented to my family that this would be the first time I’d stayed overnight in the hospital since I was 8 years old, when I’d had surgery on my Achilles tendons.

What I didn’t say, but was in the back of my head the whole time I was in that room, was that this probably wouldn’t be my last overnight hospitalization.

Up to that point, I had been able to delude myself into thinking that, aside from the chronic pain and being slightly more likely to catch whatever might be going around, I could lead a relatively normal life. Being hospitalized for what I’d believed, just a day earlier, only required some extra hydration threw me into a tailspin.

I had a follow up appointment with my primary care doctor on Friday, to make sure I was still recovering well with the antibiotics. With him, for the first time, I voiced my fears: “Is this just the beginning? What the rest of my life is going to be like?”

He started to reassure me, and I reminded him that I’d been a frequent flier in his office in the last few months, most recently for shingles. He paused, and smiled. “You recovered really well from the shingles,” he pointed out. Then he admitted, “The meds could have played a part in you getting shingles.”

He told me that he didn’t want to become a hypochondriac, but his threshold for treatment with me, even for something as simple as an upper respiratory infection, was going to be a lot lower than it would be for a normal person. That he would be more likely to prescribe me antibiotics while taking a wait-and-see approach with anyone else, because my body might not be able to fight it off on its own.

That I couldn’t wait before coming in for a mild UTI, because it was more likely to develop into a severe kidney infection.

Because I have a compromised immune system.

So maybe I can avoid being hospitalized again and again if I go to the doctor right away. But I need to go to the doctor right away. No more playing the odds.

And just because I could tough out the pain, it doesn’t mean that I should.

High Hopes

This time of year can be hard for me. It’s when the reminders of the life I thought I would have come back to the surface, and tug at the thread that I’ve gotten better at tucking back in.

It’s hard to say where the beginning of the destruction of that life actually fell. Was it the day I lost my job? The day I finally got diagnosed? The day of my first major flare? The day I realized it wasn’t going to go away? Those were all a progression, a slide into irrevocable, ugly change. I didn’t recognize at the time how dramatically this disease was going to fuck everything up.

But the reminders of the onset of illness aren’t the hardest part.

The hardest part is being reminded of the hope that came before it.

Looking back now, I’m startled by how much time has passed. It’s been seven years since that awful summer that ended life as I knew it, and the future as I planned it. I’m nearing the end of my 30s. I have no idea what the future holds, but I do know the one thing I really want seems less attainable every day, and I have no idea how to make the next 30 or so years feel worthwhile without it. I don’t know how that can ever be a future I want.

I feel like the last seven years have been a way station that I’ve been trapped in, waiting to have a real life again. And a real life feels unattainable to me now. I can’t work a full week without needing to sleep at least most of one day to recover. I am barely able to stay on top of everything I need to do. I get through the day to day with distractions – work, Netflix, cuddling with my pets. And sleep. Whenever I can.

It’s just surviving, though.

I don’t know if I’ll ever be able to thrive again.